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Reeve, Christopher

Christopher Reeve

The Christopher Reeve Paralysis Foundation

For perceptive, sustained, and heroic advocacy for medical research in general and victims of disability in particular.

This year’s Lasker Public Service Award honors an actor who has transformed personal tragedy into public service. With bravery and perseverance, Christopher Reeve has worked tirelessly to bolster support for medical research in general and victims of disability in particular. His knowledge of the science and personal heroism have allowed him to wield tremendous influence as an advocate. Instead of bowing to a sudden, life-altering injury, he mustered his internal resources and exploited his connections to advance research that targets spinal cord repair. Through his dogged quest for funding from both the private and public sectors, he has improved the prospects that scientists will devise innovative treatments not only for this condition, but for a wide range of illnesses such as Parkinson’s disease, Alzheimer’s disease, multiple sclerosis, amyotrophic lateral sclerosis (Lou Gehrig’s disease), and the consequences of stroke. Reeve has informed himself about the scientific as well as political aspects of his mission; this approach, along with his role as a public figure, have earned him unique status with researchers, lawmakers, and private citizens alike. Although he must endure the physical and emotional hardships of living in a body that is largely immobile, he is far from paralyzed.

In 1995, an equestrian accident paralyzed Reeve from the shoulders down. Unable to breathe without the help of a machine, Reeve confronted a new life. While grappling with his own situation and the grueling demands of an uncertain recovery process, he began to reach beyond his own self-interest. Even before he went home from the rehabilitation facility where he spent many months after the accident, he started plotting how he might make a difference for people with spinal cord injuries. He educated himself about the promise of various research strategies and mastered this material at a sophisticated level. His newfound knowledge nurtured the conviction that overcoming his seemingly hopeless medical situation is within reach, which has fueled his resolve to do everything within his power to convert that vision into a reality.

Within months of his injury, Reeve joined the Board of Directors of the American Paralysis Association (APA), and less than a year later became its chair. Earlier, spinal cord research had been a backwater because conventional wisdom deemed the condition incurable. However, by the early 1990s, scientists were challenging that dogma, accomplishing feats such as nerve regeneration in rat spinal cords. Reeve reasoned that the more time researchers were at the lab bench and the less time they were writing grant proposals, the quicker they’d develop treatments. The APA was already funding research aimed at finding a cure for paralysis. Reeve’s association with the organization made it much easier to raise money and put a face on spinal cord injury, thereby attracting proposals from investigators who weren’t previously interested in the problem. In 1996, Reeve and his wife, Dana, established the Christopher Reeve Foundation; in its first year of operation, it raised $750,000 for the APA as well as groups dedicated to quality of life issues that affect disabled people. In 1999, this foundation merged with APA, the name was changed to the Christopher Reeve Paralysis foundation (CRPF), and Reeve continued to serve as chairman of the board. CRPF funds research that paves the way toward treatments and cures for paralysis caused by spinal cord injury and other central nervous system disorders; the organization also allocates a portion of its resources to grants that improve the quality of life for people with disabilities. In 2003, the foundation expects to award almost $7.4 million in grants for neuroscience research and more than $620,000 in Quality of Life awards.

The combination of his personal commitment, star power, and desire and capacity to fully comprehend the complex political and scientific realities of medical research have collaborated to make Reeve a forceful advocate for scientific research. He has engaged scientists in frequent discussions so that he can understand the mechanisms that underlie potential cutting-edge treatments for problems that range from neurodegenerative disorders to diabetes to spinal cord injuries. As a result, Reeve has become conversant at a high level about, for example, stem cell technology, therapeutic cloning, and the molecular biology of nerve growth. His insistence on understanding the science reinforces his credibility with researchers and renders his arguments particularly compelling.

Reeve prods and persuades lawmakers and the public with novel and forceful arguments that rouse people to action. Comparing the quest for finding a way to repair the spinal cord with the previously daunting task of landing a man on the moon, he maintains that we have conquered formidable challenges before. At the 1996 Democratic National Convention, he said, “So many of our dreams at first seem impossible, then they seem improbable, and then, when we summon the will, they soon become inevitable. If we can conquer outer space, we should be able to conquer inner space, too — the frontier of the brain, the central nervous system, and all the afflictions of the body that destroy so many lives and rob our country of so much potential.” Furthermore, he pointed out that investing in research is cost effective: The government spends billions of dollars to maintain Americans with spinal cord injuries, and only a fraction of that on research that would improve the quality of their lives, get them off public assistance, and possibly cure them. In 1998, Reeve lobbied congress to double the National Institutes of Health budget in five years, contributing to the growth of the agency’s budget from $12 billion in 1998 to more than $27 billion in 2003.

As a testament to Reeve’s dedication to improving the lives of people with all types of paralysis, the House and Senate introduced the Christopher Reeve Paralysis Act to honor his 50th birthday on September 25, 2002. Congress is currently considering the legislation, which aims to promote research that could lead to spinal cord regeneration and to build programs nationwide that will advance self-sufficiency and opportunities for individuals with paralysis and other physical disabilities.

Reeve has also worked at the state level, providing crucial support, for example, for the passage of the New York State Spinal Cord Injury Research Bill, landmark legislation that funnels funds collected from violations of motor vehicle laws to research facilities in New York. He helped lobby for similar bills in New Jersey, Kentucky, Virginia, and California. The fact that Reeve never blamed his horse for the accident inspired a philanthropist and horsewoman, Joan Irvine Smith, to create a research center in his name at the University of California, Irvine, dedicated to finding a cure for paralysis. The center raised matching funds from individuals and foundations to triple Smith’s $1 million donation. It is already conducting research, supported by state, federal, and private funds, and has developed a state-of-the-art core facility in which any scientist with a novel idea can immediately undertake experiments in well-developed animal models.

Reeve has tackled some of the most emotionally charged issues with graceful and moving arguments. In an essay for Time and in testimony before a Senate Subcommittee in 2000, he wrote about human embryonic stem cells: “In fertility clinics, women are given a choice of what to do with unused fertilized embryos: they can be discarded, donated to research, or frozen for future use — is it more ethical for a woman to donate unused embryos that will never become human beings, or to let them be tossed away as so much garbage when they could help save thousands of lives?” While the Senate was debating whether to lift the ban on NIH funding of research on human embryonic stem cells, Reeve wrote to all of the senators: “If your young child or grandchild became paralyzed because of a spinal cord injury, or brain damaged in an accident, would you be able to look him or her in the eye and say that research on the best hope for recovery is, in the words of Senator Brownback, ‘illegal, immoral, and unnecessary?'”

Knowing that even the most promising research endeavors will take time to gel into therapies, he is also toiling to help disabled individuals lead more fulfilling, productive, and independent lives. In addition to setting up the CRPF quality-of-life grants program, for example, he and Dana helped establish a national information clearinghouse for all issues related to paralysis.

Reeve has mobilized movie stars as well as politicians to advance the cause. He has recruited celebrity friends such as Robin Williams and Paul Newman to engage in fundraising efforts and other projects aimed at educating the public about spinal cord injuries, and has called upon numerous Hollywood stars to help make the PBS Series “Freedom: A History of Us,” in which the actors contributed their fees to CRPF. Corporate and foundation sponsors matched these donations, and the enterprise raised $100,000 for the organization.

Reeve has juggled these advocacy activities with the rest of his life, pursuing a rigorous rehabilitation regimen, taking part in family life, continuing to act, and embarking on new adventures. In early 2001, he began combining his directing career (which began a year after his accident) with his activism when he directed four commercials featuring Ray Romano, Randy Newman, Toni Morrison, and himself for Johnson & Johnson that attempted to help parents communicate with their children: “Tell your kids not to be discouraged in the face of adversity,” he said. “Tell them that their bad days are just good days in disguise.” Reeve has invited the public into his heart and mind through his two books about his experiences, Still Me and Nothing Is Impossible, and by participating in a television special that chronicles his personal struggles as well as his public ones. After the accident, he had sensation in 12 percent of his body; he has since regained feeling in an additional 58 percent, an achievement that doctors deem remarkable. Furthermore, Reeve is exploiting neural activity very far below the level of his injury. For example, he can now push off from a pool wall like a swimmer starting the backstroke. Until recently, he could breathe without the ventilator for only 90 minutes at most. Earlier this year, he underwent surgery intended eventually to wean him from the machine completely. He can now survive off of it for six or seven hours at a time.

Under profoundly compromising circumstances, Christopher Reeve fashioned a new role for himself by grabbing opportunity and spearheading an entire movement. He has demonstrated great courage in a truly bleak situation, finding a way to exert tremendous power even though his body has lost much of its vigor. No longer able to leap tall buildings in a single bound, he continues to vault seemingly insurmountable obstacles from physical rehabilitation centers to congressional chambers — and has transformed himself from one type of Superman into another.

by Evelyn Strauss

Award presentation by Daniel Koshland, Jr.

Daniel Koshland presenting awardThe Lasker Foundation sponsors four types of awards: the Basic Medical Research Award, designed to reward those at the frontier, trying to wrest the secrets of disease away from a reluctant Nature; the next is the Clinical Medical Research Award, given to someone who has translated those secrets into a novel clinical advance; third is the Special Achievement Award, a lifetime achievement award for medical scientists.

The Lasker Public Service Award is for individuals who are supporting the infrastructure of science and medicine to make possible the great advances in medical care that we have seen in the last century. Joe Goldstein has just indicated to you the winners in 2003 of the first two types of awards.

It is my pleasure to announce to you that this year’s winner of the Public Service Award is Christopher Reeve — actor, activist, great advocate of research in medicine for the betterment of mankind. As you all know, Christopher Reeve was an actor with a promising career ahead of him, when in 1995 he had a horseback accident that paralyzed him from the shoulders down. What many of you don’t know — as I didn’t before my work on the Lasker Selection Committee — is that before his accident, Christopher Reeve was an activist in various causes such as Amnesty International, the Save the Children Campaign, and the National Resources Defense Council.

In 1977, he demonstrated in Santiago, Chile, on behalf of 77 actors threatened with execution by the Pinochet regime. After his accident — when most people would just be content to be alive — he renewed his activist role, not only to help others who are paralyzed like him, but also those afflicted with the broad spectrum of diseases encountered in the modern world. In this role, he distinguished himself by interviewing scientists in order to be a more effective advocate.

Both Senator Harkin and Congressman Porter, two giants in supporting health research bills in the US Congress, wrote to the Lasker Committee, saying how persuasive Christopher Reeve’s testimony had been in the US Congress in passing bills in support of the NIH. He also has formed with his wife, Dana, the Christopher Reeve Paralysis Foundation, and has a busy tour schedule to bring his message to many people. He is unafraid of taking unpopular positions, as evidenced by his recent advocacy of stem cell research.

For his intelligent and persuasive advocacy of research on medical issues, his great championing of the causes of the ill and disabled in addition to his great personal courage, the Lasker Foundation is honored to present Christopher Reeve with its 2003 Public Service Award.

Acceptance remarks

Thank you so much to the Lasker Foundation Jury. I must say it’s extremely overwhelming to be in the same room with so many brilliant minds. It is a tremendous honor to receive this award. But being recognized for public service on behalf of medical research only reinforces my belief that we must remove the obstacles that prevent medical research from truly serving the public. One hundred and twenty-eight million Americans suffer from presently incurable diseases. Fifty-four million Americans live with disabilities. That is an enormous and unacceptable percentage of the population.

We have many great scientists who want to serve the public, who want to see people get better. And yet we let political and religious influences interfere with public policy that would allow them to move forward. Why do we do this? In congressional hearings, patients, physicians, legal experts, researchers, theologians, and others have their say. But when the time comes to make decisions about public policy, there is an undue influence from politics and religion that is detrimental to patients. Other countries around the world have considered the same ethics of scientific research and reached conclusions that put patients first.

Let’s look at the case of Israel. Scientists there are governed by secular law, not religious doctrine. The Jewish faith holds that a person is a person three months after conception. But secular law says that people achieve that status only when they are born. In the debate about what to do with stem cells, secular law prevailed. As a result, scientists there are allowed to conduct research on stem cells derived from any source. There is strict government oversight, and regulatory bodies that govern the work. But because the secular choice was made instead of adopting a policy based on religious beliefs, Israel is now a world leader in advancing science that will benefit patients.

When I was there recently, I met a young man who had suffered a complete transection of his spinal cord due to a gunshot wound two years earlier. He had a procedure done at the Weizmann Institute, followed by two years of intense physical therapy which was paid for by the state. Today he is able to walk, even though he needs the support of parallel bars. If someone had told me in 1995 that an individual with that kind of injury would walk two years later, I would have said that it’s science fiction — simply impossible. Well, long ago I decided not to let the word impossible enter my vocabulary. That’s why I’m probably a scientist’s worst nightmare: I’m one who says, “Why can’t you do this? Why is it impossible?”

Perhaps it’s my job to offend some scientists. I’m not asking them to be reckless or unprofessional, but I do want to reinforce a sense of urgency. I was injured eight-and-a-half years ago, but even sitting here today I feel the same about my situation as I did on the day I fell off a horse and my life was saved by quick-thinking EMTs and a brilliant neurosurgeon. Scientists working on applied research (as opposed to theoretical research) must not be too timid or become insensitive to people who are suffering and want them to take reasonable risks. I believe I speak on behalf of patients who are willing to accept failure as a necessary aspect of moving science forward. We want researchers to think less like academics and more like EMTs, whose primary function is to save lives.

In that regard, Israel is a model for the world. There daily life is uncertain and dangerous. A sense of urgency permeates every level of society. While Israeli scientists are motivated by intellectual curiosity, when they make a discovery that can benefit patients they have the courage to apply it. Other countries around the world are following suit.

These countries have put the public interest first. The UK has created a stem cell bank and passed some of the most progressive laws in the world. Today UK researchers are ready to export purified human embryonic stem cell lines that can be used in therapy for patients around the world. Australia permits federal funding for embryonic stem cell research. China, Singapore, Sweden, and Switzerland are all part of a movement that is likely to leave the United States far behind. That has happened to us before. Now we must act quickly if we want to avoid repeating past mistakes.

In the mid-1970s federally funded research in the United States was paving the way for in vitro fertilization. But conservatives objected to ‘test-tube babies’ and funding was withdrawn pending the recommendation of an advisory commission. During this delay, baby Louise was born in an IVF clinic in the United Kingdom. The term that frightens conservatives today is “human cloning.” Because it’s difficult for the public to separate complex ideas, human cloning has come to symbolize both reproductive cloning, which should be banned, and therapeutic cloning, which should be encouraged and funded. As a result the federal government is gridlocked on the issue, and that is tying the hands of the scientists.

Public opinion polls show that nearly 70 percent of the American people are in favor of stem cell research in its entirety. The majority also believe that scientists can be held to the highest ethical standards without the involvement of religion. Regardless of what any of us think, the Constitution requires religion and matters of state to remain separate.

I find it ironic that during the campaign of 1960, John F. Kennedy had to defend himself against challengers who were wary of electing a Catholic president. Speaking before a gathering of Episcopalian clergy that summer, he emphatically stated that his religious beliefs would never interfere with the discharge of his responsibilities as President of the United States. Today we have a president who is openly proud of his religious beliefs and how they influence the decisions he makes in office.

It’s unfortunate. It doesn’t serve our scientists; it doesn’t serve the public; it needs to change. At this point the change will have to come from a grassroots movement. It’s been done before. In the 1980s the federal government did almost nothing to support AIDS research. A grassroots movement forced politicians to respond. Today the NIH spends $1.8 billion on AIDS research every year.

Because the government finally accepted the will of the people, our friends, neighbors and loved ones who would have died 20 years ago are living with HIV. But we can’t afford such a long delay again. Science, government, and the private sector must work together now. If we want to maintain our preeminence in medical research and earn the respect of our allies, who are no less moral than we are, we will have to combine curiosity, courage, and respect for the Constitution.

Again let me say what an honor it is to receive this award. I’m both surprised and extremely grateful. With all due respect to the distinguished scientists gathered here today, I promise — in the spirit of Albert and Mary Lasker — to accept it as encouragement to be even more annoying and difficult in the future. Thank you so much.

Interview with Christopher Reeve