Nothing Is Impossible (14 page)

Although I am a registered Democrat, like many of my friends I vote for candidates based on the issues. Here in New York State I supported Democrats Hillary Clinton and Charles Schumer for the Senate, but voted for Republicans Rudy Giuliani and George Pataki for mayor and governor, respectively. When I joined other advocates in the early 1990s to save the National Endowment for the Arts, two of our most formidable opponents were Senators Arlen Specter (R-Pennsylvania) and Jesse Helms (R-North Carolina). Since 1997 I have worked closely with Senator Specter on health care reform, rights of the disabled, and increased funding for biomedical research. When the Senate voted on the Animal Welfare Act of 2002, Jesse Helms introduced an amendment excluding rats, mice, and birds from the protections afforded higher animals such as dogs and primates. If the Helms amendment had been defeated, researchers would have been required to conduct experiments on rats, mice, and birds under the same conditions as an operation on a human being. The expense involved would have put an end to much of the critical basic research currently under way across the country.
In my younger days I would never have imagined siding with Jesse Helms on
anything
. With time I’ve learned that the most effective way to change policy in Washington is to join forces with the most influential allies on a case-by-case basis.

Those examples of nonpolitical alliances are meant to give a context to the 2000 presidential election. I believe the outcome had a direct effect on the hope for a radical overhaul of the electoral process, the hope for an enlightened energy and environmental policy, and the hope for government support of the most advanced biomedical research.

Those of us who hoped for a fair debate leading to governmental approval of therapeutic cloning were extremely disturbed by a media opportunity that took place at the White House on April 10. The president urged the Senate to pass the Brownback bill, S.1899, which would ban all forms of cloning. He stated, “I believe all human cloning is wrong, and both forms of cloning ought to be banned, for the following reasons. First, anything other than a total ban on human cloning would be unethical. Research cloning would contradict the most fundamental principle of medical ethics, that no human life should be exploited or extinguished for the benefit of another.”

At the president’s side, in full dress uniform, was
former New York City police officer Stephen McDonald, still confined to a wheelchair sixteen years after suffering a gunshot wound that left him paralyzed from the shoulders down. Officer McDonald is a devout Catholic. When he was interviewed by the media after the president’s press conference, he said that his accident was “God’s will” and echoed the pope’s position on the sanctity of human life.

As I watched the event live on CNN I felt great sympathy for Stephen McDonald, who took the trouble to visit me with his family soon after I was admitted to Kessler. He had many helpful things to say about living with a high cervical injury. As an anxious father particularly concerned about our youngest, Will, I was delighted to meet his son Connor, who was not yet born when his father was paralyzed. We only met for a short time, but he seemed to be a perfectly normal nine-year-old and I could sense a special bond in spite of—or perhaps because of—Stephen’s disability. Patti McDonald, Stephen’s wife, was a great comfort to Dana; they talked many times about the issues facing the families and caregivers of people living with disabilities. That’s why it was painful for me to see him strategically placed next to the podium on television that day. I felt he was being used. Politicians do this sort of thing all the time.
Is there any elected official who hasn’t been photographed reading to small children? But the issue of therapeutic cloning was a current debate that stirred up emotions as well as ethical, moral, religious, and political concerns. I thought the president was unduly attempting to exert his influence, especially in light of the fact that the bioethics panel appointed to advise him had not yet issued its opinion. Once again, what happened to fair play?

I’m certain that I was only one among many who were greatly relieved to find an op-ed piece in
The New York Times
on April 25 by Michael Gazzaniga, Ph.D., director of the Center for Cognitive Neuroscience at Dartmouth College. A fellow of the American Association for the Advancement of Science and the American Neurological Association, he is also one of the distinguished members of the president’s advisory panel. He wrote:

The temperature of the debate rose dramatically in May 2002. Proponents on both sides of the Brownback bill ran television ads in Utah, North Dakota, Georgia, and Washington, D.C., trying to win swing votes and threaten senators who were up for reelection. Supporters of S.1899 such as the Family Research Council tried to convince the public that therapeutic cloning means “killing babies” and the creation of “embryo farms.” Opponents explained somatic cell nuclear transfer and pleaded with the Senate, “Don’t legislate away hope.”

A poll taken by the highly respected firm Caravan Inc. showed that 68 percent of the American public was in favor of therapeutic cloning, 28 percent were opposed, and 4 percent had no opinion. Opponents of the research who objected because of deeply held religious or ethical convictions, who were absolutely true to their beliefs (like Stephen McDonald), I felt had to be respected. Much more troublesome were senators like Bill Frist (R-Tennessee), and of course Senator Brownback, who seemed to lack a consistent point of view.

In testimony before a Senate subcommittee, Senator
Brownback stated that he was in favor of in vitro fertility clinics and added, “Many of my friends have had fine children that way.” Senator Harkin pointed out that during the process of creating a viable embryo for a couple that could be successfully implanted in the woman’s uterus, an average of eight to ten fertilized but now unwanted embryos are routinely discarded as medical waste. Brownback replied, “I understand the majority of them are put up for adoption. But let’s return to the question of cloning.”

According to the 1999 Centers for Disease Control report “Assisted Reproductive Technology Success Rates,” 250 babies were born to couples using five IVF clinics in Kansas that year. An estimated 6,000 eggs were retrieved and approximately 70 percent of those were successfully fertilized and developed, creating some 4,000 embryos. Consistent with the average statistics in 400 IVF clinics across the country, a third of the embryos in the Kansas clinics didn’t develop enough to be useful; a third were frozen for the possible creation of a sibling; the remaining third were thrown away with the informed consent of the donors. According to Sean Tipton, director of public affairs for the American Society for Reproductive Medicine, only one of the five clinics in Kansas offers an embryo adoption program. In addition, he estimates that in the twenty-one-year history of
in vitro fertilization in the United States, less than 100 families have had children through embryo donation.

If Senator Brownback doesn’t know the facts, even in his own state, is he qualified to propose legislation on the issue? If he is aware that
any
leftover embryos are legally being destroyed in Kansas, how does he condone that in light of his fervent opposition to the use of an unfertilized clump of cells for therapeutic cloning? In an interview with Charlie Rose on PBS he defined that less-than-five-day-old cluster of cells as “an individual.” Then he suggested to Dr. Harold Varmus, former director of the NIH, who was also on the program, “Why don’t you experiment on me instead?” Dr. Varmus had the courtesy not to press him on that point. I would not have hesitated to ask him how that would work. Is he suffering from a disease that might be cured by therapeutic cloning? Would he be willing to have his own DNA extracted from a piece of his skin, then transferred into an unfertilized egg in order to harvest stem cells that could be used to cure him?

Senator Frist made statements that were equally puzzling to me and perhaps to thousands of others who know that, as he is the only doctor in the Senate, many of his colleagues looked to him for guidance on the issue. When we entered into a discussion on the record following my testimony on March 5, he said that he
fully supported embryonic stem cell research. But after I left the room he stated that it was “irresponsible” for me to link human stem cells with therapeutic cloning, adding that he was adamantly opposed to all forms of human cloning. However, an overwhelming number of researchers and clinicians in the United States and around the world have published articles and gone on record urging therapeutic cloning to go forward. They say it might turn out to be the safest method to cure patients because it minimizes the chances of the immune system’s rejection of stem cells. As a doctor Senator Frist is bound by medical ethics to prescribe the best treatment for his patients. By supporting the Brownback bill, which would not only ban therapeutic cloning but criminalize it, many disease advocates, myself included, felt that Senator Frist was making the wrong decision both as a doctor and as a senator. When it was revealed in May 2002 that he was on the short list to replace Vice President Cheney in Bush’s bid for reelection, more light was shed on his opposition to therapeutic cloning.

AND THEN I TURNED FIFTY. THAT’S AN IMPORTANT MILESTONE
in anyone’s life. Unfortunately it carried added significance for me, because I stated seven years earlier that I hoped to stand on that occasion and toast everyone
who had made it possible for me to do so. I spent that evening at a festive occasion surrounded by family and friends, in good health but still seated in a wheelchair. In the weeks and months leading up to my birthday many people wanted to know what happened. Was I misinformed, naïve, or just plain ignorant when I made that statement in 1995? Some scientists offered the opinion that if the NIH had been allowed to encourage and adequately fund embryonic stem cell research immediately after those cells were first isolated in 1998 I might have made it. The cures that millions want so desperately for so many diseases might have been achieved.

I can honestly say that there is no point in becoming obsessed by what could have, should have, or might have been. My intention was to create a commotion, to provoke a reaction from scientists, politicians, and the media by proposing a difficult but not necessarily impossible challenge. I remember asking Dr. Wise Young not to give me too many details about regenerative medicine and the enormous complexities of spinal cord repair; I was willing to be the fool on the hill, even though I had promised to learn enough about the science to establish credibility. President Roosevelt, ill and disabled himself, envisioned a healthier, stronger nation and created the National Institutes of Health. Then he
challenged scientists to conquer polio, and the first vaccine was developed in less than nine years. President Kennedy challenged the nation to land a man on the moon in less than a decade before the technology was even on the drawing boards. Four hundred thousand Americans in both the public and private sector worked together against the clock and made it possible for Neil Armstrong to take that giant leap for mankind in 1969. Certainly I was naïve, but I didn’t see anything wrong with emulating two of the greatest leaders of the twentieth century.

All over the world there are scientists, doctors, therapists, politicians, pharmaceuticals, biotechs, foundations, universities, health care providers, and untold others doing their utmost, even devoting their entire lives to the relief of human suffering. What I didn’t expect was that in this country, home of “Truth, Justice and the American way,” hope would be determined by politics. When I learned that human trials for spinal cord regeneration were delayed for two years by a small pharmaceutical company that claimed partial ownership of a scientist’s newly developed technology, I was outraged to witness further proof that “success has a thousand fathers, while failure is an orphan.” I had always assumed that hope was based on the advancement
of scientific knowledge and the funding to realize its potential.

Moral and ethical questions have always attended the birth of new ideas and new technologies. Litigation of patents and the ownership of intellectual property is a more frightening obstacle. As therapies emerge and make their way into the marketplace, the pie will be very large and everyone will want a piece of it. If we don’t resolve those political and economic issues soon, progress may reach an impasse, giving an inverse meaning to the concept that nothing is impossible.