Segment 1 Of 2     Next Hearing Segment(2)

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Wednesday, February 4, 1998.





    Mr. PORTER. The subcommittee will come to order.

    This is our seventh session of public witnesses, and we have heard approximately 120 witnesses over the last three days of hearings. We will have hearings this morning, this afternoon, and tomorrow, with additional public witnesses.

    Let me say that we have done our very best to accommodate as many witnesses as we possibly can. We realize that there are more who would like to testify, and we do our very best to include as many as possible and to give everyone a chance.

    We would admonish witnesses that because we have so many in each panel, we would ask that you keep your remarks to five minutes. Witnesses have been very good at doing that. The staff is a little tough because they've obtained a timing device, which you will hear, to remind you when the time is up. At some point in the morning I will probably give my ''sermonettes number one and two'' about the budget process, which some of you have heard many times over now, but let me thank each one of you for coming to testify. It helps us a great deal, and I can tell you that as far as the Chair is concerned, I learn a great deal from our public witnesses.
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    We have scheduled you early because this is a time when votes do not interrupt us, or are less likely to interrupt us. As a matter of fact, up to this point we have not been interrupted at all, and that allows us to hear everyone on our panel without having to run to the floor and cast votes, where we lose a great deal of time. I hope that that happens today; it may not, because there are matters being debated on the floor this morning, and we probably will have recorded votes at some point during the day.

    With all that said, our first witness is Hugh Downs of ABC's 20/20, testifying on behalf of the American Academy of Orthopaedic Surgeons.

    Hugh, it's nice to see you. Please make yourself at home.

    Let me say that it is, in my judgment, extremely important that people who are well-known to the American people stand up for the things that they believe in and make them known to the public. It captures the public imagination, and we very much appreciate your coming here and spending your valuable time to inform us of your concerns regarding orthopaedic matters and the orthopaedic surgeons. Thank you very much.

    Mr. DOWNS. Thank you, Mr. Chairman and members of the subcommittee. I am Hugh Downs, anchor of ABC News' 20/20. I am accompanied by Dr. Michael Ehrlich, who is Chairman of the Committee on Research of the American Academy of Orthopaedic Surgeons, and he is available to answer any medical questions that you might have afterwards.

    He also has a prepared statement that will be submitted for inclusion in the record.
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    It is a real honor for me to speak before this subcommittee in support of the research being conducted at the National Institute of Arthritis and Musculoskeletal and Skin Diseases. This Institute supports basic and clinical research on many of the most debilitating diseases affecting the Nation's health. Your past investments are paying off, and a continued investment in biomedical research will offer the potential for individuals to resume a productive, functional, pain-free lifestyle which is so important to all of us, of which I am a prime example.

    Two years and six days ago, I had bilateral knee replacement at Massachusetts General in Boston. The deterioration over a 15-year period had reached a point where if I walked seven or eight city blocks, I was ready to sit on a curb and wait for a cab because the pain was too overwhelming. It's a source of shame that I don't have a Heismann Trophy to show for ruined knees, but the fact is it was a series of dumb accidents that caused me to fetch up lame. An automobile accident in 1948 stove in my right knee. In 1966, an off-field landing—if you could call it that—in a light plane jammed both knees to the point of mild injury. During an off-trail caper in 1971 in the Tonto National Forest in Arizona, my horse and I parted company and I landed, left knee first, on a stump.

    These injuries all appeared to heal, and I had trouble at that time—and up to that time—believing that there was such a thing as a permanent injury. My philosophy was that you got hurt, and then you got well.

    Well, I learned that this was not true after the final folly in the saga of my knee joints. In 1981, I ran down 34 flights of stairs in a foot race with my grandson, who at that time was 10 years old. Before I got to the bottom, I knew that I had done something very bad to my right knee. In the ensuing weeks, favoring that knee threw enough strain on the left one to harm it, and recovery was not in the cards.
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    Disappearance of the cartilage, with subsequent bone erosion and traumatic arthritis, got a foothold and began to whittle away at my quality of life. Over the years I adjusted and accommodated, and being a denier of some skill, I convinced myself that the feelings produced by that sorry state of my legs were annoyance and not pain, and that was okay, up to a point.

    On getting medical advice about whether and when to consider total joint replacement, the answer that orthopedists always gave was, ''You'll know when.'' Well, they were right, and I knew when in the early months of 1995. The date was set for January 27, 1996, to get total joint replacement in both knees.

    From what I knew of the technology and the current skills of orthopaedic surgeons, I expected a lot from this operation, and I got more than I expected. First of all, it was possible to avoid general anaesthesia. I was able to watch the entire procedure, which was an extremely educational experience.

    I was able to be back in the studio and anchoring 20/20 13 days after the operation, getting around on crutches. As a result of the physical therapy and continuing regimen, I recovered muscles that had atrophied over the years, notably quadriceps, and the pain, of course, disappeared almost instantly. I am amused when people ask me now whether weather changes affect my knees and if I can feel it. I have to remind them that there are no nerves in an artificial joint, and this is a real silver lining.

    After 10 months I found I could run upstairs again. That's something I hadn't done for 12 years. All this was possible because of research. Knees, I am told, are very tricky. The first hip replacement was done in 1914, but the first total knee replacement was 1968, and the rapid progress in the techniques and materials that followed are really impressive. This would not have been possible without the kind of research that produces breakthroughs and improves every aspect of such a procedure.
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    However, I find it curious—somebody told me recently that 60 percent of the total joint replacements are performed on women. I think this may be an area that may need to be pursued. I'm not sure I know why that is.

    I am, obviously, an enthusiastic booster of orthopaedic work, having had successful surgery on the lower spine. It was a fusion in the lumbar region, L4–5, in 1965. In my neck, I had a cervical procedure, C5–6, a bone spur removal, in 1968, in addition to the knee replacements two years ago.

    My bionic constitution, with two and a half pounds of cobalt chromium in my knees, sets off airport security machines more or less automatically. That inconvenience is an easy trade for the agony that I used to have, limping through those things, when I didn't set them off.

    Mr. Chairman, I want to thank you for the opportunity to appear before the subcommittee today and register my support for a continued Federal investment in research, which will allow the remarkable progress and achievements in musculoskeletal research to continue. I believe these are the ''good old days'' of medicine, right now, and I'm sure they're going to get even better.

    Thank you.

    Mr. PORTER. Thank you, Mr. Downs.

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    Can I ask the doctor what the 60 percent reason is? Because you've got my curiosity up.

    Dr. EHRLICH. Women do have a higher incidence of osteoarthritis, sir, than men in the population. In fact, it will afflict about one out of every four adults over the age of 45. That is why the incidence is high.

    Mr. PORTER. I think I will launch into ''sermonette number one,'' if I may, and simply say that this subcommittee has put biomedical research, as you may know, at a very, very high priority. We think that it is among the best-spent money in America in Government because the payback in health care cost savings is huge, and the improvements, obviously, in the quality and length of life are evident to anyone who looks at it.

    I believe that the subcommittee will continue to put it at a high priority. Many of our witnesses have been testifying that what we really ought to do—and we agree with this—is to increase funding for biomedical research, indeed all basic research funded by Government, double over the next five years.

    I believe that this is possible to do, but it depends in large part on what the Budget Committee gives us to work with. I have been asking all of our witnesses to consider that impacting the budget process, as well as impacting the appropriations process, is very, very important in determining what we have to work with and what we can do in respect to funding biomedical research.

    So I am asking all of you to go see John Kasich and tell him that this is important, and perhaps we can get the kind of allocations that will allow us to do the kinds of things that we think are necessary to provide the resources to our research scientists who engage in further breakthroughs in all these areas. They can make a real difference in people's lives.
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    We can't tell you how much we appreciate your coming here to highlight this for us. I think it makes all the difference with the American people; after all, the policies that are done in Washington are done in response to what the American people want us to do, and if they believe that this is a high priority, it will find its way at the highest priority in our deliberations.

    Mr. Stokes.

    Mr. STOKES. Thank you, Mr. Chairman.

    Mr. Chairman, I don't have any questions, but I certainly want to take this opportunity to express my appreciation to Mr. Downs for his appearance here today and to say to him that I, like so many other Americans, have sat in front of my TV set on so many occasions and admired the manner in which you have brought the news and other commentary into all of our homes.

    I also might share with you the fact that, being a grandfather, a few years ago I was trying to play basketball with 10-and 12-year-old grandsons, and in trying to show off and make a three-pointer, I threw one knee out of place and wound up with arthroscopic surgery. The tragedy was, I didn't make the shot. [Laughter.]

    It's a real pleasure to have you here. Thank you so much.

    Mr. DOWNS. Thank you so much.
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    [The prepared statements of Hugh Downs and Michael G. Ehrlich, M.D., follows:]
    "The Official Committee record contains additional material here."

Tuesday, February 3, 1998.




    Mr. PORTER. Dr. Deborah Prothrow-Stith, Associate Dean and Professor, Harvard School of Public Health, representing the National Coalition of Survivors of Violence, Youth Violence Prevention.

    Dr. Prothrow-Stith.

    Dr. PROTHROW-STITH. Thank you very much, Chairman Porter, for allowing us to come before the subcommittee. I want to have this opportunity to give particular thanks to Congressman Stokes for his work on health. When I heard that he was retiring, I knew that one of the Generals in the efforts to promote health in America would be retiring.

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    I want to wish you the best, but I want you to know how much we're going to miss you. We hope that you will enjoy retirement and keep us in your prayers as we continue some of this work. We will come to see you and get your advice, but we will miss you, and I wanted you to know that.

    What we would like to do this morning is share with you three things.

    The first is that the epidemic of youth violence in the United States, considered a public health epidemic, is not over. We have been celebrating reductions in violence and violent crimes in the United States; those reductions are primarily among adults. Young children and teenagers are still becoming more and more involved in some pretty tragic episodes. Now is not the time to retreat. We have some prevention that works, and now is the time for the Federal Government to continue the kind of efforts that it has put in this regard.

    The second point is that prevention works. Across the country we have school-based programs, community-based programs, collaborations between public health and police and social service agencies that work, and Boston is an example of this. We had two and a half years in Boston where we had zero deaths to children 16 and younger by firearms. We had had 30 in the three years prior. It is remarkable that we had zero. And policing has something to do with what happened in Boston, but for 15 years public health people and community people have been working with police, and really set the stage for that decline.

    The second point is that success can work. Prevention can work; we've had those successes, and Boston is an example.

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    The third point that I would like to make is that Federal agencies have been working together in a way that is pretty remarkable and somewhat new. We are really impressed with the way DOE, CDC, OJJDP and NCH have come together to do some training around violence prevention and to fund that. It is important because CDC's Injury Center really reflects the growth in looking at violence as a public health problem, and those successes are directly connected to that growth.

    I have with me Helen Bassett, who is from Minneapolis, and is the founding treasurer of the National Coalition of Survivors. This group reminds me of Mothers Against Drunk Driving. The issue of violence for them is one that we must continue to address, and I would like her just to say a few words.

    Ms. BASSETT. Thank you.

    Good morning, Mr. Chairman and panel. I, too, will miss you, Congressman Stokes, and my best to you as well.

    I am happy for this opportunity and I am thankful to Dr. Prothrow-Stith for her work that she does in violence prevention. She is a champion for us who are out in the communities, losing children.

    I wanted to say that in Minneapolis, you may have heard, we have had some success as well. Attorney General Janet Reno was in Minnesota two weeks or so ago and applauded the efforts of the public-private partnership there. I am active with the group that she brought lauds to, Minnesota Heals, and what I would say is that the prevention side of that are partners around the table in Heals, which includes business and public health and others. We have the resources for law enforcement and we're happy for those. We need help on the community side for public health and for prevention, because it's parents like myself who have lost loved ones who could easily go the way of prosecution and talk about more punishment, but in the end, in the long term, is that really going to save our children? The answer to that is no.
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    We want to save our children, make no mistake about that, and we are ready to partner with whomever we need to partner, if that's law enforcement, if that's business. Whoever that is, we stand ready, but we cannot partner without adequate resources, and those resources we want in prevention and intervention, because our kids can be saved. They are not a lost generation; they are not unsalvageable. At 9 years old, 10 years old, 12, 13, 14, they are still children, just as your children are still children and just as your grandchildren are still children. They are our children, and we absolutely want them saved.

    Dr. PROTHROW-STITH. We will be working with Congressman Stokes' staff to really think about the appropriation for CDC and the Injury Center in particular, but we really appreciate this opportunity to make sure that the issue stays on your agenda, and say that the epidemic is not over. There may be a second wave in rural communities and a third wave involving girls and violence. Now is not the time to stop our efforts.

    Thank you.

    Mr. PORTER. Thank you very much. We hear what you're telling us and its importance. We will do the very best that we can to provide the resources that are needed to get us past this ongoing problem for our country and for our kids. I think all of us feel that way. You already heard my sermonette about how we get those resources, but we'll do our very best.

    Thank you for testifying.

    Mr. Stokes.
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    Mr. STOKES. Thank you, Mr. Chairman.

    I would just like to take a moment to express my appreciation both to Dr. Deborah Prothrow-Stith and to Ms. Bassett for their very kind and warm remarks.

    But also to say, Mr. Chairman, that I've had the pleasure over a number of years now working directly with Dr. Stith. I am very appreciative of the fact that I've had the benefit of her counsel and her expertise, particularly in the area of violence and violence prevention, in the work that she's done with reference to violence in the African American community as it relates to youth. Of course, she is also the author of a very excellent work relative to this subject.

    I just want to say to both of you that it's a pleasure to have had you here this morning. I don't know of any subject that is more important than preventing violence in our society, and I appreciate the reception that the Chairman has given you. I'm sure we'll work with him to try to see if we can't do even more in this area in terms of our appropriations process.

    Thank you very much for coming.

    Dr. PROTHROW-STITH. Thank you.

    Mr. PORTER. Thank you, Mr. Stokes.

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    [The prepared statement of Deborah Prothrow-Stith, M.D., follows:]

    [CLERK'S NOTE.—Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity represented by this witness.]
    "The Official Committee record contains additional material here."

Tuesday, February 3, 1998.



    Mr. PORTER. Our next witness is Dr. Arnold Mitchem, Executive Director, National Council of Educational Opportunity Associations, testifying on behalf of those associations.

    Dr. Mitchem.

    Dr. MITCHEM. Good morning, Mr. Chairman, members of the subcommittee——

    Mr. PORTER. I'm sorry, I neglected to recognize my colleague from Texas, Mr. Bonilla.

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    Mr. BONILLA. Thank you, Mr. Chairman.

    I would just like, before you offer your testimony, to point out to those on the subcommittee who may not know your background and what you're doing, and for those who are here with us at the hearing today, about the outstanding work that you're doing and how you overcame such great odds. I know that you are known officially, of course, as Dr. Arnold Mitchem, but most of your friends call you Mitch. A lot of people may not know that you overcame significant odds to be where you are today, having helped so many young people in communities across the country. Growing up in the 1940s and 1950s on Chicago's West Side, then you had a case of polio when you were younger which also caused you to not have as much use out of your arm as you would like to have, and in spite of having all those things going against you, you graduated from the University of Southern Colorado and then received your Ph.D. from Marquette.

    The National Journal—I enjoyed that article about you recently—did a wonderful piece entitled, ''Making Miracles, One at a Time.'' I think that's an appropriate title for the work that you do, and specifically with the TRIO program that your organization has strongly represented.

    As you know, I can identify with you to some degree. I was also born in a housing project on the west side of San Antonio. No one in my family had ever had an opportunity to attend a university. The TRIO program helps students that come from families like yours and mine to get that first step to go to college. It's a transitional program in which I believe very strongly. It just helps give you that boost to get started; it's almost like getting a jump start, to get your life going into a university.

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    I thought people should know that today before you began your testimony, so welcome, Mitch.

    Dr. MITCHEM. Well, thank you very much, Mr. Bonilla. That was very kind and it is deeply appreciated. Thank you.

    Mr. Chairman, members of the subcommittee, on behalf of the National Council of Educational Opportunity Associations I wish to thank each of you for your support of postsecondary education, and the TRIO programs in particular. I would also like to take this opportunity to acknowledge you, Mr. Stokes, for the historic role that you have played over the decades in building a very strong and positive consensus for these programs.

    I want to make two points today. First, we need to invest in TRIO programs in order to ensure that more TRIO students can succeed in a more complex and expensive higher education environment.

    Second, we need to take a serious look at the erosion of per student funding, particularly in Student Support Services, and its connection with the retention of low income students in higher education.

    Now, in order to expand the services provided by TRIO programs to reach more students, and to provide more intensive services, NCEOA is requesting a $655 million appropriation for fiscal year 1999. This increase will allow TRIO programs to serve an additional 51,000 youth and adults who are seeking or who are currently pursuing a college education.

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    Before I go any further, I want to pause again to applaud the steps this subcommittee has taken in past fiscal years to increase resources which help needy students attend and graduate from college, for increasing the maximum Pell Grant to an all-time high of $3,000, for increasing work study funds, and, of course, for increasing the TRIO funding to $529.6 million, with the significant role that this committee played in conference with the Senate last year. In my view, your dollars have been well spent. In the case of Upward Bound, national evaluations show us now that Upward Bound makes a difference in a student's aspirations and preparations for college. We also know that our Talent Search and Educational Opportunity Centers continue to play a vital role in advising low income families and providing supplemental educational services. The latter, gentlemen, is critical, because studies show that without some intervention, only 28 percent of students from low income families complete the college prep sequence, compared to 65 percent of upper income students who do so without any intervention. No doubt, with increased support Talent Search will enable more low income students to complete a college prep curriculum.

    My second point is that over the past two decades the number of Student Support Services projects has grown dramatically, from 121 to over 800 today, and the number of students served per year from 30,000 in 1970 to more than 175,000 today. The national evaluations of Student Support Services programs show that these programs are having a highly significant effect in terms of the retention of their students in college. Students in Student Support Services were 22 percent more likely to be retained through their third year of attendance at the college where they began than were similar nonparticipants, and had a 77 percent chance of continuing for a third year in college.

    The last point is especially significant and stands in sharp contrast to some data we have from the National Center for Education Statistics. They found that more than 53 percent of students from the lowest income quartile who entered college had not achieved a degree or a certificate and were no longer enrolled four years later.
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    The ability of Student Support Services programs to continue to have such a dramatic impact on the retention of low income students depends upon their ability to deliver intensive and effective services. This ability, gentlemen, stands at risk today, and it stands at risk because the funding for Student Support Services participants has declined from its peak in 1990 dollars of $1,123 in 1970, to a low of $507 per participant in 1981. For fiscal year 1996, the per participant funding is now $867.

    Thus, I ask you to take this into consideration as you consider our request.

    Again, Mr. Porter, Mr. Bonilla, Mr. Stokes, thank you very much for giving me this opportunity.

    Thank you again, Mr. Bonilla, for those very, very kind comments.

    Mr. PORTER. Thank you, Dr. Mitchem.

    I think you have in Mr. Stokes and Mr. Bonilla two really strong advocates for the programs that you have mentioned. Lou has been there on the TRIO program, and the members of the subcommittee believe that it is one of the best programs that we know of for getting results for young people, and have been very supportive. Henry, of course, has been there very strongly on our side of the aisle.

    I think that in our deliberations there are going to be at least two strong voices, and maybe more. All of us hear you very strongly and appreciate very much your coming here to testify and reminding us of the importance of these programs to young people.
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    Dr. MITCHEM. Thank you very much, Mr. Porter.

    Mr. PORTER. Mr. Stokes.

    Mr. STOKES. Thank you, Mr. Chairman. I will just take a moment.

    I would just like to concur with the accolades that were accorded you by Mr. Bonilla. I certainly cannot improve upon the fine treatment he gave of what you have meant to this country and to the field of education. In the years that I've worked with you, I don't know of anyone in the field of education in this country for whom I have greater respect and higher admiration than I have for you.

    At the same time, I want to commend Chairman Porter and the other members of this subcommittee. While for years I have been an advocate on behalf of TRIO programs, the type of increases that we've received over the years could not have been achieved had it not been for the receptivity on the part of the Chairman and the other members of this subcommittee, all of whom have been very sensitive to the types of concerns that you have expressed here today. During the time that I am accorded here, the rest of this term, I look forward to working with them in trying to continue that type of response to the needs of disadvantaged, and in particular minority, children who fall in this range.

    Thank you very much.

    Mr. PORTER. Thank you, Dr. Mitchem.
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    [The prepared statement of Arnold L. Mitchem follows:]

    [CLERK'S NOTE.—Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity represented by this witness.]
    "The Official Committee record contains additional material here."

Tuesday, February 3, 1998.



    Mr. PORTER. Our next witness is Nina Shokraii, Education Policy Analyst, The Heritage Foundation, testifying on her own behalf.

    Ms. SHOKRAII. Mr. Chairman and members of the committee, thank you very much for inviting me today to discuss with you ways to reform education programs within your committee's jurisdiction. I will concentrate on three specific programs, and I offer my recommendations on how to make them more effective by sending them to States—and, more importantly, to families and parents.

    The programs that I am going to focus on are impact aid, bilingual education, and Title I.
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    With impact aid, I recommend voucherizing and sending the entire program to the Department of Defense. This program was established during World War II, providing support to school districts affected by Federal activities, mostly related to relocation of military personnel.

    Because Federal lands are not subject to local taxation, local education agencies receive payments to compensate for revenue losses that resulted from the Federal Government's acquisitions of significant portions of their district's tax base. Today the program receives about $615 million, and it has really, in our opinion, outgrown its usefulness. Since this program is largely designed around children of Federal Government workers who tend to relocate a lot, we feel that it's best to tie the money to the children who move around with their parents from one military base to another military base, and I would like for the money to follow the child from the school to any school of choice, be it public, private or parochial. Transferring this money to the Department of Defense at a $1,000 voucher per child as part of an expanded compensation package would save an average of $285 million. It would also assure that the areas most affected by this influx of students receive the most amount of money.

    The second program I will focus on is bilingual and immigrant education. We recommend block granting it to the States. This program was started in 1967 as part of the Elementary and Secondary Education Act. Initially, Congress did not limit bilingual education support to any one particular instructional method. As you know, in 1974, upon the establishment of the Office of Bilingual Education and Minority Languages, this policy was reversed. Congress mandated at that point that schools use transitional bilingual education instruction methods by which students are introduced to English while receiving their coursework in their native tongue. The Department of Education itself has found that using this method has so far been detrimental to the extent that it takes the kids about six additional years to learn English.
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    Now, the Federal dollars really are only 3 percent of the entire budget of bilingual education, but the Federal mandate and influence in local school districts has made it so that a lot of these school districts are relying more and more on bilingual education instead of other instructional methods. This is actually despite a lot of Hispanic opposition to this program. I'm sure you've heard of the California initiatives by now. Last February, dozens of working-class Latino parents boycotted a school in Los Angeles, protesting that they basically did not want their kids taught in bilingual education courses because they were not learning English. As a result, there was an initiative on the California ballot this year which gives the option of enrolling children in bilingual education courses to the parents of those children. Support for this initiative, according to the Los Angeles Times in October, was 84 percent amongst Latino parents.

    By sending this $261 million program to States, the Governors can use the money to develop whatever programs they deem most appropriate and effective in teaching English as a second language, not one mandated by the Federal Government.

    Finally, with Title I, we are big advocates of voucherizing this program. This program provides funding for local education agencies and schools in areas with high poverty rates. The program benefits approximately 5 million low-achieving students, but unfortunately, three decades and over $100 billion later, the only two longitudinal studies of the program have shown that this program has not been successful in helping children overcome poverty's negative impacts.

    As you know, we are big advocates of school choice. The only two school choice programs existing in this country that help low income minorities primarily are in Milwaukee and Cleveland, and the studies of those programs by Harvard Professor Paul Peterson and University of Texas at Austin Professor Jay Greene have shown that both of those programs are extremely beneficial in teaching low income kids and increasing their academic achievements. In Milwaukee, for instance, the researchers concluded that after staying in the program for five years, the gap in test scores between whites and blacks—and minorities, excuse me—narrowed by 33 to 50 percent, to the point that if these trends continued, that gap would ultimately disappear.
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    In Cleveland, the researchers studied two specific schools that were solely designed to take care of the vouchered children, and they found that the kids who were accepted to this school increased their reading scores by 15 percentile points and their math scores by 5 percentile points, just after being in the program for a year. Now, a year is really not long enough to measure anything, but studies have shown that in the inner cities, especially in places like Cleveland, just being able to maintain your test score at the level that it was when you first started is a big accomplishment. So the fact that these children did better by these percentile points is extremely significant.

    Mr. Chairman, sending these three programs to States as a block grant, or to families as a voucher, instead of bureaucrats, will save the American people money while improving the academic futures of our children, especially those from disadvantaged backgrounds.

    Mr. PORTER. Ms. Shokraii, thank you for your testimony. I have to say that you are in the wrong store. We are appropriators and we have to do what the authorizers tell us, and until we have authority to do the kinds of things that you've suggested, making Title I a voucher program and basically the same with bilingual and impact aid, we have to continue funding them through the existing programs that are authorized by law.

    So your message is really one, in the first instance, at least, for the authorizing committee that sets up the law.

    Let me say that a lot of what you said, I agree with, and I think other members of the committee do; others don't. Let me talk about impact aid, though, because this is a subject that I think I know a fair amount about.
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    Impact aid ought to be, in my judgment, an entitlement program. It's an absolute obligation of the Federal Government to support kids whose parents don't pay the local property taxes that fund the school system, and I think the Federal Government has to meet that obligation. I have in my district the largest primary naval training facility in the world at Great Lakes in North Chicago, Illinois. Like many military bases, the community around it is a very poor community, the third poorest in our State. They don't have a good base on which to tax in the first place, and with 50 percent of the kids in the school system coming from the military base, they absolutely are dependent upon the Government providing some share of the funding, or the school system could not exist. In fact, it almost went bankrupt about four years ago when the Federal Government payments were so low that it actually voted itself into bankruptcy because it had no funds left, until we could straighten that out.

    You might think that Defense wants this program. They absolutely do not. They don't consider themselves responsible for the education of military kids; they think that's a local responsibility, which it is, and they don't want to get involved with it. Therefore if you tell Defense that you want them to take the program—I'm talking about our colleagues in the committees—they will say, ''No way, we don't want it.''

    So if I were to make a change in this program, I would make it an entitlement. I would suggest, by the way, that a $1,000 voucher is way, way short of what the Federal Government has to provide for kids. In this very poor school district that I just described to you in North Chicago, in one of the poorest cities in Illinois, the cost of educating that child is about $6,500, and that's about the lowest in the region. And $1,000 would not do anything to get that kid that education because, again, the school system would simply go bankrupt. It's way short of the Federal Government's obligation, and thank goodness we are providing more money than that, and not shifting the costs of those kids onto local taxpayers who simply can't afford it.
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    That was sermonette number three, I think.

    Anybody else? Mr. Miller.

    Mr. MILLER. I'm glad that we actually have speakers coming before the committee that raise questions about how we spend money, and I commend you for allowing them to participate in this process because, as you know, 98.5 percent—or something like that—are here advocating more spending and more programs, which are good programs and we do support them. But we need to have organizations and individuals willing to step forward and say, hey, we should look at some of these programs.

    I admire you for coming. I appreciate it, and thank you for being here today.

    Mr. PORTER. Let me emphasize that, Dan.

    I think Mr. Miller is absolutely right. We've had a number of witnesses now from Heritage and from AEI and others who are interested in this process and giving us their analysis, and you're one of them, and we very much do appreciate it. I wish we could respond to some of the things you said. The bilingual program, for example, I think you're exactly right on that. I think Henry would agree with what you said, although I certainly don't speak for him. But our subcommittee doesn't have the authority to do what you want us to do, and you've got to get Bill Goodling's subcommittee to look into these matters and see if they can make some changes that make sense for the country and for the kids that we serve.
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    Thank you very much.

    [The prepared statement of Nina Shokraii follows:]
    "The Official Committee record contains additional material here."

Tuesday, February 3, 1998.




    Mr. PORTER. Vera Dorsey, Director, Department of Employment and Training Services, testifying on behalf of the city of Compton, California.

    Ms. DORSEY. Good morning. I bring you greetings from the city of Compton, from the Mayor, City Council and the citizens of Compton, California. We thank you for the opportunity to be here today to testify.

    On a personal note, from my Mayor, Council and citizens, Mr. Stokes, we learned recently of your retirement, and I was asked to make sure that they give you warm wishes for a healthful, restful, peaceful, and relaxed retirement.

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    Mr. Chairman and members of the subcommittee, on behalf of the Mayor and City Council of the city of Compton, California, I would like to thank you for the opportunity to provide testimony related to the city's Department of Employment and Training Services, also referred to as DETS, and the pervasive and very serious challenges facing our community, reducing illiteracy, unemployment, and moving many of our residents from welfare to work.

    For the sake of time, I have abbreviated my written remarks, and I urge the members of the committee to review my full statement when time permits.

    Mr. Chairman, last week the President stood before a national audience and proclaimed that America was experiencing record economic growth and low unemployment. Unfortunately, the rising tide of economic prosperity has yet to reach the battered shores of Compton, California. While we are resilient and determined to bring about an economic regenesis within Compton, city leaders continue to grapple with a stagnant local economy and double digit unemployment levels. While the Los Angeles County unemployment rate is 5.8 percent, and the State and national rates are 5.5 and 4.4 percent respectively, the unemployment rate in Compton is an appalling 14.7 percent, three times the State and county rates and nearly four times the national rate. Additionally, more than 40 percent of the city's residents receive some type of public assistance.

    Over the last two years, DETS has been working towards redesigning its service delivery system in response to Federal and State initiatives geared toward development of a nationwide career center system. DETS is slated to open Compton's one-stop career and human services center this summer. At the same time, the agency is preparing to mount a slate of services for hard-to-serve welfare clients under the new welfare-to-work program passed last year by Congress. Under this workforce program, DETS will provide services which will aid welfare clients in becoming self-sufficient by transitioning them to employment opportunities which offer long-term job retention.
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    Clearly, the program priorities described above provide DETS with ample challenges and a significant workload. Moreover, management and staff are acutely aware that the current financial resources are still insufficient to meet the overwhelming employment and training needs of the community. It is in this vein, Mr. Chairman, as the committee considers funding priorities for fiscal year 1999 Labor/HHS/Education appropriations bills, that the city of Compton respectfully urges the committee to support the following recommendations.

    Number one, Compton urges the committee to support, above the Administration's fiscal year 1999 request, funding for youth training grants proposed at $130 million, and summer youth employment and training programs proposed at $871 million, as well as providing funding for new out-of-school youth programs proposed at $250 million.

    Over the last several years, Federal workforce funding for youth programs has vacillated. With nearly 30 percent of Compton residents between the ages of 13 and 20, DETS continues to struggle to identify solutions for youth employment needs in light of decreased and unstable Federal youth funding. Increased youth funding is desperately needed in order to promote a positive work ethic in youth during their high school years. Such programs also serve as a means of promoting diversion activities for adjudicated youth and others who are at risk of dropping out of school or participating in nonproductive or illegal activities.

    Number two, Compton recommends that the committee continue to support adult training grants, proposed at $1 billion, and increase the Federal one-stop career center program, proposed at $146.5 million. Recently, Congress has attempted to pass legislation to consolidate a wide variety of Federal unemployment and training programs. As stated previously, Compton has taken a leadership role in developing a one-stop center delivery system for its residents; however, this role has brought the financial burden of covering the lion's share of costs for implementing and maintaining the center and associated support systems. Although Congress has made recent appropriations for one-stop system development, additional resources are needed to ensure that all local centers have sufficient financial resources necessary to operate a well-functioning one-stop system of delivery.
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    Compton recommends that the committee continue to support the Department's welfare-to-work initiatives.

    Finally, Mr. Chairman, Compton requests that you support the Administration's request for $250 million, to be split evenly between the Department of Labor and the Department of Education, for the purpose of school-to-work, and $1.5 billion for educational opportunity zones that will aid urban and rural schools with high concentrations of children from low income families.

    Mr. Chairman, this concludes my testimony. Again, thank you for the opportunity to express the views and recommendations of the city of Compton, California.

    Are there any questions?

    Mr. PORTER. Ms. Dorsey, thank you for your testimony.

    I was asking the staff to provide me with the figures in the President's budget, but my recollection on youth training, for example, and summer youth, was that the President had level-funded those from the previous year, and that on one-stop, he had actually cut it. I may be wrong; I'm trying to get the figures right now. Is that what you saw in his figures?

    Ms. DORSEY. I'm not quite sure that it had been cut.

    Mr. PORTER. I was surprised when I saw them because I thought the President would put them at a higher priority, and he hadn't in his own budget. The difficulty often in Congress is that if the President doesn't give weight to these kinds of programs, Congress tends to take his advice on it. So I'm a little bit concerned about his budget on these items.
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    Mr. THOMAS. Mr. Chairman, I'm Robert Thomas, from the City Council as well.

    Mr. PORTER. Yes.

    Mr. THOMAS. We do realize that he did ask for level funding, but if you would look in Ms. Dorsey's full statement, she outlines why there is a need for increased funding for both those programs pertaining to youth training, as well as summer jobs. I think she touched on it briefly in her statement, saying that roughly 30 percent of Compton's residents are between the ages of 13 and 20. Most of them, especially during the summer, have nothing to do, and as you know, there are plenty of other things to do for kids outside of doing the right thing. What we're trying to do is bring about a positive change; instead of being involved in gangs and drugs, to have programs that they can come into and get involved with. I don't know if you know, but Shaquille O'Neal has just opened up a manufacturing plant and has hired kids and has them working within Compton——

    Mr. PORTER. That's great.

    Mr. THOMAS [continuing]. There are a lot of children who have never worked and who have dropped out of school who are now considering going back to finish their education because they've received a job from this plant and other activities.

    Mr. PORTER. You know what I would like to see, and maybe I'm wrong in this—you can correct me if I am—but I think often, and this applies to a lot of different programs, we've gone through a process over a number of years of trying to attract votes for programs by giving some of the money to everybody. I'm not sure that these programs are on that formula, but I can tell you this, that I think we've got to get over that. We've got to put the money where the problems are, and we've got to address those problems forcefully instead of sending the money all of the country where, in some places, it's not needed at all; it simply makes their local tax burden less.
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    Mr. THOMAS. That's what we're saying about the unemployment.

    Mr. PORTER. Exactly. You've got serious problems that need to be addressed; you need the resources, and in many cases we're sending them places that don't need them at all. I can't do anything about that as an appropriator, but I would hope that you would also—I just told the previous witness the same thing—impact Mr. Goodling and the authorizing committee that have authority over these matters, because I think we need to do a much better job of targeting these resources to where they are most needed.

    Mr. Stokes.

    Mr. STOKES. Mr. Chairman, you're absolutely correct, and they're absolutely correct. The problem is a political one, as you and I know. Oftentimes for these types of programs, in order to get them passed to affect the areas where they're needed, we've got to get the votes for them. Therefore, the money winds up going to other places where it's not even needed.

    Mr. PORTER. Lou, I would hope that somehow we're past that, but you probably are right. I just hope this country gets the idea that we've got to get these problems solved.

    Thank you both for your testimony.

    Ms. DORSEY. Thank you very, very much.
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    Mr. PORTER. You came a long way to testify, too.

    Ms. DORSEY. It's very important to us.

    Mr. PORTER. That means it's important, right.

    [The prepared statement of Vera Blanche-Dorsey follows:]

    [CLERK'S NOTE.—Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity represented by this witness.]
    "The Official Committee record contains additional material here."

Tuesday, February 3, 1998.



    Mr. PORTER. Dr. John Sever, Professor of Pediatrics, Children's National Medical Center and George Washington University Medical Center, testifying on behalf of Rotary International.

    Dr. Sever, nice to see you.
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    Dr. SEVER. Nice to see you, sir.

    Chairman Porter, Mr. Stokes, members of the subcommittee, thank you for this opportunity to testify on behalf of Rotary International in support of the effort to eradicate polio and the activities of the U.S. Centers for Disease Control and Prevention. As you mentioned, I am Dr. John Sever; I am Professor of Pediatrics and Infectious Diseases at the Children's National Medical Center here in Washington, D.C., and I am here today representing a broad coalition of health advocates for children, including Rotary International, the March of Dimes Birth Defects Foundation, the American Academy of Pediatrics, Task Force for Child Survival and Development, and the U.S. Committee for UNICEF, to seek your continued support for the global program to eradicate polio.

    Allow me first, on behalf of Rotary International and the coalition, to express our sincere gratitude to you and this committee for your support. For 1997 and 1998, you recommended $47.2 million be allotted each year for polio eradication activities of the Centers for Disease Control and Prevention. This investment makes the United States the leader among donor nations in the drive to eradicate this crippling disease.

    The target year is the year 2000, and that's a thousand days remaining between now and the end of year 2000, to defeat this disease in countries where the polio virus still causes death and disability. The eradication of polio has been and will be achieved through your leadership, and it will not only save lives but also save our financial resources.

    Eradicating polio will save the United States at least $230 million annually. We must continue to immunize children in this country for polio, although there has been no polio in this hemisphere for more than five years. When polio is eradicated worldwide, however, which we're very close to, we will be able to stop immunization, and this will result in an average saving of over $230 million annually.
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    Thanks to your appropriations, the international effort to eradicate polio has made tremendous advances during the past two years. Preliminary estimates that are reported for polio cases in 1997, the last year that this information is available for, indicate there were approximately only 3,500 cases anywhere in the world, and we're well on the way to eradicating polio by the year 2000, as has been projected.

    The CDC is participating very actively in eradication efforts, particularly in those two areas where polio remains, South Asia and Africa. The United States' commitment to polio eradication has stimulated other countries to increase their support. Belgium, Canada, Finland, France, Italy, Korea, Norway, Sweden, Switzerland, Japan, Australia, Denmark, and the United Kingdom are among those countries which have followed America's lead and have recently announced special grants for polio eradication.

    By the time polio has been eradicated, Rotary International will have expended over $400 million on that effort. This is the largest private contribution ever made to a public health initiative.

    For fiscal year 1999, we respectfully request that you provide $67.2 million for the targeted polio eradication efforts of the Centers for Disease Control and Prevention. This is an increase of $20 million over the fiscal year 1998 level, and it is $20 million more than the President's fiscal year 1999 budget request, which was submitted by the President before WHO released the latest estimates of unmet polio eradication needs. The additional $20 million is particularly needed to meet the enormous costs of eradicating polio in its final pockets of strongholds, in sub-Saharan Africa.
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    Of this amount, $6 million would be used to purchase vaccines which are needed for these mass immunizations; $5 million would be provided for operational support of national immunization days in countries such as Liberia, Somalia, and the Democratic Republic of the Congo, which are difficult countries to work in but need to have the disease eradicated to complete the job.

    A further $9 million would go to develop an Africa-wide polio surveillance system and strengthen and expand the existing network of regional and national laboratories to document the eradication of polio.

    Without this additional appropriation, we may not be able to eradicate polio by the target date.

    In conclusion, polio eradication is an investment, but few investments are as risk-free or can guarantee such an immense return. The world will begin to break even on this investment in polio eradication only two years after the virus had been vanquished. The financial and humanitarian benefits of polio eradication will then accrue forever. This will be our gift to the children of the 21st century.

    I thank you for this opportunity to testify and I appreciate your support.

    Mr. PORTER. Dr. Sever, first let me apologize because I think I have mispronounced your name two or three times, and the reason is that I know someone with the same name at home who pronounces it Sever. It's SEV-er.
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    Dr. SEVER. Thank you, sir. I answer to anything.

    Mr. PORTER. Secondly, I'd like to say how strongly I admire the work of Rotary International in taking on this tremendous challenge, and the success that you've achieved and the resources that you've put into it. I think Rotary is on what I consider the cutting edge of the future in public-private partnerships to achieve specific worthwhile ends. I think it's an example for other organizations across our country as to what can be done if people work together. You, of course, have a worldwide membership, but people working together can really put their sights on getting something accomplished. You've just done a wonderful job, and we on the subcommittee want to continue to be as supportive as we possibly can. I can tell you that we will do our very best to do exactly that.

    Dr. SEVER. Thank you, sir.

    Mr. PORTER. Thank you, Dr. Sever.

    [The prepared statement of John Sever, M.D., follows:]
    "The Official Committee record contains additional material here."

Tuesday, February 3, 1998.


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    Mr. PORTER. Gloria E. Reich, Executive Director, American Tinnitus Association, testifying on behalf of the association.

    Dr. Reich.

    Ms. REICH. Good morning, Chairman Porter.

    I am hearing impaired and I experience tinnitus. It is a condition that is shared by more than 50 million Americans. With me today is Dan Purjes from New York. Dan is Chairman of Josephthal & Company and Hearing Innovations, Inc., and a member of our board of directors. In just a few moments he will tell you about his tinnitus.

    Tinnitus is most often described as the perception of sound when there is no external sound present. It can take many forms and be described in many ways. It can strike people of all ages, and for the most part, it doesn't go away.

    For the 50 million Americans who experience tinnitus, about 10 million to 15 million suffer severely and seek help through the health care system. There are still many questions that remain unanswered. The mechanism that causes tinnitus is unknown, and that fact alone makes it impossible to properly diagnose and treat this elusive symptom.

    Furthermore, the personal and social consequences of tinnitus, particularly depression and anxiety disorders, have generally been ignored in favor of a more strictly hearing-based approach, relying on the definition of tinnitus as a symptom of auditory dysfunction. Many people who are the most troubled by tinnitus have relatively normal hearing and are thus deprived the cachet of a legitimate illness. Their head noises are for the most part subjective and idiopathic, and poorly understood, not only by themselves but by the health professionals who treat them.
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    The mission of the American Tinnitus Association is to promote relief, prevention, and the eventual cure for tinnitus for the benefit of present and future generations. Since our inception in 1971, we have seen more than 3,000 scholarly papers, a dozen books, and the formation of workshops, seminars, and support groups to aid tinnitus management. Effective treatments for tinnitus have also proliferated, and most patients can now expect a reasonable degree of relief for this symptom. However, from the point of view of the tinnitus sufferer, research still hasn't produced a cure, and a cure, let me assure you, is what sufferers want.

    Three years ago the National Institute on Deafness and Other Communication Disorders conducted a tinnitus workshop and recommended strategies for research. Last year they funded five studies about tinnitus that addressed these issues. Most recently, they awarded $1.5 million to Doctors Salvi and Lockwood in Buffalo, New York, to study the activity in the brain that may be triggering tinnitus. The Salvi-Lockwood studies and four of the five previous studies were initially funded by ATA with grants that enabled the investigators to produce the pilot data necessary to qualify for Federal grants. These events represent a great stride forward for tinnitus research within the NIDCD, and for that we are truly grateful. Just five years ago the word ''tinnitus'' was not even mentioned in the NIDCD plan.

    The tinnitus community is very grateful to you, Congressmen and Congresswomen, for providing the necessary funding for the NICDC to undertake these projects. We hope this is just the beginning.

    It is extremely important for Congress not only to fund medical research, but to require that the Institutes receiving that funding really respond to the public's need. Hearing problems, and tinnitus specifically, are the most prevalent health issue in this country, but receive little attention in comparison to the more visible life-threatening diseases. Additionally, in an effort to contain medical costs, insurers—both public and private—effectively deny most people treatment for their hearing problems.
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    We know people are concerned because whenever there is a public mention, our phone lines ring off the hook. This week we have received thousands of calls just from one mention in a syndicated column.

    There is a great social cost on society from tinnitus. Up to 15 percent of the people who have it are forced to change jobs or quit their jobs, and these people could be productive members of society if they were relieved of that problem. We ask you to generously support the funding for the National Institute on Deafness and Other Communication Disorders, and to urge them to fund more studies about tinnitus.

    Now I would like to introduce Dan Purjes.

    Mr. PURJES. Congressman Porter, thank you for the opportunity to address the committee.

    A few months ago my friend, an attorney, called me late one night, saying he was sitting on the edge of his bed with a revolver in his hand, about to blow his brains out. He had just come down with tinnitus, with a ringing sound in the ears, it made his life unbearable. Doctors told my friend he may have to live with tinnitus for the rest of his life, and he could not face the prospect of lifelong suffering.

    Over 30 years ago my hearing was damaged in a head injury. Since that time I have had to live with this constant high-pitched hissing sound in my head, 24 hours a day, every day of the year.
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    It is urgent that you support the research of the National Institute on Deafness and Other Communication Disorders through increased funding. People are dying by their own hands, and many more are suffering endlessly while they hope for a cure. I'm one of the lucky ones; I've learned to cope with this condition, though it interferes with my hearing. Many others are so intensely afflicted, the sound in their head is so loud and debilitating, that they end their lives because today there is still no glimmer of a cure. Fortunately, my friend was not one of them, but how close he came that night when he called for my help and understanding, I will never forget. I ask that you give your understanding and help.

    It is estimated that over the coming years, something like one-third to one-half of all Americans will suffer hearing impairment of one kind or another. I have been active in this field, and we desperately need additional funding for more research.

    Thank you.

    Mr. PORTER. Mr. Purjes, thank you very much for your testimony.

    Dr. Reich, do you suffer from this disease also, personally?

    Dr. REICH. I hear the tinnitus, yes; is that what you're asking?

    Mr. PORTER. Yes. I'm asking whether you have tinnitus, as well.

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    Dr. REICH. I consider myself one of the people who are naturally habituated to it. It's there, but it's not an issue in my life.

    Mr. PORTER. It's there, as in Mr. Purjes' case, 24 hours a day, always?

    Dr. REICH. Absolutely. I can always call it up and listen to it.

    Mr. PORTER. As I assume you know, we had William Shatner here last year who talked about his tinnitus and what it meant in his life and his career. We consider it, obviously, a very serious matter that affects a lot of people in our country, millions and millions of people, and I think NIDCD takes it very seriously as well and is doing everything it can to put it at a high priority. We certainly will continue to press them on that.

    We'll do our best to get the funds that they need. You heard sermonette number one or two earlier; we ask you to take that to heart. We'll do our best to put this at a high priority.

    Thank you for testifying.

    Dr. REICH. We very much appreciate your help. We know that you have been doing it, and thank you very much.

    Mr. PORTER. Thank you.
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    Mr. PURJES. Thank you.

    Mr. PORTER. Thank you, Mr. Purjes.

    [The prepared statement of Gloria E. Reich and Dan Purjes follows:]
    "The Official Committee record contains additional material here."

Tuesday, February 3, 1998.



    Mr. PORTER. Our next witness is Talmadge E. King, Jr., M.D., F.A.C.P, F.C.C.P., President of the American Thoracic Society and Chief, Medical Services, San Francisco General Hospital, testifying on behalf of the American Lung Association and the American Thoracic Society.

    Dr. King.

    Dr. KING. Chairman Porter, I want to thank you for your leadership in supporting biomedical research. Without your leadership and the strong bipartisan support of this committee, many of the recent advances would not have been possible.

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    I am here on behalf of the American Lung Association and the American Thoracic Society to speak about the importance of biomedical research in public health programs. This year marks the 50th anniversary of the National Heart, Lung, and Blood Institute. The NHLBI has been steward to phenomenal advances in research and public health. We are pleased by this progress, but note that more work needs to be done. We would like to highlight two areas of concern regarding the fiscal year 1999 budget, and two threats to public health that we need to address.

    The first note of caution is with the Administration's fiscal year 1999 budget proposal. While encouraged with the investment in research in public health programs, we are concerned that much of the Administration's budget is predicated on revenues from the tobacco deal. Enactment of the tobacco deal is neither imminent, nor is it necessarily in the best interests of America. I strongly urge Congress and the Administration to make funding decisions based on the normal appropriations process.

    The second concern is with NIH's management budget. For the past two years NIH's management budget has gotten smaller, while the programs have gotten bigger. To be good stewards, NIH will need appropriate resources to manage their growing research portfolio. We encourage the committee to be mindful of this when providing funds for NIH.

    Mr. Chairman, although we are making progress in prevention and cures of many lung diseases, I want to focus my comments on two diseases—one new public threat, and one old.

    The new public threat is asthma. Asthma is on the rise. An estimated 14.6 million Americans have asthma. Since 1984, the prevalence of childhood asthma has risen 72 percent. Asthma is expensive. Currently, asthma costs the U.S. over $12 million a year. Asthma kills; in 1994, 5,487 children died as a result of an acute asthma attack. That is over a 100 percent increase from 1979. A disproportionate share of these deaths were in African American families, with an age-adjusted rate three times higher than that of whites.
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    Research is bringing answers, and with answers come hope for new treatments and cures for asthma. Within the foreseeable future we expect researchers to fully describe the unique combination of genetic and environmental factors that can successfully address the prevention and cure of asthma. To get to a cure will require a continued commitment to funding asthma research at NIH.

    Asthma also requires a public health response. Supporting asthma surveillance, reducing exposure to environmental asthma triggers, and patient education are needed to control asthma. CDC must play a role in providing the public health response to asthma. This will likewise require a funding commitment.

    The old disease is tuberculosis. Tuberculosis has been with us literally since the dawn of man. Although tuberculosis is a preventable and curable disease, it persists as a health care problem in the United States and globally. Worldwide, there are over 7.5 million new cases of active tuberculosis and 3 million deaths annually. The newest twist on this old disease is the development of multi-drug resistant strains, or MDR–TB. In the United States, some strains of MDR–TB are resistant to as many as seven drugs. Recent investment in domestic TB control programs are beginning to pay off. While the data is still preliminary, we expect the CDC will announce a fifth straight year of decline in domestic TB rates.

    The good news is a direct result of efforts by CDC and public health officials. It is important to continue this area of support throughout the period necessary to establish control of TB.

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    Progress is also being made globally. In fiscal year 1998, the Foreign Operations Appropriations Subcommittee provided USAID with funds for international TB control. To ensure appropriate coordination between U.S. domestic TB control, research, and international efforts, we strongly encourage CDC, NIH, and USAID to enter a formal interagency cooperative agreement regarding U.S. TB control activities.

    We also recommend that USAID, in conjunction with CDC, NIH, the World Health Organization, and voluntary professional organizations, develop an international plan to eliminate TB.

    Mr. Chairman, thanks largely to the generous support of this committee, the research and public health communities continue to make advances against lung disease. We urge this committee to continue to supply us with the tools that we need to achieve a world free of lung disease.

    Thank you for this opportunity to testify and for your ongoing support.

    Mr. PORTER. Dr. King, thank you for your testimony. I have to say that I agree with you, that it's very unlikely that we're going to have—and not a desirable thing to have—a tobacco deal that allows the industry to escape liability for damage already caused. I don't think there's going to be any such deal this year, and a lot of the spending in the President's budget, of course, is supported by that revenue source and others that I believe will not materialize. That means it's going to be much tougher for us to get the kind of allocation that we need to do the things that we put at a high priority.

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    I did hear you very clearly about the management at NIH. When NIH was provided a substantial increase in a budgetary environment in 1995 for fiscal year 1996, that was very much against what was happening in almost every other line item in our budget. We felt that NIH had to take the same burden of restraints on management costs as every other agency under our jurisdiction. We recognize that that has had a pretty heavy bit at NIH in terms of management. They've managed to deal with it quite well, but it is still a great difficulty.

    But we will take into account your concern in that area, and we appreciate your expressing it to us.

    Asthma and TB, obviously, are very serious diseases. My sister suffers from asthma, so I know a bit about it firsthand. We will do the best that we possibly can to provide the funds that are needed to address these diseases of the lungs that affect so many Americans.

    Thank you for testifying.

    Dr. KING. Thank you.

    [The prepared statement of Talmadge King, Jr., M.D., follows:]
    "The Official Committee record contains additional material here."

    Mr. PORTER. You all heard the series of bells that have gone off. What it is is a series of votes on the House floor. I don't know how many votes are involved, at least two. What we are going to do is take one more witness, and then we're going to have to take a recess. I hope that the members can stay. I will come back as quickly as I possibly can and resume the hearing and stay until we complete our morning panel, but obviously it's going to set us back at least 25 minutes, maybe longer. I regret that. This is the first vote that we've had, but there's nothing that we can do about it.
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Tuesday, February 3, 1998.



    Mr. PORTER. B.R. ''Pete'' Kennemer, Chairman, Board of Directors of the National Council for Community Behavioral Healthcare, and Executive Director, Western Arkansas Counseling and Guidance Center, testifying on behalf of the National Council for Community Behavioral Healthcare.

    Mr. Kennemer, you're not going to get your testimony in before I'm going to have to leave, unfortunately. I thought we were a little bit ahead of the second bell but obviously we're not. If you start, I would have to leave in the middle of it, so I'm afraid that this is probably the time for me to declare the subcommittee in recess. We'll get back as quickly as we can.

    We stand in recess until the end of this series of votes.


    Mr. PORTER. Mr. Kennemer, welcome.
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    Mr. KENNEMER. Thank you, Mr. Chairman.

    My name is Pete Kennemer, and I am the Chairman of the National Council for Community Behavioral Healthcare, or NCCBH. Thank you for the opportunity to testify before you today concerning the need for the Federal Government to make an increased investment in the provision of community-based mental health and addiction services. Specifically, we are asking for an increase of $80 million for the Community Mental Health Performance Partnership Block Grant (Mental Health PPG) which has been level funded at $275 million for the last four years. We are also asking for increases of $10 million in the Projects for Assistance in Transition from Homelessness (PATH) and $200 million for the Substance Abuse Performance Partnership Block Grant.

    NCCBH, organized in 1970, is a national trade association representing community behavioral healthcare through its diverse membership of nearly 800 community-based behavioral health provider organizations (community mental health centers), including state and regional associations of providers, networks of providers, and public authorities (State, county and local) which are responsible for the delivery of behavioral healthcare. NCCBH members comprise the spectrum of community behavioral healthcare from inpatient care and intensive outpatient treatment, to addiction treatment, residential programs, and funding of services. In many areas, our members are the gateway to accessing the public health system through both inpatient and ambulatory systems of care.

    One of NCCBH's members is my own organization, the Western Arkansas Counseling and Guidance Center (WACGC), located in Fort Smith, Arkansas. It is one of 15 community mental health centers (CMHCs) in Arkansas and it is similar to the more than 600 CMHCs throughout the United States which provide services to those with mental illness and addiction disorders.
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    WACGC's founding mission in 1960 was to provide affordable psychological services to the citizens of Sebastian and Crawford Counties in western Arkansas. Today, WACGC provides a wide range of coordinated behavioral healthcare services in its 15 locations throughout the six counties it now serves. We provide a comprehensive network of quality behavioral healthcare services to help prevent mental illness and treat the emotionally disturbed. Our programs are designed to be consumer sensitive, outcome oriented, and cost effective.

    Like other community mental health centers across the country, WACGC provides a continuum of services through its network of 15 treatment locations. Services provided include: outpatient care, acute care, individual, group and family therapy, medication management, testing, community support, psychosocial rehabilitation, residential services, vocational and educational services, supported employment, and referrals to primary care physicians, external programs and agencies.

    As President and CEO of WACGC, I know first-hand of the great need for services funded through the Community Mental Health Performance Partnership Grant (formerly known and the Community Mental Health Block Grant). In fiscal year 1997, my home State of Arkansas received $2,232,840 through the Mental Health PPG and $300,000 through the PATH program. Last year, WACGC received $224,585 of those Mental Health PPG funds (which accounts for 3.5 percent of our $6.543 million budget) with out about $88,000 of that being used for children's programs.

    Although the block grant represents a relatively small portion of program spending for my organization, it provides stability for our center—and others like it—which require a reliable source of funding to ensure continuity of care for our clients. Block Grant funds are often used to fund services where gaps may exist in programs or they act as seed money for new programs offering innovative services. However, in some States it provides up to 39.5 percent of the community mental health services budget—a significant base for stability.
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    An example of how WACGC used Mental Health PPG funds during the last year is a nine-year old child, his mother and two brothers who moved into our service area from another State. The boy, ''Brian,'' not his real name, has a history of multiple hospitalizations and special education placements due to behavior problems which include fire setting, physical aggressiveness toward other children and teachers, and poor academic performance.

    Through case management and our juvenile services program, partially funded by the Mental Health PPG, WACGC was able to coordinate treatment for Brian and his whole family. Transportation, child care and temporary food assistance were found through fee community resources for Brian's hard-working mother who held down two jobs. Individual and family therapy was successful in teaching effective parenting skills, finding an after-school program, teaching Brian coping skills and determining better medication levels for him.

    After several months, Brian's behavior improved dramatically. He became less aggressive, stopped playing with fire, running away from home, and hitting his brothers. Peer relations and frustration tolerance improved, as did task completion and eventually his own self-confidence. His mother also benefitted by learning to take charge of her destiny. She is now better equipped to identify problems, seek help, and is more skilled and setting limits with all of her children. She has since bought a car and is independently going to a community college. Her family is functioning at a higher level, consuming fewer services and is in a position to make positive contributions to their community.

    As you can see, services provided through the Mental Health PPG not only improve the lives of those treated, by have the potential to improve the quality of life for entire communities. By providing critical care in a coordinated, timely manner, we are more likely to avoid the long-term costs of more serious health and safety problems which are the results of an over-extended system of care.
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    Over the last 30 years, a growing body of evidence has demonstrated that most people with mental illnesses can be treated more efficiently and more cost-effectively in community settings than in traditional psychiatric hospitals. However, funding to organizations which provide these services through the Mental Health PPG have been left out in the cold.

    In 1993, the first year that community mental health spending by the States surpassed State spending at psychiatric hospitals, the Mental Health PPG received $300.1 million on Federal appropriations. Since that time, its annual funding was reduced to $275.4 million for fiscal 1995 through 1998. If inflation is taken into account, funding has actually decreased by more than $56 million per annum, despite the fact that the demand for community based services has significantly increased since that time.

    Adding to the pressures of an already under-funded program, at least 13 States have closed an additional 21 State hospitals and six more States are planning to close eight more hospitals over the next two years, with four more States planning to merge two or more hospitals.

    Beginning in fiscal year 1998, many State mental health agencies face additional extraordinary and unanticipated new budgetary pressures as a result of the Balanced Budget Act of 1997. The Act included restrictions on the use by States of Medicaid Disproportionate Share (DHS) to support State psychiatric hospitals and other mental health facilities.

    Because many States included mental health DSH as a revenue in their general revenue funds, we believe that the withdrawal of DSH funds will have a negative effect on community mental health services as well as on State-supported psychiatric hospitals. The National Association of State Mental Health Program Directors (NASMHPD) estimates that the new DSH restrictions will result in a loss to the public mental health system of $116 million in fiscal year 1999 and $1.5 billion over the five year period 1998–2002.
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    Another threatening drain on overall State mental health budgets is the recent Supreme Court decision in Kansas v. Hendricks which opens the door to the civil commitment to State psychiatric hospitals of thousands of sexually violent criminal offenders, even if they do not have a diagnosable mental illness. At least 14 States currently have some form of law providing for the civil commitment of dangerous sex offenders and another 41 States submitted amicus curiae briefs in support of the Kansas law. Many of those States are expected to adopt similar laws within the next year.

    Even further, a number of other factors which have led to dramatic changes to our Nation's public mental health system in the last decade can only exacerbate the problem of under-funding: the number of inpatient hospital beds has decreased; a growing number of States have privatized their public mental health system through Medicaid managed care for persons with severe mental illness; and eligibility rules for Supplemental Security Income (SSI) have had great impact on both adults and children. All these changes have compounded the pressure on the already strained local and State public mental health systems.

    Now, more than ever, Federal investment in community-based care is needed to provide the most essential services to our most vulnerable populations. Recent estimates show that the $275.4 million in Federal funds now appropriated to the Mental Health PPG is an increasingly critical source of funding for State and local mental health departments. Moreover, these dollars are being asked to fund a wider and more diverse array of community-based services.

    In order to provide the services which are so essential to our communities and to keep up with the overwhelming demand for those services, my organization's programs and the others like it across the country need an increase in Federal funding to the Mental Health PPG and the PATH programs.
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    The PATH formula grant program, which helps States provide flexible, community-based services to persons who are homeless and mentally ill or who have a dual diagnosis of mental illness and substance abuse, are often the only monies available to communities to support the three levels of service necessary for success with homeless people who have serious mental illnesses, outreach to those who are not being served, engagement of the individuals in treatment services, and transition of consumers to mainstream mental health treatment, housing and support services.

    A 1994 study by the National Association of State Mental Health Program Directors (NASMHPD) documented that roughly 127,231 homeless persons with mental illness were being served by PATH services. This is far below the most conservative estimation of the number in need.

    An increase in Federal appropriations are necessary in fiscal year 1999 to achieve four purposes: one, health care coordination, particularly for services related to HIV/AIDS, tuberculosis, hepatitis, and other communicable diseases and dental care; two, training of persons to work with people with a mental illness/substance abuse dual diagnosis; three, housing support services; and four, increased capacity.

    Although NCCBH and its member organizations were pleased to learn that the President's Balanced Budget Recommendations for fiscal year 1999 include a funding increase of $200 million for the Substance Abuse Performance Partnership Block Grant, we were terribly disappointed to see that the recommendation has left funding for the Mental Health PPG at 1995 levels and the PATH program at 1998 levels.
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    On behalf of NCCBH, I respectfully request that this subcommittee recommend an increase in funding for the Mental Health PPG for fiscal year 1999 by at least $80 million, an increase in funding for the PATH program by at least $10 million and an increase of $200 million for the Substance Abuse Performance Partnership Block Grant.

    As a final note, NCCBH would like to recognize SAMHSA's leadership in convening a consortium of mental health consumer and professional groups like ours in helping to raise awareness about mental illness and to dispel the negative perceptions and stigma surrounding behavioral disorders. On Saturday, May 2, 1998, NCCBH is co-sponsoring a one-mile walk through Washington, D.C., to educate and alert people that appropriate mental health services can prevent minor behavioral health disorders from compounding and that there is the promise of recovery for many people who have serious mental illnesses. You will be hearing more about this effort in the coming months.

    Once again, I thank you for this opportunity to present our requests to your subcommittee concerning fiscal year 1999 appropriations. I would be happy to answer any questions you may have or provide further information at your request.

    [The prepared statement of B.R. Pete Kennemer follows:]
    "The Official Committee record contains additional material here."

    Mr. PORTER. Mr. Kennemer, we appreciate your good testimony. You can be assured that the subcommittee will give it every consideration.

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Wednesday, February 4, 1998.



    Mr. PORTER. Our next witness is Dr. Robert A. Weinberg, Professor of Biology at the Whitehead Institute for Biomedical Research at the Massachusetts Institute of Technology.

    Dr. Weinberg, welcome, and we look forward to your testimony.

    Dr. WEINBERG. Thank you, Mr. Chairman, and members of the subcommittee. I am Robert Weinberg, and I am here today as representative of the Joint Steering Committee for Public Policy and 25,000 of my colleagues in the basic biomedical research community, particularly my own Society, the American Society for Cell Biology. I thank you and your colleagues for the opportunity to present my views to you today.

    My own research is carried out at the Whitehead Institute for Biomedical Research, closely affiliated with MIT in Cambridge, Massachusetts. For the past three decades, I have been involved in research on the molecules inside the human cell; much of my research focuses on the molecular and genetic origins of human cancer. Last year, I was deeply honored to be presented with the National Medal of Science by President Clinton.
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    I focus today on cancer research, using it as an example. It is only one of a dozen major human diseases that are now under successful attack by the research community. Like the others, autoimmune diseases, Alzheimer's, genetic and metabolic diseases and heart disease, cancer is finally revealing its secrets. The fallout from the discovery 40 years ago of the genetic code has descended on us, and now affects, indeed revolutionizes, our understanding of virtually every human disease. Two centuries from now, those looking back will say that we lived during a time of major scientific revolution.

    Still, I don't want to talk today about a century or two of future progress. My vision is limited to the next decade, or at most two. That time line is dictated by the delay between initial scientific discovery at the lab bench, and the resulting impact of that discovery on patient treatment in the clinic. In my own career, as an example, a discovery made in my lab in 1981 has only this year resulted in a new, and apparently highly successful treatment for breast cancer. By the same token, the basic research findings that are now in hand will only have their full impact on medical practice sometime over the next decade.

    I would like to generalize from my own personal experience to that of the research community as a whole. Over the past two decades, my colleagues and I have generated a rich storehouse of information on how cancer begins. Over the next decade, we will draw on this information to develop what I believe will be a number of dramatic new cures for cancers. These advances will flow directly from the rich scientific knowledge base that we have assembled since 1980, most of it deriving from research supported by our Government and enabled by this subcommittee.

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    We now have a clear vision of how to kill tumor cells by forcing them to commit suicide, or by strangling their blood supply, or by crippling their ability to multiply without limit. We have the cells use to stoke their own growth; we have uncovered the molecular clock that prevents normal cells from growing without limit, and in broken form, allows cancer cells to multiply until they become lethal threats. These discoveries are just now being converted into treatments that will be effective in the treatment of people with cancer.

    I want to talk today about how all this can happen, or perhaps, how we may forego the opportunity for it to happen. In spite of the stunning opportunities that I've just mentioned, we are not prepared to take advantage of this rich knowledge bank that we have accumulated. Indeed we have now a data base to convert this basic research into a variety of cures over the next several decades.

    Ironically, at a time when we're poised so beautifully to take advantage of all this basic research information we've gained over this period of time, one thing is not in place, and we're not prepared in the way we should be. Ten, 15, 20 years ago, the young, the smartest and the best of the young people were pounding down the doors of our laboratories trying to get in. And that's changed now.

    Sadly, over the last 10 years, the best and the brightest are no longer flocking to do basic research. The reason being that careers in basic biomedical research are no longer attractive, not because the problems are not compelling, not because there aren't exciting opportunities to make really big advances, but simply because the career of being a researcher has become extraordinarily unattractive, for the simple reason that the career path is strewn with too many obstacles. The university departments are having difficulties to support the training grants to support the training of Ph.D. students. Laboratories have become outmoded.
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    The biggest obstacle is the fact that research funding has become so tight that most young people see correctly at present that the chances of their launching a career and having a career after having gone through eight or ten years of post-undergraduate research are remote, 20 percent probability.

    Therefore, the best and the brightest are becoming lawyers, some are becoming clinicians, some are becoming bond salesmen on Wall Street. They're making good livings, but they aren't staffing the laboratories when we're going to desperately need them, 5, 10, 15, 20 years from now. We've not been able to bring up a new generation of young researchers to take advantage of the enormous opportunities that have been generated by the last two decades of research, much of which, the great bulk of which was funded through appropriations of this subcommittee.

    So I want to make a plea that we begin to recognize the central role played by young people in the age range between 20 and 40 years. They are the people who drive research forward. Yet they are a dwindling research. The quality of them has gone down because of the reasons I've just mentioned.

    One other problem, to close, has come to the fore, in the last five years. The ultimate development of cures for a variety of these diseases is going to depend on what is known as clinical research. Clinical research which is carried out by young physicians who are trained both in laboratory science and in the art of medicine.

    These young people are skilled in understanding basic biomedical research findings and developing new kinds of treatments and yet, clinical research is suffering grievously over the last five years, largely because of the fact that the restructuring of health care has really pulled the carpet from under those who in the past have been able to divert clinical revenues to support research.
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    Therefore, even more than basic biomedical research, which I represent, clinical research in this country is under enormous threat, because the funds that have traditionally made it possible have now in many areas virtually evaporated because of managed health care.

    So I would like to put in a plea as well for that area. It's not my own bailiwick, but an area that is going to need attendance to over the next years if indeed we are going to take advantage of these research opportunities to develop new kinds of treatments for a wide variety of diseases. The information is there, but our ability to effect cures is now under threat for the reasons I've just described.

    Thank you for the opportunity to present these views, sir.

    [The prepared statement of Robert A. Weinberg follows:]
    "The Official Committee record contains additional material here."

    Mr. PORTER. Dr. Weinberg, I think you've presented very compelling testimony and put your finger on things that we had better be worrying about and addressing and solving. The training grants and infrastructure that you mentioned, obviously, we can address directly.

    The tightness of research funding, it's fascinating that we have, if you look historically at NIH, the rate of increase over its whole 50 year history has been at about 3 percent real terms. We have been doing actually a little bit better than that in the last couple of years with low inflation.
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    Mr. WEINBERG. Indeed.

    Mr. PORTER. But you're exactly right, that the number of grants that can be funded as a percentage of those that are competed and determined to be worthy of funding has gone down. The chance of getting a proposal funded is less, even in the face of increasing amounts of money.

    That's because there is so much good research that is available if only we had the funds to do it. What that tells me, and I think a lot of people, is that we have to make a renewed commitment to really increase funding for NIH and basic research and not to look at the historic 3 percent real terms, but see if we can actually double the funding over the next five years, and attract the kind of young people and the kind of talent that is there, but is going elsewhere, as you point out, very forcefully.

    So that's to me a very high priority. Unfortunately, I don't have direct jurisdiction over it, but I'll do everything I possibly can to influence our Budget Committee to take this and run with it.

    I said yesterday, and I'll say it again today, I think the chances of doing that this year are probably not very strong. We can lay a foundation this year and get into peoples' minds that this is important, and what it means to our country, and what it means in terms of lost opportunity, if we don't do it.

    I'm doing everything I can, and I think other members of the subcommittee are as well, to do exactly that. I know you're doing that, and members of the research community and the patient advocacy groups and the pharmaceutical and biotech industries and the like, all I think are raising consciousness of the American people about this subject and why it ought to be a priority for the country.
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    On the clinical research side, again, you're exactly right, the revolution that's gone on in the last few years in how we deliver health care has led managed care not to contract with our academic medical centers, and they are in tough shape in terms of funds to carry on their very important work. We are going to have to, again, it's not my jurisdiction, it's the jurisdiction of the authorizing committees, they're going to have to do something to address this problem and do it forcefully.

    I can do some. I can direct some resources there. But you really need a whole new way of providing a funding base so that clinical research can continue in the way it has in the past. If we don't do that, I think we're all going to be in real trouble.

    So your testimony is excellent, you put your finger exactly on the same problems I think we have to face. All I can say is that we're putting these on a high priority and doing everything possible to address them.

    We thank you for coming here to testify.

    Mr. WEINBERG. Mr. Chairman, we have to build for the next generation. We need the young people.

    Mr. PORTER. Absolutely. Can I ask you one question before you leave? When did MIT begin to do biomedical research?

    Mr. WEINBERG. Seriously in the late 1950s. We now have one of the best, at the risk of sounding self-aggrandizing, one of the best departments in the country. But we started up really almost exactly 40 years ago.
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    Mr. PORTER. Right after I left. I was a student once at MIT.

    Mr. WEINBERG. I didn't know that. A Tech man.

    Mr. PORTER. Yes. Absolutely.

    Thank you, sir.


Wednesday, February 4, 1998.



    Mr. PORTER. Joe Mauderly, Director of External Affairs, Lovelace Respiratory Research Institute, testifying in behalf of the Institute. Dr. Mauderly.

    Dr. MAUDERLY. Thank you, Mr. Chairman. I appreciate the opportunity to describe to you a new initiative that has special significance for the country. I'm here to propose that the Departments of Health and Human Services and Labor participate in an interagency effort called the National Environmental Respiratory Center, which is aimed at understanding the health risks of combined exposures to multiple or mixed pollutants.
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    I don't need to recount the importance of respiratory disease to the Nation. My colleague, Dr. King, whom I know well, put that eloquently earlier. It is a very serious problem.

    We also need to remember that occupational lung disease is a part of that problem, in fact, it's the number one work-related illness in terms of its severity, frequency and preventability, if you will.

    Now, the relationship between air contaminants, be they environmental or occupational, and respiratory disease, is really not very well understood, despite the publicity and the work that's been done. Air pollutants are known to aggravate respiratory illness, and that's easy to understand.

    What we don't understand very well at all is their potential contribution to causing respiratory illness. There is evidence from our lab and others that inhaled contaminants can contribute to causation of diseases like asthma and other respiratory illness.

    One part of this problem is that it's so difficult to understand the relative roles of different materials that people breathe. Different pollutants can have the same effect, some pollutants can enhance the effect of others. It's largely unknown but very plausible and generally agreed by the scientific community that mixtures of pollutants, each at their individually acceptable level, might have an unexpected or unacceptable aggregate risk that we don't really understand at all.

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    Present environmental and work place air quality regulations address pollutants one at a time. That's a problem, because that's not true. Nobody ever breathes just one pollutant at a time. And that's intuitively understandable.

    When you think about it, under our present strategy, it would be considered that an individual breathing all environmental and occupational pollutants, all at the same time, each within their maximum allowable concentration, would have no greater health risk than if they were breathing one of them. Yet that doesn't really pass the laugh test.

    The real issue is not the regulation or their legislative basis. We know that can be changed. The real issue is that we don't have an understanding. There's a lack of research in the area of combined exposures to multiple inhaled materials.

    Now, this kind of research is difficult. It takes some special capabilities. It's not incentivized by the alternate prioritization of single air pollutants that is prevalent in the research community driven by regulatory issues. The National Environmental Respiratory Center is a new interagency, interdisciplinary initiative that's designed to catalyze a new body of research to address this issue.

    The effort was begun this year with start-up funding in the EPA appropriation, but no single agency has the responsibility for this issue. The Center is established at the Lovelace Respiratory Research Institute, which is an independent, non-profit research institute totally focused on respiratory disease, in part because Lovelace happens to be one of the organizations in the country that has substantial experience in combined exposure studies. It also manages a recently privatized Federally-owned facility that's ideal as serving as a physical location for this center.
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    The mission of the Center is to stimulate and facilitate and also participate in a national initiative that will be long range aimed at understanding the health effects of mixtures of pollutants in the environment and the work place. The Center will conduct research, it will be guided by a competitive peer review process. That will be an intramural program. It has no intention of being another granting agency.

    The Center will maintain information resources available to Congress, agencies, researchers and the public. The Center will play an important role in assisting agencies and facilitating communication, planning and coordination to define this issue and define research approaches that will be needed to solve it. Especially in bringing communication to occur between health scientists and atmospheric scientists, which do not talk to each other nearly as much as they need to. And will make specialized facilities available.

    Now, it's very appropriate for the Department of Health and Human Services and Labor to participate in the Center. NIH, NIHS, NCI, has recognized this. It's especially appropriate for NIOSH, because of occupational concerns for mixed exposures are recognized in its strategic plan. But there's very little research support actually in this area. It's a very complicated problem.

    So Mr. Chairman, we seek your committee's help in encouraging the agencies under your purview to recognize the issue and to participate in moving this initiative forward.

    Thank you for the opportunity to testify.

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    [The prepared statement of Joe Mauderly follows:]
    "The Official Committee record contains additional material here."

    Mr. PORTER. Dr. Mauderly, where is Lovelace Institute?

    Dr. MAUDERLY. It's in Albuquerque, New Mexico.

    Mr. PORTER. Albuquerque. When was it established?

    Dr. MAUDERLY. Lovelace is an organization that goes back to the pre-World War II era. It developed a substantial research component as well as a health care activity in the post-war era.

    Mr. PORTER. I'm sorry, I meant the National Respiratory Health Center. When was that established?

    Dr. MAUDERLY. The National Environmental Respiratory Center is being established as we speak. The initial funding was in this year's EPA appropriation. So it's a new initiative.

    Mr. PORTER. Was that initial funding in the EPA appropriation according to an authorization that was previously passed?

    Dr. MAUDERLY. That was language that was put in the appropriation along with funding for a number of other centers and activities related to air pollution issues.
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    Mr. PORTER. What I think I'm hearing, I just want to get the concept that you want us to encourage certain agencies under the jurisdiction of these three Departments and under the jurisdiction of the subcommittee, to look into support for the work of the Center.

    Dr. MAUDERLY. That's right, the work of the Center and related support. I'm asking and encouraging your awareness of the issue, the awareness of the agencies of the issue, in general, as well as specific support for the Center. We know that 20 years from now, we can't be addressing either work place or environmental air contaminants one at a time in isolation as we have been for years. This is an initiative to move us forward into designing another paradigm.

    Mr. PORTER. Well, we appreciate very much your testimony today. You've educated me on the existence of the Center and what Lovelace does, and I appreciate that very much.

    Dr. MAUDERLY. Thank you.

    Mr. PORTER. We'll do our best.


Wednesday, February 4, 1998.

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    Mr. PORTER. Kenneth G. McInerney, President, Committee for Education Funding, testifying in behalf of the Committee. Mr. McInerney.

    Mr. MCINERNEY. Good morning, Mr. Chairman. I am Ken McInerney.

    Mr. PORTER. Unfortunately, it's afternoon.

    Mr. MCINERNEY. Good afternoon. [Laughter.]

    I am Ken McInerney, of the National Association of Student Financial Aid Administrators. I'm here today as the President of the Committee for Education Funding, which is a non-partisan coalition founded in 1969 with the goal of achieving adequate Federal financial support for our Nation's educational system.

    The Committee is the largest coalition of educational associations in existence, with over 90 members, whose interests range from preschool to adult and post-graduate education in both public and private systems.

    Let me first begin, Mr. Chairman, by recognizing the outstanding efforts of you and members of your subcommittee in making education funding a priority during the last two fiscal years. We are particularly appreciative of the strong, bipartisan support education programs have enjoyed in this subcommittee. We look forward to helping you make this a tradition that reaches many years into the future.
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    During the past two years, Federal discretionary education spending has grown by $7 billion, which has helped restore cuts enacted in the previous two fiscal years, and provided growth and investment in critical programs that expand educational opportunities for Americans in all stages of life. These increases, however, must be considered in a larger context. Over the past 15 years, deficit reduction efforts forced cuts in Federal education funding, both as a share of the total Federal budget and as a share of the total support for education.

    America now faces a host of new challenges to our educational systems, including rising enrollments, more students with special needs, increasing teacher shortages, overcrowded, unsafe and outdated facilities, rapidly advancing technology and continued access to post-secondary education for low income students.

    Mr. Chairman, as we begin the debate on fiscal year 1999 funding, which I note will affect the 1999–2000 school year for many programs, the Committee for Education Funding asks that you and your subcommittee, to carry forward your momentum from the previous two fiscal years, and make a comparable investment in America's children, youth and adults in fiscal year 1999.

    The United States today has a unique opportunity and a strong incentive to invest in the future. The American economy has never known such sustained growth. We have never been so free from external threat or domestic crisis. We enjoy the highest standard of living in the world. We have slashed Federal deficits and can anticipate years of surpluses, according to the Congressional Budget Office.

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    If we are to maintain and enhance these accomplishments into the 21st century, the Federal Government must continue to provide and promote activities that ensure future economic vitality, personal security and expanded opportunity for all Americans. Investing in education now is the surest way to meet these goals.

    As you know, America's system of education, from preschool through graduate education, has played an essential role in our Nation's success. We must build on these successes and again make education a major part of America's strategic plan. We need substantial new Federal investment in education, not incremental increases, to meet these challenges.

    Mr. Chairman, you should know that CEF, the Committee for Education Funding, supports the President's efforts to open up new revenue streams for education through tax expenditures and mandatory spending. We must reiterate, however, that it is vital to maintain and enhance support for the core proven education programs within the jurisdiction of this subcommittee, which have been held back, not from poor design, but from inadequate funding.

    In addition, we urge you to provide adequate funding for those important education programs proposed for reductions or level funding in President Clinton's fiscal year 1999 proposal. We also note that the budget agreement reached last year continues spending constraints on discretionary spending for the next several years. We recognize the pressure that this creates by pitting health research programs and education programs in competition.

    We are ready to continue working with your subcommittee and with the health research community, with whom we have worked in recent years, to secure a budget allocation and new resources adequate to accommodate significant investment in both of these important areas, which may include re-examining the current statutory appropriations caps.
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    In addition to creating a supportive climate for education, Mr. Chairman, we must understand that education is a pipeline. What we do for the youngest in our society has long term effects on test scores, graduation rates and success beyond school. Elementary education must provide a solid academic foundation to prepare for secondary school. Middle schools and high schools must challenge more students to meet higher standards, so they are successful in post-secondary education. Vocational technical community colleges and universities must assure students are prepared for lifelong learning on the job.

    We can sustain our success by preparing for the future. The Committee for Education Funding urges Congress and the Administration to prepare for a future that is brighter than ever before, and we thank you for the opportunity to testify today.

    [The prepared statement of Kenneth McInerney follows:]
    "The Official Committee record contains additional material here."

    Mr. PORTER. Mr. McInerney, I realize I'm keeping all the witnesses a long time, and I'll try to be brief. The sermonette that I gave earlier, often I give it in respect to someone who is testifying regarding biomedical research, because many of our witnesses are witnesses who testify on that broad subject.

    But it is meant for everyone. We have to get the allocations that we need to provide funding for all of the priorities under our jurisdiction. The help of people concerned about all of those priorities is needed to assure that the allocation is forthcoming.

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    I don't want people to think that I'm limiting it at all. Obviously we have, I think, under our portfolio, very many very important programs to help particularly people at risk. Kids are always the most important, obviously, and education funding, as you say, is really the future of this country. With that we agree very much.

    So any help you can give us on the budgetary side will be reflected in our looking at these education programs in a much more favorable light with more resources available.

    Mr. MCINERNEY. Thank you, Mr. Chairman.

    Mr. PORTER. Sermonette number three. Thank you, Mr. McInerney.


Wednesday, February 4, 1998.



    Mr. PORTER. James T. Cordy, Chairman, The Parkinson Alliance, testifying in behalf of the National Parkinson Foundation, Inc.

    Mr. Cordy.

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    Mr. CORDY. Thank you, Mr. Chairman.

    You mentioned you have a new timing device. I brought a rather old one with me. If it holds together for five more minutes, I'll be happy.

    Mr. PORTER. It looks like it has a lot more than five minutes in it.

    Mr. CORDY. Mr. Chairman, members of the Committee, my name is Jim Cordy, and I have Parkinson's disease. Formerly, I was an engineer in research and development in a specialty steel company. Parkinson's forced me onto disability three years ago.

    Currently, I am President of the Pittsburgh chapter of the National Parkinson Foundation, a member of the board of directors of the National Parkinson Foundation in Miami, and the new leader of the Parkinson's Alliance. I'm also proud to say I'm part of that magnificent grass roots effort that saw passage of the Morris K. Udall Parkinson's Research and Education Act. I'm here today to give testimony in support of fully funding that authorization.

    This hourglass serves several functions. Hopefully it will help me stay within my allotted time. It also is intended to convey to you that we who have Parkinson's are in a race against time. Just as the top chamber is depleted relentlessly grain after grain, so is my top chamber, my brain, losing brain cells which control movement day by day.

    The Parkinson's Alliance is not another organization. Rather, it's a loosely organized overlay of the current organizations. It's the voice of the people with Parkinson's. Those people first want to say thank you, to you and your committee, for allowing the Udall bill to be amended to the appropriations bill. Obviously you appreciate the broad based bipartisan support this bill has.
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    This was demonstrated last year in the 95–3 roll call vote before the Senate and by the 255 cosponsors that we managed to amass in the House.

    The overwhelming majority of neuroscientists agree we are poised in the threshold of curing this sinister disease. This hourglass is an attention getter which I hope distinguishes my testimony at this busy hearing. Yet the promise of an near-term cure for Parkinson's disease is no gimmick. It's doable, and it's doable now.

    As I speak, researchers from all over the world are assembling in a meeting in Arizona to discuss that promise. Let us provide them with the resources to make that promise a reality. Find a cure and then direct those resources at other diseases.

    If we as a Nation don't find a cure or new effective treatment for these age-related diseases, when the baby boom ages, it's going to devastate any attempts we've made to date to balance the budget.

    There are two other economic points which favor increased funding of Parkinson's disease research. Currently, NIH research funding is measured by dollars per person afflicted. It's simply not equitable. Second, Parkinson's is estimated to cost society $25 billion a year. If this $100 million a year investment in research leads to a cure, every dollar spent will save $250. That's an ROI that any private industry would pass in a minute.

    I'm here today to help give Parkinson's a human face. Parkinson's disease is a degenerative disease of the brain. As a result, my hands and legs sometimes shake and my body stiffens. I have witnessed these slowly but sure erode my physical abilities. I can no longer tie my tie, wash my hair or tuck in my shirt. I can't shuffle papers in my office, nor drive my car.
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    I have lost facial expression, a sense of smell, and I now have a monotone voice. I wouldn't be here today if that was the extent of my problem. Unfortunately, those are just previews of the horrors to come if we don't find a cure for this sinister disease.

    What terrifies me is the real possibility that I could end up like Mo Udall, bedridden, unable to talk or move. I sometimes think I do not serve the Parkinson's community well when I come to Washington. For when my medications are working, I approach some degree of normalcy. Perhaps as I walk away from the table, some may think, he doesn't look so bad.

    Those medications without which I wouldn't be able to function lose their effectiveness with time. They're beginning to, they're just happening to me now. I'm falling behind in my race against time.

    The image I want to leave you is the image of the horror of Parkinson's. A woman from California wrote to tell me of the death of her mother, a former Olympic athlete who had Parkinson's. She described how this once athletic body had shriveled to 60 pounds and had assumed a constant fetal position for the last several years. That's the image of Parkinson's I want to leave with you, that and the promise of a cure.

    Let me assure you that I'm not going to sit back and wait for my body to stop working. I'm determined to win this race, but I need your help.

    Before closing, let me turn this hourglass over. The top chamber is replenished, just as a scientific breakthrough that cures Parkinson's will replenish my brain of the cells which control movement. Don't let time run out for me and the one million Americans who have Parkinson's. Not when the finish is in sight.
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    Thank you.

    [The prepared statement of James Cordy follows:]
    Offset Folois 3005 to 3010 Insert here

    Mr. PORTER. Mr. Cordy, that was five minutes, wasn't it.

    Mr. CORDY. Four minutes and 56 seconds.

    Mr. PORTER. Perfect. [Laughter.]

    I had the wonderful honor and pleasure of being able to serve part of my time in this body with Mo Udall. I often say I had a wonderful trip to Alaska with Mo Udall, best trip I ever took with anybody anywhere, in 1987, right about the time when the disease began to really slow him down.

    I don't think there is a member of this body in memory who has more respect or friends and more people who care about him. In addition to Mo, you know we have two members of the House, two members of the Appropriations Committee, as a matter of fact, Joe Skeen of New Mexico and Joe McDade of Pennsylvania, both who have Parkinson's disease.

    I can tell you without fear of contradiction at all that these two gentlemen, maybe particularly Joe, have just been absolutely the strongest advocates for getting research funding into Parkinson's that you can imagine. They would certainly tell you that out at NIH as well.
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    We put this at a very, very high priority. We understand the nature of this disease and how it affects people. We want to do everything we possibly can to provide the resources and science so we can get a breakthrough and prevent if from happening in the future. We're going to do our best for you, absolutely.

    Thank you for coming here to testify.

    Mr. CORDY. Thank you. Mr. Chairman, this advocacy effort has been a learning process for me. One of the learning processes was today, when I gained new respect for you, sir, as you sit here individually and listen to each and every one of these witnesses.

    Thank you.

    Mr. PORTER. Thank you. Can we borrow your hourglass? That might be far more effective than our device here. [Laughter.]

    [CLERK'S NOTE.—Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity represented by this witness]


Wednesday, February 4, 1998.

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    Mr. PORTER. Laurie Flynn, the Executive Director, National Alliance for the Mentally Ill, testifying in behalf of the Alliance.

    Ms. Flynn.

    Ms. FLYNN. Thank you very much.

    Good afternoon, Mr. Chairman. I want to say how pleased I am to have the opportunity to share some thoughts from NAMI members with you this afternoon.

    NAMI is the Nation's largest grass roots organization representing people with severe mental illnesses and their families. We are 172,000 strong in over 1,100 communities in all 50 States.

    As you well know, Mr. Chairman, research is vitally important to people with severe mental illness who live each day with devastating brain disorders such as schizophrenia, manic depressive illness, clinical depression and severe anxiety disorders. Scientific advances led by NIMH funded research is heralding today a new era of hope for persons who struggle with these illnesses. Treatment that's been made possible by new science is making a real difference in promoting independence and recovery for more and more individuals with these very difficult diseases.
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    In fact, my organization has been able to use some of the results of NIMH science to help communicate an important message that these are brain disorders, despite myth and ignorance, and that treatment is increasingly successful. The clear evidence from this science also helps us enormously in our battle to reduce the stigma that's often unfairly attached to a mental illness diagnosis.

    Mr. Chairman, NAMI members across the country are deeply grateful to you and to members of your subcommittee on both sides of the aisle for your vigorous and sustained leadership in bringing record increases to the NIH budget. We are especially gratified to see and do applaud the President's recently announced budget proposing $1.15 billion increase in the NIH overall appropriation, and a nearly $60 million increase for the NIMH.

    These increases will be, we think, a wonderful way to close the decade of the brain and will build on the remarkable advances we have seen in neuroscience during this decade.

    While NAMI members enthusiastically support NIH and NIMH, we are urging that more attention be focused on the most severe and disabling illnesses. NAMI reviews the NIMH portfolio each year, and we continue to document a large share of the portfolio that is directed to broad behavioral and social science research that we think misses the importance of NIMH's historic mission focusing on severe mental illnesses as a public health priority.

    We have had a very extensive and productive dialogue with leaders at the NIMH who have recognized a 10 percent drop in research on schizophrenia in the past year, and have further recognized they need to strengthen their focus on bipolar disorder.
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    Mr. Chairman, NAMI is not suggesting that Congress micromanage NIH or earmark funds. Rather, we are recommending that new and additional resources that may become available focus strongly on the most severe and disabling illnesses.

    NAMI believes research on these brain disorders has the greatest potential payoff for American taxpayers over the long run. Most importantly, we know that research on serious mental illness saves lives. My own daughter, Shannon, who was diagnosed with a severe mental illness, is one such example. Despite over 10 years of illness, Shannon today, thanks to research based treatment, graduated from Georgetown University, lives on her own in an apartment, holds a job. Last fall, in the realization of a long-held dream, she returned to graduate school.

    We know that this kind of success is possible for many thousands more who are afflicted with some of the most mysterious illnesses known to humankind.

    Finally, Mr. Chairman, with regard to the Substance Abuse and Mental Health Services Administration and the Center for Mental Health Services, NAMI wants to express disappointment that the President has once again proposed to freeze all funding for CMHS programs. As you've heard earlier, pressures on State and local mental health systems are growing by welfare reform efforts to put violent sexual predators in State mental institutions, Medicaid disproportionate share cuts, and most especially as you've heard, the growth of managed care in the public sector.

    This intense pressure to conserve dollars is felt most acutely by people with serious mental illnesses. They and their families are too often forced into the public system because of inadequate and discriminatory private health insurance and public programs that trap them in a dependency based system. While we are as a Nation making progress on these issues, with the focus on parity legislation at the Federal and State level, the availability of new treatments and efforts to reduce stigma, more needs to be done.
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    One small step would be to urge greater effort by CMHS for initiatives that educate and support vulnerable consumers and their families in coping with systems change.

    Thank you very much, Mr. Chairman, for this opportunity to testify. Thank you again for your compassion and for your leadership on these health issues.

    [The prepared statement of Laurie Flynn follows:]
    "The Official Committee record contains additional material here."

    Mr. PORTER. Ms. Flynn, thank you for your testimony. I say often, and I think this is very important, that if you talk to scientists at NIH, they would I think very quickly agree, we know a great deal about the rest of the body. We don't know nearly enough about the brain. This is where we must put resources, and put it at a high priority, because this is where our knowledge is the least.

    I think often the public looks at the debates on the Floor of the House of Representatives and at hearings before committees as well, that that's where all the business of Congress goes on. Actually, I had a very good discussion on the way over to the floor on the last vote with Sander Levin, a member from Michigan, whose wife works out at NIMH, about priorities in mental health research funding that parallels exactly what your testimony has been highlighting for us today.

    Obviously, that helps me in working on the priorities and funding for the subcommittee as well. That's often the way legislation is addressed, member to member, that no one ever sees. It works well, along with the obvious input and education that we get in having the opportunity to hear from you and your fellow witnesses in hearings like this.
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    So thank you for coming to testify today, we appreciate it very, very much.

    Ms. FLYNN. Thank you very much, Mr. Chairman.


Wednesday, February 4, 1998.



    Mr. PORTER. Martin Stevens, Pilot for United Airlines, testifying in behalf of the Prostatitis Foundation.

    Mr. STEVENS. Good afternoon, Mr. Chairman.

    Mr. PORTER. Good afternoon.

    Mr. STEVENS. I can't tell you how many times I've flown over the Capitol and kind of wondered what was going on down there, and now I have a better appreciation.

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    Mr. PORTER. I was probably in a number of the planes that you've flown.

    Mr. STEVENS. I am Martin Stevens, and I have chronic prostatitis. I was diagnosed with the disease at age 16, in 1959. About a year after recovering from a urinary tract infection, and well before I was sexually active.

    At first, antibiotics relived my symptoms. However, episodes were recurring about every 18 months to two years. As I grew older, these episodes became more frequent and more intense.

    I flew more than 100 missions as a pilot in Vietnam, and I remember on one mission wondering whether I was going to make it back to base or not because of the pain.

    I would like to share with you what it's like to have chronic prostatitis. I wake up each and every morning with lower back pain. I have moderate pain when voiding and can never seem to void completely. This is why I have to make frequent visits to the bathroom during the day. That's, by the way, why I fly multi-engine airplanes, because they have bathrooms.

    At night, it's the same thing. There is always a sense of great urgency when I have to void. I have spent many a day sitting in a hot bathtub in order to find relief from the pain deep within my pelvic area.

    Most of the over-the-counter drugs provide just temporary relief. Prescription drugs would disqualify me from performing my job. Besides, most sufferers report getting hooked on these drugs just after a short time.
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    Even my marriage has been severely affected by this disease, because of the moderate to severe pain that accompanies intercourse.

    Since my initial diagnosis, I have seen over 25 different urologists, spent thousands of dollars on drugs, doctor bills and traveling, not including the loss of work caused by incapacitation. I have sought medical care abroad, living for more than two months in a third world country where there were rumors of a possible cure.

    While abroad, I met many Americans afflicted with prostatitis. They all had very similar stories regarding the progress of their disease. Especially regarding the treatment received in America.

    Many of them were so upset that they held their personal physicians responsible for their condition. There is no standard of treatment for prostatitis. Most urologists give antibiotics without properly culturing the patient in order to determine the proper antibiotics to use. In time, like myself, most antibiotics become ineffective, and the disease just progresses.

    The urological community is not only split on the causes of the disease, but also its management. That is why finding the cause of this disease is so important. The cure rate for American patients seeking help in the overseas community I visited was dismal, just as it is in the United States.

    Additionally, my medical insurance company refused payment for any of the treatments or drugs I received overseas, because they considered it experimental. I returned home quite depressed to say the least. Psychologically, I've learned to cope with the ramifications of the disease, with the help of counseling.
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    To top this all off, my sons, Mark and Danny, were diagnosed with prostatitis at age 16 and 17, respectively. Their diagnosis was also made before they were sexually active. Dr. Talia Toth, a medical doctor and fertilization specialist, and director of the McCloud Laboratory in New York City, first brought the possible familial aspect of the disease to my attention. He was of the opinion that prostatitis was a bacterial or viral infection that could be carried into the egg by the sperm during the fertilization process and for unknown reasons not express itself until adolescence, when the prostate begins its growing.

    Clearly, more research needs to be done to get the answers we need and understand and treat the disease. The internet news groups are full of horror stories from fellow suffers, desperately seeking advice regarding what doctors to see, what medicines or therapies to try to be cured or find some relief from this disease.

    Many of these victims have gone to the professional journals, as I have, and gained an enormous amount of information on this subject. In fact, many prostatitis patients now know as much or more than the doctors who attend them.

    Many years ago, it was thought that ulcers were caused by psychological problems. Today, we know that the bacteria helicobacter pylori is the culprit in many of the cases. Moreover, this bacterium has now been implicated in adenyl carcinoma, or cancer of the g.i. tract. In other words, a bacterium caused the development of a cancer.

    It would be less than a coincidence if our researchers were to find that same mechanism at work, a bacterial infection at play in the development of prostate cancer. Is it possible that underlying each and every case of prostate cancer there is a case of prostatitis? Silent or otherwise.
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    Can you imagine the ramifications of such a discovery? There's only one way to find this answer and in addition stop the needless suffering and loss of life that at some time or other will impact nearly two-thirds of American males in America. That way is through research, research and more research until we find the answers and create the cure.

    On behalf of those men whose lives have been adversely affected by diseases of the prostate, I want to sincerely thank you and the members of your committee for your past support of the NIH in search for clues to solving this mystery. Continuing this support is absolutely essential to solving this debilitating disease.

    Thank you, sir.

    [The prepared statement of Martin A. Stevens follows:]
    "The Official Committee record contains additional material here."

    Mr. PORTER. Mr. Stevens, when you talk about the progression of this disease, the progression doesn't necessarily lead to cancer of the prostate, is that correct?

    Mr. STEVENS. That's correct, but the kicker that we are learning now is that when they remove a prostate from somebody who's had prostate cancer, they do find an inflammation of the prostate. The cause, they don't know. They haven't looked at it. We have asked them if they would be willing to take prostates that are removed from victims with prostate cancer, look at it to find out, is it being caused by a bacteria.

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    So far, nothing. No answer. The fact of the matter that, as I cited, that there is evidence now that a bacteria can cause cancer of the g.i. tract. It seems logical that that could possibly be at work here in prostate cancer. I'm not a doctor.

    Mr. PORTER. Is it fair to say that most men at some point in their life are affected by prostatitis?

    Mr. STEVENS. Yes.

    Mr. PORTER. Is it also fair to say that doctors don't in most cases take it very seriously? I mean, they sort of say, well, yes, we'll give you an antibiotic and go home.

    Mr. STEVENS. That's exactly what happens. In fact, the first thing that usually brings an older man, somebody in his 50s or so to a doctor, is trouble urinating. He will find upon examination that the prostate may be swollen, that's called BPH, or benign prostate hypertrophy.

    We don't know the cause of it. We think that in that case, there is evidence, or there would be evidence if they looked at it, of bacterial infection.

    Mr. PORTER. BPH and prostatitis are not the same thing?

    Mr. STEVENS. No, they're not. They're not classified at the present time as the same thing. We feel that, in fact, Dr. John Kreeger at the University of Washington just recently published a paper of people who had prostatitis but had no symptoms, or they couldn't grow any kind of bacteria from it. So he biopsied the prostate, and they found evidence through a DNA examination of these bacteria, typical bacteria.
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    For instance, with me, I have a staphylococcus infection. The same bug that's on your skin, that's called staphylococcus epiderma, it's the same thing. How it got there, we don't know.

    Mr. PORTER. Well, I think researchers have taken diseases of the prostate more seriously recently. And that's all for the good. Obviously we want to continue to nudge them in that direction if they need any. So we'll do what we possibly can to be of help. We appreciate your testimony.

    Mr. STEVENS. Thank you.

    [CLERK'S NOTE.—Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity representated by this witness.]

Wednesday, February 4, 1998.



    Mr. PORTER. Jan Shapiro, Volunteer Support Leader, the National Alopecia Areata Foundation.

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    Ms. SHAPIRO. Good afternoon, Chairman Porter and staff. Thank you for many years of support in seeking a cure for alopecia areata, and all skin diseases. Alopecia areata is a disease that strikes over 4 million Americans. Alopecia areata is basically hair loss. For some it's a quarter sized patch that can be easily covered. For others, it's the loss of every single hair follicle on their body.

    I've had alopecia areata for 16 years, just a small patchy alopecia. Four years ago, I lost all the hair on my entire body. It's now what's called alopecia universalis. I'm the support group leader for D.C. Metro area, and I'm testifying on behalf of the National Alopecia Areata Foundation, NAAF. NAAF is dedicated to finding a cure for alopecia areata. It also provides support for those with alopecia areata through publication and support group programs.

    As a support group leader for NAAF, I am many times the first person outside the medical community that a person turns to with this disease. Alopecia areata strikes members of all ethnic groups, but young children get alopecia areata more often.

    Hair loss has several effects. It reduces the protection for the body that the hair provides. The loss of eyelashes means that even the simple act of opening and closing one's eyes is a difficult process at times.

    Alopecia areata is not just a physical problem. It has serious psychological effects on many people. Many people with this condition think they're the only ones in the world with the disease. They often go to their doctors to discover that even their physicians have very little knowledge as to the disease process.

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    Unfortunately in our society, the lack of information is not the only problem. People with alopecia areata are vulnerable to stares and comments of others. A noted news anchor lost his on-air job because he was suddenly perceived as being unappealing to the public.

    This lack of being appealing or being considered normal causes many people to lose confidence in themselves, and they begin to withdraw from society. Recently two families called the Foundation within just hours of each other. A parent in each of these families has alopecia universalis, just like myself.

    In the first family, they have a 13 year old daughter who was just recently diagnosed with alopecia areata. In the second family, they have a one and a half year old and a four year old who were just recently diagnosed with this condition. These parents are trying to deal with the fears of what their children are going to have to go through, as well as the frustration of knowing that right now, there is no known cure for alopecia areata.

    Fortunately, people can help. In many of our support groups, people learn how to help, how they can help themselves both cosmetically and psychologically. The real solution will be when we finally find a cure for alopecia areata.

    Last week, one of our National Alopecia Areata Foundation funded researchers discovered the hairless gene. NAAF has raised and provided almost $1.5 million for research studies on genetic structure of hair, the function of the immune system in supporting non-human research studies for the cause of alopecia areata.

    Part of our research program is also to continue work with the National Institute of Arthritis and Musculoskeletal and Skin Diseases, the NIAMS. One of the results of this joint program was that NIAMS funded a significant study on the structure of the disease.
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    The National Alopecia Areata Foundation and the 21 other lay skin disease groups in the Coalition of Patient Advocates for Skin Disease Research ask that you continue to support us. With an increase of funding of 15 percent, much more can and will be done in this area.

    Thank you.

    [The prepared statement of Jan Shapiro follows:]
    "The Official Committee record contains additional material here."

    Mr. PORTER. Ms. Shapiro, thank you for coming to testify. We certainly will do our best to put this as a high priority and provide the resources that are needed.

    I did read about the finding of the genetic base, let's hope it's the genetic base, of hair loss. So obviously there's wonderful things happening, if we can provide the resources we will continue to make them happen.

    Ms. SHAPIRO. It's starting, right.

    Mr. PORTER. So thank you for coming to testify.

    Ms. SHAPIRO. Thank you very much.

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    [CLERK'S NOTE.—Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity represented by this witness]


Wednesday, February 4, 1998.



    Mr. PORTER. Daniel V. Yager, General Counsel for the Labor Policy Association, testifying in behalf of the Association.

    Mr. YAGER. Thank you, Mr. Chairman.

    I serve as Vice President and General Counsel of the Labor Policy Association, representing the senior human resource executives of over 255 major corporations. I appreciate the opportunity to present our views today regarding funding for the National Labor Relations Board and the Department of Labor.

    I'd like to begin by commending you, Mr. Chairman, and your subcommittee, for the active interest it has shown in the last three years on the NLRB. Clearly a by-product of that interest is the achievement of a fully confirmed board for the first time in seven years. You are to be congratulated for helping to move that process along by making it clear that the funding of the board is directly linked to its legitimacy.
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    Despite this progress, however, you should not ease up in any way. This is clearly an agency that regardless of who is in charge needs to be watched very closely. Just last week, the Supreme Court itself, in the Allentown Mack case, highlighted the Board's frequent result-oriented approach, saying, an agency should not be able to impede judicial review and even political oversight by disguising its policy making as fact finding.

    Unfortunately, one area where this disguised policy making seems to be taking place involves the so-called single facility regulations that your subcommittee has successfully foreclosed. Two recent cases cited in our testimony indicate that the board may be reaching the same results as the regulations simply through adjudication on a case by case basis.

    Another area deserving your attention involves so-called corporate campaigns, where among other things, unions apply pressure on employers through governmental agencies. As one union manual, aptly titled a troublemakers handbook, succinctly observes, every law or regulation is a potential net in which management can be snared and entangled.

    Under this approach, government action is being driven not by evidence of serious violations of the law, but by organized labor strategies for increasing its market share of the work force. This comes at a time when public resources are stretched thin and these same agencies, and I'm not just talking about the NLRB at this point, are seeking more funding.

    We encourage you to explore the history of corporate campaign assists by the agencies in your jurisdiction. Meanwhile, as the NLRB continues to seek increased funds we suggest you examine whether the agency could better target its existing resources.
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    For example, the agency's jurisdiction will continue to expand on an annual basis as long as there is no updating of the small business jurisdiction thresholds, which are still based on 1959 dollars. In addition, the agency continues to get involved in elections involving smaller and smaller units. In one recent case, the board actually conducted an election and certified a union representing only one employee.

    Finally, we commend this subcommittee for its efforts to bring the Department of Labor into the cyberspace age by requiring that union financial data be made available on the internet. Given the heightened public interest in insuring the financial accountability of unions to their membership, this should be a no-brainer.

    Unfortunately, it is our understanding that the Department has made little or no progress in complying with your directive, even though other comparable information is readily available through the internet from other agencies. We provided an example in our testimony.

    This year we encourage you to go another step further by requiring DOL to place the advisory opinion letters regarding technical areas of the wage and hour laws on the internet as well. Currently, these are very difficult to find, and therefore employers can only guess whether their work place practices are legal in the Department's view.

    Thank you for the opportunity to appear before you today. We look forward to working with you, and I'll be happy to take any questions, Mr. Chairman.

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    [The prepared statement of Daniel Yager follows:]
    "The Official Committee record contains additional material here."

    Mr. PORTER. Mr. Yager, are you telling us that the agency has, there is a recognizable pattern of deciding cases that put them in the same place they would have been had they adopted a rule on single site bargaining?

    Mr. YAGER. That is certainly the evidence, Mr. Chairman. In the last year, I've seen two cases decided by the agency. Now, typically, these issues are dealt with at the regional level, so they're harder to track at the Washington level.

    In both cases, and as you know, this is a very fact-intensive area of the law, in both cases, the regional director had looked at the facts and decided that a multi-facility unit was appropriate in those situations, not just a single unit. It was a trucking facility—I'm sorry, it was a bus facility.

    Typically the board will defer to the agency's decision. I mean, they're out in the field, they know all the facts and circumstances. In both cases, they came up to the board and the board reversed the regional director. In both cases, there was a dissent by Member Higgins on the board.

    Mr. PORTER. Is this case that you mentioned in the Supreme Court, does that deal with this subject matter?

    Mr. YAGER. Similarly—no, it's a different subject. It deals with withdrawal of recognition from a union. They are calling attention to this pattern where the board will make a fact based determination, they'll say, we're not doing anything to change the rules. In effect, they change those rules by sort of looking at the right set of facts to reach the same result they would have reached if they would have changed the rules.
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    Mr. PORTER. As you know, many members of this subcommittee have been very concerned with the way this NLRB has approached the law that it is to administer. There have been a number of attempts to try to curb some of the things that members see as excesses of the board. And there's been, I think it's fair to say, a great deal of tension between the subcommittee and the NLRB over the last few years.

    I think you'll see a great deal of attention paid to this subject again this year. Last year, year before, year before that, each of the last three years, we have attempted to send messages by restraining budget. This is not the best way, in my judgment, to do that, because this is a body that is supposed to be resolving disputes between management and labor under the rule of law. Any time you restrain budgets, you can get the reaction of simply creating backlogs that probably don't serve anyone's interest.

    On the other hand, there are things that members have been very concerned about reaching, and we've had a number of meetings between Chairman Gould and members of the subcommittee in an attempt to resolve these matters.

    If I were to find that there is a pattern here, as you describe it, of getting around what the subcommittee had exactly told the NLRB not to do, and that is adopt a, basically adopt a rule on single site bargaining, that would be very serious indeed.

    So let me thank you for your testimony, for bringing these matters to our attention. I will be interested to share your testimony with members of the subcommittee and draw it to their attention. We appreciate knowing what you've provided to us. Thank you so much.
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    Mr. YAGER. Thank you, Mr. Chairman.


Wednesday, February 4, 1998.



    Mr. PORTER. Last but not least, Joan I. Samuelson, J.D., President, Parkinson's Action Network, testifying in behalf of the Network.

    Do I call you Dr. Samuelson, since you're a juris doctor?

    Ms. SAMUELSON. Absolutely not.

    Mr. PORTER. Well, wait a minute, I am, I might want to be called that.

    Ms. SAMUELSON. Well, perhaps. I sometimes receive letters with that, and I kind of enjoy it. I find that working with the scientific community, I felt extremely lonely at times when everyone on a list of people would have initials after their names. I don't particularly like using the initials, but sometimes I feel a member of the club.
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    I must begin by saying, I feel a bit of compassion fatigue just sitting here this morning. So I must just tell you how I appreciate the scope of your committee, the immense number of human problems that you have to address.

    In particular, your incredible leadership in the area of biomedical research. You have challenged your own body, you have challenged the Senate. Now even the Administration is rising to the call. I appreciate that personally from the bottom of my heart and on behalf of the Parkinson's community. It's been an enormous support for all of us.

    Having said that, what I have to do is beat our drum a little more. I thought what I would do is just talk about a few highlights, then try to address the things that I know are of concern to you. Jim Cordy did a marvelous job of describing the necessary desperation with which we conduct our lives, every day waking up knowing that we're that much closer to the fate that many people we love are currently suffering.

    I know, I'm 11 years post-diagnosis. On Mo Udall's timetable, I've got a couple more years before I'm struggling terribly, and perhaps will take a terrible fall, as he did, which will really end my ability to live a productive life.

    On the timetable of a close friend, Millie Condrachey, Mort Condrachey's wife, I am overdue of the time when I would be relegated to walker or wheelchair and really unable to do this work. She used to accompany me in meetings on the Hill. Now it's treacherous for her to get anywhere, because she falls so frequently. She falls almost daily. Her voice is now so soft she really can't communicate unless someone is extremely close.
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    I live with the same urgency that Jim does. He did a lovely job of describing it, and I know you've heard it before.

    Why do we need the Morris K. Udall bill funded to its fullest, to $100 million in Parkinson's specific research? And why Parkinson's specific? I know that's a concern of yours. That's what I'd like to spend my time talking about.

    The first is simply the enormous research potential. One thing I know the scientists in the Chicago area have talked about doing is bringing you to their lab. I'd like to help them try to arrange that. There's just tremendous work going on at Northwestern, Chicago Med School, the University of Chicago. In fact, one of them called me to tell me they've been on the phone talking about a collaboration to apply for one of the Udall centers that are proposed in the Udall bill, and a preliminary approach to that is being considered right now by the NINDS.

    I think in anticipation of the Udall bill's passage, they sent out an RFP in the fall and the proposals are due in April, so we don't really know the number that they will fund. The RFP is for up to three, and I'm sure they're going to get a virtual flood of proposals.

    This incredible research based in basic science, fascinating collaborations among basic science and clinical research, going on all over the country. And it's enormous backlog, because Parkinson's research has not been funded historically.

    I attached to my testimony two charts. One is a horizontal chart which shows Parkinson's funding over the last decade plus. It's just a very sad picture. It's essentially stagnant, the entire time. When Parkinson's advocacy really was in its infancy, in 1991–1992, the NINDS advisory council issued a report in which they said that by the end of the decade, there would be, with adequate funding, available therapies that would prevent or reverse Parkinson's. Which is of course exactly what we need, as the medication begins to cease its effectiveness.
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    They're not there yet. They're very close. But they're not there yet. And it's because that money has been slow in coming. It's directly attributable to that, and it's just a terrible, terrible shame for the many people who may be beyond hope, as well as the rest of us who are so desperately hoping that the treatments will be delivered by the time we desperately need them.

    For that reason, I feel that the intent of the Udall bill must be funded to its fullest, with Parkinson's specific research. I know that's a concern of yours, both in terms of the notion of earmarking and the fact of focusing in on a given disease. The pent-up supply of incredible research opportunities is enormous, and is pent-up, and all deserves to be funded. There's far more that could be funded than money available, or that even in the President's proposed budget would be.

    It really has to be tackled aggressively, so that the cure will be delivered as soon as it can be. It's later than it should have been, but as soon as it possibly can be.

    So how do you do that? We feel we must focus in on Parkinson's specific research because we have been neglected in the past. That doesn't mean it should be coming from other diseases. What we have to do are the things you recommend, we have to work with the budget committees. We have to work for the doubling of the NIH. We will do everything we can to work with you to do that.

    I'm offering all the help that the Parkinson's community can give to lead the battle. Thank you, Mr. Chairman.
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    [The prepared statement of Joan Samuelson follows:]
    "The Official Committee record contains additional material here."

    Mr. PORTER. Ms. Samuelson, I appreciate your testimony. I'm glad you brought up Morton Condrachey's wife, because I think it's fair to say that there's no one that's been a stronger advocate, more persistent, aggressive leader on addressing the whole issue of Parkinson's research than Morton Condrachey. Largely because of, and I wasn't originally a part of this, but my understanding is that largely as a result of his efforts, this matter got pushed as far as it has been.

    I want to be very clear about one thing, though. We do not fund bills, we fund institutes. As you know, you've alluded to this in your testimony, we are very careful to leave the final determination of where the opportunities in science lie and where the best chance for the funding to make a difference in peoples' lives lie with science.

    That does not mean that we simply rubber stamp what NIH suggests. As you know, we're very active and very aggressive in pushing things that we think are important on NIH, without directing. In other words, we don't go the final step and say, you have to do this. We believe if we did that, we would be substituting our political judgment and we are not experts for scientific judgment that always has to prevail in these areas.

    I think it's fair to say, and I think NIH would say that we go very close to that, and do suggest very strongly to NIH what our thoughts and priorities are in respect to funding. I think it's also fair to say that working with NIH, they have traditionally been very sensitive to the concerns expressed by Congress in the bill and the report accompanying the bill. NIH has been very responsive in terms of what our own priorities would be in a broader sense of, rather than a disease-specific sense.
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    I think all of us consider this a very, very high priority, and we're going to push very hard for it. As I said, we have not only Morton, but we have several members of Congress who are very strongly pushing the NIH and the subcommittee on the subject. I think the message is being heard, and I think you can look forward to Parkinson's being placed at a higher priority in the immediate future and the long term future as well.

    There seems to be, again, we're not experts, but there seems to be so much progress being made, and we're so close, it would be a shame if we could not get the additional resources placed there that would bring about real serious progress that would make a difference in your life and Mr. Cordy's life and others who suffer from this disease.

    We'll do our darndest.

    Ms. SAMUELSON. Thank you, Mr. Chairman.

    I'd love to get you together with those scientists in the Chicago area, because they could really describe the difficulties they've had in getting their Parkinson's research funded. It's partly simply there hasn't been enough money in the neurological institutes. Of course, the brain hasn't receive the attention it's needed.

    It has seemed to be more than that. The reason, I think, there's been the Congressional response. And I know about your reluctance.

    Mr. PORTER. I'd be happy to meet with them, and if we see a problem beyond the simple lack of money, we'd like to address that. Absolutely.
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    Ms. SAMUELSON. Great.

    Mr. PORTER. You arrange it, and we'll do it.

    Ms. SAMUELSON. Good deal. Thanks very much, Mr. Chairman.

    Mr. PORTER. The subcommittee stands in recess until 2:00 p.m.

Afternoon Session

    Mr. PORTER. The subcommittee will come to order.

    This is the eighth of nine sessions hearing public witnesses before this subcommittee. We appreciate very much all of your attending and providing us with your views and knowledge.

    Because we have so many witnesses that want to testify, we have to pay very close attention to the time that allot to each witness. I will tell you now that the subcommittee is now armed with a timing device that you will hear go off if you go beyond the five minute time limit. We simply ask that you, in the interest of everyone else getting a chance to testify, observe as closely as possible the allotted time.

    I suspect that in the course of the testimony, you will hear a couple of sermonettes from me that I've given to each of the panels. Please bear with me with those.
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Wednesday, February 4, 1998.



    Mr. PORTER. We'll begin with Charles Ballard, the Founder and CEO, National Institute of Responsible Fatherhood and Family Revitalization, testifying in behalf of the Institute.

    The Chair recognizes Mr. Stokes.

    Mr. STOKES. Thank you very much, Mr. Chairman.

    It's indeed a real pleasure for me to have the opportunity to welcome before this subcommittee a gentleman who comes from my Congressional district, and a gentleman for whom I have, over a number of years, had the highest esteem. He has been founder of an organization that has taught fathers to be responsible to their families and to their children in a way that I've seen no one else approach that type of responsibility.

    His institute has now been the beneficiary of funding through this subcommittee on a competitive basis, through the Department of Health and Human Services. The program now has become so good it has now spread out, it has gone national and exists now in several cities.
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    I just want to say that Mr. Ballard is an exemplary individual, and someone we're very, very proud of. It's an honor to have you before us.

    Thank you, Mr. Chairman.

    Mr. PORTER. Thank you, Mr. Stokes.

    Please proceed, Mr. Ballard.

    Mr. BALLARD. Good afternoon, Mr. Chairman, Mr. Stokes and members of the committee.

    It's a great pleasure to appear before you this afternoon and share with you the burden of my heart which I think affects not only us here but affects America. It's an issue that I call fatherlessness. Fatherlessness is not just simply a man not at home, but it's even a man at home but he's not being responsible for his family. He's not taking care of them, he's not being a good nurturer, a good provider, and other kinds of things.

    This approach that we take started in Cleveland about 20 years ago, is helping men of all races, creeds and colors, but especially those who are in disrepair, to be good men, and to be responsible men toward their children.

    I need to share with you why it's such a burden to me, because I grew up in Alabama back in the 1930s, 1940s, and 1950s. I experienced this same problem. My dad, because of whatever reason, became mentally ill and was taken out of the home, where he later died in an institution. I grew up without a father, and did things that many guys do, got in gangs and did drugs and all. Then I got a girl pregnant and ran away, joined the armed forces, got more involved in drugs, ended up in prison.
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    While I was in prison, I met a man who I would have considered, someone like Mr. Stokes, who was compassionate, understanding, and who reached out to people and who cared. It was very unusual for someone behind bars to be that way, so he really attracted my attention.

    He worked with me very patiently and gave me a lot of time and introduced me to God and Jesus Christ. I overcame drugs and alcohol and went back to Alabama in 1959 to get my son. I had a prison record, I was undesirably discharged, I hadn't finished high school. But I took on my son, I adopted him and began to raise him. Of course, with those kind of records, you couldn't find jobs.

    I didn't care about that. I was concerned about caring for my child and making sure he did not grow up like that. So I took any kind of jobs, dishwashing jobs, floor scrubbing jobs, and I went on and got my GED, a B.A. degree, and I have a masters degree now.

    When I got my masters in Cleveland, I went to a hospital to work, my major purpose was to help me to understand that it was their job, not government, not welfare, to care for their children. I would say, if not for people like Mr. Stokes, who not only supported it locally but nationally, I would not be here in this place. Because of his support and his direction, foundations and governments from around the country have funded our program.

    I appear back here today to not only share with you the problems, but to show you what we've done and make some recommendations. I was amazed to discover that here in America we have more women going to prison than ever before. From 1930 to 1950, we built four women's prisons. From 1980 to 1990, we built 33 women's prisons.
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    We've built more prisons in a span of 10 years than we did in 30 years. One of the reasons I believe is because we have many men going to prison and women are following their boyfriends and husbands behind bars, and leave the children vulnerable for substitute care.

    Just recently, Congress passed a bill and the President signed it to have adopted 100,000 children. That's great, out of the 60,000 kids in substitute care, mostly African-American kids, but we need to go farther. We need to bring fathers back to their children as loving, compassionate men. This program that we started that has now gone nationwide is designed to do just that. Every city we've gone into the last two years, we have planned to raise 25 fathers per site. The need is so great, the first year there were 65 fathers per site in 6 cities.

    Now, in coming today, I wanted to look at doing something not just to get money, but to do something special. As I sat here, people from other States were shaking hands with Mr. Stokes. I've seen him do other things with other States, so his name is kind of like around this country.

    I was told he's going to retire very soon. To me, that's a major tragedy for us as a country, unless somebody replaces him that's as good as he is.

    I would like to suggest more funding for this agency to go into other sites, other cities. What I want to do is name this program the Louis Stokes Responsible Fatherhood Initiative, so around the country, as this program spreads out and becomes more pervasive, the person who has given us the most support out of Cleveland will now have his name in this way around the country.
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    Here is what I'm suggesting. When I came before, $500,000 was given to us in Cleveland for that one program. Of course, since that time, we have advanced into California, we're in Nashville, Tennessee, Milwaukee, Wisconsin, Yonkers, New York, here in the District and of course, Cleveland, Ohio. Letters are coming from all around the country as we are placed on national TV and asking for this program to come to their city. We've chosen 10 new cities to go into.

    What we're suggesting is that this committee appropriates $500,000 per site, for a total of $8 million, and that the committee also appropriate $500,000 to create a responsible fatherhood clearinghouse, so that agencies around the country can better understand the plight that these men have, seeking to be involved with their children. And that we also appropriate $500,000 for research and evaluation to see the power of this program, and what we actually do with these men, so we can replicate it even more into other areas.

    Let me show you why this is so important. Within the first six months of this program, men who have not had jobs, will find jobs and begin to pay child support. There is a great concern about men paying child support in this country. Some men cannot, because they don't have jobs. Through our program they find jobs.

    Domestic violence, which is a serious issue among women that we interviewed, becomes almost zero in six months. Gang membership, gang banging, goes to zero. The program not only affects the man with his child, but with his girlfriend, with the community, and with also getting gainful employment.

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    We also discovered that at least 20 percent of these men get married. In the welfare reform bill that was authored by Mr. Shaw, marriage was one thing they suggested was happening. Our guys are getting married, they're coming back home, and they're being responsible for their children.

    Thank you very much for this opportunity to share this with you.

    [The prepared statement from Charles Ballard follows:]
    "The Official Committee record contains additional material here."

    Mr. PORTER. Mr. Ballard, tell me again what line item this is funded under? Your current funding is under what agency?

    Mr. BALLARD. It came under the Health and Human Services.

    Mr. PORTER. Innovative programs. All right. Well, we certainly share your feelings about Congressman Stokes and the wonderful contributions he has made. I think it's a real honor, I'm sure he does also, that the program would be named for him.

    Obviously we want to do the best we can to fund programs that work for people. We will do the best to look into it further and provide the kinds of resources that are needed.

    Mr. BALLARD. Thank you very much.

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    Mr. PORTER. Thank you for coming here to testify.

    [CLERK'S NOTE.—Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity represented by this witness]


Wednesday, February 4, 1998.



    Mr. PORTER. Warren Greenberg, Ph.D., Chairman, Committee on Lobbying and Legislation, representing the Mended Hearts, Inc.

    Dr. Greenberg.

    Dr. GREENBERG. Thank you very much, Mr. Chairman. My name is Warren Greenberg. I am a professor of health economics and of health care sciences at the George Washington University. I am married and have a 23 year old daughter.

    I am here to testify for an increased appropriation for the National Heart Lung and Blood Institute. I am a victim of heart disease, and a beneficiary of the efforts of medical researchers to overcome this disease.
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    I might also add that I am a member of Mended Hearts, a support group of 24,000 members throughout the United States, including the Chicago area, the Cleveland area, and I have been appointed lobbying and legislative chairperson of the Mended Hearts group, a volunteer position.

    I am 54 years old. I was born with aortic stenosis, a narrowing of the heart valve. Throughout my entire life, I have lived with heart disease, often incredibly severe. When I was in my early teens, my physicians did not allow me to play high school intramural sports, although I was a fine athlete. At the age of 18, I was told not to play ball under any circumstances.

    In my early 20s, I was told not to climb more than two flights of steps. By my early 30s, I began to climb steps more and more slowly, often pausing to rest. I never carried an attaché case home from work. It was too heavy.

    I would often balance a large book on my hips, rather than carrying it outright, in order to blunt the weight. I would walk two or three blocks on a level street to avoid going up three or four steps at the ends of particular blocks. I could barely lift my newborn child. I could not help my wife take in the grocery bags.

    In May 1982, at the age of 39, I had open heart surgery at the Cleveland Clinic to replace my diseased valve with the valve of a pig. After my six week recuperative period, I was amazed to find that not only was I able to walk, but was able to play tennis, to jog and to exercise. I was able to live a normal life.
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    By August, 1988, however, my new valve had failed. In August, I again had cardiac surgery at the Cleveland Clinic to replace the failed pig valve with an artificial plastic valve. I am again able to live a relatively normal, very productive life. And I am deeply thankful for it.

    I take a blood thinning medicine, coumadin, which helps prevent clots on my new valve. At the same time, because of the medicine, I must be cognizant and careful of excessive bleeding. In 1983, I contracted endocarditis, an infection of the heart valve, which kept me in the hospital for six weeks. Whenever I have dental work now, I get intravenous penicillin to protect me against such infections.

    I realize that my valve, as a mechanical device, might fail at any time.

    For nearly 16 years, thanks to the fruits of medical research, I have been able to travel abroad at least once a year, to jog in the park, to be a productive author of many scholarly articles and a number of books on the health care economy. I have been quoted often on my views on the U.S. health care system, and have made many television appearances.

    If it were not for the advances in research leading to improved techniques in open heart surgery, I would not have seen my 40th birthday. I would not be able to look forward to a life of many rewards and enjoyments.

    As an economist, I always observe the link between monetary resources and the development of innovation and technology. Health care research and cardiovascular research is no exception.
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    I also understand as an economist that there are always competing uses for the monies that you appropriate. However, cardiovascular diseases last year killed more than 960,000 Americans, of whom more than 154,000 were under the age of 65. Despite advances in medical research, these diseases remain the number one killer in the United States and a leading cause of disability.

    From my personal perspective, and for those at Mended Hearts across the country and others in the United States who have heart disease, or who will get it in their lifetime, I ask for a doubling of the National Heart, Lung and Blood Institute budget within five years. To reach this funding goal, I advocate a fiscal year 1999 appropriation of $1.825 billion for the National Heart, Lung and Blood Institute, to help reduce further the incidence and degree of heart disease in this country.

    [The prepared statement of Warren Greenberg, Ph.D. follows:]
    "The Official Committee record contains additional material here."

    Mr. PORTER. Perfect timing.

    Dr. GREENBERG. Thank you, Chairman.

    Mr. PORTER. Dr. Greenberg, thank you for your good statement. You're going to be the recipient of my sermonette number one.

    This subcommittee has placed, as you know, biomedical research at a very high priority. We think that that is proper, not only from the standpoint of improving and saving lives, but from the standpoint of saving health care costs as well. Research saves costs.
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    We share the goal that you have just mentioned, at least I do personally. I think members of the subcommittee do as well. We are going to have a tough time reaching it without getting the kinds of allocations from the budget process that we need to reach those goals. This applies not just to biomedical research, it applies to all the matters under our jurisdiction, many important programs that serve people and improve their lives, and serve those most at risk in our society.

    Our plea to those who have come to testify and ask for greater funding is that they not only pay attention to the appropriations process, which obviously they are, but they also pay attention to the budget process, which is where the funds come from that allow us to do our work. I think everybody realizes this, but John Kasich and his subcommittee in the House and Pete Domenici and his committee in the Senate are very important to all this process, and the place where the allocations derive from which we are able to do our work.

    We hope that you will pay as much attention to them as you do to us. That's sermonette number one. Two comes later, but that's number one.

    Thank you very much, Dr. Greenberg, for your testimony. We will obviously do our best.

    Dr. GREENBERG. Thank you, Chairman, and members of the committee.

    Mr. PORTER. Thank you so much.
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Wednesday, February 4, 1998.



    Mr. PORTER. Dr. Morgan Reynolds, Senior Scholar, National Center for Policy Analysis, testifying for the Center.

    Dr. Reynolds.

    Dr. REYNOLDS. Thank you, Mr. Chairman and committee members.

    I appreciate this opportunity to testify today about downsizing labor bureaus and agencies of the United States Government. My name is Morgan Reynolds, and I am a senior scholar with the National Center for Policy Analysis. I'm also a professor of economics at Texas A&M University in College Station, Texas.

    I've done four books on labor issues, including a recent textbook, economics of labor. I'm a member of the board of the Journal of Labor Research.

    Last year, the President's Council of Economic Advisors wrote in its annual report, ''Over the long run, sound economic policies that lead to low levels of unemployment and high rates of economic growth are likely to produce gains for most workers.'' True enough, but the Council was unwilling to back the market wholeheartedly, declaring instead, ''Government has a role in lessening the burden that economic growth causes for some workers.''
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    The Constitution is strangely silent on this Federal authority to protect employees from the gales of creative destruction that characterize the market process. We've got a colossal structure of Federal labor controls that can't withstand careful, rational examination. Like the welfare state itself, it appears to emotion, rather than reason.

    Why the invisible hand of market competition, aided by ordinary property, tort, contract and criminal law, cannot be trusted to work out the ordinary difficulties of daily life has never been satisfactorily answered. There is no evidence that labor markets have failed with consequences so horrendous as to call for the daily microtuning by the mighty and mighty expensive visible hand of the United States Government. In fact, these bureaus depress business growth and thereby impoverish Americans.

    Companies, not government, must control hiring, firing and promoting employees. As English economist David Ricardo wrote in 1817, ''Wages should be the result of a free compact, and the contracting party should look to the law to protect them from force being employed on either side. Competition would not, I think, fail to do all the rest.''

    In the name of protection for workers, regulation begets regulation and spending grows. One of the more absurd consequences has been an effort to impose our labor protections on other nations, long before they can afford such folly. On-budget spending indicates only the dead weight administrative cost of labor regulation, not the full cost to working people.

    Federal agencies by and large serve political rather than economic ends, and we lack the ultimate discipline of bankruptcy for programs, which we have in the private sector, obviously. Every dollar government spends is received by someone, and I know that some of them are here today. The recipients have more to gain from preserving a losing venture than from dissolving it.
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    The era of big government, paternal business, and paternal unions, has a limited future. We're seeing it being played out in Europe at an advanced stage. Existing employment policies are 65 years old and based on an outmoded welfare state philosophy. Too many Americans live paycheck to paycheck, backed precariously by a frayed safety net. It's time to implement a new philosophy. We should promote a society of free, responsible and self-reliant individuals instead of fearful and dependent ones.

    How can we take pride in expanding the Federal Government and reliance on it while our wealth grows? We should aim at new policies that allow maximum opportunity for individuals, families and generations to pay their own way. I call that the American way. An empowerment agenda meets the needs of a more flexible work force.

    Growth depends on low rates and marginal taxation, especially on capital income, to increase capital formation and add new technologies through R&D. Improved labor quality must come from a competitive, decentralized and innovative educational and training system. A stable political environment with stable price level and low interest rates must come from government, as must reforms in our institutional arrangements to increase growth.

    Empowerment for individuals and families awaits expansion and enactment of pro-market reforms, such as medical savings accounts, privatization of social security and broadening of 401(k) type accounts. These should be adopted not only to rationalize the markets in health care and prefund retirement, but to boost total savings and investment and thus jobs, real wages and financial security.

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    Given this market approach, we obviously have a target rich environment for downsizing labor agencies and deregulating our labor markets. The Cato Institute has proposed, for example, terminating special interest departments like Commerce and Labor.

    Thank you.

    [The prepared statement of Morgan Reynolds follows:]
    "The Official Committee record contains additional material here."

    Mr. PORTER. You didn't have to stop quite that abruptly. [Laughter.]

    Dr. Reynolds, first I'd like to ask what bureaus and agencies were you specifically referring to in the first part of your remarks? Were you talking about OSHA and MSHA and NIOSH?

    Dr. REYNOLDS. Well, I'll take partial or complete repeal of the appropriations for agencies. My little laundry list here had eliminate Federal training programs and the Federal role in unemployment insurance, and leave it to the States to experiment, since they will do a better job. Repeal Federal regulations governing hours and wages, leaving Americans free to bargain for their own terms of employment in a competitive market place.

    Take a more neutral position between business and labor in their disputes, ending restrictions on employee-employer cooperation and negotiation, or even appealing the National Labor Relations Act, which is the overarching legislation passed in 1935. Yes, eliminate Federal oversight of the work place. Relying instead on a combination of tort law, workers comp programs and market wage differentials to promote an efficient amount of safety.
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    Mr. PORTER. Let me say, the philosophy I believe you are laying before us is maybe not in its pure form, or even close to it, but largely being followed. That is, we are attempting, as you know, at least for the last three years, to examine every way that the Federal Government spends money, go through every single program, to wherever possible move programs where it makes sense to a different level of government, to the States, to the local communities, to the private sector, to eliminate those that don't work or are unnecessary, to examine all of that in light of are we getting what we're paying for.

    That may be a more pragmatic view than what you would like us to do, but I think very definitely there is, and I don't like the word devolution, but I think there's very definitely an attempt here in the Congress to devolve a good deal of what the Federal Government has come to have jurisdiction over to State and local governments. We've gone through, as you know, a period of history beginning perhaps with the Great Depression through World War II through the Cold War that concentrated an awful lot of power in Washington that was not originally here, and was in fact exercised by the States and local communities.

    I think we're moving in a lot of the directions that you have suggested. I personally have the major legislation to privatize social security. It's my bill. I introduced the first bill to do that in 1989, when nobody even wanted to talk about social security, let alone privatizing any part of it.

    I think we are now in a position where in fact we can form the kind of social security system that we would have formed in the middle of the Great Depression if we could have, and that is, a vested, funded system owned by the workers and not by the government. I think we're on the verge of being able to do that, if people can have a little imagination.
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    We've got a foot in the door on individual medical accounts, that is a small pilot program, it's true, under Medicare. But it's there. I think some progress is being made along these lines.

    I don't think I agree personally with the views that you have, and I'm not sure whether they're libertarian or laissez faire or a combination of the two. But I'm not sure I agree that the government can back out of certain worker protections. I think that there has been, unfortunately, a history that we are largely overcoming, and we can do things entirely differently. But until we turn that corner, I think we're going to need to provide some basic protection to workers.

    We have an OSHA today for example, that has changed its philosophy completely. It hasn't gotten down to the lowest levels of enforcement, but if you talk to the director of the program, in Washington, the idea is not to have raids on employers and fine them for every little thing that they find. The idea is to get their cooperation and work with them to provide a safe and healthy work place for American workers, and only to use the enforcement powers where you have a history of not caring about those conditions in the work place that lead to greater safety and health.

    I think we're doing things smarter than we did before. Maybe our approach is more based on pragmatism than on philosophy, as you might wish it, but I think it's moved largely and fairly substantially in a short time in the kinds of directions where we're doing things better and doing less in Washington and leaving more to the private sector and more to the other levels of government.
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    Dr. REYNOLDS. If I might respond.

    Mr. PORTER. Yes, sir.

    Dr. REYNOLDS. I certainly agree with that, the trend is clear. I also wanted to note that in my prepared statement, I say that the harm from labor regulation has been contained because the Congressional majority always fears the business destruction caused by such regulation, and so limits its attempts to put this flawed theory into practice. I think that's what's gone on, for example, with OSHA reform.

    Mr. PORTER. I also believe, and the real progress isn't here in Washington, the real progress is out there in the private sector, where we have an employer community that is much more progressive and caring about the fate of their workers than it used to be, or at least the evidence points to a different philosophy in the past than I think is exhibited by most business people today.

    The problems that once existed are very much less, because I think labor and management increasingly are seeing their destines as being tied inextricably and their success dependent upon one another, which is exactly where it really has always been, very frankly. You can't have one without the other. Both have to prosper and go forward.

    Well, we could discuss this at some length. Mr. Miller, I expected you might.

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    Mr. MILLER. One of the frustrations you brought up this morning about appropriations versus authorization, and we can only do certain things at the appropriations level. We have made some progress. You mentioned OSHA. We have shifted resources from enforcement, the police action, versus the classification compliance, which is a little different from sending in the police and such and get people to work to resolve an issue. There are problems there.

    You mentioned NLRB. First year we had control to slash the budget 30 percent in the House, but it didn't work out in the Senate. So it's a frozen budget, and the cost of living changes and affects our changes, it really means a cut. There's only so much we can do, but we need to keep addressing it.

    A lot of it goes back to laws in the 1930s or 1950s, the threshold, for example, one issue we've talked about with NLRB, the threshold is like $50,000 in payroll costs before they can get involved. Well, that's a very small amount. If you adjusted that to inflation, you'd be up at a half a million dollars. That's where you should be.

    We're trying. We appreciate your bringing your thoughts to us on the issues. Thank you.

    [CLERK'S NOTE.—Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity represented by this witness.]


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Wednesday, February 4, 1998.



    Mr. PORTER. Dr. Joe Cipfl, President and CEO, Illinois Community College Board, Springfield, Illinois, testifying in behalf of the board.

    Joe, nice to see you.

    Dr. CIPFL. Nice to see you, Congressman Porter, and I certainly want to express appreciation for having the opportunity to appear before you today. I assure you, I come before you today proudly from the State of Illinois, the home State of Chairman Porter. Certainly, Congressman, we want to thank you for your great leadership and the commitment that you've given to community colleges in our State.

    What I would like to do this afternoon is to assure you that community colleges are prepared for the opportunity to play an expanded role as policies and budgets are developed, particularly in welfare to work programs and work force training programs. Two issues that are fundamentally important at this point in time in the history of the State of Illinois, and certainly the history of our Nation.

    I think it's important to acknowledge this afternoon that community colleges at this point in time are the largest sector of higher education in our Nation. Nationwide, in fiscal year 1997, community colleges enrolled 5.3 million credit students and approximately 5 million non-credit students.
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    Illinois has the third largest community college system in the Nation. This past year, we served in excess of one million students, literally one out of every ten Illinoisans are currently enrolled in a community college.

    The average age of those Illinoisans is 31 years of age, that are enrolled in community colleges, a very adult population. A group of individuals who thought they had skills to last them a lifetime, and in this technological revolution in which we're all trying to survive, found out that they had to literally return to the classroom.

    I think it's important to note also in Illinois that 63 percent of the students enrolled in public higher education are attending community colleges. In Illinois and nationwide, we are the primary provider.

    Welfare reform ranks high on the national agenda. And it is true in Illinois. Helping welfare clients fulfill their potential and acquire the skills for gainful employment ranks among the top priorities of the Nation's community colleges.

    A work force emphasis accompanies recent legislative welfare changes. Illinois community colleges are responding to this need with a powerful program called Expanding Opportunities. In partnership with the State's department of human services, this program places an emphasis on short term occupational certificates and skill building courses that are designed to help people quickly develop skills for upwardly mobile employment.

    Expanding Opportunities has moved literally thousands of people from the welfare rolls to the work place. This model program can and should be replicated, and it can work in States throughout the Union. We need to expand these programs and those like it, taking folks from welfare and putting them in the work place.
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    In one accessible location, community colleges provide the array of programs and services necessary to move people, at an accelerated pace, from welfare to work. Today's world also demands an increasingly skilled work force, and an educated citizenry.

    I think it's important to note that by the year 2000, 89 percent of the jobs in the United States will require post-secondary levels of literacy and post-secondary levels of math skills. Only half of the new workers coming into the work force are likely to have those skills.

    This skills gap will create increasing disparity in wages, unless corrective action is in fact taken. I would suggest to you that community colleges are uniquely positioned to help workers compete in a marketplace that demands heightened levels of competency. The colleges provide credit generating work force training course work in hundreds of different occupations. Community colleges also offer customized, flexible, non-credit training for business, for industry and for government.

    For example, in fiscal year 1997, Illinois community college business and industry centers provided technical assistance to 2,300 businesses and 76,000 employees. Through economic development activities, these centers helped create or retain over 165,000 Illinois jobs in the last five years alone.

    This afternoon, I want to applaud your identification of education, and particularly higher education, as a top priority in the budget process. Our citizens place a great trust in community colleges to provide a skilled, American work force, one that can compete successful in a competitive, global market place. Funding for community colleges helps sustain the communities that serve communities from which we all draw our educational and our political nourishment.
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    One final point, if you will allow me. Nationwide, tuition and fees for the average full time community college student are only $1,500 a year. This low cost is certainly a remarkable educational value. But there is still a very real need for financial aid among our students.

    Many low and middle income families are taking advantage of the Hope Scholarship Tax Credit and will benefit from continuation of this program. Thank you.

    The increase in Pell Grants achieved last session is laudable, but more needs to be done. Nationwide, a need exists to provide a Pell Grant maximum for fiscal year 1999 that is greater than the $3,100 requested by the Administration. Providing increased income protection allowance proposed by the Administration will also enhance educational access. The Title III(a) strengthening institution programs is a key initiative for community colleges.

    I urge you to fund it at the $80 million level in fiscal year 1999, Congressman Porter, that you support it. Your support of Pell Grants, along with other financial aid, such as Perkins loans, helps maintain the rich diversity of community college student bodies. This aid makes a quality higher education truly accessible to all who desire it.

    In summary, I would suggest to you that America's community colleges have truly emerged as the vanguard institutions for preparing workers and their companies for the challenges ahead. Our community college systems exemplify low cost, high quality post-secondary educational opportunity empowerment.

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    Thank you, sir.

    [The prepared statement of Joseph Cipfl, Ph.D., follows:]
    "The Official Committee record contains additional material here."

    Mr. PORTER. Dr. Cipfl, can I ask you a question about costs? This may not be a fair question for you, but you may know the answer to it.

    There's great concern that as we make increases—excuse me a second.

    There's great concern that as we increase the assistance through Pell Grants and loan programs for students for higher education that the costs of that education rise to meet and sometimes exceed the increases. We are left not having made any progress at all. Can you comment on that generally?

    Dr. CIPFL. I would be happy to comment on that, sir. Certainly the suggestion that available dollars cause us in higher education to elevate our costs I think is an issue that needs to be addressed.

    In Illinois, we've identified two particular initiatives. One is PQP initiative, priorities, quality and productivity. We're attempting to very carefully examine our unit costs. The dollars that it truly takes to provide, literally, a college credit hour. Rather than simply elevating those costs, we're attempting to document the implication of those costs.

    I believe that is an issue that can be raised, but I think the higher education community is prepared to in fact not only defend but explain and validate the costs that we're incurring, literally, in this technological revolution. I would suggest to you today that the strength that this Nation's economy is enjoying can be at least in part, I think, attributed to what's happening in the higher education arena today. That in fact the technology that's being developed, the technology that's being impacted, that's impacting the strength of the economy, that education has played a role in that. I guess we would ask for a reinvestment.
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    But I think we're prepared to explain our costs.

    Mr. PORTER. Joe, that wasn't a hostile question. It was an access question.

    Dr. CIPFL. Oh, I understand.

    Mr. PORTER. What we're concerned about is that if the costs rise as fast as or faster than the resources we add, we don't get the increased access that we're trying to achieve. It's not that they're not justified, or that they're not working overall in respect to improving the quality of the education that's being offered. But how do we get the access if they're absorbed. That's really what I was concerned with.

    Dr. CIPFL. Well, since I'm here speaking in behalf of community colleges——

    Mr. PORTER. As I said, it was probably an unfair question.

    Dr. CIPFL. Oh, no, I love it. You know, the cost of community colleges I believe address the access issue. When you talk about access, I assume you're talking about student access. I think it's important for the community colleges in this Nation to continue to elevate their ability to provide. Really, when you're talking about that baccalaureate degree, I would suggest to you that costs can be considerably curbed if the freshman and sophomore year of that baccalaureate degree become the primary responsibility of this Nation's community colleges. You will save lots of dollars, and we can document the quality that you can provide.
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    Mr. PORTER. You did make that an opportunity question. Good. [Laughter.]

    Joe, thank you very much. We very much appreciate your testimony.

    Dr. CIPFL. Thanks for your leadership, sir.

    Mr. PORTER. The subcommittee will stand in recess for the vote that is taking place on the House floor, and the period should be about 15 minutes.


    [CLERK'S NOTE.—Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity represented by this witness]


Wednesday, February 4, 1998.



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    Mr. PORTER. The subcommittee will come to order.

    There's going to be another vote in probably 15 or 20 minutes, and we're going to try to get two witnesses in in that time, and I will try to keep quiet.

    William H. Mahood, M.D., President, Digestive Disease National Coalition, testifying in behalf of the Coalition. Dr. Mahood.

    Dr. MAHOOD. Mr. Chairman, thank you for the opportunity to appear before you today.

    I am Bill Mahood, I'm a practicing gastroneurologist, just outside of Philadelphia, in a little place called Abingdon, Pennsylvania. I am the President of the Digestive Disease National Coalition.

    We were founded in 1978, 22 professional and lay, that is patient-oriented, organizations. Mr. Chairman, the social and economic impact of digestive disease is enormous. Digestive disorders afflict approximately 62 million Americans, resulting in 50 million visits to physicians, 10 million hospitalizations, 230 million days of restricted activity, and nearly 200,000 deaths annually. The total costs associated with digestive disorders is estimated conservatively to be $56 billion a year.

    With these devastating numbers in mind, I would like to take the opportunity to thank you, Mr. Chairman, for what you have done in the past for the National Institutes of Health and for the Center for Disease Control and Prevention. Regarding the coming year, I would like to briefly discuss digestive disease research at NIDDK, colorectal cancer screening and prevention activities at the CDC, and hepatitis research and prevention.
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    Millions of Americans suffering from digestive disorders are pinning their hopes for a better life or even life itself on medical advances made through research supported by the NIDDK. Recent breakthroughs in the understanding of hemochromatosis, Crohn's disease, pancreatitis and other digestive abnormalities reinforce the need for continued support of NIDDK.

    Where the fiscal year 1999, DDNC is recommending that the NIDDK receive a 15 percent increase over last year. This percentage translates into $131 million over 1998. But at this point, Mr. Chairman, I would like to make clear that although DDNC strongly supports the concept of doubling NIH's overall budget in the next five years, we do not believe that these increases should come from the expense of other important public health service programs.

    Now, colorectal cancer is the third most commonly diagnosed cancer for both men and women in the United States. It's the second leading cause of cancer-related deaths. But we can prevent this caner from killing by proper screening, and we can even cure it if caught early. Mr. Chairman, there's a tremendous need to inform the public about the availability and advisably of screening. We need to educate health care providers with respect to colorectal screening guidelines.

    The recently initiated National Colorectal Cancer Screening Awareness program at CDC will address these needs. They are going to coordinate with national partners like our Coalition to develop an information program emphasizing the value of early detection. The digestive disease community hopes that this new program will do for colorectal cancer screening what CDC's breast and cervical cancer program has done for mammography and pap screening compliance.
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    Mr. Chairman, as the DDNC representative to the CDC colorectal screening program, I have seen first-hand the ambitious plan that CDC has to reduce the incidence of this devastating disease. As a result, we encourage the subcommittee to provide CDC with $5 million, an increase of $2.5 million over fiscal year 1998 for this vital and important campaign.

    Finally, Mr. Chairman, I would like to talk about one of the country's most dangerous and prevalent infectious diseases, viral hepatitis. More than five million Americans are currently infected with chronic hepatitis B or C. Overall, 165,000 new cases a year. Because chronic viral hepatitis can result in liver failure, liver transplantation at a quarter of a million dollars a case often becomes the only treatment option available.

    Already, chronic hepatitis C accounts for one-third of all liver transplants being performed in the United States. It's estimated that there are up to 10,000 deaths annually from hepatitis C. This number is projected to triple by the year 2010.

    DDNC is pleased that the NIDDK convened a hepatitis C consensus development conference last March. We believe that priority should be given to supporting the research recommendations developed by the consensus panel, particularly the development of vaccines for hepatitis C, although we urge making existing hepatitis B vaccines available at at-risk populations through an expansion of the CDC vaccination program.

    I appreciate the opportunity of being before you today, sir.

    [The prepared statement of William H. Mahood, M.D., follows:]
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    "The Official Committee record contains additional material here."

    Mr. PORTER. Dr. Mahood, thank you very much for your excellent testimony. We will certainly take your views into account when we come to mark up the bill.

    Thank you for being here.


Wednesday, February 4, 1998.



    Mr. PORTER. Myles P. Cunningham, M.D., Immediate Past President, American Cancer Society, testifying in behalf of the Society. Dr. Cunningham, nice to see you.

    Dr. CUNNINGHAM. Good afternoon, Mr. Chairman.

    It is indeed a pleasure and an honor to come before this committee again. My name is Myles P. Cunningham. I'm a surgical oncologist from Evanston, Illinois, St. Francis Hospital. I'm here as the immediate past president of the American Cancer Society.

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    May I please begin with a comment on the new cancer initiatives proposed in the President's budget. The American Cancer Society supports all initiatives to increase cancer research and put cancer prevention into practice. However, the American Cancer Society believes that biomedical research, access to clinical trials and tobacco prevention and cessation programs must be considered and funded on their own merits and not be held hostage to the uncertain funding flowing from equally uncertain outcomes of tobacco legislation.

    For the first time in history, we have witnessed a sustained decrease in cancer mortality and incidence. We know why this is so, and we know what we must do to accelerate this trend. While fewer people are dying overall, it is unfortunately not so true for the poor, the underserved, the minority Americans, who bear a disproportionate share of the cancer burden. Over and above all other funding priorities, we urge you to provide support for those activities, research, data collection, clinical interventions, that will let us serve those in greatest need.

    Even if treatment for cancer were to become 100 percent successful, the simple fact is that most Americans would rather not develop cancer in the first place. We can prevent cancer. A mountain of epidemiological research has now persuaded us over the last 15 years that approximately 70 percent of cancer is preventable.

    The impressive decline in lung cancer mortality recognized for the last five or six years is due simply to the fact that since the Surgeon General's tobacco report in 1964, you have been willing to fund tobacco cessation and avoidance programs that have worked. That includes programs for both cigarettes and smokeless tobacco.

    This is the essence of cancer prevention, cancer prevention at its finest. More than any other single prevention initiative, we ask that you sustain and expand efforts to protect children from the lure of the deadly addition of tobacco.
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    Mr. Chairman, 38 million Americans do not have a bad smoking habit. They are hopeless and craven addicts, addicted in their young teens and even earlier years, desperately trying to stop smoking and barely able to do so. Our government currently spends less than $50 million annually on tobacco control. This is less than the tobacco industry spends in just four days on promotions and advertising to expand their addict class and especially, regrettably, to seduce, to hook our kids.

    Mr. Chairman, we need to improve our support for ASSIST and coordinated national programs in an amount not less than $90 million, a mere pittance compared to the billions spent annually by the tobacco cartel. We must expand early detection and treatment access by increasing funding through signature public programs like CDC's breast, cervical and colorectal cancer initiatives. These are especially useful and warranted, because they target the underserved.

    Thank you, Mr. Chairman, for the Medicare Benefits Improvement Act. I'm provoked in part by my colleague Dr. Mahood, I ask that, did you know that screening for colon cancer now covered for Medicare beneficiaries is also an extremely effective prevention tool, that if widely applied could theoretically eliminate colorectal cancer by identifying and treating precursor lesions.

    Finally, Mr. Chairman, you are aware that the health care industry is now in the throes of blockbuster, mega merger deals. This industry is doing these deals because they, more than anyone, recognize the truly huge opportunities now available to eliminate human disease, especially cancer, through biomedical research. Biotechnology, molecular biology, gene research and all of the tools of modern scientific investigations, have brought us to the threshold truly of a revolution in modern scientific opportunity. We must seize this opportunity by substantially increasing our funding for cancer research.
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    We urge you to fulfill your commitment to a doubling of funds for both NIH and NCI.

    Cancer mortality and incidents, as I have said, are now beginning to decrease. This is an unassailable fact and a sea change in the immunology of this terrifying disease. The American Cancer Society asks you to join us in our challenge to the American people to reduce cancer mortality by 50 percent by the year 2050. This goal is a stretch, it's a reach, but it's doable if we all get behind it.

    We can meet this formidable goal only if we all do our part. Mr. Chairman, thank you for everything you've done in the past. Please continue to do your part for a healthy America.

    [The prepared statement of Myles P. Cunningham, M.D., follows:]
    "The Official Committee record contains additional material here."

    Mr. PORTER. Dr. Cunningham, I'll do my very best. We'll do our very best to meet the doubling goal that we've set. I don't know whether we're going to achieve it, or even a good start on it this coming year, but I have a very strong feeling that in the next year and the years after, that the chances will be quite good. It all depends on a very strongly growing economy. It's been doing wonderful, let's all keep it going that way. And we have a good chance of generating the resources we need to do these things.

    Thank you for appearing here this morning.
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Wednesday, February 4, 1998.



    Mr. PORTER. Next, we have Michele Licursi, Volunteer Regional Coordinator for FIRST's National Support Network, accompanied by her son, Ryan Licursi, testifying in behalf of the Foundation for Ichthyosis and Related Skin Types, which is FIRST.

    Nice to see you. Thank you for being with us.

    Ms. LICURSI. Thank you. Mr. Chairman and members of the subcommittee, my name is Michele Licursi. I am testifying as a mother and a representative of the Foundation for Ichthyosis and Related Skin Types, which is FIRST. Testifying with me today is my son, Ryan. He has a type of ichthyosis called epidermolytic hyperkeratosis, or EHK.

    I wish to thank the subcommittee for this opportunity to testify regarding funding for skin disease research and the budget for NIAMS. Ichthyosis is a family of genetic skin diseases characterized by dry, thickened, scaling skin. They are caused by genetic defects that are usually the result of genetic inheritance. There is no cure for ichthyosis and there are no truly effective treatments.
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    EHK causes the skin to be fragile. The slightest bump can cause the skin to break away. Blisters are common. Scaling and flaking are continuous. The skin is tight and cracks. The palms and soles are thick, making something as simple as holding a pencil or as natural as walking difficult and painful.

    Overheating is dangerous, and infections are a constant threat. We're experts now, but 12 years ago, like most people, we had never even heard of ichthyosis. We learned together the hard way. We found out that diapers rubbed the skin off Ryan's leg, that car seats and high chairs had to be lined with sheepskin, that his daily skin care routine took several people and a couple of hours.

    Relatives had to be taught how to pick him up and how to hold him. We no longer shopped for cute little outfits. We look for any clothes that his skin would tolerate.

    Shoes were out of the question for years, and still continue to be a big problem. Ryan has been hospitalized for infections, simple medical procedures are complicated. Our days and activities are planned around his skin care. We get stares and question from strangers. We have been accused of all kinds of child abuse.

    While the physical aspects of ichthyosis are obvious, the blows to one's self-esteem can be even more damaging. Ryan enjoys school, and has lots of good friends. But that's not the case with many kids with ichthyosis who are not as outgoing and confident as Ryan. Confident enough to tell you a little bit about living with ichthyosis.

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    Mr. LICURSI. I'm 12 years old and in the seventh grade. As you know, I have epidermolytic hyperkeratosis, and it stinks. There are many things that other kids can do that I cannot, because of my skin. It is very dry, fragile, and I blister very easily.

    Any contact sport is out. I can't be on a basketball team, because if anyone bumps into me, or knocks me down, my skin will rip. I can't be on a soccer team, because if someone kicks me or I get hit with a ball, my skin will come off.

    I often have blisters on my feet. I can hit the ball in baseball, but getting around the bases is another story. I'm always the last one picked for teams in gym class. In the winter, I even have trouble writing because the skin on my hands gets stiff and cracks.

    Another problem with having EHK is that every day I have to get up an hour earlier than all the other kids in order to soak in the tub for half an hour, have cream put all over my body and let it soak in before I put on my clothes. If I didn't do this each day, I would be so stiff and dry that I could not stand it. It hurts to do it, but it would be worse if I didn't.

    People in my town and school know me and understand my physical condition. When I go to the mall or any other public place, people stare and make comments. Any place I go, I leave a trail of skin. You will know I was sitting in this chair.

    I would really appreciate any research that can be done to cure this condition.

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    Ms. LICURSI. We recognize this subcommittee's strong history of bipartisan support for medical research funding and NIH. As a result, researchers have begun to identify the genetic mutations that cause EHK and several other forms of ichthyosis. We are excited about this progress and about the current research into gene therapy. We are hopeful about the possibility for an effective treatment or cure, but at this point, it's still hope. We continue to be frustrated by the lack of effective treatment options.

    We're also discouraged by the lack of available testing facilities. Genetic testing is possible today for types of ichthyosis for which the specific mutations have already been identified. However, these tests are generally unavailable except on a research basis.

    FIRST urges a 15 percent increase for NIH funding in the next fiscal year. FIRST also supports increased investment in translational research which would build upon this new scientific knowledge to develop practical applications for those with ichthyosis and other skin diseases.

    In 1992, FIRST testified regarding the need for a national registry. Today, as a direct result of your interest and support, we have the national registry for ichthyosis and related disorders, which helps generate researcher interest in ichthyosis and provides investigators with a pool of affected individuals with a confirmed clinical diagnosis resulting in significant savings and research time and dollars.

    Current funding for the registry expires in 1999, but its work must continue. Continued funding of skin disease registries will ensure these valuable resources will be maintained.
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    On behalf of our members, those with ichthyosis and their families, we thank this Congressional subcommittee for their time and attention.

    [The prepared statement of Michele and Ryan Licursi follows:]
    "The Official Committee record contains additional material here."

    Mr. PORTER. Ms. Licursi, thank you for your testimony.

    Ryan, you seem to be doing real well. I think it's great that you're here to testify to bring the attention of the subcommittee to the disease that you suffer from, because you're going to help other kids, because we're going to find a way to unlock this key and make certain that this disease doesn't exist any more.

    To the extent that we can provide the resources to scientists to do that, we are committed to doing just that. So we really appreciate your coming to testify. I think it helps a lot of other young people and others in your condition. I think it's terrific that you and your mom are here. Thanks so much.

    Ms. LICURSI. Thank you.

    Mr. PORTER. That obviously is another vote. We're going to try one more witness and see if we can get her testimony in before the bell rings again.

    [CLERK'S NOTE.—Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity represented by this witness]
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Wednesday, February 4, 1998.



    Mr. PORTER. Nancy Munro, RN, MN, CCRN, ACNP, Critical Care Clinical Nurse Specialist, Georgetown University, testifying in behalf of the American Association of Critical Care Nurses.

    Ms. Munro, you're going to have to explain afterwards the alphabet that is after your name.

    Ms. MUNRO. I certainly will. I'm Nancy Munro, I'm a clinical specialist at Georgetown University Hospital. I'm pleased to be here to present testimony on behalf of the American Association of Clinical Care Nurses in support of funding for the National Institute of Nursing Research, the Agency of Health Care Policy and Research, and the Title VIII Health Professions program.

    AACN is a not for profit association dedicated to the welfare of people experiencing critical illness or injury. AACN was founded in 1969, and has grown to be the world's largest specialty nursing organization, with nearly 73,000 members, representing the United States and 35 countries.
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    Our goal should be to translate the promise of scientific discovery into improved quality of life for all Americans. To accomplish this, we must continue to invest in medical research and the NIH. Towards this end, I encourage the subcommittee to support the recommendation of the Ad Hoc Group for Medical Research Funding, which calls for a 15 percent increase in the NIH budget for fiscal year 1999.

    It represents the first steps to double the NIH budget over the next five years. With that increased appropriation, AACN will work to ensure that NINR receives its fair share of the increase.

    AACN strongly supports NINR's goals of health care effectiveness, cost effectiveness, and assuring that the scientific agenda has a humane aspect and translates research findings into applications that improve the Nation's health.

    As nurses who provide care for the critically ill, one of the most important things we can do for our patients is provide relief for pain and suffering. Nursing affords a unique vantage point to examine which way pain affects patients and their families. Pain is a costly health care problem, prompting approximately 40 million visits to health care providers each year, and over $100 billion annually in lost productivity and health care expenses.

    Over the past year, NINR has reported two groundbreaking advances in pain research, one showing gender differences in response to analgesics, and the second indicating that sedatives given before surgery can actually block the action of medication given to relieve pain after surgery.
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    AACN currently sponsors Thunder Two project, a large multi-site research partnership project in partnership with several other nursing organizations. The purpose of this research is to examine pain perceptions and responses in critically and acutely ill pediatric and adult patients in selected procedures. Data collection is underway and hopefully will be completed by 1999. To date, over 200 sites are enrolled in the United States, Canada, Australia and United Kingdom.

    AACN also supports NINR's leadership in improving end of life care. NINR recently held a state of the science conference on symptoms of terminal illness, to address end of life issues in four areas: pain, dyspnea, cognitive differences and cachexia. AACN firmly believes research is needed to develop a scientific basis for critical care nursing practice to achieve a broad understanding of the role and impact of critical care nurses on patient outcomes.

    Many research projects funded by the AHCPR are gradually helping communities to refocus health care so it is truly driven by the needs of patients and their families. AACN was pleased to see that the patient budget includes $171 million for AHCPR and a $25 million increase over 1998.

    As you know, in 1990, Congress passed the Patient Self-Determination Act, which AACN believes has made significant progress in educating Americans about their right to make their own health care decisions. This is of particular interest to AACN in light of the Robert Wood Johnson study that followed 9,000 critically ill patients, and found discrepancies between the patients' end of life decisions and their actual treatment.

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    AACN currently is working to educate consumers about the Patient Self-Determination Act and its importance. Committee support for AHCPR has provided AACN with the resources to design a community outreach program to improve completion rates for advance directives. AACN's program, in conjunction with UCSF research on advance care planning, including advance directives, has specific emphasis on education, stressing definition and documentation of patient preferences, so in the event of a catastrophic event, the individual preferences can be honored.

    Additional funds were also received for the project as a result of AHCPR funding in 1998. AACN believes that education is fundamental for professional growth, and to the excellence in clinical practice and optimal patient outcomes. Practitioners must confirm to a lifelong learning to assure that they remain competent, fulfilling their obligations to patients and the families that they serve.

    According to the Bureau of Labor Statistics, the demand for health care professions is expected to grow to 47 percent by the year 2005, with the need for advance practice nurses among the greatest. In addition, an Institute of Medicine study on the role of nursing staff in hospitals found that more advanced or more broadly trained registered nurse work force would be needed in the future. Such training is currently funded under programs funded under Title VIII of the Public Health Service.

    AACN is pleased that Congress has provided an increase in health professions training, and hopes it will again demonstrate support in 1999.

    In closing, thank you, Mr. Chairman, for this opportunity and your support of nursing research in the NIH.
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    [The prepared statement of Nancy Munro follows:]
    "The Official Committee record contains additional material here."

    Mr. PORTER. That was perfect, Ms. Munro, thank you.

    I have an RN in mind and CCRN I assume is critical care?

    Ms. MUNRO. That's a certification by AACN.

    Mr. PORTER. What's MN?

    Ms. MUNRO. Masters in Nursing.


    Ms. MUNRO. I'm proud to say that I just completed my Acute Care Nurse Practitioner certification.

    Mr. PORTER. Okay. Just for my education.

    Obviously, we are listening very intently to what you say, and we agree with you that a lot of progress has been made at the National Institute of Nursing Research. We want to be supportive and we really thank you for coming here to testify in their behalf today.

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    Ms. MUNRO. We appreciate it.

    Mr. PORTER. Also I might add, health professions is a high priority. Mr. Bonilla has been one of our leaders on this. I think he will tell you as well, that it would be helpful if the word got over to our colleagues on the other side of the rotunda that this is a very high priority, too.

    Ms. MUNRO. We're definitely trying.

    Mr. PORTER. Thank you, Ms. Munro.

    The subcommittee will stand in recess until these votes have been completed.



Wednesday, February 4, 1998.



    Mr. PORTER. The subcommittee will come to order.
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    Our next witness is Donna A. Meltzer, Chair, Friends of NICHD Coalition, and testifying in behalf of the Coalition.

    Ms. MELTZER. Thank you, Mr. Chairman.

    I'm pleased to be able to testify today on behalf of the Friends of NICHD Coalition, a coalition of nearly 100 organizations that support the extraordinary work of the National Institutes of Health, with a special focus on the National Institute of Child Health and Human Development.

    Our coalition, which is in its twelfth year, includes scientists, health professionals and advocates for the health and welfare of women, children, families and people with disabilities.

    A recent quote I saw in a Washington Post article said, I will protect my child from everything except a life lived passionately. I noted this quote, as it seemed to summarize exactly the way my husband and I hope to raise our children. While I can encourage my young son to live passionately, the opportunity to do so will ultimately be his.

    However, as a parent, it is my job to protect his health and nurture his well-being in every way possible. Thanks to the work of the NICHD, many parents, including myself, have been able to deliver healthy babies and do a better job of protecting them. With testing such as that for PKU, a test which was developed by NICHD, parents are able to prevent, to the best of our ability, the occurrence of mental retardation in our babies. We now know that we must put our babies to sleep on their backs to prevent SIDS, and we working moms can feel better about having our children in day care, thanks to the information that NICHD has been collecting in the ongoing child care study.
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    I'm especially pleased today to be able to thank you for your strong support for NIH. In spite of the recent tight budgets, you have held fast to your belief in investing in America's health. You have turned to us, the Friends of the NICHD, to help share knowledge about NICHD's work with you and your staff.

    Last winter, we were able to bring nearly 50 appropriations staffers to the Bethesda campus, where they were able to see first-hand what it's like to be both a patient at NIH as well as lab researcher. It is our hope to expand that knowledge to all members of Congress and their staff in June, when the Friends of NICHD will host, as part of NICHD's 35th anniversary year, a scientific exhibition and reception.

    It is unbelievable to all of us to think that just two short years ago we had a budget deficit of $292 billion. Now in 1998, we are hearing a different and exciting word: budget surplus. Whether or not a surplus can be made available for use, the Friends of NICHD would like to see surplus equal solutions. For 35 years, the NICHD has been providing solutions through research, solutions for the world, the Nation, and the families that live in your town.

    Solutions such as prevention of premature delivery. NICHD researchers have found that not only can maternal infection cause amniotic infection, but that the actual premature delivery can be stimulated by the fetus attempting to escape a dangerous uterine environment in order to protect itself. However, the resulting premature birth may pose an even greater risk to the fetus.

    Therefore, NICHD is developing a rapid method for detecting infection, allowing clinicians to intervene with antibiotics more quickly, and to help eliminate the infection causing the premature birth.
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    As you well know, NICHD is home to the Back to Sleep campaign. I am thrilled to tell you today that the latest statistics show that SIDS deaths have been reduced nationwide by 38 percent and brand new data just in from the State of California shows a 50 percent decline in SIDS-related death.

    Another public information campaign is finding solutions for osteoporosis and bone density loss. The milk mustache campaign, targeted especially at getting young women to drink milk, is effectively using the media to get across the important message that calcium is critical for a healthy adult body, and that drinking milk can still be cool.

    NICHD is funding solutions for genetic and related disorders like fragile X syndrome, Rett syndrome, Downs syndrome and others. NICHD research has linked specific errors on human chromosome 15 to highly specific behavioral disorders of major health importance. This information can lead not only to cures for the syndrome, but other abnormalities that often accompany the syndrome.

    Mr. Chairman, these are but a few examples of solutions being created through NICHD research. On behalf of the Friends Coalition, I urge you to continue your support for more advances yet to come and recommend that the NICH receive $776 million in funding for fiscal year 1999, a 15 percent increase. Our recommendation is commensurate with the request of the Ad Hoc Group for Medical Research Funding.

    In 1961, President Kennedy said, we have conquered the atom, but we have not yet begun to make a major assault in the mysteries of the human mind. With your continued support, we can make a major assault on those mysteries. We thank you for your leadership, which offers healthier futures for all of our children.
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    Thank you.

    [The prepared statement of Donna Meltzer follows:]
    Offet Folios 3228 to 3236 Insert here

    Mr. PORTER. Thank you very much for your good testimony, Ms. Meltzer. Obviously we think very highly of Dr. Dwayne Alexander and NICHD. It's wonderful they have friends like you. Thank you for being here to testify.

    Ms. MELTZER. Thank you very much.


Wednesday, February 4, 1998.




    Mr. PORTER. Susan Sanabria, Vice President, Advocacy Programs Department, National Multiple Sclerosis Society, accompanied by Carol Downing, Maryland Chapter Representative, of the Society, testifying in behalf of the Society.
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    Susan, it's wonderful to see you.

    Ms. SANABRIA. As it is to see you, my former boss.

    Mr. PORTER. Right. Susan used to be on my staff. Don't remind me—well, do remind me of the dates.

    Ms. SANABRIA. When you first elected, 1980 to 1981.

    Mr. PORTER. Just a short time ago.

    Ms. SANABRIA. You look wonderful.

    Mr. PORTER. So do you.

    Ms. SANABRIA. I'm very grateful for the opportunity to come and talk with you about funding for the agencies that are near and dear to our heart. The National Institutes of Health, and within the Department of Education, the Rehabilitative Services Administration and the National Institute for Disability Research.

    With me today is Carol Downing, from our Maryland Chapter, who will be presenting our testimony.

    Ms. DOWNING. Thank you, Mr. Chairman.
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    I appreciate the opportunity to be here today to speak to you on behalf of the National Multiple Sclerosis Society, which is an organization that directly supports biomedical research and provides services through its chapters across the country to a third of a million people with multiple sclerosis and their families.

    Let me briefly tell you my story. I was diagnosed with MS in 1984. At that time, I was a single mother, just laid off from my job as a paralegal and benefits specialist, and not surprisingly, under great stress. I was hospitalized for MS many times, and I was in a wheelchair for two and a half years. I'm now able to use canes or a walker, the mobility impairments are still part of my daily routine.

    My close relationship with the Maryland chapter of the MS Society began when I discovered that my home of 20 years was no longer accessible. Staff at the chapter worked with my family to make our new apartment accessible. I'm not a disability and research advocate for the Society. My chapter serves at least 3,500 people and their families throughout the State.

    The chapter raises money for private biomedical research contributing to the National MS Society's $18 million research budget. As a national research associate at the Maryland chapter, I keep up with research trends at both the society and at NIH as well as rehabilitation research at the Department of Education.

    MS is a progressive, degenerative disease of the central nervous system, unpredictable in its course and devastating in its impact, since it can cause spasticity, tremors, abnormal fatigue, bladder and bowel dysfunction, visual problems and mobility impairment. The disease usually strikes between the ages of 20 and 40, just as a career and family life begins and develops.
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    Ending the devastating effects of this cruel disease depends on the discovery of a cure or new therapies to control, treat and eventually halt its progression. I have participated in a number of clinical studies to evaluate new treatments for MS. Recently, an FDA advisory panel approved three new drugs, Avenex, Betaserin and Copaxone. These injectable drugs have shown positive therapeutic effects on the underlying disease in some people.

    Building on essential basic and clinical research, scientists have made these and other significant strides in removing the mystery from this unpredictable, destructive disease. We must greatly enhance this progress, as I continue to hope that the research I'm asking you to fund today will improve my life and those of others living with MS.

    The mission of the National MS Society is to end the devastating effects of MS. You have the ability to advance this admirable cause by significantly increasing funding for research projects and centers at both the NIH and the Department of Education on rehabilitation.

    The National Multiple Sclerosis Society believes that the following appropriations are needed in order to take advantage of current opportunities in biomedical and rehabilitation research. First, a 15 percent increase for the National Institute of Neurological Disorders and Stroke, where research on the nervous system and the brain takes place.

    You may have read in the New York Times last Wednesday about a study that further delineates what happens to the nervous system of people with MS. The more we know about the disease, the more we can target treatments for early intervention.
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    Second, a 15 percent increase for the National Institute of Allergy and Infectious Diseases. MS is an autoimmune disease. The results of several important studies at the NIAID are leading new possibilities for MS treatments as well as knowledge about genetic susceptibility.

    Third, a 15 percent increase for all of NIH, including the Center for Medical Rehabilitation Research. Concerning the NIH budget as a whole, we at the Society certainly support the popular idea of doubling the NIH budget in five years. There are many fruitful lines of research to pursue.

    Finally, we ask for a 7 percent increase for the Rehabilitation Services Administration and for the National Institute of Disability and Rehabilitation Research within the Department of Education. With additional funds, we could enlarge studies such as the following, the effects of Betaserin have now been studied in a group of subjects with early, mild, relapsing, remitting MS to test the drug's ability to reduce breakdown of the blood-brain barrier. In those studies, all have had dramatic reduction in lesions with complete cessation of disease activity as measured by MRI.

    These findings suggest an important site of action for beta interferons. The studies also provide further evidence of the usefulness of MRI. Studies such as these are the foundation for more research if there were more resources.

    On behalf of the National Multiple Sclerosis Society, let me echo what others have stated at these hearings. Let research move forward at a rapid pace.
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    Thank you very much.

    [The prepared statement of Carol Downing follows:]
    "The Official Committee record contains additional material here."

    Mr. PORTER. Sue, I can't remember whether Don Grossman was our campaign treasurer at the time you were on staff, but his wife, Susan, contracted MS probably about 10 or 12 years ago. She had always been a very active athlete, she was a championship golfer. It's just been devastating to her and to her family.

    So I've had an up-close look at the effects of this disease on someone I know very, very well. Believe me, we want to do everything we possibly can to get the resources to the research scientists who can help.

    We very much appreciate your coming to testify today, Susan and Carol both. We'll do our very best to try to reach those goals and at least give us a hand with the budget people.

    Ms. DOWNING. Thank you very much.

    Ms. SANABRIA. We promise we will.

    John, if I may speak as a member of your staff, past and present, you've done us proud.
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    Mr. PORTER. You're very kind to say that, Sue. I've had a wonderful staff all these years, too.

    Thank you.

    [CLERK'S NOTE.—Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity represented by this witness.]


Wednesday, February 4, 1998.



    Mr. PORTER. Miriam Schneidmill, Member, Board of Directors, The National Pemphigus Foundation, testifying in behalf of the Foundation. Welcome.

    Ms. SCHNEIDMILL. Good afternoon, members of the subcommittee.

    My name is Miriam Schneidmill. Before I begin my testimony, I would like to thank you, especially Chairman Porter, for your strong support of the NIH. I am here today as a representative of the National Pemphigus Foundation. The National Pemphigus Foundation joins with the Ad Hoc Group for Medical Research Funding, the National Institute of Arthritis, Musculoskeletal and Skin Diseases, and the Coalition of Patient Advocates for Skin Disease Research in asking for a 15 percent increase in the budget of the NIH.
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    In 1992, I was diagnosed with pemphigus vulgaris, PV. PV is one of a group of blistering skin conditions which includes pemphigus foliaceous and bullous pemphigoid, among others. The National Pemphigus Foundation has been established to encourage communication about, and research into, these blistering diseases.

    Pemphigus vulgaris is a rare autoimmune disease—I am allergic to my skin. People with PV form blisters on their skin and mucous membranes. These become sores, lesions, erosions that do not heal. Without treatment, the patient suffers the fate of a burn victim, infection, shock, and ultimately death.

    Before the discovery of the gluticosteroids, PV was 100 percent fatal. Today prednisone, a gluticosteroid, remains the effective known treatment. However, prednisone has many devastating side effects. It is associated with osteoporosis, diabetes, cataracts, myopathy, mood swings, and even psychosis. The adjuvant treatments, often from the chemotherapy shelf, like Cytoxan, Methotrexate, and Imuran are associated with liver damage and a greater incidence of cancer.

    It took more than 12 months for my diagnosis of PV. I went from doctor to doctor and was treated for folliculitis, herpes and yeast before someone finally biopsied the lesion on my scalp and discovered it was PV. The delay, in my case, was due to the mild presentation the disease was making. For those with a few lesions in their mouths followed by extensive skin involvement, the diagnosis is much quicker, but they are much more ill than I was.

    However, the treatment is basically the same for all of us, high doses of prednisone. I have been on three courses of high dose steroids. Each time, I immediately develop side effects. My face became round, I gained weight, my muscles became weakened. I was unable to walk more than one block. I was fortunate, my friend David, 18 when diagnosed, couldn't walk at all. My friend Stephanie died of the complications of treatment at age 22.
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    Although I am only 48 years old, I have an incipient cataract and osteoporosis. I am at risk for spontaneous fractures to my spine. My friend Hannah Lisa suffered such a fracture less than six months after a bone density scan that showed her spine to be above average. As a result, she is in constant pain and has lost two inches of height.

    I am here today to talk about what we need and what people with other rare diseases need: research. First, we need basic research. Today we know that in pemphigus, patients produce auto-antibodies to the demecental proteins of the skin. These proteins are what hold the skin together.

    However, there is much we do not know. We do not know how or why these antibodies form. We also do not know the role that environmental factors such as viruses, bacteria, allergens and toxins play in this disease.

    Second, we need clinical research. I believe that the NIH needs to fund more clinical research, because funds from the traditional sources are drying up. In the past, clinical research was supported not by the pharmaceutical companies or the NIH, but by the academic health centers, AHC. Income from patient care was used by the AHC to support clinical research.

    Now, the research function of the AHC is in danger because of the low rates of payment made to hospitals by managed care organizations. The result of the lower rates is that the young clinical investigator is forced to see more patients, so that there is neither time nor money for clinical research.
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    I am here today to tell you that a better, less life threatening treatment for pemphigus can only be discovered by continuing to support the basic research mission of the NIH, and by encouraging greater support for clinical research. The money you make available for research is holding my skin together. I hope that for these reasons you will support a 15 percent increase in the NIH budget.

    [The prepared statement of Miriam Schneidmill follows:]
    "The Official Committee record contains additional material here."

    Mr. PORTER. We are going to do our best, Ms. Schneidmill. I have to say, I'm not personally familiar with PV, but I am very familiar with the effects of high doses of prednisone and the side effects that that can cause. There's got to be a better way to treat this disease. It's a powerful drug that can have its own effects on your health in other ways.

    So believe me, we'll do our best. Thank you for coming here to testify.

    [CLERK'S NOTE.—Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity represented by this witness.]


Wednesday, February 4, 1998.
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    Mr. PORTER. W. Bruce Fye, M.D., FACC, Chairman of the American College of Cardiology's Government Relations Committee, testifying in behalf of the College.

    Dr. FYE. Mr. Chairman, I am Bruce Fye, Chair of the Government Relations Committee of the American College of Cardiology, a 24,000 member professional society and teaching institution. I also chair the cardiology department at Marshfield Clinic, a 525 physician group practice in Wisconsin.

    I am here today on behalf of the American College of Cardiology to ask you to renew your major commitment to the National Heart, Lung and Blood Institute. As the college's official historian and the author of a recent book on the history of American cardiology, I am especially pleased to have this opportunity to speak in support the Institute on its 50th anniversary.

    The first Congressional appropriation to NHLBI was just $500,000. Since then, thanks to this subcommittee's consistent support, the Institute's budget has grown to $1.5 billion. Happily, as a result of this Nation's investment in biomedical research, the prospects for combatting the catastrophic consequences of cardiovascular disease are better than ever. There is much to be done, however.

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    Today, heart disease claims more lives than any other illness. This year alone, one million Americans will die as a result of cardiovascular disease. More than 50 million Americans, about one-fifth of the population, are living with some form of cardiovascular disease.

    Fortunately, most of them are living better and longer lives, and more productive lives, as a result of new drug and device therapies, surgical innovations, enhanced emphasis on prevention, and innovative public educational programs, all made possible through NHLBI-funded research.

    Our citizens, many of them potential cardiac patients, do not want us to become complacent as we celebrate the many advances in the prevention, diagnosis and treatment of cardiovascular disease that have resulted from our Nation's pioneering research and educational programs. The main goal of investing in cardiovascular research is to prevent premature death and improve the quality of peoples' lives. We also want to control the enormous social and economic burden of cardiovascular disease.

    In 1998, the total economic impact of heart disease in the United States is projected to reach $175 billion if lost productivity is factored into the equation. Medicare paid about $29 billion for the treatment of heart disease in 1995 alone.

    Research is a major tool to help us cut these costs. Think of the impact that research had on tuberculosis and polio. Major public health problems just a few decades ago.

    In this extraordinary era of molecular biology, NHLBI funded researchers are on the brink of making many major discoveries that should yield significant cost savings in the area of cardiovascular disease. Exciting new discoveries by NHLBI funded researchers are already having a major impact on heart care.
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    For example, we know from a recent clinical trial that the risk of developing heart failure can be cut in half in older persons with hypertension if they are treated with a low dose diuretic. The benefits are even greater in patients who have had a heart attack.

    Heart failure is regrettably a common and very serious problem that we must work harder to prevent. Because there are more than 400,000 new cases of heart failure annually in this country, the potential benefits from this type of research could be enormous.

    Innovative research in human genetics and molecular biology holds great promise for the prevention and early diagnosis of cardiovascular disease. We are just beginning to realize the remarkable potential of this fertile area of research. For example, NHLBI-funded investigators recently identified a genetic marker for one cause of hypertension. Like other genetic markers for diseases that are preventable or treatable, this holds great promise for reducing the impact of hypertension and its serious consequences.

    Early reports from NHLBI-funded researchers working on gene transfer techniques and cardiovascular disease are equally promising. Preliminary findings suggest that this innovative approach might slow the development of atherosclerosis in vascular grafts such as those used in coronary artery bypass surgery. Other studies suggest that it may be possible to promote recovery of cardiac function after a myocardial infarction by introducing healthy heart cells into weakened heart muscle.

    By continuing this Nation's major investment in biomedical research in general and NHLBI-sponsored research in particular, Congress will help literally thousands of investigators make discoveries and advance knowledge. As researchers open new paths to and through medical frontiers, it is exciting to contemplate the implications for the future health of our citizens. Already, as a result of a multitude of discoveries and innovations, thousands of highly skilled cardiovascular specialists are performing procedures such as coronary angioplasty and prescribing medical treatments that were unimaginable just a few short years ago.
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    This is not just about treatment. Health care professionals are also promoting powerful prevention strategies that have been validated by NHLBI-sponsored researchers. This year the Institute will convene a special panel that will help develop recommendations for the more rapid dissemination of research findings that speak to the important issues of prevention and the effective treatment of cardiovascular disease.

    The need to reduce the enormous social and economic costs of cardiovascular disease is a compelling reason to increase the NHLBI budget significantly. The need has never been greater. The United States must prepare itself, both scientifically and fiscally, for the inevitable increase in the incidence of cardiovascular disease that will accompany the graying of the so-called baby boomers generation.

    I hope the subcommittee shares my optimism about the unique opportunities that our scientists and clinical investigators now have to achieve their longstanding goal of conquering this Nation's number one killer. In summary, the American College of Cardiology would like to encourage you to continue to generously fund the National Heart, Lung and Blood Institute. It is a wise investment in our Nation's future.

    Mr. Chairman, I deeply appreciate having this opportunity to testify before the subcommittee.

    [The prepared statement of W. Bruce Fye, M.D., follows:]
    "The Official Committee record contains additional material here."

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    Mr. PORTER. Dr. Fye, thank you for your very good testimony. I have to say that, I think we've said this this morning, sometimes we see so many panels that I don't know what I've said to them, but we have historically, you mentioned NHLBI increasing from $500,000 to $1.5 billion, if you look over the history of the funding of NIH, it has increased on average about 3 percent in real terms each year above inflation.

    The problem in not being able to fund worthy science is not that we haven't increased funding for NIH. We've done that. But science has increased the opportunities and the quality of the research available to fund faster than we've generated funds to keep up with it.

    That's exactly the reason why we have to look at a goal of very rapidly increasing overall funding for NIH, because we're falling behind the curve of scientific opportunity that's available to us. In the process, of course, discouraging a lot of young investigators who otherwise would be excited to stay in the field if they had an opportunity to see the research that they have proposed being funded.

    We're going to do our best to meet that challenge. It's a very real and very important challenge. One of the previous witnesses had mentioned, and you had mentioned, clinical research that we also think is under a great deal of siege by reason of the reorganization of our health care delivery systems in the country. In a way, it isn't the primary responsibility of this subcommittee. But it's certainly a great concern of the subcommittee that many of our academic medical centers are finding themselves really squeezed by the lack of revenues that used to be there under our previous system of providing payment for public programs.

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    So these are real challenges and we're going to do the best that we can to meet them. Thank you for testifying.

    Dr. FYE. Thank you very much.


Wednesday, February 4, 1998.




    Mr. PORTER. I'm going to ask Dr. Bisgard if, Mr. Johnson, who is witness number 14 on the list, has advised us that he has a plane to catch. Is that a problem? Not a problem. Thank you very much, sir.

    Douglas A. Johnson, Executive Director of the Center for Victims of Torture, accompanied by Manouchehr Dusti, torture survivor, small business owner, testifying in behalf of the Center for Victims of Torture.

    Mr. Johnson.

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    Mr. JOHNSON. Thank you, Mr. Porter. Thank you for the opportunity to discuss the importance of providing rehabilitation services for victims of torture. I wish I had time instead to hear about Turkey and your trip, but perhaps at another point.

    We're referring to people now residing in the United States who were tortured by foreign governments, although we would include many Americans who we've seen at the center who were also tortured abroad. We estimate there are between 300,000 and 400,000 survivors of government-sponsored torture now residing in the United States.

    One of those is Mr. Manouchehr Dusti, of Iran, who's here with me today. Besides the very difficult but common challenge that he and other refugees have of adjusting to a new culture and language in exile, torture survivors must also cope with physical pain and often very debilitating emotional impacts of torture. Nightmares and flashbacks, anxiety disorders, depression, post-traumatic stress disorder, these symptoms can adversely affect their relationships with their family, their community, and their ability to secure employment.

    These are profound humanitarian issues which should be of concern to us. But there are other important reasons for us to care about this population. Torture victims are largely targeted because they were leaders in their communities, that their governments decided to fear what they were doing, what they thought about. They were often in the forefront of a struggle for democracy and human rights in their societies, some were opposition party leaders, others were leaders in human rights, workers rights, religious freedom, the media.

    The Center recently concluded a five year retrospective study for the National Institute of Mental Health. Those findings underscore the previous leadership role that torture survivors filled in their societies. Over 50 percent of our clients, for example, had college degrees. Twenty percent had graduate professional degrees. They had major areas of responsibility in their countries. Their societies had often invested heavily in them, in their education and in their experience before the government decided that they were dangerous to the government.
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    Nearly all of our clients defined one aspect of their healing as becoming self-sufficient again, of taking care of their families, of making contributions to their community. They've had a taste of success and of making a difference. But they're now hampered by the symptoms of torture.

    We propose that this means helping survivors of torture is also a very good investment for our communities and our Nation. They are both highly educated and very highly motivated to make a valuable contribution to our society, as demonstrated by our clients over and over again. They are now in our communities, our neighbors, they're our people, and our people will benefit by restoring their health and recovering their leadership.

    There are many other things to be said in our discussion, which I will simply leave in the written testimony in order to give Mr. Dusti an opportunity to speak about his experience. In the past, the appropriations committee has urged ORR to become involved in this issue. ORR has issued a very small funding request for training. But it has not taken any leadership in providing funding for services.

    There are now 15 treatment centers around the United States who are providing care for victims of torture. They are all doing so without any funding of any support from either their State or Federal Governments, and largely are not supported by the foundation community, which considers torture and treatment to be an operating cost as opposed to a new initiative that they would support.

    It is our hope that you will pursue the issue with ORR in its future testimony about how they can fulfill the mandates that you've laid out for them before. It's also our hope that you will earmark funding within HHS that will support direct treatment services for victims of torture, to help this community recover and also for the U.S. to meet its obligations under the convention against torture.
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    I'd like to introduce Mr. Dusti, who was a business leader in Iran, but became very active in the opposition to Khomeini's regime.

    Mr. DUSTI. Good afternoon, Mr. Chairman.

    My name is Manoucher Dusti. I came from Iran in 1988 to the United States.

    I have been imprisoned and tortured by my government. I have been in business long enough, but because of my activity against the government, my government, I involved and went to prison and torturing.

    When I got to the United States, at Hambling University, I had a lot of trouble. The government seized all my assets, all my money, everything is gone. Suddenly, I found myself homeless, hopeless, like a lot of unknown people who have been doing lots of things, but in the same situation, going to bed without anyone knowing. That's tough.

    We work all our life, but no one can bring our mind down. I find myself in the United States, in the safest country on the earth, lonely, homeless and miserable. Some people referred me to the Center for Victims of Torture. During a three to four years period, I got back on my feet again. I worked hard.

    They gave me hope, trust, how to get back with my life without being scared, without nightmares, without lots of problems day and night. During the day, I am scared all the time, thinking someone will catch me during the night, I get nightmares of how they tried to execute me. I wish they did, but they never done it. All these things are with me every day.
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    Now I'm in the position to control those things. Thanks to the Center for Victims of Torture, I believe there are lots of people like me around this corner of Washington. Lots of people need help. There is no, we need lots of things to get back to community and health.

    I am married, I have a beautiful son, and I employ 50, 60 people now. I have two, three business, from homeless in five years, six, got back to business, and giving back to my community. This is the place my son is being raised. I hope my son one day be like you to help in the community, helping the people.

    I take this moment and say it, lots of people are dying without anyone knows. They are unknown heroes. If someone is executed, something happens, everybody knows it, everybody says it. But some people have been tortured and no one knows. They go in the darkness and kill themselves, because there is no hope in that moment. And it is tough, very tough.

    I believe we need lots of centers around this United States. There are lots of people coming down here, this is land of opportunity. This is the promised land to us, land of freedom. We need that.

    Thank you.

    [The prepared statement of Douglas Johnson follows:]
    "The Official Committee record contains additional material here."

    Mr. PORTER. Mr. Dusti, thank you for reminding us. I have to say that Doug Johnson does some wonderful work, and we want to be as supportive as we possibly can of his efforts. You've highlighted for us the needs of people like yourself who have gone through what you've gone through.
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    We'll do our very best to be responsive. Thank you.

    [CLERK'S NOTE.—Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity represented by this witness.]


Wednesday, February 4, 1998.




    Mr. PORTER. Gerald Bisgard, Ph.D., President, Wisconsin Association for Biomedical Research and Education, Department of Comparative Biosciences, University of Wisconsin, School of Veterinary Medicine, accompanied by Gale Davy, Executive Director, Wisconsin Association for Biomedical Research and Education, both testifying in behalf of the Association.

    Dr. Bisgard.

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    Dr. BISGARD. Chairman Porter, we thank you for the opportunity to testify today.

    I'm Gerry Bisgard, President of WABRE, Wisconsin Association for Biomedical Research and Education, and professor of comparative biosciences at the University of Wisconsin-Madison.

    WABRE is a non-profit educational organization. Our mission is to provide public education on scientific issues to the citizens of Wisconsin. The Association is supported by the State's academic research institutions, hospitals and clinics, bioscience businesses, and community organizations concerned with public health.

    Wisconsin scientists have contributed immensely to our Nation's public health and scientific knowledge. They are helping to map the human genome, creating new drugs and prevention therapies for breast cancer, hypertension, coronary artery diseases, farmer's lung disease, developing new vaccines, developing new techniques for blood transfusions and safer anesthetics.

    It should also be mentioned that the drug coumadin, which one of our previous testifiers was taking, Dr. Greenberg, was discovered at the University of Wisconsin.

    My research focuses on the studies of respiratory illness. The University of Wisconsin is one of the leading state universities for biomedical research in the Nation. However, research is no longer the exclusive purview of academic centers in Wisconsin. One of the largest centers for epidemiological studies in the world is found in the small town of Marshfield, Wisconsin, home of the Marshfield Medical Research Foundation, and the National Farm Medicine Center.
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    In Wausau, the non-profit CARE Foundation is building on research conducted nationwide by expanding clinical research to the residents of this small city and surrounding communities. For medical school clinics in the central city of Milwaukee to a small hospital in the north woods of Rhinelander, more Wisconsin patients are receiving the benefits of medical research.

    Wisconsin scientists, like scientists throughout our Nation, are working diligently in the public interest. But all scientists are having a difficult time securing funding for this valuable research.

    We support the proposal of the Ad Hoc Group for Medical Research Funding, which calls for a 15 percent increase in funding for the NIH in fiscal year 1999 as a first step towards doubling the NIH budget over the next five years.

    We recognize the difficulty in achieving this goal under current spending limits. We don't envy your job. But we ask that all members of Congress explore all possible options to identify ways to provide the additional resources needed to support this increase.

    We recognize the Congress and this committee have been supportive of research in the past, and we thank you very much for that support. You should know that the public is supportive of your efforts as well. A statewide poll commissioned last year by Research! America showed that 60 percent of Wisconsin residents favored doubling our national spending on medical research by the year 2002. Similar polls in Alaska, California, Florida, Louisiana, Ohio, Pennsylvania and Texas show similar results.
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    Medical research is so valuable to our public health, medical education, controlling health care costs and work force productivity that it provides a remarkable return on our public investment. WABRE has recently carried out an analysis of this public investment in biomedical research. This study showed that Americans earned $81 for every dollar spent on medical research and development in direct and indirect economic benefit, an incredible return on investment.

    How much would we invest? Studies comparing various rates of investment in biomedical research since 1950 show that the rate of return remains relatively constant, regardless of the investment. In other words, over the course of nearly 50 years, we have not yet approached a maximum investment ratio where the rate of return begins to decline relative to the value of that investment.

    If we increase our investment, we will reap strong health and economic return on the investment. That much is not in question. What is in question is, how much can we afford to invest. That is the question you in Congress must answer.

    Chairman Porter, the last three post-doctoral fellows trained in my laboratory to pursue careers in academic research have elected alternate careers because they see other young researchers failing to obtain funding. And they see senior researchers losing funding.

    Increasing the NIH budget will greatly increase our ability to keep talented young scientists working where their hearts are, in biomedical research in the public interest. On behalf of active researchers like me, on behalf of young scientists who would like the opportunity to serve the public, and on behalf of the people of the State of Wisconsin, WABRE asks your support for a 15 percent increase in funding for the NIH.
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    Thank you very much.

    [The prepared statement of Gerald Bisgard follows:]
    "The Official Committee record contains additional material here."

    Mr. PORTER. Dr. Bisgard, thank you for your testimony.

    Am I correct that Dr. Fye, who testified before you, is also from Marshfield?

    Dr. BISGARD. We are not from Marshfield, but we were delighted to hear that somebody else from Wisconsin was here. Gale said she recognized his name but didn't know him.

    Mr. PORTER. When you mentioned Marshfield in your testimony, I had noticed in his curriculum vitae that he was from Marshfield. He's at the Marshfield Clinic.

    Dr. BISGARD. Marshfield is a center of excellence in medicine, which is surprising for such a small city.

    Mr. PORTER. He lives in Marshfield. I assume that's near Madison?

    Dr. BISGARD. No, that's 100 miles or so.
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    Ms. DAVY. Actually, Marshfield has a very interesting story. It was basically founded as a clinic, a rural clinic. It's actually in central Wisconsin near the city of Wausau. It has just developed an excellent research program. It's actually the third largest research center in the State of Wisconsin right now, but it's not an academic research center. It's affiliated with the clinic and the hospital.

    Mr. PORTER. It just happened that you were talking about Wisconsin, you mentioned Marshfield, he came from Marshfield and you didn't know one another?

    Dr. BISGARD. Independent Marshfield connection.

    Mr. PORTER. We appreciate and obviously agree with the thrust of your testimony. As I said, we're going to do our very best to be there.

    Thank you so much for coming to testify.

    Dr. BISGARD. Thank you.

    [CLERK'S NOTE.—Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity represented by this witness.]


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Wednesday, February 4, 1998.



    Mr. PORTER. To accommodate my colleagues' schedule, I'm going to go out of order and call on Bettye Green, member of the Board of Directors of the National Breast Cancer Coalition and Founder of Women in Touch, an Indiana based breast cancer group, to testify in behalf of the National Breast Cancer Coalition.

    To introduce her, our colleague Representative Tim Roemer. Tim, thank you for coming down.

    Mr. ROEMER. Thank you, Mr. Chairman. Thank you for your time.

    I'm going to be brief so you can get to my constituent. I just want to introduce her to you and to members of Congress hearing this testimony. First of all, before I introduce my constituent Bettye Green, I want to tell you that she's traveled here today with her grandson, sitting to her left, who is Anthony Scott from South Bend, Indiana. He looks better than I do, Mr. Chairman. Today, he's in that dapper suit. Also her cousin Anthony Shern from Washington, D.C., over here to my left and your right, Mr. Chairman.

    I know her testimony is going to be of great value to you and members of the committee. Bettye Green is not just a constituent of mine. She is a strong community leader. She has been a valued mentor to me, and I am honored to say she is my friend.
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    Bettye has taken one of the most devastating events that can happen to a human being and turned it into a crusade that has educated thousands of people around Indiana and around the country. A nurse with over 20 years of experience at St. Joseph Medical Center, she also serves on a number of prominent national boards that deal with breast cancer awareness and education.

    There are too many for me to number in the short time that I have here, but I will say that Bettye's talents have caught the eye of Cabinet secretaries and Presidents. She has been nurse of the year, woman of the year, and founder of the program, Women in Touch.

    She is a national leader in the fight for better health care for African-American women, and indeed, all women. I would conclude by telling my colleagues on this panel that when Bettye Green has something to say, and she has a lot to say, I know well enough to listen, learn and help. I commend her views to you, Mr. Chairman, and I commend you for all the help that you've been in this crusade to better educate women around the country. You have been a tremendous spokesperson for this cause, Mr. Chairman, and we all thank you.

    Mr. PORTER. Tim, thank you.

    Ms. Green, if I were you, I would take Tim wherever I go, with that kind of introduction.

    Ms. GREEN. I think you should hear the introduction I've given Tim a few times. It's a mutual admiration society. [Laughter.]
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    I want to thank you, Mr. Chairman and members of the committee, for all of your previous hard work and leadership and working together with the National Breast Cancer Coalition to create support for the battle to eradicate breast cancer.

    I am Bettye Green, a member of the executive board of directors of the National Breast Cancer Coalition. I am the founder of the Women in Touch breast group, which educates African-American women about breast cancer. I'm a wife, a mother, a nurse, and a breast cancer survivor.

    I was only 36 years old and still had children living at home when my husband and I discovered I was diagnosed with stage two breast cancer. Most African-American women who are diagnosed with breast cancer at that young stage in their life don't live to tell their story. However, I was lucky.

    After receiving chemotherapy and undergoing a mastectomy, I have thus far survived my breast cancer and now I am able to enjoy what so many people are able to take for granted in life, including my grandson Anthony, who is here with me today. That is why continued appropriate research is so vitally important.

    As you know, the NBCC, a grass roots advocacy organization made up of over 400 organizations and hundreds of thousands of individuals, have been working since 1991 toward the eradication of this disease through research and access to quality health care. Breast cancer costs this country untold dollars in medical costs, lost resources, lost productivity and in lost lives. The war against breast cancer, the search for answers to what causes the disease, how we can prevent it, how we can cure it, these are immense issues requiring a concerted, coordinated effort on a national level.
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    Breast cancer is just not an issue for one month. It is an ongoing crisis. However, we believe we are at a brink, a historical moment for cancer research. The fight against cancer has gained extraordinary momentum at all policy levels. Building on the leadership provided by this committee, the Administration has announced a new cancer initiative.

    There is a new energy and optimism in the U.S. in both the scientific and consumer communities about cancer research, a universal feeling that the significant past research investments are poised to pay major dividends in the area of cancer prevention, detection and treatment. We are closer than ever before to reaching our goal of eradicating breast cancer.

    Women are depending on Congress to continue to help make that goal a reality. We believe Congress can respond by appropriating $650 million for peer reviewed breast cancer research for the fiscal year 1999 at NIH, and offering significant support for clinical trial programs, so that research from the laboratories can be translated into treatment for patients.

    As we are increasingly optimistic about the future, we must keep in mind the reality that 46,000 women will die of breast cancer this year, and that 180,000 additional women will be diagnosed with the disease. We must acknowledge that each of those women are still receiving the same primitive slash and burn therapies as cancer victims did 25 years ago. This disease is complex, and there is much work to be done.

    The research simply needs to continue, so that urgently needed answers to the questions around breast cancer can be found. The women with breast cancer and those who live in fear of this disease deserve information they can depend on, better quality treatment and answers that come one step closer to saving their lives. This can only happen if we have the right research.
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    Mr. Chairman, you and your committee have been extraordinarily supportive of the needs for increased breast cancer research funding. The NCI is also acutely aware of the need. Breast cancer was cited as a major priority for NCI in their budget proposal for fiscal year 1999. The National Breast Cancer Coalition is calling on Congress to appropriate $650 million to NIH for peer reviewed breast cancer research for the fiscal year 1999.

    If the funding levels for breast cancer research are not increased, the forward progress we have begun to make in these past years will be lost. As cancer research funding is increased, it is critical to ensure that funding for breast cancer research continues to increase. We believe it is imperative that as increases are made for cancer research in general and NIH and NCI that increases are also made in breast cancer research funding.

    The rate of increase for breast cancer research has been declining. Yet each year, the committee states unequivocally that breast cancer research is of the highest priority. This trend needs to be examined and analyzed to ensure that imperative research opportunities are not lost.

    We believe strongly that this year the scientific opportunities are such that an investment of $650 million for breast cancer research can be well spent. As you know, the NBCC is resolute in money not being wasted. Last year, when there was an attempt to divert $14 million from NCI funds to unneeded funds for the National Action Plan on Breast Cancer, we fought for that money to stay with NCI for peer reviewed research.

    We also feel strongly that funds appropriated for breast cancer must be invested strategically. For years, we have not asked for much more money than NCI was spending on breast cancer research, but also that that money was being spent well. NCI has finally heard our demand.
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    We welcome the progress review group, PRG, which Dr. Klausner has convened through NCI. And you should be hearing a report in 1998.

    We want to say in closing that we like the fact that you have heard our word, that you understand what we want, and we do want to follow the President's lead on making sure that money is available for clinical trials. Because as you know, only 2 percent of women participate in clinical trials. If we have the money appropriated which the President has asked for, we're trying to endorse that, we hope that that money will be appropriated for clinical trials and that we do get the $650 million for breast cancer research.

    And thank you so very much.

    [The prepared statement of Bettye Green follows:]
    "The Official Committee record contains additional material here."

    Mr. PORTER. Ms. Green, thank you so much. Obviously we're going to take your advice to heart.

    Anthony, I want you to do me a favor, and remember as you get older what a tremendous advocate your grandmother was for breast cancer research. And maybe you'll be able to look back and say, I remember when this disease stopped afflicting people on this planet, and she helped cause that to happen.

    Tim, thank you for joining us.
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    [CLERK'S NOTE.—Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity represented by this witness.]


Wednesday, February 4, 1998.



    Mr. PORTER. Reverend Gary Hutcheson, Member of the National Psoriasis Foundation and Senior Pastor of the Woodbridge, Virginia, Church of the Nazarene, testifying in behalf of the National Psoriasis Foundation.

    Reverend Hutcheson.

    Rev. HUTCHESON. Good afternoon, Mr. Chairman.

    As I have sat these last three hours, I have developed a real appreciation for your skill in this extended exercise of intensive listening. I really appreciate that.

    My name is Gary Hutcheson and I'm here this afternoon as an advocate on behalf of the 6.5 million American men, women and children who are battling psoriasis, a chronic, debilitating skin disease. It is a disease without a cure at the present time. And without universally effective treatments.
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    Until a cure or more effective treatments are found, millions of people with psoriasis face a lifetime fighting this debilitating disease. Over $3 billion are spent annually on treatments for psoriasis, and each year, psoriasis patients make approximately 2.4 million visits to dermatologists in our country.

    Psoriasis is unpredictable and unrelenting. Treatments are often successful for only relatively short periods of time, and then only for some people. The thick, red scaly patches on all parts of the body and painful joint movement limit daily activities and interfere with physical, occupational and psychological functions.

    Physically, skin affected by psoriasis itches, burns, stings, cracks and easily bleeds. The occupational impact of the disease poses an economic burden for our Nation, and significant financial hardships for psoriatic patients. Emotionally, psoriasis can be devastating. The social rejection and physical suffering of psoriasis has even led some people to commit suicide.

    Some types of psoriasis require hospitalization and can even be diagnosed as life threatening. Each year approximately 400 people with psoriasis are granted complete disability benefits by the Social Security Administration because of the effects of the disease.

    Perhaps even more difficult is the fact that three quarters of a million people diagnosed with psoriasis are under the age of 10. Though I certainly do not want to sensationalize my personal situation, I have had psoriasis for the last 20 years. So I can relate something of the pain, embarrassment, and private disgust that the vast majority of psoriasis sufferers struggle with throughout their lives.
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    On two different occasions, I have been hospitalized for extended periods of time to treat the disease. On numerous occasions, I have received as many as 30 injections directly into the psoriatic patches in a single doctor's office visit.

    Early in my career, I was compelled to change my vocational direction from working with troubled teenagers due a pastoral ministry setting due to the rapid advance of the disease. I have even relocated my family at doctors' and clinicians' advice from one part of the country to another in an effort to find the most advantageous combination of climate, UV radiation from the sun, and specialized medical expertise for treating this tenacious malady.

    A task as simple as taking a bath has become a painful, time consuming ordeal. In fact, the derogatory comments and uneasy stares of strangers are not nearly as traumatic for me at this point in my life as the countless hours spent continually soaking in cold tar baths, applying numerous topical steroid treatments, wearing occlusive plastic suits to bed, undergoing regularly scheduled liver biopsies, and receiving weekly ultraviolet light radiation treatment.

    The vast majority of psoriasis patients are all too familiar with the devastating emotional roller coaster ride from the trial and failure scenario of current treatment options. Now, I know that my experience is certainly not unique. Through my affiliation with the National Psoriasis Foundation, I have come to understand that my struggle with this disease has not been nearly as devastating as that of hundreds of thousands of other victims.

    Like diabetes, arthritis and heart disease, psoriasis requires lifelong treatment. Unlike these diseases, psoriasis is not, or perhaps it would be better stated, has not been in the past, a top priority for research. Yet with recent excellent research conducted by NIH and NIAMS, effective treatment and a cure for psoriasis is within reach.
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    Sufficient funding in the future will enable medical science to complete the puzzle and find a cure for this affliction. This will not only benefit the 6.5 American children and adults now suffering with this chronic disease, but will also help with the over 200,000 new cases of psoriasis diagnosed each year.

    Better treatments or a cure for psoriasis will result in both savings to the public and the government in treatment costs, lost work days and Social Security disability claims.

    Finally, on behalf of the 40,000 members of the National Psoriasis Foundation, and the 6.5 million American citizens with psoriasis, I urge you to approve an increase of 15 percent over current funding levels for NIAMS in the fiscal year 1999. This increase will have significant health and socioeconomic benefits for the millions of Americans who are affected by psoriasis and by other diseases under the purview of NIAMS.

    Thank you, sir, so much for your attentiveness and your support.

    [The prepared statement of Gary Hutcheson follows:]
    "The Official Committee record contains additional material here."

    Mr. PORTER. Reverend Hutcheson, is there any indication about the basis of the disease? Has the research gone far enough to give us an indication? Is it genetically based? Is it environmental? What do we know about that, if anything?

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    Rev. HUTCHESON. Just within the last couple of years, sir, because of research done by NIAMS, several possible sites for genes have been identified that may cause this inherited—it does seem to have a link to our heritage, this particular condition. But there is no direct known cause for it at the present time.

    Mr. PORTER. Obviously, the story that you tell is very tough and tragic. Obviously, we want to do what we can to try to get some resources there, and we'll do our best.

    Rev. HUTCHESON. Thank you, sir. We appreciate it.

    Mr. PORTER. Thank you for testifying.


Wednesday, February 4, 1998.



    Mr. PORTER. Bruce Davidson, Senior Vice President, Government Programs, testifying in behalf of the Blue Cross Blue Shield Association.

    Mr. DAVIDSON. Mr. Chairman, I am Bruce Davidson, Senior Vice President of Government Programs for Florida Blue Cross and Blue Shield. After listening to the testimony here of a number of these very distressing diseases and conditions, I am not here to talk about that, I'm here to talk about the funding for the contractors who pay, hopefully compassionately, wisely for the Medicare beneficiaries who are afflicted by many of these conditions.
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    I'm testifying on behalf of the Blue Cross Blue Shield Association, which represents 55 Blue Cross and Blue Shield member plans throughout the Nation. We certainly appreciate the opportunity to testify on the fiscal year 1999 budget for Medicare contractors.

    We come before you this year with an urgent message, Medicare contractor funding must be increased significantly in 1999 to meet all of the new demands facing the contractors, but especially to help them combat Medicare fraud and abuse effectively. Our written testimony covers several areas, but this afternoon, I'd like to focus on the role of claims payment. We in HCFA call it program management in anti-fraud and abuse efforts.

    Both the Congress and the Administration are exploring ways to strengthen the efforts to detect and prevent Medicare fraud and abuse. I know this is a high priority of your subcommittee. We agree that more can and should be done.

    However, this priority cannot be addressed and the benefits of the increased Medicare integrity program funding cannot be maximized without an adequately funded program management or claims payment function. Many think of program management as simply paying claims. While the separately funded Medicare integrity, or we call it MIP function, is entirely dedicated to the detection of fraud and unnecessary payments, the first line of defense is the program management function of the contractor. It also has very significant responsibility for mopping up, if you will, after the MIP activities, as I will describe.

    Let me describe the basic relationships between program management and Medicare integrity activities. First, based on input from HCFA, the contractor's MIP function and other experience, a contractor's program management function puts into effect front end edits which stop a claim from automatic payment. In Florida's Part B system, there are hundreds of such edits. Many of the edits are used nationally, but most are a result of local conditions.
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    This stoppage of automatic payment results in a denial or a review by a claim examiner and then a decision of payment or non-payment. More aggressive edits result in more no-payment decisions, which increase reviews, inquiries and hearings, all of which are program management functions.

    Additionally, many of the edits require that supporting documentation be mailed to the contractor, and this reduces the automatic payment rate, which has been a prime source of contractors' ability to process more claims with less funding.

    Second, a contractor's MIP function will identify providers and services which are suspect to fraud and abuse, and review all or a sample of claims coming from those providers or from those services. This results in claims denials, which then create more inquiries, reviews and appeals, again, functions of program management.

    Lastly, post-payment reviews by the MIP function result in increased over-payment recovery activities which are the responsibility of the program management function.

    In 1994, Florida subjected about 4 percent of our Part B claims to pre-payment review. Today we're up to 8 percent. We estimate that each increase of 1 percent raises program management costs by at least $1.4 million. The fact that Florida's program management funding is inadequate, and our MIP function is very active, is indicated by our rising review and appeals backlog. And we're just not keeping up with it.

    In Florida, we have the program management and MIP functions split and assigned to two separate managers. I can tell you that the MIP manager has a number of edits, suspect providers and services that he would like to subject to increased scrutiny. However, the program manager does not have enough resources to cope with the volume of work that was a result.
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    This means that we are bypassing the opportunity to save Medicare funds because the program management function is not funded to match the ingenuity and activity level of the MIP function.

    Additional program management funds are needed to handle the additional work load generated by the enhanced anti-fraud and abuse initiatives. Medicare savings cannot be realized unless all segments of contractor operations are adequately funding.

    In closing, I would like to underscore that Blue Cross and Blue Shield Medicare contractors are proud of their role as Medicare administrators. In 1998, contractors' administrative costs represented less than 1 percent of total Medicare benefits. That's a statistic we can be proud of on the one hand, but be worried about on the other. Because we know that with more funding, we could achieve much greater program savings by reducing fraud and abuse.

    Given the importance of Medicare to its beneficiaries, providers and the Nation's economy, it's critical that the administrative resources necessary to effectively manage the program be provided.

    Thank you very much.

    [The prepared statement of Bruce Davidson follows:]
    "The Official Committee record contains additional material here."

    Mr. PORTER. Mr. Davidson, the bottom line on the president's budget indicates they're suggesting a small cut in Medicare contractors. We understand that they're proposing some new spending for contractors that is unauthorized, and it's funded with user fees. Can you fill me in on that? We don't have jurisdiction, obviously, over user fees.
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    Mr. DAVIDSON. Right. I was briefed on that just this morning. And it was a brief brief.

    My understanding is that the user fees will have to be enacted legislatively. Basically they are a tax on providers for paying for the costs of being audited, paying for the cost of submitting paper claims.

    My knowledge of both of those activities and the providers that would be engaged in that legislation would be that it's going to be some tough sledding to get that legislation passed.

    Mr. PORTER. I will have to try to figure that out, obviously, and ask the committee of jurisdiction. I suspect that this appropriation will kind of remain up in the air until we get to conference and see what has or what might occur.

    But I think you're probably right, my guess is that all of the revenue portions of the President's budget probably are unlikely to be adopted, although I certainly would stand to be corrected on that. My own feeling is, it's unlikely they are going to be responsive to those, and that will leave us kind of in limbo for a while.

    Thank you for your testimony. We very much appreciate it.


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Wednesday, February 4, 1998.



    Mr. PORTER. Last but not least, Caroline Myers, Chair of the National Fuel Funds Network Board of Directors and Executive Director of Crisis Assistance Ministry in Charlotte, North Carolina, testifying in behalf of the National Fuel Funds Network.

    Thank you for your patience, Ms. Myers.

    Ms. MYERS. Thank you, Chairman Porter, for allowing me this opportunity to be here. I'm pleased to represent the National Fuel Funds Network as its chairperson. We support LIHEAP funding, the Low Income Home Energy Assistance Program, at no less than $1.3 billion for fiscal year 1999. We are also pleased about the fact that there is forward funding to be approved for 2000. We would like to propose that that level of appropriation be increased to a $1.5 billion figure.

    The National Fuel Funds Network is a membership organization comprised of over 200 dues paying representatives of private fuel and energy assistance funds, community action agencies, social service organizations, utility companies, trade associations and private citizens. Our member organizations are located in 44 States and the District of Columbia. We're concerned with the ongoing energy crisis that exists for the poor in America.

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    As I've listened to these very moving testimonies that you've heard today, I think there is another disease in your country called poverty that is very much with us, and to which all of these people might be subject as well. I want to tell you a little bit about the Crisis Assistance Ministry where I have worked in Charlotte since its founding in 1975.

    We provide emergency energy assistance, and several other basic needs as well, in an effort really to prevent homelessness among our community's low income citizens. Every day at this time of year, more than 100 people come to our door. There are others on the phone hoping to get a chance to get in and to have their needs met. About half of those are heat related kinds of needs.

    We've been administering emergency LIHEAP funds since 1982 for Mecklenburg County. We also administer the local fuel funds of Duke Power Company and Piedmont Natural Gas, as well as our own fuel funds that we raise from the religious community and individuals.

    Ours is an unusually generous, caring and prosperous community. We're fortunate indeed to have all those resources in place.

    However, the fact is that the need we're seeing even in this prosperous community is increasing by about 20 percent. We're still not meeting all the need. That is the bottom line. We cannot begin to do so without the basic resource of a LIHEAP program with increased funding. That has been core to the work that we've been doing, but the need is still greater than that we're able to meet.

    All the fuel funds get involved in this business of trying to find other ways to meet these needs. The families that LIHEAP serves and that the fuel funds serve have incomes of less than $10,000 annually. The fuel funds themselves make heating and cooling assistance payments only of about $72 million a year. I say only, knowing how hard that is to raise.
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    We do that on behalf of about 500,000 families. And that's very important money. But it can't begin to approach the importance of a $1.1 billion program that is now in place for fiscal year 1999 in LIHEAP funding.

    Fuel funds are unable to fill the gap between the need for assistance and the available fuel funds. People continue to heat with unsafe methods, and I think that you all are aware of that. Most of us don't know what it's like to live without power. That's what many families really do have to do in places where there are no local fuel funds. We read tragic stories about the results of that.

    This is one case in point, flipped heater causes fatal fire, out of a recent paper, Charlotte Observer.

    As the director of a crisis program, I'm often asked, what kinds of folks are these that you're seeing. And here's a profile of what they look like. Seventy-one percent of the clients that we see are below Federal poverty guidelines, at least in the 30 days before they came to our operation.

    They pay as much as 21 percent of their already income to heat and light their homes. They have discretionary income problems. For them, that means they're trying to make decisions about whether to have enough food or whether to have heat, or whether to buy medicine. Their dilemma, regrettably, is which necessities do we do without.

    Almost 70 percent of the people that we help do have earned income, however, a very important fact, I think, to be aware of. They do lack reserves and perhaps benefits on their jobs. But they for the most part are working, working very hard with often heroic efforts to maintain two jobs, so that when the hours are cut back on the other job, they'll be able to make it.
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    Other recipients are disabled and struggling to pay monthly expenses in winters when gas or fuel prices might rise by 30 percent or so.

    I not only represent NFNN here today and Crisis Assistance Ministry, but I also feel like I represent the people that we serve. Because I've been working with them so long. One of the things that our clients do for us is, they write notes as they leave. I just wanted to read a couple of those messages from those people. I have books of these kinds of testimony, actually.

    I just wanted to thank the people who helped me in the past, so my children could have power. Signed by Tony. It was cold inside and my house felt like ice. But thanks to a very special person who cared, Crisis Assistance Ministry was able to have my gas restored. Thank you, may God bless you.

    I want to thank Crisis Assistance Ministry for helping me. Your assistance helped me get my gas back on. Dear sir or madam, thank you for all of your help. In my case, I really do thank you. Now my two year old son will be able to stay warm.

    These are the very stories that are out there. There are many of them that I could share more with you. But that's what I have witnessed over the years.

    We're making generalizations, I know, about the poor. But there are just many circumstances that can happen in peoples' lives that make it so that for a time being, at least, people face this kind of an emergency.
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    LIHEAP has just not kept pace with the increased number of poor and with the erosion of the income that the poor are receiving. The thing that we are really looking at in the years ahead is the impact of welfare reform.

    Now that we are doing some very significant things to create really perhaps more working poor, they are going to need the kind of support system that must be there so they don't fall off the edge, so that they can indeed meet the basic needs of their families and keep them warm and able to function. Alarm clocks don't go off, either, without electricity. So LIHEAP must play this increasing role in welfare reform transition.

    Former public assistance recipients for the most part will make these low wages. In Charlotte, a living wage has been determined to be at about $13 an hour. So you see, there is quite a gap that's got to be filled somewhere.

    [The prepared statement of Caroline Myers follows:]
    "The Official Committee record contains additional material here."

    Mr. PORTER. Ms. Myers, is your request the same as the President's budget?

    Ms. MYERS. The President's budget, I believe is 1.14.

    Mr. PORTER. I think it's 1.3.

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    Ms. MYERS. Is it?

    Mr. PORTER. I thought it was.

    Ms. MYERS. We have some other folks, Pat Markey may know the answer to that better than I.

    Mr. PORTER. It's 1.4, then, is that correct?

    Ms. MARKEY. It's $1.1 million in core funds, plus an additional $300,000.

    Mr. PORTER. I thought that your request was 1.3, so it's 1.3 as opposed to 1.1.

    Ms. MYERS. Right.

    Mr. PORTER. So you're asking for more than what the President's asking for?

    Ms. MYERS. Exactly. And in the forward funding for 2000, a larger increase.

    Mr. PORTER. Right. Well, let me say that obviously the need is very great. My colleague over on the Senate side, Senator Specter, has been a very great champion of LIHEAP funding. I think you can probably be pretty well assured that he's going to be a champion again this year.
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    Ms. MYERS. I certainly hope so.

    Mr. PORTER. We have not been nearly as strong. But when it comes out in the conference, the Senator has consistently been there, and been a very strong supporter of LIHEAP. And it undoubtedly will end up the same way.

    Ms. MYERS. Good.

    Mr. PORTER. That's good news.

    Ms. MYERS. Thank you.

    Mr. PORTER. I personally have some problems with the rationale of the program, which I don't think we can debate here at this point in time, but I think you're exactly right, that the need is very great, the population served must have this assistance. And I have been urging the authorizers to look at the concepts of the program in a different way for the reasons that I believe the rationale has ceased to exist. But absolutely, there's no question about the need and the funds have to be provided in some way.

    Ms. MYERS. And the graying of America certainly impacts this program, too.

    Mr. PORTER. And you mentioned welfare reform, and of course, that's right, also.
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    Ms. MYERS. Right.

    Mr. PORTER. So thank you very much for coming to testify. We're sorry you had to wait so long. But it's been a day filled with a lot of votes that we simply can't anticipate.

    Ms. MYERS. Thank you for your attention.

    Mr. PORTER. Thank you so much.

    [CLERK'S NOTE.—Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity represented by this witness.]

    The subcommittee will stand in recess until 10:00 a.m. tomorrow.
Thursday, February 5, 1998.



    Mr. PORTER. The subcommittee will come to order.

    This is the final panel of our public witnesses. We have heard roughly 160 witnesses to this point, and I want to thank all of you for coming to testify.
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    I have up to this point been asking a fair amount of questions. Today I am not going to be able to do that to any extent because I have a speech off the Hill between the morning panel and the afternoon hearings, and we are going to have to complete our panel by the appointed time.

    I thank you all for coming. We have allotted 5 minutes to each witness. Our staff has a new innovation, as you may have heard, a timer that will indicate the end of the 5-minute period, and we would ask that you complete your thought and then complete your statement as promptly as possible.

    Our first witness is Benjamin Payton, president of Tuskegee University, representing the university. Dr. Payton, it is nice to see you, sir.

    Dr. PAYTON. Thank you, sir. Good morning, Mr. Chairman, and thank you, members of the committee, Congressman Stokes and others.

    I want to first express my appreciation to you, Mr. Chairman, for the extraordinary leadership that you have provided this committee, and I hope you will permit me to say a word of special thanks to Congressman Stokes. He has recently announced that he is going to be retiring from the Congress this year, and many of us feel a deep pain at that, Congressman. You have been such an outstanding presence on this Hill.

    As a matter of fact, I want to, if you will permit, Mr. Chairman, to begin my few remarks by reading a quote from a recent article Congressman Stokes wrote in an issue of the July Roll Call. He says this, and I quote:
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    In recent years, we have seen unprecedented advances in biomedical research, the diagnosis of disease, and the delivery of health care services. However, African Americans, Hispanic Americans, Native Americans, and those of Asian/Pacific Islander heritage have neither fully nor equally benefited from these new discoveries. Rather, minority Americans continue to face historical barriers to good health, such as poverty, poor nutrition, and lack of access to quality health care, which has severely compromised their health status.

    That, Mr. Chairman, is an excellent summary of the biomedical challenges that we face in our society, as so eloquently stated by Congressman Stokes.

    I wanted to add to that a new dimension of the whole health field that now confronts our society and the entire modern world and the entire world, and that is what has come to be known as the challenge of bioethics.

    It is now critical that all Americans understand, and particularly the health and medical communities, those who are not only the deliverers of health care but those who teach it, as well as the American society, that science and medicine are not autonomous enterprises. These are activities that have to function in the context of moral and social values which are the texture in which we develop as a people.

    One of the great challenges that we face now is that we have developed a new discipline over the past 15 or 20 years that is called bioethics, and it means really what it says: bios ethic is the ethics of life, it is about bringing the disciplines of philosophy and ethics and the humanities to bear on the activities which comprise the health and medical care establishment.
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    Bioethics is important, Mr. Chairman, because we have made some grievous errors in this society, particularly with respect to African Americans and people of little power. Those grievous mistakes have been symbolized, have come to be symbolized in an experiment that is popularly known as the Tuskegee experiment.

    I am Benjamin Payton. I am president of Tuskegee University. For more than 40 years, the United States Public Health Service hid behind the name Tuskegee while it, the United States Public Health Service—not Tuskegee—conducted an experiment on poor, defenseless black males, illiterate people who didn't know really what was going on. And that experiment was designed to just see what would happen when syphilis is untreated and left to make its own course. Even when penicillin and effective treatment became available, that treatment was denied these persons who were participants in this experiment.

    This so-called Tuskegee experiment has come to represent the height of infamy in the conduct of health and medical research in our society. But it has done something else, Mr. Chairman. It has created a tremendous undertow of suspicion and cynicism among African Americans and many people without power in this society and, thus, an unwillingness to participate in the kind of trial clinics which are so important if we are to continue the process of discovering new cures for disease.

    It is important, if those cures are to be developed, that all Americans participate in these trials. So our great challenge is how do we overcome this heritage of suspicion, rightly rooted, in part, in the abuses of the system, but also now forwarded by the absence of significant participation of minorities in the bioethics disciplines which make it possible for us to understand the new developments that are occurring as a result of the impact of science and technology in our society.
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    To just illustrate quickly that impact, there are articles now appearing all over. There is one scientist, for example, who wants to clone a human being and says he is going to do it in spite of the fact that the President's National Commission on Bioethics has recommended that all cloning of human beings cease and not occur.

    There are incidences which have occurred right here in Washington, D.C., where people from poor families have had their deceased relatives in hospitals; the organs have been removed, it has been reported, before death in order that those who can use them and can pay for them can have access to them.

    We have people who are interested in really doing—a few, fortunately not too many, we don't think—what was begun by the Nazis in Germany, and that is, to create a science of genetics to develop a superhuman race.

    Mr. Chairman, these kinds of issues are the kinds of issues that all Americans must become knowledgeable about and trained about. Minorities, African Americans and others, particularly, have got to understand the protocols governing research so that they can respond in intelligent ways to these challenges. Thus, they request for this committee for an appropriation to follow the $4,000,000 you authorized last year and we have received to create the first bioethics center in health care and research on a historically black college campus, at Tuskegee University.

    We are most grateful for that, Mr. Chairman, and to this Congress. This was announced by President Clinton. It has the support of the executive branch. It is a bipartisan effort. In order to bring it to completion, we will need appropriations this year in the amount of $18,000,000 which we are coming forward to ask this committee to give its serious consideration to.
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    This will be a path-breaking program that would enable us to make tremendous progress as a total society, Mr. Chairman.

    [The prepared statement of Benjamin Payton follows:]
    "The Official Committee record contains additional material here."

    Mr. PORTER. Dr. Payton, thank you very much for your testimony. Obviously we cannot change the past, and I don't know the facts of the study you mentioned, but we can change the future. We will take your thoughts and your testimony into account in our deliberations, and let me say I can't agree more that—and I told Mr. Stokes this yesterday. He is virtually irreplaceable, and I don't know what we are going to do without him. But we are going to take advantage of his last year in the Congress, and he will continue to be the strong advocate that he has always been.

    Dr. PAYTON. Thank you.

    Mr. PORTER. Thank you, Dr. Payton.

    Mr. STOKES. Thank you, Mr. Chairman. If I may?

    Mr. PORTER. Mr. Stokes?

    Mr. STOKES. I certainly want to respect the time aspects of this morning's hearing. I just want to thank Dr. Payton for the eloquent statement he has made here this morning. Mr. Chairman, I want to thank you and the other members of the subcommittee for the manner in which you responded to the President's request and Dr. Payton's request relative to this appropriation by appropriating $4,000,000 in the fiscal year 1998 bill.
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    Certainly, I hope that we will be able to comply with your full request, Dr. Payton, but I certainly appreciate the manner in which you have responded, Mr. Chairman, as well as the other members of this subcommittee.

    Mr. PORTER. Thank you, Mr. Stokes.

    Thank you, Dr. Payton.

    Mr. PAYTON. Thank you very much, Mr. Chairman.


Thursday, February 5, 1998.



    Mr. PORTER. Our next witness is Richard O. Butcher, M.D., President, Summit Health Coalition, testifying in behalf of the coalition.

    Dr. Butcher.

    Dr. BUTCHER. Good morning, Mr. Chairman and distinguished members of the subcommittee. Thank you for this opportunity to speak with you this morning on behalf of the Summit Health Coalition. I am Dr. Richard Butcher, a family practitioner in San Diego, California, for the past 30 years. I have served as president of Summit Health Coalition since its inception.
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    Summit Health Coalition is a network of 50 national, State, and community-based organizations, primarily African American. Since 1993, our focus has been to advocated for health care policies that will meet the needs of underserved populations.

    This subcommittee has supported programs of critical importance to the members of our coalition, and we appreciate your leadership in this regard, Mr. Chairman.

    We also join Dr. Payton in recognizing the extraordinary accomplishment of Congressman Louis Stokes. We can think of few Members of Congress, past and present, who have made such a lasting contribution. Congressman Stokes, the Summit Health Coalition salutes and we thank you.

    Today's headlines announce this as a time of uncommon prosperity in America. Unemployment is down, tax revenues are up, and there are even projections of a budget surplus. Yet in today's booming market economy, some people are still not benefiting. Many of them are our constituents.

    At the same time, the passing of the Balanced Budget Act in the last session of Congress is bringing about a transformation in the way health care is provided in our communities. Many of these changes are positive. But a substantial number of our constituents are experiencing challenges and disruptions that we believe were not intended by Congress. We would like to recommend some proposals this morning that will address these unintended consequences.

    Our recommendations deal with four areas.
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    First, our first recommendation is that Congress provide the funds necessary to strengthen HCFA's capacity to protect Medicaid and Medicare beneficiaries enrolled in managed care. We know that the workload of the Health Care Financing Administration has increased dramatically as a result of new laws enacted in 1996 and 1997. At the same time, HCFA must take steps to ensure that beneficiaries are helped, not harmed, as health delivery systems change. These are the reasons we support increased funding for HCFA oversight monitoring and collection of data on managed care procedures and outcomes by race and ethnicity.

    We also urge increased funding for the consumer education with respect to managed care. We specifically recommend that the HCFA budget for research, demonstration, and evaluation be increased by $25,000,000 over last year's level. This increase is necessary if HCFA is to respond meaningfully to Congress' request made last year. You asked that HCFA demonstrate and evaluate community-based model programs to help vulnerable populations understand how to use managed care. This is a very important need. HCFA also needs to conduct research on the impact of managed care on consumers and providers, particularly in minority and other underserved communities.

    We also urge consideration by Congress of expanded support for insurance counseling assistance programs. Many programs have seen counseling requests increase dramatically with the coming of managed care while funding has been the same for the last 3 years.

    With regard to the Health Resources and Services Administration, we strongly urge this subcommittee to continue its leadership role in providing support for historically black health professional schools and scholarship programs for minority students.
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    We are very concerned that access to health care in minority communities will be severely limited if there isn't a concerted effort now to maintain and expand the number of African American health professionals and institutions. This is why we wholeheartedly endorse the Disadvantaged Minority Health Professions Amendments Act of 1997.

    We also urge budget increases for community health centers and other essential community providers who provide health care to the uninsured.

    With respect to other department initiatives, we strongly support the adequate funding for the Office of Minority Health and the Office of Research on Minority Health at NIH. We enthusiastically endorse the President's initiative on race. We believe, in addition, that there must be adequate funding for inclusion of African Americans and other vulnerable populations in clinical trials.

    Summit will be sharing detailed legislative proposals on tobacco control with you in the days and weeks to come.

    Mr. Chairman and members of the subcommittee, we invite you to review our written statement for additional information on these recommendations. Thank you for this opportunity to bring the concerns and proposals of Summit Health Coalition to your attention.

    [The prepared statement of Richard Butcher follows:]
    "The Official Committee record contains additional material here."

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    Mr. PORTER. Thank you, Dr. Butcher. That was perfect. It couldn't have been better. We will very definitely read your written submission and take your views into account when we mark up the bill.

    Thank you for coming to testify.

    Dr. BUTCHER. Thank you, Mr. Chairman.

    [Clerk's note.—Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity represented by this witness.]


Thursday, February 5, 1998.



    Mr. PORTER. Dr. Merrill Matthews, Jr., Vice President, Domestic Policy, National Center for Policy Analysis, testifying in behalf of the Center.

    Dr. Matthews?

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    Dr. MATTHEWS. Good morning, Mr. Chairman and committee members. I would like to take this opportunity to thank the committee for this opportunity to testify before the committee. My name is Merrill Matthews. I am a Ph.D. I am Vice President of Domestic Policy for the National Center for Policy Analysis, a nonpartisan, nonprofit research institute based in Dallas.

    In 1995, the Department of Health and Human Services, including the Social Security Administration, spent $665,000,000,000, according to the Department's own published figures. That amount represented 44 percent of the Federal budget that year.

    One of the largest agencies under HHS, the Health Care Financing Administration, HCFA, had a total budget of $269,000,000,000 in 1995, or 16.4 percent of the Federal budget.

    I am going to take a little bit different track than my two predecessors, and I am going to talk just a little bit about how to downsize Government rather than add more. Clearly, Mr. Chairman, if Congress is going to look at downsizing Government, if it is serious about it, we are going to have to look at the Department of Health and Human Services.

    Unfortunately, trends created by both Congress and HCFA itself have been moving in the opposite direction. As was mentioned just a minute ago, Congress had passed legislation in 1996 and 1997 which expands HCFA's oversight and is going to give them more responsibilities, and they don't have enough people probably to handle that.

    In addition, Congress is looking at future things. The President has suggested several things in his new budget which would increase the oversight and size of the Health Care Financing Administration. Congress is also looking at various types of consumer protection laws which could create a new huge burden on HCFA to oversee the hundreds of managed care companies that are out there in the country. That would represent a huge growth in HCFA.
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    In addition, HCFA itself has not been without some responsibility here. They have been seeking to grow internally. Even though the new Administrator at HCFA has recently expressed the concern they have about the growth that they are having to experience, the new responsibility, and the lack of funds, in some cases they have actually sought to grow themselves.

    In the budget agreement of 1997, one of the things that they wanted to do in the Medicare Plus Choice program is to become marketers for all the health plans and health insurers out there. As you know, the Medicare Plus Choice program gives people more opportunities, seniors more opportunities to choose between HMOs, PPOs, point-of-service plans, Medicare medical savings accounts, traditional fee-for-service.

    In the agreement, HCFA arranged to get $200,000,000 set aside a year to market these plans to seniors. Now, we find that somewhat strange. Why would the Health Care Financing Administration want to try to become a marketer for health insurance? Imagine an elderly couple, 70-year-old man, 65-year-old woman, both going on Medicare. The man has had a history of heart problems and other medical conditions. The woman, his wife, may have been very healthy, and they decided, What do we want? So they are going to call a representative of HCFA to find out what of these plans they think would be the best ones available for them.

    In this budget, which eventually was negotiated down to $95,000,000, HCFA decided that they wanted to have published brochures, they wanted to have health fairs, they wanted to have a hotline because they were anticipating 6 million calls a year from seniors trying to figure out what they should get in health insurance.

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    It would be bizarre to imagine that people who have never been trained in health insurance could sit and answer the questions of seniors, many of whom have very difficult problems, trying to guide them on what kind of health plan they could go in.

    That is an unreasonable approach for HCFA to take, but they have wanted to do that, and we suggest that that is not a very effective use of their time.

    So not only is Congress imposing new oversight on HCFA and they are trying to grow themselves, you are creating a problem within the Health Care Financing Administration which should be curtailed. So I would encourage you in future legislation to consider some of these problems that they are facing.

    In addition, let me take a few minutes just to talk about some of the other things that the Department of Health and Human Services has oversight on that could be changed in order to be able to downsize that whole process. One is Medicare. We would suggest that Congress look at the possibility of Medicare privatization, that is, giving people the ability to put their own money in their own account during their working lives so that when they retire, they can use that money to buy health care after retirement, rather than having the huge Medicare bureaucracy oversee this whole process.

    In 1995, Congress looked at block granting Medicaid to the States. That budget was curtailed. It was vetoed by the President. We think that it would be a very good time to look again at block granting Medicaid to the States in order to get the Federal Government out of the Medicaid business.

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    With that, I think my time is up now, so I will stop there.

    [The prepared statement of Merrill Matthews, Jr., follows:]
    "The Official Committee record contains additional material here."

    Mr. PORTER. Dr. Matthews, thank you for your testimony. Obviously much of what you say we have been attempting to respond to.

    When you talk about the size of the overall budget for HHS and for HCFA, you are mainly talking about entitlements or mandatory spending over which this subcommittee doesn't have control. You also have pointed out some things over which we do have control, and I think the points are well taken.

    The intention, of course, is to give more discretion to the States. We have done that, not the way we wanted to because the President vetoed it, but we have done it by granting a very, very strong waiver on Medicaid, and many States are proceeding as they basically wish in that area. I think that has been a positive development.

    We also have restrained the rate of increase in the entitlement programs, not this subcommittee but the Congress, which I think has been very necessary.

    Providing to Medicare-eligible seniors a lot of lesser-cost alternatives—or at least the hope is that they will be lesser-cost—I think has been a very, very positive development in the program. I don't think it—I think I will disagree on one point. I don't think it is a bad thing at all for HCFA to be in the market of helping seniors determine which is the best alternative. One thing we want to do is to move people out of a traditional, very expensive program, into less expensive alternatives. If that is the thrust of what we are doing, I think that is very, very positive.
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    I also think you need a certain amount of ombudsman services to seniors who won't understand all of these very complex choices, and I doubt that that is something that can be done credibly as well in the private sector, but I could be wrong about that.

    In any case, we do aim to make our spending at the Federal level less, to bring more to the States, to make efficient the programs, and the spending that is done at the Federal level in such a way that we are saving resources. We have been doing the best we can to accomplish those goals.

    So thank you for testifying today. We very much appreciate it, Dr. Matthews, and we will continue along those lines.

    Dr. MATTHEWS. Thank you, Mr. Chairman.


Thursday, February 5, 1998.



    Mr. PORTER. Susan C. Scrimshaw, Ph.D., Dean, School of Public Health, University of Illinois at Chicago, testifying in behalf of the Association of Schools of Public Health.
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    Dr. Scrimshaw, welcome. Nice to see you again.

    Dr. SCRIMSHAW. It is good to see you again, Mr. Chairman. Senor Bonilla, mucho gusto.

    I am Susan Scrimshaw, Dean, School of Public Health, University of Illinois at Chicago, and Chair of the Legislative Committee of the Association of Schools of Public Health. And I would like to thank you for the opportunity to present our statement today.

    With your permission, I am going to submit the written text and highlight some of my comments, and the written text includes a chart with our recommendations.

    First, health professions education. We strongly recommend that Congress tackle a problem that has been left to fester for over a decade: lack of adequately trained health professionals. You will recall that in 1988 the Institute of Medicine found the U.S. public health infrastructure was in disarray and identified serious shortages of public health professionals. This is even more important 10 years later in the era of managed care where still 80 percent of the 500,000 public health workforce do not have graduate education in public health.

    There are only about 4,000 certified preventive medicine physicians in the U.S. The estimated need, however, is around 10,000.

    My school conducted a study recently and found that only about 25 percent of local public health departments had the staff to adequately address core areas of public health. So, Mr. Chairman, we need your help in seeking solutions to these inadequacies.
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    We spend over $6,000,000,000 a year to ensure that physicians are well trained in the medical sciences to treat and cure diseases, and we spend pittances to train professionals to prevent those diseases. This doesn't make sense. As you are well aware, a dollar spent on measles vaccine saves $12 later. Prenatal care saves us $10,000 for every premature birth averted. HIV averted saves us $75,000 later on in costs. So we respectfully request that Congress appropriate at least $50,000,000 to support HRSA's public health training programs.

    In the second area of prevention research, as you are aware, we have 14 prevention research centers that were authorized by Congress, and they are located mostly in schools of public health. They bridge the gap between public health science, research, and academia and public health practice in communities. Our own prevention center at the University of Illinois at Chicago is one of the strongest in the country. To give you an example of the kind of work we do, we have a project that works with grade school children to address prevention of violence, drug abuse, premature sexual activity, smoking, and alcohol abuse, and promotes self-esteem, educational attainment, and a healthy lifestyle.

    This program has been so successful it is being adopted for all of the Cook County schools, and other school systems around the U.S. are looking at it as an example.

    We have another project in Lake County, Illinois, you may be familiar with, and that is successful in promoting breast and cervical cancer screening. Mr. Chairman, you presented an award at the National Center for Nursing Research to our Dr. Michelle Kelley for her transitions to parenthood project.

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    We also go on record in support of the administration's fiscal year 1999 request to fund CDC's extramural research program, but at $100,000,000 instead of $25,000,000. That is how strongly we believe in prevention.

    Given the importance of prevention, we respectfully recommend that NIH be urged to focus more attention on population-based research strategies, and particularly on behavioral aspects of research. As an anthropologist, I have spent 25 years trying to be a bridge between the health care system and behavioral determinants of illness and the development of strategies to prevent illness and promote healing. We would like to say that we want to promote wellness instead of sickness in this country.

    ASPH strongly applauds your efforts to double the NIH budget, and we commend your vision and leadership. We also urge that equal commitment be given to the NIH partners: HRSA, CDC, AHCPR, and OPHS. It is important to improve the health of the American people. Research at NIH is biomedical research, but we need to do the applied and the community-based research to go along with the biomedical.

    To give you two quick examples of how important this can be in our own communities, NIOSH funds the ERCs, the education and research centers, and our Dr. Daniel Rahorshek heads the ERC at University of Illinois at Chicago.

    Our ERC at UIC has NIOSH funding, and last year we were asked by the city of Lakeforest to do an assessment of bio-aerosols emitted by a composting facility. The assessment was heavily subsidized by our NIOSH funding. We could not have done it without it.

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    We also worked on methyl parathion, which was illegally applied to hundreds of homes in the greater Chicago area. Dr. Rahorshek chaired the CDC expert panel on methyl parathion. Again, without NIOSH support, we couldn't be doing this work

    Mr. Chairman, I would like to end my testimony by once again commending you and thanking you and the members of your subcommittee for supporting public health service programs in general, and I would like to remind us that public health represents 25 of the 30 years of life expectancy we have gained in America this century, and also commend the President for increasing the AHCPR budget, but note our disappointment at the lack of support for the MCH block grant. We have such a block grant in our State, and I think we are a good example of how important it is to protect mothers and children with this funding.

    As I say, you have a written copy of my testimony. I want to thank you very much for your attention and for your hard work to promote a healthy America.

    [The prepared statement of Susan Scrimshaw follows:]
    "The Official Committee record contains additional material here."

    Mr. PORTER. Dr. Scrimshaw, thank you for your excellent testimony. We will try to do better than the President did in some of those areas, and I think you have put your finger obviously on something that is very important, that is, moving from the research to the application of that research to our lifestyles and our health. And we will do our best in those areas, too.

    Dr. SCRIMSHAW. Thank you very much.
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    Mr. PORTER. Thank you so much for coming to testify.


Thursday, February 5, 1998.





    Mr. PORTER. Joe Giammalvo, a parent, accompanied by his son, Michael, to testify in behalf of the Cooley's Anemia Foundation.

    Mr. Giammalvo?

    Mr. GIAMMALVO. Good morning, Mr. Chairman. My name is Joseph Giammalvo. With me today is my 6-year-old son, Michael. I am also accompanied by Gina Cioffi, the national executive director of the Cooley's Anemia Foundation. I am very grateful to have an opportunity to thank you for your past assistance for Cooley's anemia patients like Michael and to tell you about how much more remains to be done.
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    At the outset, let me state that because of the work of this subcommittee and the National Institutes of Health, Michael has a considerably lengthened life expectancy. Cooley's anemia patients today often live into their 30s, whereas just 20 years ago, average life expectancy was mid-teens. A brief description of what Michael's life is like will indicate how much more there is to do.

    Cooley's anemia is a genetic blood disease that results in inadequate production of hemoglobin, the red oxygen-carrying substance in blood. This causes severe anemia which requires frequent and lifelong blood transfusions to sustain life. Because there is no natural way for the body to eliminate iron, the iron in the transfused red blood cells builds up and becomes toxic to tissues and organ systems, particularly the liver and the heart.

    The excess iron must be removed, or the patient will die. This is done by infusion of a drug that is administered for 10 to 12 hours a day by pumping it through a needle inserted below the skin or in a vein.

    Michael is my hero. He is the bravest little boy I know. Every day he fights to continue to live. It is a struggle, Mr. Chairman, and many Cooley's anemia patients do not make it. Particularly as they move into their teen years, children tend to become less compliant. Compliance hurts. Compliance means you can't go spend the night at a friend's house. Compliance means you can't be just another kid.

    In my written statement that is submitted for inclusion in the record, I go into more detail on the research opportunities that exist to improve the lives of young people like Michael struggling with terrible affliction. But I would like to touch on a couple of those opportunities here.
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    Last year, a Special Emphasis Panel was convened by NIH to discuss new therapies for Cooley's anemia. The number one recommendation of that panel was the creation of a network of collaborative clinical centers to study the effectiveness of new clinical interventions for Cooley's patients. This approach has great merit as it would allow for pooling of patients, the creation of common protocols, it would save money and expedite research. It must have been a good idea, Mr. Chairman, because this subcommittee and your Senate counterpart endorsed it in the conference committee report for fiscal year 1998.

    Unfortunately, it has not been done.

    As a taxpayer, Mr. Chairman, I am greatly concerned when tens of thousands of tax dollars are spent to bring in experts from all over the country to advise the NIH, and their top priority recommendation, endorsed by Congress, is not acted upon. But as the parent of Michael Giammalvo, I am outraged.

    Since the report was issued, new research identified many sickle cell anemia patients who have required the same painful treatment as Cooley's anemia patients, greatly enlarging the population that would be served by such a network. And the network is all the more important because significant research opportunities exist.

    According to the Special Emphasis Panel's report and according to the independent experts in the field, a couple of examples: Opportunities exist to develop an oral drug to remove iron so patients like Michael won't have to be hooked up to a pump 10 to 12 hours per day. Those opportunities need to be pursued aggressively by NIH.
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    The use of enhanced fetal hemoglobin could end the need for blood transfusion and, therefore, the need for removing iron from the body.

    But a vigorous research effort must be made. Opportunities exist to find ways to measure the iron accumulation to the organs more effectively. Today Michael has to have a needle stuck through his abdomen into his liver to get an accurate measurement, a painful and costly procedure. There is promising new technology called a superconducting quantum interference device, or SQuID. But there is only one such machine in existence in this country.

    There are more areas of important research, Mr. Chairman, in my written statement, but I want to be very clear on my basic point: All of us affiliated with Cooley's Anemia Foundation are very supportive and grateful for the research that has been conducted at or funded by NHLBI and NIDDK over the years. We know that it is directly responsible for the extended life span of our children. We also know that we are on the cusp of many breakthroughs. Important advances can be made in treatment for these kids.

    My dreams for Michael are no different than any other parents' for their children. I want him to grow up happy. I want him to experience all that life in our great country has to offer. I do not care if he is a doctor or a Congressman or an auto mechanic, so long as he has the same opportunities to succeed that everyone else has.

    The creation of a network of collaborative clinical centers is the first step in assuring that successful outcome.

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    Thank you for your consideration.

    [The prepared statement of Joseph Giammalvo follows:]
    "The Official Committee record contains additional material here."

    Mr. PORTER. Mr. Giammalvo, thank you for your testimony.

    Has NIH told you why they are not proceeding with this?

    Mr. GIAMMALVO. I have to field that to Ms. Cioffi.

    Ms. CIOFFI. They think that the patient population is too small, and actually, I don't think that they recognize all of the recommendations out of the Special Emphasis Panel are really ready for development. Any number of them can be explored at this time. In particular, fertility issues, psychosocial issues, the iron measurement issues, they are all very ripe for proceeding with a collaborative network.

    Mr. PORTER. We will follow up with NIH and stay in touch with you regarding all of this because obviously we want to give Michael and all the Michaels the greatest opportunity possible for them to live normal lives.

    Mr. GIAMMALVO. Thank you.

    Mr. PORTER. We thank you for your testimony.

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    Mr. GIAMMALVO. Thank you.


Thursday, February 5, 1998.





    Mr. PORTER. Alfred Rider, M.D., Ph.D., President; Michael Joyce, Trustee; and Christopher Campbell, Trustee; testifying regarding Children's Brain Diseases.

    Dr. Rider, it is good to see you again, sir.

    Dr. RIDER. I am J. Alfred Rider, President of the Board of Trustees of the Children's Brain Diseases Foundation. This will make the 21st time since 1978 we have been here, and there have been tremendous progresses made in the research on Batten disease. When we first started in 1978, nobody had heard of the disease. There was no treatment, no research going on, and so forth.

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    As a direct result of this committee's actions, finally, in 1991 to make specific dollar amount recommendations, significant research has been done. Batten disease, as I have told you before, is the most common neurogenetic disease in children, about 300 children born a year. There are over 440,000 carriers in the United States.

    In 1995, just to show you how fast things progress, the gene defect and the early infantile form of the disease was localized on chromosome 1p32.

    In 1996, the gene for the classical infantile form was localized on chromosome 11p15, and the gene for the variant of the late infantile which lies on chromosome 15q21–23.

    In 1997, a group led by Dr. Pete Lobel, using a much faster novel approach of looking at lysosomal enzymes instead of concentrating on which of the 100,000 genes are defective, discovered the molecular basis for the late infantile form of Batten disease by identifying the single protein that is absent in this disease.

    It is now possible to make an absolute definitive diagnosis and determine carriers in all three childhood forms by a simple blood test, and to prevent the disease by genetic counseling, including in vitro fertilization.

    In spite of this, in 1997 the NINDS spent $2,838,000, which was 13 percent less than in 1994. So we had great impetus growing, and now we hope that this trend won't continue.

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    If we can continue with that research, we should be able to get specific enzyme therapy which will be able to threat these diseases. We feel that the diseases drain our national resources by approximately $712,000,000 a year.

    Our specific recommendations are these: Although there have been four significant breakthroughs with regard to gene localization in Batten disease and the identification of the single protein that is absent in the late infantile form, we were disappointed that the funding for 1997 was approximately 13 percent less than 1994. As you know, the budget has continually increased at the NIH every year. Consequently, we would like to suggest that the following wording, similar to what we used last year:

    ''The committee continues to be concerned with the pace of research in Batten disease. The committee believes that the institute should actively solicit and encourage quality grant applications for Batten disease and that it continue to take the steps necessary to assure that a vigorous research program is sustained and expanded. The committee has requested that $3,470,000 within the funds available to the NINDS be spent on Batten disease research. This represents an average yearly increase of 4.1 percent since 1994. This will allow for $2,800,000 for continuation and renewal grants and $631,000 for new grants.''

    I would like to mention, I have Michael Joyce here and his wife, Rosemarie. They are parents of a set of twins, Ian and Joey, who have the late infantile form of Batten disease. I think they have been here since you have been chairman the last several times. I am happy to say they are still alive and doing as well as can be expected because they get superior nursing care, and there is where tremendous expenses come in.

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    I thank you very kindly.

    [The prepared statement of J. Alfred Rider, M.D., follows:]
    "The Official Committee record contains additional material here."

    Mr. PORTER. Well, Dr. Rider, I have been on this subcommittee for 17 years, and you have been coming here longer than I have been here. You have been a wonderful, strong advocate, and we have attempted, I think, to listen very carefully to what you have to tell us. You know that we don't direct NIH to do things, but sometimes we can lean a little bit. I was not, frankly, aware that they had been spending less on this. I am going to look into it personally and find out why and assure you that we will do everything we can to continue to put this at a high priority at NIH.

    The Joyce family and the boys have touched our hearts many times, and we want to respond, obviously, for them and for all the children that suffer from this terrible disease. So we will do our best, and we just want to say that your advocacy has been absolutely wonderful, and we look forward to seeing you—look forward to progress.

    Thank you, Dr. Rider.

    Dr. RIDER. As a transplanted Illinoisan to San Francisco and knowing that you are from the Northern Jacoby area, I came from Riverside, Illinois, so it is a pleasure to testify.

    Mr. PORTER. Very nearby, right.
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    Thank you very much.


Thursday, February 5, 1998.



    Mr. PORTER. Bobby Simpson, Director, Rehabilitation Services, testifying in behalf of the American Rehabilitation Network.

    Mr. SIMPSON. Thank you, Mr. Chairman, members of the committee. It is indeed a pleasure to be here. I am Bobby Simpson. I am the commissioner of Arkansas Rehabilitation Services, the State vocational rehabilitation agency in the fine State of Arkansas, from which Mr. Dickey is a distinguished member of this fine subcommittee. Today, I am pleased to be representing and testifying on behalf of the American Rehabaction Network, the membership of which is composed of thousands of dedicated men and women who are vitally interested in and supportive of the public vocational rehabilitation of persons with mental and/or physical disabilities.

    This particular network is the largest and only professional development and advocacy organization whose sole purpose is to support the public service delivery system of services that enables and ensures that hundreds of thousands of persons with disabilities have the opportunity to take their place in a competitive employment situation as taxpaying members of society and have an opportunity to live independent, productive lives. That is the whole focus of our testimony today, is to urge adequate Federal monies be appropriated under Title I of the Rehabilitation Act in order that thousands of unserved and underserved Americans with disabilities might take their place in meaningful, high-quality jobs.
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    You have seen, I think, already this morning, the indication of the definite need for an expanded service delivery system of vocational rehabilitation services for people with disabilities by the individuals who have already testified. You have seen young people who, with the right kind of medical support and services, are going to grow up into adolescents and young adults. They need a strong State-Federal partnership of public vocational rehabilitation services in order to get the kind of training and the kind of skills they need in order to prepare for and enter the workplace and become productive, independent, taxpaying members of society.

    Many of these young people you saw in here will end up having the opportunity to work if our program is adequately funded. To that end, our members are urging the Congress to appropriate $3,000,000,000 in fiscal year 1999 for vocational rehabilitation services under Title I of the Rehabilitation Act.

    Currently, the administration's budget has a proposal for $2,300,000,000, approximately, for Title I of the Rehabilitation Act. That is just a few pennies above the mandatory cost-of-living increase that is contained within the program.

    Mr. Chairman and members of the committee, it has been extremely frustrating to me, as a person with a disability, who has grown up in this system, who would not be working today were it not for the public vocational rehabilitation system, and now one who has had the opportunity to live independently, to live in my own home, to drive my own vehicle, the privilege to pay taxes, which I consider to be a privilege, considering that well-intended medical professionals indicated I would spend my life in a nursing home instead. All that has happened because of the strong public vocational rehabilitation program.
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