Christopher Reeve Testimony: June 5, 1997

NONDEPARTMENTAL WITNESSES

STATEMENT OF CHRISTOPHER REEVE, ACTOR ACCOMPANIED BY DANA REEVE

OPENING REMARKS OF SENATOR ARLEN SPECTER

We are privileged to have with us today a distinguished American, Mr. Christopher Reeve, his wife Dana and his associates. Mr. Reeve is well known for his epic roles in Superman as well as other distinguished theatrical accomplishments and for a very tragic accident and injury where he sustained the severance of his spinal cord in a horseback riding incident.

Mr. Reeve has become a leading spokesperson for medical research generally and more particularly on the spinal cord issue.

Last week the subcommittee held a hearing that centered around the National Cancer Act, the 25th anniversary, in Los Angeles, and it has been our experience that when theatrical personalities speak out there is very considerable public attention to these issues. That happens to be a fact of life. When Hollywood speaks, the world listens. When Washington speaks the world frequently snoozes. And to get the kind of funding necessary to deal with these serious problems, it has become a practice for our hearings to call upon people who have had real life experiences, where there will be a tremendous amount of public interest.

There has been tremendous public interest and concern watching Mr. Reeve's recovery, which is very pronounced.

We had a hearing several months ago. We had many Senators join us in the Capitol. And Mr. Reeve was in town again today and we thought we would utilize this opportunity to get an update on his condition and again to focus attention on the need for funding for spinal cord research and for other NIH research, specifically for the deaf.

This hearing is particularly timely because we are about to consider the NIH budget. We have those hearings scheduled next week. There has been great interest in increasing the NIH funding in the Congress, but a good bit of that interest has been more theoretical than real, I must tell you. We have that illustrated in the budget resolution 2 weeks ago, where a sense-of-the-Senate resolution was passed unanimously, 98 to nothing, to increase funding for NIH by $2 billion.

The only problem with a resolution of that sort is it is simply an expression of the Senate's druthers and it does not mean a thing in terms of dollars. Druthers do not make dollars.

Senator Harkin and I then offered an amendment which would have added $1.1 billion to NIH funding with a specific cut, and we proposed a four-tenths of 1 percent cut on nondefense discretionary spending, which could have been accommodated out of administrative costs and we think fairly easily done. That amendment was defeated 63 to 37.

We offered that amendment for a number of reasons. One was so that we would have real dollars to work with. The second reason was so that when various people came to see us who wanted to know where their share was of the $2 billion, we could tell them that there was no $2 billion. People have a hard time understanding Washington doublespeak: Sense-of-the- Senate resolution, $2 billion--no money.

So that is why we are going to make a full-court press to turn the druthers into dollars. This subcommittee has set a target of a 7.5-percent increase, or $952 million, this year. The target which has been suggested is to double NIH funding over 5 years. Well, that is about 20 percent a year and that would cost $2.5 billion, which many of us would like to see. But the reality, candidly, is not present.

Now, that has led Senator Harkin and myself to introduce the National Fund for Health Research Act, which would require each health plan to contribute 1 percent of all health premiums received to the Federal Treasury, which would create an additional pool of some $6 billion. This is tough because, it is a mandate or a tax that is hard to get done.

But it is my sense that this would be a good investment for the insurance industry because it would produce research which would save money on spinal cord injuries. There are 10,000 Americans who incur paralyzing, traumatic injury each year to their spinal cords, and there are about 200,000 Americans who live with the consequences of spinal cord injuries. Caring for these people costs $5 billion annually.

There are many analyses and studies supporting the conclusion that it would be cost effective to have more money in research. We hope to persuade the insurance companies of the logic of our position or, in the absence of that, to persuade the Congress and the President that it is something that ought to be done as a matter of sound public policy.

I am pleased now to yield to my distinguished colleague, the ranking member, Senator Harkin.

OPENING REMARKS OF SENATOR TOM HARKIN

Again, to Christopher Reeve, I just want to say thank you for serving as an eloquent advocate for improving people's lives by investing in medical research. Superman may have been science fiction, but the benefits from medical research are science fact. You are an eloquent spokesman for that.

Preventing strokes and slowing the progression of Alzheimer's, better and more effective treatments for spinal cord injuries, that is not Hollywood fantasy. It is some of the real life progress that is being made today in research institutes and laboratories and hospitals around the country.

I might also add that I too have a very personal interest in this. My nephew Kelly at the age of 19 years of age had an accident and he has been quadriplegic since, and that has been just about 20 years ago. As I have watched his progress and his difficulties, it has propelled me to do whatever I can to get more research into this area because I know there are breakthroughs there and I know there are things that can be done. We have seen them.

So again, we are on the brink of this, but we have got to invest in it.

Senator Specter just mentioned, the other day the Senate voted 98 to nothing to double funding for NIH. The next day Senator Specter offered an amendment to put the money where our mouths were and we lost it. Barely one-third of the Senate voted for it. One day we voted to double it--sense of the Senate, nice. The next day, to put the hard money there: I am sorry, we could not get that done.

So again, when we look at this--and I have often made the analogy, and I know, Christopher, I have talked to you about this and I know my colleagues have heard me say this many times--finding the cures and more cost effective treatments, it is like you have got 10 doors that are closed. Basic research, it is like you have got 10 doors that are closed, and you do not know behind which door may lie the answer. If you look behind one door, you have got a 10-percent chance of finding that answer.

Well, right now we fund about 25 percent of the peer-reviewed and accepted grant proposals at NIH. That means we can look behind door No. 1, but doors No. 2, No. 3, and No. 4 are closed. Maybe there is a cure for breast cancer behind door No. 2, or more effective treatments for Alzheimer's behind door No. 3, or better intervention for spinal injury and cures for spinal cord injury behind door No. 4. But we do not know, because we are not committing the resources to unlock those doors.

So I guess what I am saying, again, is that the budget agreement with the President makes it very clear, and I think the vote of the Senate the other day makes it very clear, that the only way we are going to devote the resources that we need and to keep from robbing Peter to pay Paul is by going outside the regular spending process that we have.

As Senator Specter said, the budget resolution calls for $24.2 billion in discretionary health spending in the year 2002. That includes all of NIH, all of the Center for Disease Control, all the community health centers, all the Older Americans Act programs, drug treatment, drug prevention, health professional training, maternal and child health care, and on and on. That adds up to $24.2 billion.

If we doubled funding for NIH, as this body has voted to do, that would cost $26 billion in 2002. In other words, that is $2 billion more than our entire function is allotted under the budget. So even if you eliminated all the funding for breast cancer screening, Meals on Wheels for seniors, drug treatment, all of that, we still would be $2 billion short of meeting the goal that the Senate wanted to have, to double NIH funding.

So the only way we are going to get it is to go outside. We need another mechanism and that is why, as Senator Specter said, we have supported the National Fund for Health Research Act, that both Senator Hatfield and I worked on for several years and now Senator Specter, who was a cosponsor of it in the past, has now taken up the lead on his side, as I have on my side.

One dollar. For every dollar that we spend on health care in this country, all we are asking for is just simply 1 penny, 1 penny. You spend a dollar on Blue Cross-Blue Shield or Aetna or Prudential or whatever your HMO may be, not 1 cent of that money goes for medical research, not 1 single penny. I think it is unconscionable and it borders on being criminal that we are spending $700 billion a year this year in medical insurance payments and not even 1 penny is going for medical research. That is what we have to do.

If we can get that accomplished, we can meet these goals. If we can get that accomplished, we can open the doors No. 2, No. 3, and No. 4, and we can find the preventions and the cures that we need.

I hate to be so passionate about it, but I have had it up to here with everyone voting to double NIH funding in the abstract, but when it comes down to real money and we offer the amendment that Senator Specter did, everyone votes no. It is time that we have to look behind the normal resources that we have here.

Thank you very much, Mr. Chairman.

Senator Specter: Thank you very much, Senator Harkin.

Senator Craig, would you care to make an opening statement.

OPENING REMARKS OF SENATOR LARRY E. CRAIG

Senator Specter: Without objection, it will be placed in the record.

Senator Craig: Mr. Chairman, let me recognize and welcome Mr. Reeve before our committee. I think, Mr. Reeve, the world has watched you with compassion, but also with pride, since the time of your accident in Virginia forward to become a very loud and gallant spokesperson for spinal cord injury.

I suspect nearly all of us know someone or have someone in our family, as I do, who has experienced a situation that left them paralyzed and in a wheelchair, then to try to lead on with a life that they had expected to lead, and it becomes very, very difficult.

You have heard both our chairman and our ranking member talk of the difficulty of priorities here with limited dollars. We spend a great amount of money in medical research and it is never enough. Your ability to speak out as you have allows us to focus and to prioritize. There is a great amount of money being spent in a variety of areas. Maybe some of it ought to be relocated, instead of added to.

At a time when our Nation speaks for a balanced budget and fiscal responsibility, it is our job here to establish those priorities, and I think when we talk of the will of the Senate or the Congress, it is in that context of striking that. So we respond to our publics, and when our publics are aware and understand the importance then we can get a good many things done.

PREPARED STATEMENT

Senator Specter: Thank you very much, Senator Craig.
[The statement follows:]

Prepared Statement of Senator Larry Craig

Mr. Chairman, I would like to thank you for holding this hearing today to spotlight medical research funding for nuerological disorders and disabilities. I would also like to thank all of our witnesses here today for sharing their insights and personal experiences with us.

Communication is the essential element of interaction in our society. It greatly impacts our daily lives and profoundly affects our future. Funding for the National Institute on Deafness and Other Communication Disorders [NIDCD] is important because of the significant strides their research has already made. NIDCD represents 46 million Americans with diseases and disorders of human communication. In the last several years, NIDCD has made tremendous headway in the prevention and treatment of hearing and communication disorders. As a result of support for the NIDCD and new findings from their studies, a whole new field and strategy of research in the hearing sciences has been created. It is so very important that we continue this trend.

Funding for biomedical research, for all diseases, is necessary because medical research is the key to eradicating disease and improving the quality of life. The benefits from medical research are far-reaching. New discoveries return value to patients and their families, as they translate into better diagnosis, better treatment, and better prevention of disease. It is important that we focus on the need to advance the knowledge and practice of medicine through research while fostering the practical application of this knowledge to the care of patients.

In addition, the financial costs of disease are staggering, both to the individual and to society as a whole in medical costs and loss of prodcutivity. The human costs of disease are incalculable. Recently Congress and the President negotiated a budget deal that will eventually lead us to a balanced budget. This will be a difficult challenge, making it more important than ever that we get our priorities straight. The testimony of our witnesses today will be very helpful in that process of priority-setting and goal setting for a shrinking budget.

Because of the advances that have been made in medical research thus far, we should be optimistic about our future. We should look at the progress that has been made in all areas of research and build on those successes. However, we should also be aware of the amount of work that is left to be done. The examples used here today on the progress the NIDCD has made with their research certainly sheds a promising light on the future of medical research.

Again, I would like to thank the chairman and our panel of witnesses here today. The insight you provide will be of great assistance to us as we focus our attention on the importance of medical research.

OPENING REMARKS OF SENATOR LAUCH FAIRCLOTH

Senator Faircloth: Yes; I have just a very, very brief statement, Senator Specter. Thank you, Mr. Chairman. I thank you for calling this hearing. I think it is a very good use of our time, and I thank Mr. Reeve for being here.

This type of thing can highlight the need that we have for research. As you mentioned, Mr. Chairman, we spend some $5 billion a year for neurological treatment and the care of neurological injuries, including spinal, and money spent in research in this area could be well spent.

I had the opportunity of working with a very good friend who in fact was a father-in-law, and he gave, established a neurological center at Duke known as Brian Neurological Research Center, and they have made great headway on Alzheimer's and other neurological disorders. It was a pleasure to watch that come to fruition and what he did there.

I am not noted in the Congress as one of its advocates of big spending, but I think that this is an opportunity to really save money and money invested in this field, in this area, will down the road really amount to a major savings for the people of the country.

I thank you for being with us, Mr. Reeve, and I thank you, Mr. Chairman.

Senator Specter: Thank you, Senator Faircloth.

SUMMARY STATEMENT OF CHRISTOPHER REEVE

Mr. Reeve: Thank you very much. Thank you, Mr. Chairman and members of the committee, for inviting me to testify today. It is a great privilege.

About 57 years ago there was someone struck by a then- incurable disease and he spoke these prophetic words. He said:

We cannot be a strong nation unless we are a healthy nation. So we must recruit not only men, women, and materials, but also knowledge and science, in the service of national strength.

Well, those are the words of President Franklin Roosevelt taken from his address at the dedication of the National Institutes of Health back in October 1940. It is remarkable that, even as war was raging in Europe and as the United States stood on the brink of entering that conflict, President Roosevelt had the foresight to recognize the importance of our Nation's investment in medical research to its national security.

So the question today is whether our current President and our Congress have the vision and the wisdom to heed the words of Franklin Roosevelt and recognize the vital role played by medical research in the economic and health security of our Nation.

I firmly believe that medical research is the key to eliminating disease, reducing human suffering, and reducing health care costs. Heart disease and cancer are the two leading causes of death among Americans and they constitute nearly one- fifth of America's health care bill. The cost of Alzheimer's disease, which devastates 4 million Americans, currently costs our Nation $100 billion every year, and those costs are going to increase dramatically as the baby boomers age.

So the economic cost of disease, not to mention the human costs, are truly staggering. Parkinson's disease afflicts nearly half a million Americans and it costs our Nation at least $6 billion a year. Nearly a quarter million Americans live with varying degrees of incapacity due to spinal cord injuries and we spend $10 billion annually merely to maintain them.

A half a million Americans suffer strokes every year, which cost more than $30 billion for medical treatment, for rehabilitation and long-term care as well as lost wages. Diabetes, which affects nearly 16 million Americans, costs our Nation between $90 billion and $140 billion annually. It is the leading cause of blindness, kidney disease, and limb amputations.

So how do we stop the economic and human costs of these diseases? The answer is research. When I met with the President in May 1996, he stated that the ratio of research to clinical results is greater in this country than anywhere else in the world. Money spent on research brings practical results that absolutely justify the investment. So let us just look at a couple of examples.

NIH-sponsored research has resulted in the identification of genetic mutations that cause osteoporosis, Lou Gehrig's disease, cystic fibrosis, and Huntington's disease. Effective treatment for acute lymphoblastic leukemia [ALL], has been developed, and today nearly 80 percent of children who are diagnosed with ALL are alive and disease-free after 5 years.

Because of research, the nature of medicine is changing. We are approaching disease at the cellular level. We are targeting problems earlier, more specifically, less intrusively, with greater success and fewer side effects. Advances in genetics will soon let us intervene in disease even before the symptoms appear.

Significant progress is being made in the battle against cancer, and as recently as 10 years ago AIDS was a virtual death sentence. Now, thanks to research, individuals with extremely low T-cell counts are often able to rebuild their immune systems because of new protocols developed at the NIH and NIH-funded laboratories. Scientists are now talking about the possibility of an AIDS vaccine, and just a few years ago that would have seemed like science fiction.

Now, in 1988 a great Swiss neuroscientist, Dr. Martin Schwab, discovered two proteins that inhibit growth in damaged mammalian spinal cords. That was a revolutionary finding. Until then it was believed that the cord's inability to regenerate was due to the absence of nerve growth factors. And 2 years later, in 1990, Schwab induced nerve regeneration in a rat spinal cord by blocking the inhibitory proteins with an antibody called IN-1, and with adequate funding he estimates that this antibody could be adapted for use in human beings within the next 1 to 2 years. That is how fast progress is moving.

Now, when we recall that 10 years ago a spinal cord injury was considered to be a hopeless condition, this progress is absolutely extraordinary. Similar progress is being made in the treatment of Parkinson's multiple sclerosis [MS], stroke, and other related diseases because research has led to a greater understanding of the complexities of the brain.

Now, we must not stop this progress because we are unwilling to commit enough money to get the job done. It is imperative that the public and, more importantly, our elected representatives, understand that research today is not speculative, it is not a waste of money. It is the only way to relieve suffering while helping to save the American economy at the same time.

Making this a reality demands an investment of real dollars, funds that just do not fit within the constraint of the budget amendment that was passed by Congress this week, which proposes in fact to reduce overall health spending by $100 million next year and by more than $2 billion over the next 5 years. That is why I support Senator Specter's and Harkin's proposal to establish a national fund for health research, to provide additional funds over and above the annual appropriations for the NIH.

This bill proposes to take 1 penny from each $1 paid in insurance premiums, and that would result in as much as a $6 billion increase a year for the NIH, which would be a 50- percent raise in the budget.

Now, some experts say that this bill will never pass because of the strength of the insurance lobby. Well, I think that recent experience has shown that even the most formidable lobbyists cannot derail legislation that has bipartisan and public support. Let us look at some examples. The NRA was not successful in repealing the ban on assault weapons and they are a very powerful lobby.

The American public watched in disbelief as a dozen tobacco company executives testified at a Senate hearing that nicotine is not addictive and they denied allegations that nicotine levels were being raised in cigarettes in order to increase addiction. Well, now we are witnessing the demise of the Marlboro Man and Joe Camel. There are lawsuits in virtually every State by individuals demanding punitive damages against the tobacco companies. And just this week thousands of Government workers petitioned the President to ban smoking in Government buildings. And I sincerely doubt that the tobacco lobby will be able to stop this initiative.

As you recall, the religious right, led by Pat Robertson, Pat Buchanan, the Christian Coalition, tried twice unsuccessfully, in 1992 and 1996, to hijack the Republican Party, and they failed in both attempts. Here again was a case where a supposedly powerful lobby did not succeed in promoting their agenda.

Now, I also know from personal experience as a lobbyist for the National Endowment for the Arts that, in spite of 5 years of arguing strenuously about the economic benefits of the arts in thousands of communities across the Nation and instead of mobilizing arts groups from around the country for Arts Advocacy Day, in spite of showing statistics that 61 percent of the American people believe more money should be spent on Federal spending on the arts, we watched in dismay as Congress turned a deaf ear and they reduced the NEA budget from $167 million a year to a hopelessly inadequate $99 million.

This has resulted in the loss of critical seed money to thousands of orchestras, dance companies, theaters, and museums. It is not only a serious setback to the quality of life in this country, but it is further proof that Congress can and does ignore a strong lobby with tremendous grassroots support when they so desire.

Now, I have spoken to executives at several insurance companies about this bill and I have been told that their profit margin is so small that the donation of 1 percent of income is an unreasonable hardship. Well, personally, I find this about as credible as the tobacco companies' claim that nicotine is not addictive. It is very hard to sympathize with insurance companies when you watch a mother in tears on a television program begging for a chair so her quadriplegic son can take a shower.

I know in my own case I have been denied coverage for any physical therapy below the level of my shoulders, in spite of the fact that leading researchers repeatedly stress the importance of cardiovascular conditioning and the prevention of osteoporosis and muscular atrophy in preparation for the functional recovery that spinal cord research will very likely achieve in the next few years.

I will give you another example. I am completely dependent on a ventilator to breathe. If this ventilator fails, I am in serious trouble. But my insurance company would not pay for a second ventilator. I had to pay for it, $3,000, out of my own pocket. I am lucky; I can afford that. Many, many people cannot. And yet this kind of essential need is routinely denied.

Now, getting back to this piece of legislation, the insurance companies see it as a tax, though my question is: Why is that unreasonable when the insurance companies are going to save so much money in the long run? Research will keep the American people healthier and that will result in fewer insurance claims.

We tax oil companies. We use the money to build and maintain highways. In New York State, if you win the lottery you pay a significant tax which goes to a State fund for education. Now, most States have sales taxes which are a major source of revenue for a wide variety of programs and services that benefit the public.

Why should not insurance companies be asked to help, be asked to help to solve the health care crisis in this country?

Now, because of advances to date we can save millions of lives. Our challenge for the future is not just improving the quality of life of those we save, but finding the cures to prevent that suffering in the first place. Our scientists are on the threshold of major breakthroughs in almost every disease or condition that now cause so much hardship for people across the country and around the world.

PREPARED STATEMENT

Thank you very much.
[The statement follows:]

Prepared Statement of Christopher Reeve

Fifty seven years ago, someone struck with a then incurable disease spoke these prophetic words: "We cannot be a strong nation unless we are a healthy nation. And so we must recruit not only men and women and materials but also knowledge and science in the service of national strength."

These are the words of President Franklin Roosevelt, taken from his address at the dedication of the National Institutes of Health in October 1940. It's remarkable that even as war was raging in Europe and as the United States stood on the brink of entering that conflict, President Roosevelt had the foresight to recognize the importance of our nation's investment in medical research to its national security.

The question today is whether our current President and the Congress have the vision and wisdom to heed the words of Franklin Roosevelt and recognize the vital role played by medical research in the economic and health security of our nation.

I firmly believe that medical research is key to eliminating disease, reducing human suffering, and reducing health care costs. Heart disease and cancer, the two leading causes of death among Americans, constitute nearly one-fifth of America's health care bill. The costs of Alzheimer's disease-- which devastates four million Americans and currently costs our nation $100 billion each year--are expected to increase dramatically as baby boomers age.

The economic costs of disease--not to mention the human costs--are truly staggering. Parkinson's disease afflicts nearly a half million Americans and costs our nation at least $6 billion a year.

Nearly a quarter million Americans live with varying degrees of incapacity due to spinal cord injuries. We spend $10 billion annually merely to maintain them.

A half million Americans suffer strokes each year, costing more than $30 billion for medical treatment, rehabilitation and long-term care, as well as lost wages.

Diabetes, which afflicts nearly 16 million Americans, costs our nation between $90 billion and $140 billion annually and is the leading cause of blindness, kidney disease and limb amputations.

How do we stop the economic and human cost of these diseases? Research.

When I met with the President in May of 1996, he stated that the ratio of research to clinical results is greater in this country than anywhere else in the world. Money spent on research brings practical results that absolutely justify the investment. Let's look at a few examples.

NIH-sponsored research has resulted in the identification of genetic mutations that cause osteoporosis, Lou Gehrig's Disease, cystic fibrosis and Huntington's disease. Effective treatment for Acute Lymphoblastic Leukemia (ALL) has been developed and today nearly 80 percent of children diagnosed with ALL are alive and disease-free after 5 years.

Because of research, the nature of medicine is changing. We are approaching disease at the cellular level. We are targeting problems earlier, more specifically, less intrusively, with greater success and fewer side effects. Advances in genetics will soon let us intervene in disease before symptoms appear.

Significant progress is being made in the battle against cancer. As recently as 10 years ago AIDS was a virtual death sentence. Now, thanks to research, individuals with extremely low T-cell counts are often able to rebuild their immune systems because of new protocols developed at the NIH and NIH funded laboratories. Scientists are now talking about the possibility of an AIDS vaccine. Just a few years ago that would have seemed like science fiction.

In 1988 Swiss neuroscientist Martin Schwab discovered two proteins that inhibit growth in damaged mammalian spinal cords, a revolutionary finding. Until then, it was believed that the cord's inability to regenerate was due to the absence of nerve growth factors. In 1990 Schwab induced nerve regeneration in the rat spinal cord by blocking the inhibitory proteins with an antibody called IN-1. With adequate funding, it is estimated that Schwab's antibody could be adapted for use in humans within the next 1-2 years.

When we recall that 10 years ago a spinal cord injury was considered to be a hopeless condition, this progress is truly extraordinary. Similar progress is being made in the treatment of Parkinson's, MS, Stroke and other related diseases because research has led to a greater understanding of the complexities of the brain.

We must not stop this progress because we are unwilling to commit enough money to get the job done. It is imperative that the public--and more importantly our elected representatives understand that research today is not speculative. It is not a waste of money. It is the only way to relieve suffering while helping to save the American economy at the same time.

Making this a reality demands an investment of real dollars--funds that just don't fit within the constraints of the Budget Agreement passed by Congress this week, which proposes to reduce overall health spending by $100 million next year and by more than $2 billion over the next 5 years.

That's why I support Senators Specter and Harkin's proposal to establish a National Fund for Health Research to provide additional funds over and above the annual appropriations for the National Institutes of Health. The Spector-Harkin bill proposes taking one penny from each dollar paid in insurance premiums, which would result in as much as a $6 billion increase a year for the NIH.

Some experts say that this bill will never pass because of the strength of the insurance lobby. However recent experience has shown that even the most formidable lobbyists cannot derail legislation that has bipartisan and public support.

The NRA was not successful in repealing the ban on assault weapons.

The American public watched in disbelief as a dozen tobacco company executives testified at a Senate hearing that nicotine is not addictive and denied allegations that nicotine levels were being raised in cigarettes in order to increase addiction. Now we are witnessing the demise of the "Marlboro Man" and "Joe Camel". There are lawsuits in virtually every state by individuals demanding punitive damages against the tobacco companies. Just this week, thousands of government workers petitioned the President to ban smoking in government buildings. I sincerely doubt that the tobacco lobby will be able to stop this initiative.

The religious right led by Pat Robertson, Pat Buchanan and the Christian Coalition tried twice unsuccessfully (in 1992 and 1996) to hijack the Republican Party and failed in both attempts. Here again, was a case when a supposedly powerful lobby did not succeed in promoting their agenda.

I also know from personal experience as a lobbyist for the National Endowment of the Arts, that in spite of five years of arguing strenuously about the economic benefits of the arts in thousands of communities across the nation, in spite of mobilizing arts groups from around the country annually for "Arts Advocacy Day", in spite of showing statistics that 61 percent of the American people believe more money should be spent on Federal funding for the arts; we watched in dismay as Congress turned a deaf ear and reduced the NEA budget from $167 million a year to a hopelessly inadequate $99 million. This has resulted in the loss of critical seed money to thousands of orchestras, dance companies, theaters and museums. It is not only a serious setback to the quality of life in this country, but further proof that Congress can and does ignore a strong lobby with tremendous grassroots support, when they so desire.

I have spoken to executives at several insurance companies about this bill and have been told that their profit margin is so small that the donation of 1 percent of their income is an unreasonable hardship. Personally, I find this about as credible as the tobacco companies claim that nicotine is not addictive. It its hard to sympathize with insurance companies when you watch a mother in tears begging for a chair so that her quadriplegic son can take a shower. In my own case I have been denied coverage for any physical therapy below the level of my shoulders in spite of the fact that leading researchers repeatedly stress the importance of cardiovascular conditioning and the prevention of osteoporosis and muscular atrophy in preparation for the functional recovery that spinal cord research will very likely achieve within the next few years.

The insurance companies see this legislation as a tax. My question is: why is that unreasonable, particularly when the insurance companies would save so much money in the long run. Research will keep the American people healthier, resulting in fewer insurance claims. We tax oil companies and use the money to build and maintain highways. In New York state, if you win the lottery, you pay a significant tax which goes to a state fund for education. Most states have sales taxes which are a major source of revenue for a wide variety of programs and services that benefit the public. Why shouldn't insurance companies be asked to help solve the health care crisis in this country?

Because of the advances to date, we can save millions of lives. Our challenge for the future is not just improving the quality of life of those we save, but finding the cures to prevent that suffering in the first place.

Our scientists are on the threshold of major breakthroughs in almost every disease or condition that now cause so much hardship for people across the country and around the world. The insurance companies owe it to our families and our society to make a small sacrifice which can do so much good. I hope that this excellent piece of legislation which already has tremendous grassroots support will be enacted during this legislative session.

Thank you very much.

PROGNOSIS FOR THE FUTURE

Mr. Reeve, we are delighted to see you progressing and doing so well. Could you give us a short summary of the progress which you have made up to date and what your doctors' prognosis is for the future, please?

Mr. Reeve: Well, the prognosis for the future is going to be very dependent, again, on how research progresses. But I in the last few months have achieved sensation all the way down the spinal cord. This is a very encouraging sign because it means that the injury is incomplete and it had previously been thought to be complete, and that is a very significant piece of news for me and for my family.

Senator Specter: You have made a reference to the nerve regeneration in rats, and it is your hope, expectation, that that can be duplicated in humans, that that could pose a cure for your paralysis?

Mr. Reeve: Yes; you see, the most encouraging thing is that not only did Dr. Schwab achieve regeneration in rats in his laboratory in Zurich, but Dr. Weiss Young at the NYU Medical Center in New York has achieved the same thing. So two scientists working in different parts of the world.

Senator Specter: Do you have a sense for how far away the science may be in the nerve regeneration in humans if there is adequate funding?

Mr. Reeve: With adequate funding, within 1 to 2 years, and that is absolutely staggering progress. Recently I watched a video of the rats in Dr. Young's laboratory, and they were placed in a fairly large dish----

Senator Specter: So with adequate funding you think that there could be regeneration of the nerves in humans which would solve your spinal cord injury and your paralysis?

Mr. Reeve: That would be the beginning of clinical trials in humans, and what would happen is that--you see, the antibody that works in rats has to be modified to work in a human model, and that will take another year or so in order to accomplish. We have to be careful that there are not excessive levels of toxicity and those kinds of things.

Senator Specter: On the best case scenario, how long do you think it might be where you could walk again and resume your Superman career?

Mr. Reeve: Well, let us walk before we fly. But I would say that with adequate funding, with bringing new people into the field, continuing their clinical trials that they are on the brink of doing now, that we are looking at probably 4 to 5 years I could be up on my feet again, and so could millions of Americans.

Senator Specter: Mr. Reeve, I ask that question because many people have followed your career. They watched you fly, they watched you fall, and they would like to see you walk again as a preliminary to flying again. And I ask you on the best case scenario because people will see what Christopher Reeve does and will say, I can do that too if the opportunity is present.

That is the great value of a role model, and it will also have an impact on our colleagues in the Congress to provide the kind of funding which would enable scientific research to enable you to walk first and then to fly. So that is why I ask you about the best case scenario, because your words will be heard by millions of people who have similar problems.

Mr. Reeve: The main thing to remember is that these breakthroughs that Dr. Young and Dr. Schwab and others have done is really defying millions of years of evolution, because evolution provided that the spinal cord could not regenerate and that was always the common wisdom, that the peripheral nerves can regenerate but not the nerves in the spinal cord. And the identification of this antibody, the identification of this protein, is an incredible breakthrough.

What can happen is, as the antibody is developed the protein will be effectively knocked out and then regeneration will occur. The question is now will the nerves know where to go. And the evidence seems to be that they have a sense of where they belong. So we are talking about building a relatively small bridge and then, provided you keep your body in shape, you should be able to regain significant functional recovery within a short period of time.

Senator Specter: Well, one more bridge for the future.

Mr. Reeve: That is right.

Senator Specter: One more bridge for the future, and if we can succeed on spinal cord injury and if Superman can fly again, that translates into hope for cancer victims, for those who suffer from heart ailments, for those who suffer from Alzheimer's, cystic fibrosis, hearing disability, and many other lines.

So we salute you for your good work and, Mr. Reeve, we thank you for being here, and we will work with you.
Senator Harkin.

Senator Harkin: Thank you very much, Mr. Chairman.
Again, Mr. Reeve, thank you very much again for a very eloquent statement, and thank you for speaking truth to power, as they say. The insurance companies need to hear this, and they are very powerful. The people that you are speaking to here are also very powerful and they need to hear that truth. The truth is, is that we are not investing in medical research.

I know it sounds like a lot of money when we say we are putting about $13 billion this year into medical research with NIH, but I always point out to my friends, my friends and foes alike, that in the last 5 years we have spent more on military research and development in 5 years than we have on all biomedical research since the turn of the century. We have smart missiles and we have smart bombs, and thank God they help defend our country. But it is research that got us here.

The Defense Department right now is spending about 15 percent of every $1 on research. In medicine we do not even spend 1 penny out of every $1 on research, and that is why I think it is criminal and that is why I appreciate what you are doing.

We have been on this for some time. There is broad-based support for the concept that Senator Specter and I are trying to get through. Almost every disease-related group in America, research institutions, the private sector, private corporations, but we cannot seem to get the breakthrough. I do not know if maybe we are not communicating it well.

If you have any thoughts on what message would resonate with Americans, how do we get the American public to help us in this effort. We have got to get that grassroots out there demanding this. And as you say, if they demand it, I do not care how powerful the insurance companies are, we will roll over them. But we have got to get the public to understand what we are talking about.

Quite frankly, I think I have failed in that regard. I just do not think I have been able to communicate that adequately to the public. If you have any advice for me, I am looking for it.

Mr. Reeve: In my opinion what makes the greatest difference is when the American people realize that these diseases and afflictions affect the entire American family, rather than just a small segment. If you take the case of AIDS, for example, back in the early eighties it was considered to be a disease that afflicted a very small segment of the population, and then gradually, when a young woman contracted the AIDS virus from a dentist, when children began to die of AIDS, when Rock Hudson and Elizabeth Glazer, public figures, when it began to resonate across the country that this is something that is robbing many, many Americans, then people take notice, and they said: Wait a minute, it is about us; it is not about them; it is about the entire American family.

And what is happening now is these diseases of the brain, which I call inner space--there is only one degree of separation. Any of us in this room can talk about a relative or a close friend who has one of these conditions. And as we live longer and as the baby boomers age, it is going to get worse and worse.

But the hopeful sign is that as people realize that people close to them are suffering, then they become more motivated to do something about it. People tend to respond when there is an emotional and psychological connection to a condition, and then they are willing to speak up and put pressure on Capitol Hill and put pressure on various companies and on the private sector to do something about it.

So what I would say is we have to remind people that it is not about others; it is about ourselves and the entire American family. That word is beginning to get out as people recognize that the suffering is so widespread and it is a huge human cost as well as a huge economic cost to the country. By reinforcing that message, I think you are going to get more of a demand for action, more of a demand for a response, and that will lead to more dollars being pointed in the right direction.

Senator Harkin: Well, I appreciate that. And again, I cannot tell you how much we are thankful for your help and your leadership in this area.

I might also add that your influence has extended widely throughout the country on this issue. As I mentioned in my opening statement, my nephew Kelly McQuaid has been quadriplegic, as I said, now for almost 20 years as a result of a tragic accident, as you had. In my last communication with him he wanted to know--I told him that you were going to be testifying here and he wanted to know if you had any new information, because he also knows that you have been leading this, and he wanted to know if you had any new information on breakthroughs.

What you have just said here about the new protein, I did not know about. If I could get some of that information from you, I would love to be able to send that on to my nephew.

Mr. Reeve: Absolutely.

Senator Harkin: Because he has been fighting for 20 years on this, and he has never given up. He has never given up hope, and you have given him new hope, and I appreciate that.

Mr. Reeve: On my left here is Susan Howley, who is the research director of the American Paralysis Association, and she can provide you with all of that information. What we are doing at the American Paralysis Association is bringing scientists together from all over the world and getting them to work together, and that is going to make all the difference.

Senator Harkin: Thank you again very much.

Senator Specter: Thank you, Senator Harkin.
Senator Craig.

Senator Craig: Mr. Chairman, thank you.
Christopher, your eloquence and your passion will advance the cause of research in neurological disorders, spinal cord injury, more than anything that can be done. And I say that because, while lobbyists and lobbies are a powerful force in this city, they are not as powerful as the American people when that body makes up its mind.

You referenced the National Endowment for the Arts and the decision on the part of Congress. That was, as you know, a hard-fought decision. I voted to cut funding and the reason I did was because public dollars are precious dollars and they were spending money in categories that were not generally believed to be acceptable by the public. When they decided they would change, I once again began to support it and I voted for the National Endowment last year again and the year before.

What I am suggesting is that when the public is well informed they can also cause the Congress to do things, and they felt they were informed. At least my public reacted, and then my public, once we had changed or the National Endowment agreed to change, my public accepted my vote again in support, because many of the communities in my State--as you reflected, communities across the country--were the beneficiaries of those kinds of dollars.

So I encourage you to continue and I am sure you will, because this particular illness or injury that a good many Americans experience now has a marvelous spokesperson. I do not believe it had that before, and that can go a great long ways in causing us to do and causing the public to react in ways that will cause us to move in the appropriate directions.

Thank you.

Senator Specter: Thank you very much, Senator Craig.
We are very appreciative of your appearance here, Mr. Reeve, and we will work with you, and we appreciate your helping us with the other Members of Congress and with the insurance industry.

Senator Harkin: Might I ask one followup question?

Senator Specter: Senator Harkin has one quick question.

Senator Harkin: One quick question. I do not want to put anyone on the spot, but I always believe in dealing openly and honestly with people. Were there any promises or overtures, promises, commitments, made to you by the President to increase funding for spinal cord research last year?

Mr. Reeve: Yes; when we met in May 1996 he told me that he would commit an additional $10 million in fiscal 1996-97 specifically for spinal cord research, and I spoke recently with Dr. Varmas at NIH and that money already is being spent.

Senator Harkin: An additional $10 million?

Mr. Reeve: An additional $10 million, above the $40 million which is normally spent. So that additional $10 million is being used now for additional grants and symposiums on spinal cord injury, but mostly on funding for more grants. What we really need to do is bring new graduates of our medical schools, new M.D.-Ph.D.'s, into the field, and the way we do it is by making enough money available so that the research can continue and they will want to be part of it.

Research is a tough life for someone who is coming out of medical school. They have got to repay their loans, they have got to make a living. But if we really show them that they can participate in breakthroughs of major proportions and that they will be able to make a living doing it, then we are going to have new intelligence, new talent, brought to the field, and that is what we really need to continue the progress.

So not only will this money fund existing scientists, but it will open the field to new researchers, and that will make a tremendous difference.

Senator Specter: Before we proceed to our next panel, we are going to take a 2-minute recess.

Thank you very much, Mr. Reeve.

Mr. Reeve: Thank you.
[A brief recess was taken.]