Nothing Is Impossible (8 page)
Read Nothing Is Impossible Online
Authors: Christopher Reeve
The scientist was Dr. Wise Young, who was both young (mid-thirties) and wise (a true pioneer in spinal cord research). In the early eighties he was instrumental in the development of methylprednisilone, a steroid that generally reduces inflammation at the site of injury by about 20 percent if it is administered within the first eight hours. In 1995 he led a team of researchers at New York University, but he was constantly distracted from his work by the pressing need to obtain more funding. At the time he was one of the few scientists who were absolutely convinced that the damaged spinal cord could be repaired. Arthur Ullian shared that conviction; the challenge was to convince the government, foundations, and investors in the private sector.
As we huddled together in a corner of the visitors’ room at Kessler, they drove home the point that they had gone as far as they could go. It would take the leadership of a public figure to raise awareness and make a difference in the lives of victims without a voice. I told them I would learn as much as I could about the history and the promise of research and do whatever I could to help.
But before I could take on greater issues, Dana and I had to cope with the realities of health insurance. Dr. Kirshblum and the Kessler administration decided with us that I would be discharged on December 13. Our insurance carrier accepted that decision but notified us that the company would only pay for forty-eight days of nursing care after I returned home. I was (and still am) dependent on a ventilator 24/7 and am unable to eat, wash, or go to the bathroom by myself. What did they expect us to do after forty-eight days? The company simply refused to answer the question; we were entitled to forty-eight days, period. We requested a backup ventilator for obvious safety reasons, but were denied. The case manager said that if my ventilator failed, Dana or another family member should use an ambu bag to keep me alive until a replacement vent arrived from a supplier in the town of Hawthorne, New York. (An ambu bag is a soft plastic balloon with a fitting that attaches to the patient’s trachea; someone has to squeeze it every five seconds to pump air into the lungs.) Hawthorne is a forty-five-minute drive from our home, and the manager of the medical store lives in another town about an hour away from there. He has the only set of keys and is the only one authorized to sign out equipment after hours. The worst-case scenario would be a vent failure at three
A.M
. with Will asleep
upstairs. Without a nurse on duty Dana would never be able to leave the house overnight, which would prevent her from going on business trips that provided much-needed income. She would have to wake up, figure out that the vent had failed, connect the ambu bag, and squeeze it with one hand while trying to reach the office manager on her cell phone with the other. If Will, whose bedroom was directly above our temporary quarters in the dining room, were to wake up and cry because of all the commotion, Dana couldn’t go up to comfort him. If anything else were to go wrong—such as an episode of dysreflexia, which can cause a heart attack or stroke if not treated immediately—we would be out of luck, because Dana couldn’t abandon the ambu bag. Considering all the necessary steps, Dana would have to keep me alive for at least three hours until I was hooked up and breathing on a new vent.
During negotiations with our insurance carrier we discovered the main reason patients are routinely denied even the essentials: only 30 percent fight back. Since 70 percent of their policyholders are easily intimidated, there is no upside for compliance. Moral responsibility does not drive the insurance industry. Threatened lawsuits are often necessary to get results.
We didn’t have to go that far. But it did take repeated “Letters of Need” from Dr. Kirshblum and the
Kessler administration, submitted and resubmitted for more than six weeks, before we were finally granted round-the-clock nursing care for the term of the policy. They never did pay for a backup vent. We bought one ourselves for $3,500 because we could afford it. (It turned out to be a more than worthwhile investment because the vent has failed a number of times over the years.) But what about others in a similar situation who simply don’t have that kind of money?
Since then we have developed an excellent working relationship and have not had to lock horns with our carrier. But the solution to the nursing problem only introduced us to another one: lifetime caps. Now we were receiving the benefits we needed, but my care was (and still is) very expensive. If all we had was our primary policy, at some point we would exhaust our coverage by reaching the lifetime cap of $1 million. After that we would be on our own. Fortunately I am a member of three unions—the American Federation of Television and Radio Artists, the Screen Actors Guild, and the Directors Guild of America—which meant that $3 million of coverage was available. Most people only belong to one union or have only one privately owned policy. In the event of a catastrophic illness or disability they will probably reach the cap in less than three years. After that they often have to sell their homes or use their retirement
savings to afford quality care. If the care requirements continue, the end of the line is placement in a nursing home. I think most nursing homes are merely human parking garages: patients are maintained but there is little or no physical therapy. The usual consequence, especially for younger individuals who end up there, is serious depression. I have not run through all three of my insurance policies—yet.
My first political activity as a patient advocate was an effort to raise lifetime caps. Vermont senator Jim Jeffords called in May 1997, asking me to support S.1114, the Lifetime Cap Discrimination Act. We held a press conference in June; then in July, seeking a cosponsor in the House, I wrote a letter that was copied and hand-delivered to all 436 members. It said, in part:
A million dollar policy purchased in 1970 is worth only about $100,000 today. It is ironic that a policy meant to give customers peace of mind is now being used to force them out of the private insurance market.… It is estimated that only about 10,000 people will exceed their lifetime cap in the next five years. Raising lifetime caps will cause an insignificant increase in premiums (small businesses are exempt under this legislation).… More than 150 organizations support this bill, which
would raise lifetime caps from $1 million to $10 million, to ensure that health insurance is there when people need it most.
The bill was defeated in the Senate, 56 to 42, probably because the majority was skeptical about the low cost of the higher premiums. Research by the sponsors had shown that the additional cost would fall somewhere between $9 and $19 annually for the average company of 250 workers. Perhaps a compromise could have been introduced that would have required employers and employees to split the cost. I’ve been assured a number of times that the issue will be revisited, but so far nothing has come of it.
Senators Arlen Specter (R-Pennsylvania) and Tom Harkin (D-Iowa), longtime advocates for medical research, rebounded quickly, taking a slightly different approach. They introduced S.441, the National Fund for Health Research Act. The bill proposed taking one penny from each dollar paid in insurance premiums, which would result in a nearly $6 billion increase for the National Institutes of Health. This time, I wrote to all one hundred senators:
I firmly believe that medical research is the key to eliminating disease, reducing human suffering,
and lowering health care costs.… 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 even 1% of their income is an unreasonable hardship. 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.… The insurance companies see this legislation as a tax. My question is: why is it unreasonable, particularly when they 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. 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?
The Harkin-Specter bill was also defeated, effectively ending the fund-raising aspect of insurance reform. Advocates for disease and disability groups
returned to the campaign to double the budget of the NIH. At the invitation of Morton Kondracke, executive editor of the congressional magazine
Roll Call
, I spoke at a press conference in March 1998:
What we’ve been doing is the equivalent of launching the space shuttle and then telling the astronauts, “Sorry, we didn’t have enough money to fill the tank.” That is the situation with the NIH today. Only 22 percent of all grant applications are being funded. There is a tremendous amount of good science that is falling by the wayside.
The next year I offered the following testimony before Congress regarding the president’s budget request for the NIH in fiscal year 2000:
Though our government operates on a budget that is decided annually, our scientists cannot. New scientific initiatives, experiments, and laboratories across the United States, once nurtured and financed, operate on two- and three- and four-year plans. We must not fund our scientists who have the potential to alleviate enormous suffering without giving them the assurance that we
will not put on the brakes and stop the flow of dollars that will make their progress possible.
… Without your support, spinal cord victims will continue to sit in wheelchairs, draining the resources of insurance companies as well as Medicaid, Medicare, VA hospitals, and nursing homes. With your continued support, it is very possible that within the next three to five years people who are now afflicted with a wide variety of disabilities will be able to overcome them. They will regain their rightful place in society, rejoin the workforce, and at last be relieved of the suffering they and their families have had to endure. The plea for adequate funding cannot be ignored.
In the spring of 2000, the need for increased government funding was raised exponentially by the promise of human embryonic stem cells, which have the capacity to become any cell type or tissue in the body. But researchers and patient advocates had to curb their enthusiasm in the face of strong opposition from political conservatives and religious groups. The issue became highly controversial as both sides debated the beginning of life and the morality of destroying embryos
in order to obtain stem cells for research. I wrote a short essay on the subject for
Time
in June 2000:
It is our responsibility to do everything possible to protect the quality of life of the present and future generations. A critical factor will be what we do with human embryonic stem cells.… They have been called “the body’s self-repair kit.”
… No obstacle should stand in the way of responsible investigation of their possibilities.… 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.… But why has the use of discarded embryos suddenly become such an issue? 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 we prolong the stem cell debate, millions continue to suffer. It is time to harness the power of government and go forward.
The ban on NIH funding of human ES cells, which went into effect almost immediately after they were first isolated at the University of Wisconsin in 1998, continued.
Before he left office, President Clinton issued guidelines that were embraced by the research community and patients alike: he would allow the NIH to fund stem cell research on excess embryos freely donated from IVF (in vitro fertilization) clinics. In May 2000, S.2015, the Stem Cell Research Act of 2000, was drafted for the Senate. Once again I wrote to every member:
Testimony from experts at NIH, letters of support from disease groups, universities, clinicians, and foundations as well as distinguished theologians have established beyond doubt that the ban on federal funding for this research must be lifted.
… If your young child or grandchild suddenly 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”?
The bill remained stalled in committee and Bill Clinton left office with the ban still in effect. One of George W. Bush’s first actions when he became president in January 2001 was to prohibit the adoption of the Clinton guidelines pending further review. All the
interested parties held their collective breath while our new president considered the issue. We watched televised coverage of his meeting with the pope, who made it clear that the destruction of a human embryo for
any
purpose violated “the sanctity of life.” The Catholic hierarchy across the country echoed the pope’s position on behalf of 61 million Catholic voters. Whether or not the leaders of other faiths were given equal consideration is not clear, but many people felt it was more than inappropriate for the president to consult with any religious group: it was an outright violation of the separation of church and state. Spokesmen for the administration said that the president was taking the time to meet with a wide variety of professionals and lay persons on both sides of the issue.
Finally, on August 9, 2001, the president announced his position in a nationally televised prime time address. He said that sixty-four stem cell lines, derived from excess embryos created in fertility clinics before nine
P.M
. that day, would be made available to researchers with funding from the NIH.
