Christopher Reeve Testimony: April 14, 1999

CHRISTOPHER REEVE FOUNDATION

WITNESS

Mr. Porter: The subcommittee will come to order. Our next witness is Christopher Reeve, the President of the Christopher Reeve Foundation. And Mr. Reeve, we admire the courage and determination that you have shown in the face of the very serious injuries that you have sustained. It is an inspiration to all of us, and we very much appreciate your taking the great effort that it requires for you to come here and to testify this morning. It is actually this afternoon. Thank you very much. Please proceed. Mr. Hoyer.

Mr. Hoyer: Mr. Chairman, if I can just briefly in joining you in welcoming Christopher Reeve, a man of courage and a man of vision to our hearing room. I was talking to him a little earlier. He is, of course, one of the best known actors that we have in America and, therefore, in the world. It is he who appeared in a movie called Superman, and Superman was physically, incredibly able and indestructible. Christopher Reeve found, as all of us know, that we are not indestructible, that we are subject to the vagaries of fate; but what we found in Christopher Reeve, it was not that his body was so strong, but that his will and his courage was so immense and to that extent he is a superman; and I want to take this opportunity, as you did, to thank him for what he is doing for millions of people throughout this world, not only who suffer or have had spinal cord injuries but the disability community generally. He talked about some 50-plus million Americans who have disabilities, not exactly like his but who are also challenged. And he has raised sensitivity and consciousness in our country and throughout the world and, Mr. Reeve, we welcome you and we thank you for your leadership and all that you are doing, and we look forward to your testimony.

Mr. Reeve: Thank you very much. Congressman Hoyer and Congressman Porter, I would like to submit the formal testimony that you have received for the record. Mr. Chairman, committee Members, in 1913 a great Spanish neuroscientist, Santiago Ramon Y Cajal, concluded a treatise entitled Degeneration and Regeneration of the Nervous System by declaring, quote, "In adult centers, the nerve paths are something fixed, ended, immutable. Everything may die. Nothing may be regenerated."

In the October 1988 correction, in the 1998 issue of Brain Work, a leading journal of neuroscience, researchers stated, quote, "In spinal cord injury fatalism is finished, replaced by the certainty that scientists will find ways to help spinal cord victims recover."

We live in a time when the words impossible and unsolvable are no longer part of the scientific community's vocabulary. Each day we move closer to trials that will not just minimize the symptoms of disease and injury but eliminate them. You have heard from the directors of the NIH over the past few weeks of new medical interventions that will end epilepsy, Alzheimer's, Parkinson's, the devastating effects of stroke, chronic pain, organ rejection after transplantation. You have listened as the directors have outlined the details of an HIV vaccine, dramatic improvements in the effective treatment of drug addiction, mouse models that accurately reproduce human cancers in order to prevent early detection and interventions, and, of course, the miraculous mapping and sequencing of the human genome which is already changing the world of medicine and medical research. The rapid pace of these advances is occurring because you, the Congress of the United States and our President, had the vision in 1998 to increase funding for the NIH by 15 percent, and this momentum must not be slowed.

Our government may operate under a budget that is decided from year to year. Our scientists cannot. New scientific initiatives, experiments, and laboratories across the United States, once nurtured and financed, operate on two- and three- and four-year plans, but we must not fund our scientists who have the potential to alleviate enormous suffering without giving them the assurance that we will not put on the brakes and stop the flow of dollars that will make their progress possible. And I quote from just two of the best investigators in the field, quote, "Researchers are forced to fight for funds sufficient to continue their work; and if this pattern continues, whole segments of scientific and medical research in the United States could disappear" That comes from Lorne Mendell, president of the Society of Neuroscience. And another quote, "So much has been learned in just the last few years with the help of increased NIH funding. Whether effective treatments are found in 3 versus 30 years makes a world of difference to people affected by diseases of the brain and spinal cord." And that is from Dennis Choi, who is the president-elect of the Society of Neuroscience.

I represent nearly 400,000 spinal cord-injured Americans and millions more around the world who now have a legitimate reason to believe that the day will come when they will rise out of these wheelchairs. Scientists are successfully exploring one of the last great mysteries of medicine, the frontier of inner space, the diseases of the brain and the central nervous system.

And when I speak across the country, I ask stadiums full of Americans for a show of hands if their lives have been affected by Alzheimer's or stroke, ALS, MS, Parkinson's or spinal cord injury. Time and time again I look out onto a sea of raised hands.

The life expectancy of Americans has practically doubled over the course of the last century, but we here today have the responsibility to ensure that those added years are onesof quality and productivity, not pain and suffering.

I am privileged to communicate on a regular basis with scientists across our country and around the world. I recently spoke with Dr. Martin Schwab at the University of Zurich and Dr. Angela Vescovi at the National Neurological Institute in Milan. Dr. Schwab has developed a protein inhibitor that allows regeneration of nerves in the spinal cord. Dr. Vescovi has made a ground-breaking discovery regarding epidemal stem cells. These are undifferentiated cells whose primary function is the formation of the fetus during gestation. The common wisdom had always been that these cells are not present and in the adult mammal, but they've been found to exist in the ventricles of the brain and the spinal cord; and Dr. Vescovi has discovered that these cells are also found in the skin, so that thousands of these cells could be biopsied from the patient's skin and grown in the laboratory; and when injected into the site of the lesion in the cord, they are capable of becoming neurons and axons necessary to bridge the gap across the injury; and because only eight to ten percent of nerves in the cord are needed for sensation and motor function, it seems likely that an adequate number of appropriate connections will make the bridging technique successful; and because this therapy uses cells from the patient's own body, there is no question of toxicity or rejection by the autoimmune system.

I asked Dr. Schwab and Dr. Vescovi if a lack of proper funding was impeding their progress. The answer from both of them was no, because Italy and Switzerland are funding basic science at the appropriate levels.

The same week I spoke with these European researchers, I was honored to receive the first addition of a book edited by Dr. Mark Tuszynski of UC San Diego, a book entitled CNS Regeneration. This is the first textbook of its kind and one that could not have been written as recently as five years ago; but in a letter that accompanied the text, Dr. Tuszynski tempered his excitement about the extraordinarily rapid progress in the field with a plea for increased funding. Without your support, spinal cord victims will continue to sit in wheelchairs draining the resources of insurance companies as well as Medicaid, Medicare, V.A. Hospitals and nursing homes; but with your continued support, it is very possible that within the next three to five years people who are now afflicted with a wide variety of disabilities will be able to overcome them. They will regain their rightful place in society to rejoin the work force and at last be relieved of the suffering they and their families have had to endure. So the plea for adequate funding cannot be ignored.

Now, some Members have expressed concern that researchers can't absorb a further increase in the budget.

And I wish to express my opposition to that point of view. Evidence to the contrary is overwhelming. Over the last few years, the NIH has only been able to fund 22 percent of grant applications that have met the high standards of the evaluation process. Thousands of equally worthwhile proposals have been turned down because of budget constraints, including some of the most innovative ideas coming from young post docs and graduate students.

This has led to an alarming conservatism in the funding of research. With an appropriate increase in the budget, the United States would be able to keep pace with foreign investigators who have the resources to conduct truly cutting edge experiments.

In all my discussions with American scientists, I have asked them to estimate when human trials might begin. Unfortunately, I always get the same answer: it all depends on money.

In 1961, President Kennedy presented a seemingly impossible challenge: to land a man on the moon and bring him safely back to earth and to accomplish it by the end of the decade. Scientists and technicians across the country shook their heads in disbelief because the technology was not yet available to accomplish this task. But with resources from the government, the support of the private sector, and the hard work of the over 400,000 Americans, we realized that vision.

The Members of the subcommittee, you have brought us tantalizingly close to the moon's surface. Please give us the resources to enable us to make a safe landing and then bring us home. I urge you and your colleagues to pass a 15 percent increase in the budget of the National Institutes of Health for the fiscal year 2000.

Thank you very much, and I would be pleased to answer any questions.

[The prepared statement of Christopher Reeve follows:]

Mr. Porter: Mr. Reeve, thank you for your outstanding statement, what you said at the beginning about the impossible no longer being impossible, it is exactly right. What we hear from we listen to the NIH Directors, and next week we are going to have 56, including Dr. Varmus, Noble Laureates before the subcommittee. We understand the opportunities that have been opened through medical research and the need for additional resources to make those possibilities become realities. And regarding spinal cord research, again you are exactly correct, the possibilities were unimaginable very recently and now are very imaginable and, in fact, looking increasingly very possible.

Congress initiated the effort to double funding for NIH and biomedical research last year. With the 15 percent downpayment it is unfortunate, and I know my Democratic colleagues agree with this that the President's budget reflects only about a 1.4 percent increase, all of us in the Congress find that absolutely unacceptable. That is not going to occur. What we are going to do is to provide the maximum amount of resources that we possibly can, and, hopefully, and with your help, provide an additional 15 percent that I think will get us over the hump and well on our way to achieving the doubling over a 5-year period.

Your advocacy is making a tremendous difference. We often think that public policy is simply made by 535-elected representatives in Washington, but most Americans really realize deep in their hearts that they are the ones that make the public policy; and if they will let their voices be heard, they will be listened to.

Your advocacy is generating the kind of support that we need to hear in Washington for doubling the budget for NIH over 5 years. And so we ask your continuing help. You are already way out front, and doing exactly what I think needs to be done, but your continuing help will get us where we want to go. And together we will look forward to the time when you and others like you who have experienced such devastating injuries will leave the wheelchair and stand again, and be your normal selves.

I think that, in fact, is within reach if only we will make the commitment to achieve it. And we thank you for coming here today and inspiring us in the way you are inspiring so many people across our country, making a difference and making happen what can happen. Mr. Hoyer.

Mr. Hoyer: Mr. Chairman, thank you very much. Mr. Reeve, I agree with the Chairman, it was a compelling statement. And your courage is compelling. You and I discussed the passage of the Americans with Disabilities Act. It passed, not so much because those of us in the Congress advocated for it, it passed because Americans with various different kinds of disabilities came to the Congress and said we can do a lotof things, give us the opportunity to do it.

And as I listened to your testimony, I thought to myself, what a compelling example you are serving for so many and the hope that you are giving to so many. And as you made the analogy to President Kennedy's commitment to get to the moon within the decade of the '60s, I was a young man and very taken with President Kennedy. As a matter of fact, got into politics because I was inspired by President Kennedy, and that was a major facet of the '60s. And the hope that we had that we could do something, as you point out, that was said to be impossible.

But as I thought about it, as well, and I understand Neil Armstrong just spoke and a number of the astronauts spoke because of the anniversary, we look forward to you taking one small step for Christopher Reeve, which will be a giant step for mankind. That analogy of a small step for Neil Armstrong was a small step, and he had all the abilities to take that small step.

When you take that step, it will be a giant step, not just for you, but for millions and millions of people currently suffering from a fateful accident, and raising their hands and stating in stadiums all over the world, yes, I know myself, my brother, my sister, my husband, my wife, my friend, my neighbor, my classmate, I know somebody who has been struck down by fate.

John Kennedy, when he was speaking about some young people with mental disabilities, made a statement that I think is very apropos here. He said, "Although these children are the victims of fate, they will not be the victims of our neglect."

I can tell you that Chairman Porter has been as strong a leader in the Congress of the United States as I have seen on behalf of NIH, on behalf of funding to make the breakthroughs that will make such a vast difference for individuals but, as importantly, for all the rest of us who will be advantaged by the empowering of those individuals to reach their full potentials.

And I thank you for coming. I know obviously there are, I am sure, hundreds of groups, individuals who want you to appear someplace. And you can't possibly respond to them all. We have some small appreciation of that, but not on the magnitude that you confront. And you agreed to come, I will guarantee you that your statement will be known, made known to, not only the Members of this subcommittee, but all the members of the Senate subcommittee as well, as we focus on the adoption of the NIH budget for the next year and for the five years succeeding.

Mr. Chairman, I want to thank you as well for your leadership on NIH funding, both on specifics and on general impact, because you are making a difference as well.

Thank you very much, Mr. Reeve, for being with us today.

Mr. Reeve: Thank you.

Mr. Porter: Thank you, Mr. Hoyer. Let me thank, Mr. Reeve, and all the witnesses who have appeared before the subcommittee today. The subcommittee stands in recess until 2:00 p.m.

Mr. Reeve: Thank you.
[Recess.]