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DEPARTMENTS OF LABOR, HEALTH AND

HUMAN SERVICES, AND EDUCATION, AND RELATED AGENCIES APPROPRIATIONS FOR FISCAL YEAR 1992

THURSDAY, APRIL 25, 1991

U.S. SENATE,
SUBCOMMITTEE OF THE COMMITTEE ON APPROPRIATIONS,

Washington, DC. The subcommittee met, at 10 a.m., in room SD-192, Dirksen Senate Office Building, Hon. Brock Adams presiding.

Present: Senators Adams and Harkin.

NONDEPARTMENTAL WITNESSES

OPENING REMARKS OF SENATOR BROCK ADAMS Senator ADAMS. I will give my apologies in advance to all of you for the committee being delayed this morning. It is the usual Senate problem that we are in two places at the same time. We were with the 20th anniversary of the formation of the Cancer Institute, and Speaker Tip O'Neill, who, I do not know whether many of you know, is recovering from cancer at this time, was there with some others. So they asked that several of us remain until that had started.

I apologize. It does not mean that we place one of the many problems that we have in the health field ahead of another. It is just that it was sort of an orderly process of events.

Senator Harkin will be here during part of the morning. I am Senator Adams. As I say, I give apologies for both of us for this. We are terribly interested in what you have to do, and we will open the subcommittee and use our regular rules.

Today the subcommittee will continue with its sixth and last day of testimony from approximately 150 congressional and public witnesses. We have scheduled six special sessions to hear this testimony. This year the committee had requests from 307 individuals and public organizations to testify before the subcommittee. Unfortunately, because of the limitations of time we were able to schedule only the first 150 such individuals and organizations who wrote to us.

I regret we cannot hear everyone, but the committee has made it known to those who did not make the cutoff that we will be pleased to publish their statements in the hearing record and to read those and to make them part of the deliberations of the committee.

In order to keep on schedule, we will need to use this red light/ green light system which will give each witness 3 minutes to summarize the key points of their statement. I would request each witness to please attempt to complete the statement when the 3minute red light goes on. This will give us time to perhaps ask a few questions, and it will also ensure that everyone gets a fair and equal chance to address the subcommittee.

Today we will hear testimony on a wide range of subjects, including programs funded by the Alcohol, Drug Abuse and Mental Health Administration, programs for job training and displaced homemakers, programs of concern to Federal unions and biomedical research with emphasis on sleep disorders and dental research.

I have noticed that a number of statements suggest increases of well over $1 billion and well over 50 percent increases for just a handful of programs. Needless to say, the Budget Enforcement Act has given us all a very difficult situation this year. From that act, we expect a growth of 4 to 5 percent over the 1991 level in the total for this subcommittee.

While I am sure we will agree on the importance of several programs we will discuss this morning, the amount of funding increases that we will be able to provide will be limited. Senator Harkin and I regret that. Senator Harkin and I believe in these programs; we believe in all of you. I look forward to the advice of each one of you in helping us make the many difficult decisions that we face this year. STATEMENT OF MARTHA KEYS, VICE PRESIDENT FOR PUBLIC AF.

FAIRS, NATIONAL MULTIPLE SCLEROSIS SOCIETY Senator ADAMS. At this point I would like to call the first witness and welcome them to the subcommittee. Our first witness this morning will be Hon. Martha Keys, National Multiple Sclerosis Society. Congresswoman Keys and I served together in the House of Representatives.

Representative Keys, it is a pleasure to welcome you to the committee on behalf of the Multiple Sclerosis Society.

Ms. KEYS. Thank you, Senator. It is a pleasure to be here again and to see you on this beautiful morning. I will be brief but try to point out a few of the things in my testimony which I would like to be entered into the record.

I am here again testifying on behalf of the 400,000 members of the National Multiple Sclerosis Society. That is more than onequarter million individuals affected by multiple sclerosis and more than 1 million family members directly affected by this disease.

We estimate as best we know how that the cost in direct outlays and lost earnings and lost consumer power in this country due to multiple sclerosis (MS] is somewhere in excess of $2.5 billion. It strikes people usually between the ages of 20 and 40, twice as many women as men, and when you think about the reality that every 54 minutes someone is diagnosed with MS, you realize something about the tremendous toll this takes on individuals at the height of their productivity and, thus, on our community and on our national economy.

We are excited, however, because of the tremendous strides that have been made recently. We are really building a pyramid of information that we are sure is going to bring us the answer to the cause of MS and treatments for it. It is still unknown. It is difficult to diagnose because it has a random, erratic pattern of exacerbations and remissions, so it is even hard sometimes to tell whether the outcomes of certain treatments are due to the treatments or due to the natural unpredictable cause of the disease.

But there are exciting areas of research on the disease. One of them and one of the most exciting out at NIH in NINDS which does the bulk of research on MS has been the discovery this past year that episodes are occurring in the brain and neural system even when there are not heavy symptomatic manifestations of that in the individual. That is, the multiple resonance imaging instruments that they are able to use are able to pick up episodes and evidence of activity in the brain and neural system even when the individual is not having an exacerbation and having heavy symptomatic evidence of this.

They are very excited about this because it means that there will probably come from this a great deal more knowledge about the disease itself and a way of having earlier diagnosis and, thus, earlier treatment.

Another very exciting area of treatment, of course, is the role of genetic factors, and I really want to thank the committee, you, Senator Adams, and the rest of the committee for your report language last year which directed NINDS to spend $2 million on this particular area of research. Because of that, they have been able to make a number of new grants into the area of genetic origins and related issues about myelin-producing cell disorders.

As I say, there are two Institutes that do research related to MS. The bulk of it is certainly done at NINDS, and this year they expect to spend about $55 million out of their $542 million budget on MS-related research. We would strongly ask that in this coming fiscal year you provide NINDS with $765 million over all. We believe if that happens they will be able to spend about $69.5 million on MS-related research. We believe there is enough new evidence, enough exciting near answers that are being shown in research regularly around the country and at NIH that it is merited to pursue this.

We also hope that in NAIAD, another Institute that does research that is related to NINDS, you will be able to provide a funding level of $1.33 billion for fiscal year 1992. We believe if you can provide that funding level for their many research needs, they will be able to spend close to $14 billion on MS-related research, and we believe it is warranted because of the strong answers we are finding in the immunological research.

We have given you in the testimony, which I will not bother to relate, a list of the most promising areas. We do want to reiterate that the use of animal models in research is absolutely essential to continuing the progress that we are seeing made. I could quote you some particular examples from our own research as well as NIH research.

We at the National Multiple Sclerosis Society do raise funds for research ourself and make grants to the tune of about $12 million worth this year.

But I would rather take the time to make you think just of some of the people. We all have friends around the Hill who have MS, and it is very rewarding to me to be able to be working with an organization that works very hard to try to improve the quality of lives of all people in the country. I wish you could have met some of the people that I have met in the past year:

Eva Lincoln from Chicago, IL, a school teacher who, in spite of being entirely wheelchair bound and able to move only with her chin, teaches first grade youngsters. Parents of children in her class speak eloquently of how excited they are that her children have been fortunate enough to draw her as a first grade teacher because she certainly accomplishes the teaching of substance but she teaches them so much more about life, about the things that they can do to be helpful; and

George Ganta, a chemist from Michigan, who in spite of MS has persevered, while coping with the difficulties of this disease daily holds several patents in research and continues to exhibit productivity.

What makes you wonder most is what would happen if these people were not limited by a very disabling disease, really, one of the major disabling diseases of young adults in this country.

So I would only emphasize that this is the Decade of the Brain. You know that, you in your wisdom, and this committee and this Congress wanted to focus on this very promising area of research. You know, that means a lot, to a lot of people around the country. They know that it is the Decade of the Brain, and they know that it is an area in which answers could come that could really change their lives and could change a lot that would positively affect our economy and our national community. It means something to them.

PREPARED STATEMENT

So I would urge you to keep the funding curve upward, even knowing the restrictions that you have and how difficult it is, because without the funding the promises that are there in that implementation plan that has been so wisely prepared by an advisory committee of professionals, a few lay persons that were knowledgeable, the promises that were there of finding a cause of MS and promising treatment for it will just never be met by the end of this decade.

So I thank you very much for the privilege of testifying today. [The statement follows:]

STATEMENT OF MARTHA KEYS Mr. Chairman, distinguished members of the subcommittee. My name is Martha Keys, vice president of public affairs for the National Multiple Sclerosis Society. I thank you for the opportunity of speaking today on behalf of the 400,000 members of the National Multiple Sclerosis Society and the more than one million individuals and families affected by MS. I want to take the occasion to urge you to actively pursue the Decade of the Brain Initiative so that its potential can be felt by millions of Americans.

Multiple sclerosis is a chronic, often disabling, neurological disease that is most often diagnosed between the ages of 20 and 40_hitting, people in the prime of their lives. The disease is more common among women and whites. Today, it is the second most common non-traumatic neurological disorder among young adults. Estimates place the annual medical expenses and lost earnings of households with MS in the United States in excess of $2.5 billion.

I thank the Chair and the Members of this Subcommittee for this opportunity to testify in support of the medical research programs supported by the National Institutes of Health, as well as for your support of biomedical research programs over the past decade. Unfortunately, I can not yet report to you that our efforts have paid of in terms of finding a cure for multiple sclerosis. However, I can report that our efforts are lending more and more hope as new possibilities for early diagnosis and treatment become evident through new and improved research techniques.

The NMSS urges this Subcommittee to continue its record of support for biomedical research in fiscal year 1992. We recognize that this is a uniquely tight budget year. However, of the many compelling programs you must choose between, we believe that NIH is certainly among the most worthy. In our view, increased Federal support for the type of research and training that is the unique province of NIH is the single greatest contribution that you can make to assist people with MS and their families. In the short term, research will yield data that are part of the pyramid of information building towards a cure for MS. In the long run, your investment in NIH will Bay off in the form of better health, higher quality lives, and less disability for persons with MS.

BACKGROUND

Let me remind you how much we still have to learn about MS: - The cause of MS is still unknown. Most scientists believe that it's an autoimmune disease, characterized by the body's own “defense system” reacting so as to damage the nervous system, causing inflammation and scarring lesions in the white matter (myelin) of the brain and spinal cord. Why the immune system behaves in this way is unclear, although some believe that it can be triggered by an external infectious agent like a virus. Another factor being closely studied for a possible causative link is genetic predisposition. Tied to these possibilities is the passage of harmful immune system substanæs into the brain, past the

blood-brain barrier which normally protects the brain against such intrusions. -No definitive test is available to diagnose MS. To date, physicians have had to

rely on multiple tools, including imaging technologies and laboratory tests, to rule out other diseases. Recent advances show promise for developing a specific

test for MS diagnosis, but are closely related to progress in identifying a cause. -No cure is available for MS. In fact, most current therapies remain experi

mental, and no treatment beneficial to all patients has been found. To date, physicians have generally relied on steroids possessing anti-inflammatory properties, but this approach may only help in the short run for some patients. Current research is exploring new therapeutic approaches, ranging from new symptomatic drugs that better conduct electrical signals in the damaged nervous system to development of more specific immune interception techniques. In addition, since the course of MS may be characterized by periods of exacerbations and remissions, it is difficult to definitely assess the effectiveness of therapies and the progression of the disease-thus, new techniques for evaluating treat

ment outcomes must be developed. As you see, we face many challenges and have a long way to go toward eliminating MS, but current research is yielding promising developments. For instance, in October 1990, scientists at the National Institute of Neurological Disorders and Stroke at NIH announced research findings suggesting that MS may be very “active” even at its earliest states when there are few clinical signs of disease in a patient. Until recently, MS was thought to be active only during obvious clinical “attacks.” However, using the technique of magnetic resonance imaging, scientists have now shown that, even when symptoms are stable, lesions in the brain occur frequently and continuously. This finding is significant because it may help in developing more effective treatment methods by allowing physicians to monitor the number, size, and location of brain lesions, and to modify lesion development, even before seeing effects clinically in the patient.

Another exciting area of research is the role of genetic factors in MS. Tremendous opportunities now exist due to new techniques in molecular biology and molecular genetics. Currently, for instance, an NIH intramural laboratory is working to sequence the portions of the human genome relevant to neurological and neuromuscular diseases. And, I would like to thank and commend this Committee for its foresight in recognizing the importance of this area of research in last year's Committee report. The $2 million you directed to NINDS allowed the Institute to award

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