Still Me (45 page)

Another opponent of the NEA said, Why don't all of you who make tremendous amounts of money in Hollywood get together and fund the arts? Let's think who the top moneymakers are in Hollywood—that would be Sylvester Stallone, Arnold Schwarzenegger, Jean-Claude Van Damme . . . What a wonderful peer-review panel. How would you like to be the artistic director of the Alaska Repertory Company and come before that panel to ask for funding for a season? It's ludicrous.

The point is that in the thirty-year history of the NEA, hundreds of thousands of grants have been given out. It has created arts education in schools. It's brought art, music, dance, and drama to underserved areas, and in all that time there may have been some twenty controversies, twenty or thirty. And yet the NEA is an easy political football.

Back in 1990 there was indignation over Mapplethorpe and Serrano. Now that's past, and instead, the opponents are vitiating the National Endowment for the Arts by just taking away the money. A few years ago $167 million was spent on the arts. That's a mere pittance; it comes out to sixty-four cents per person. In Sweden they spend three dollars per person on the arts. And think of the rich diversity of culture they have. Now the budget is down to about $98 million. So rather than object to content, they just take away the funding. That has to change. We have to fight.

The point I want to make to you, the graduating class, is that the institutions may be against you. As you go out in the world as artists, these institutions, politicians, the corporate world, the people who make policy about what art should be presented and what should not, they may give you a very hard time, much harder than the time you had developing as artists in this place. But never forget that even if an institution is against you, the people are for you. Because the people in this country want the arts. In a recent survey 61 percent of the American public felt more money should be spent on the arts, and in fact over the last twenty years more people have gone to art galleries, to museums, symphonies, opera, dance, and theater than to all sporting events combined.

And so you may not immediately find a chair in the symphony orchestra, or be hired by a great dance company, or find a home in a wonderful repertory theater, because times are tough and money is scarce. But don't lose hope. Don't give it up, don't sell out. Don't let them take your integrity. You are artists, and that is one of the highest and most noble callings that you could possibly attempt in this country today. Stick with it. My hat is off to you. You have achieved something wonderful. Never let go of that vision. We need you. Congratulations. And thank you very much.

TESTIMONY BEFORE THE SENATE APPROPRIATIONS SUBCOMMITTEE: LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION APPROPRIATIONS

June 5, 1997

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 4 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 five 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 ten years ago AIDS was a virtual death sentence. Now 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 the 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 one to two years.

When we recall that ten years ago a spinal cord injury was considered 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 important 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 five 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 Specter-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 for 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 grass-roots 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 is 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 causes 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 grass-roots support, will be enacted during this legislative session.

Thank you very much.

SPEECH AT THE NATIONAL ORGANIZATION ON DISABILITY CORPORATE CITIZENSHIP AWARD LUNCHEON

October 8, 1997

Thank you very, very much for that introduction. Again, I want to thank JCPenney and their ad agency for giving me my first job all those years ago. It was kind of a shock. I had never been on camera before. I had been a theater actor, and I got pinned into my dress shirt. They tuck it in at the back so there are no wrinkles. I got out on the floor, and the first thing I heard over the loudspeaker from the director was, “Makeup, can you do something with his face? It's so bland.” It took me a while, but I bounced back from that little setback.

One thing I want to communicate to you is that I've now spent three birthdays in a wheelchair. At forty-two, I thought the best in life was still ahead of me, and I gave interviews saying that I felt wonderful opportunities were coming my way, both on-screen and off—in my personal life. Everything seemed to be rosier than ever before. One of the last movies I did before I was injured was called
Above Suspicion
, in which I played a paraplegic. I went to a rehab center in Van Nuys, California, to do research on what it would be like to be a paraplegic. I learned how to transfer in and out of a car. I learned how to transfer in and out of bed and onto a rehab mat. And I spent time with a young woman who had been injured in the earthquake in California. A bookcase had fallen on her head, and she was in a halo. She was just learning how to walk. I remember I went about every other day for two weeks to do this research. Every time I would leave and get in my car and drive back to my comfortable hotel, I would thank God that that was not me. Eight months later I had the accident and joined the disability population.