I reminded the audience that in 1961 President Kennedy had issued the challenge to land a man on the moon before the end of the decade. At the time scientists thought the goal was impossible; no one had yet envisioned a vehicle that could make a successful landing on the moon and then take off again. Many considered Kennedy’s speech irresponsible because he had delivered it without consulting the experts. Yet the vision was so captivating, to both scientists and the American public, that it became a reality. It took the combined efforts of 400,000 workers at NASA and dozens of companies that made component parts, but in July 1969 Neil Armstrong took that giant step for mankind.
I reminded the audience of another extraordinary chapter in our history of missions to the moon. As the crippled Apollo 13 craft was returning to earth, dangerous levels of carbon dioxide were building up inside the command module, and the astronauts had less than thirty minutes to live. At mission control engineers who were used to doing everything by the book had to rely on their experience and ingenuity to solve the problem. As Eugene Kranz, the flight director, states in Ron Howard’s film Apollo 13: “Failure is not an option.” The challenge, in effect, was to fit a round peg into a square hole. They improvised a solution with cardboard and socks. Instructions were relayed to the spacecraft, and the astronauts survived.
I suggested that it was time to propose a similar challenge to medical science. This time the mission would be the conquest of inner space, the brain and central nervous system. I had no doubt that an all-out attack would produce dramatic results. To create a sense of urgency, and to give the quest a human face, I declared my intention to walk by my fiftieth birthday, only seven years away.
As I came offstage, I realized that I had just taken on a new responsibility. I would have to back up this speech with action. From my work with The Creative Coalition, I had access to Washington and friends like Senators Paul Simon, Jim Jeffords, Patrick Leahy, and John Kerry, who could help guide me. I even had a working relationship with President Clinton, having campaigned for him in 1992. I also knew it was important to reach out to the other side of the aisle, because any real progress would have to come from a bipartisan effort.
Everyone at APA was delighted with the evening. A few weeks later I was elected chairman of the board.
The mission of the American Paralysis Association is to find a cure. Nothing less. One of its goals is to speed up the pace of research by convincing some of the world’s leading investigators to work together. I learned that the APA funds scientists at the Miami Project to Cure Paralysis, Wise Young (now at Rutgers), Lars Olson in Sweden, and Martin Schwab in Zurich, as well as young researchers with innovative ideas who would probably not receive funding from the National Institutes of Health. This wide-reaching approach seemed sensible to me. Just as it took forty or fifty scientists working together to develop the polio vaccine, the hope for speedy progress in the search for a cure for paralysis lies in the pooling of scientific information and financial resources.
The Miami Project is a major center for research. Dr. Mary Bartlett Bunge, a cell biologist there, is working on the problem of getting an adequate amount of regeneration with enough length for fibers to reach their appropriate target. Bunge’s group has focused on Schwann cells in the peripheral nervous system because they produce and secrete elements essential for nerve growth. Schwann cells can be cultured, so if Schwann cell transplants work, researchers will be able to create millions of cells that can be transplanted to an injured area without immune rejection. Only 10 percent of the cells need to “catch” to achieve movement.
At the Weizmann Institute in Israel, Michal Schwartz has been working with compounds taken from fish brains. She came to visit me in Bedford not long after I got home from Kessler and has kept in touch. Her approach is to culture fish brain compounds and inject them into the injured site, bridging the gap across the scar tissue and making new connections.
In June 1996, just a few months after I’d returned home, a group of researchers working under Dr. Lars Olson at the Karolinska Institute in Stockholm succeeded for the first time in growing nerves across gaps in the spinal cords of rats. These cords had been completely severed, yet after a cell transplantation across a gap of about one-fifth of an inch, the rats started to flex their hind legs. A year after the surgery they could support their weight and move their legs.
This experiment received a great amount of publicity. It was regarded as a milestone because it showed that something that had been regarded as impossible is possible. But I was very skeptical about its viability in humans. The nerves that had been grafted onto the rats’ spinal cords were from the peripheral nervous system, which does regenerate, but they would probably be incompatible with the central nervous system in humans and thus unlikely to produce motor function. In addition, many of the rats did not survive the surgery. Also, they were originally injured at the thoracic level, where the spinal cord is relatively wide. An operation on a high-level injury in humans, where the spinal cord is very thin, would be extremely dangerous. And the rats in the experiment had their cords completely severed, which is almost never the case in an injury to humans. Building a bridge across a complete transection is a very different procedure from bridging a partial gap. It was hard to imagine that any neurosurgeon would be willing to completely sever a section of a human spinal cord in order to apply the Olson bridging technique. Even if the patient were to survive, I believe that would be a serious violation of the Hippocratic oath, which states, “First do no harm.”
That fall, Wise Young came to visit. He brought me up to date on the work in his laboratory, then dropped a bombshell: the next day he was going to Brazil to see six patients who, without Olson’s participation, had undergone the Olson procedure. A year earlier all six patients (who had suffered complete spinal cord injuries and/or transected cords) had peripheral nerves grafted into the sites of their lesions. But several weeks later Wise reported to me that there had been no recovery of function. The one improvement the patients experienced was decreased spasticity: their bodies no longer moved uncontrollably at unpredictable moments. I concluded that Lars Olson’s work was not yet suitable for humans, but that it was a promising example of a radical approach, the sort of bold step that is needed if you want to go to the moon or to cure paralysis.
A few years ago researchers knew only that it was essential to preserve as many nerves as possible in the early stages of an injury. They believed that whatever nerves were lost were lost permanently. Ramón y Cajal had even won the Nobel Prize back in 1906 for “proving” that nerves in the spinal cord cannot regenerate. When Paul Newman learned this, he said, “If that guy were still alive, we’d have to find him and take the prize back.”
Today, with scientists convinced that regeneration is imminent, preserving nerves is only one aspect of spinal cord research. I’ve learned that it now centers on three approaches: preserving the intact nerves; restoring function in the surviving ones; and the most exciting possibility—regenerating nerves in the spinal cord.
To preserve intact neurons, researchers have to catch them before they decay. Stroke research has shown that chemicals flood in to kill nerve cells after a trauma. This is known as apoptosis, or programmed cell death. To a spinal cord victim, this can seem like a cruel joke of nature: not only do you suffer the original injury but healthy cells near the site seem to commit suicide anywhere from a month to six weeks after the initial trauma. A drug has been developed to block this process in stroke victims, and others are on the way. This may have a crossover benefit for spinal cord patients. Dennis Choi at Washington University in St. Louis specializes in programmed cell death. He claims, “We have a good sense of the cascade that destroys nerves after impact, and there is a lot of commonality between the brain and the spinal cord in this respect. Many of the same approaches that work in the brain work in the spinal cord.”
In the second main area of research—getting damaged nerves to function again—researchers focus on restoring co
nnections that are intact after an injury but for some reason no longer work. Research with animals has shown that a lack of myelin, a fatty substance found on healthy nerve fibers that allows conductivity, is significant in the loss of muscle control. Multiple sclerosis is a disorder in which immune cells strip spinal cord nerves of their myelin sheath. Decades ago researchers working on MS began testing 4-AP (4-aminopyridine), a derivative of coal tar, to help MS patients gain as much use of their existing nerves as possible. The drug works by temporarily acting as a myelin coating, allowing impulses to travel through the nerves. Paralyzed animals given intravenous 4-AP have shown improved muscle reflexes. Many scientists believe that 4-AP holds real promise for the future.
But to me the best news is that new researchers are entering the field. Dr. Dan Jay, a professor of molecular biology at Harvard, wrote me in April 1997 to say that he had changed his career to focus exclusively on spinal cord research. Today he is working with several of the leading experts around the world and is about to publish an article about a significant breakthrough in remyelination.
It is the third approach, the regeneration of nerves, that excites researchers and patients the most. Nerve growth factor is now being used in the spinal cord to encourage the growth of new axons, which conduct electrical impulses from the brain. Spinal-cord-injured rats given intravenous NGF have regained connections between the spinal cord and the brain. And there are other potentially useful substances, such as fibroblast growth factor (FGF), which aids in the healing of wounds, and gangliosides, which may also protect and promote the growth of axons.
In 1995 Barbara Walters interviewed Wise Young as part of a profile on me. She asked him point blank if I would ever walk again. Wise replied that at first there is hope, but over time hope ebbs. Two years later, when he was interviewed for 48 Hours, he said that with adequate funding it might be possible for me to walk within five to seven years. In a front-page article about spinal cord research in the Chicago Tribune, he stated, “It might be easier than we had thought.” In his laboratory at NYU he had been working with an antibody called L-1. At a fund-raising dinner in Puerto Rico in May 1997, I showed footage of rats that had been treated with this drug in Wise’s laboratory after a complete transection of the spinal cord. One month later their hind legs had regained function. In fact, one rat was trying to climb out of the basin he was kept in. When the lights came up I turned to the audience and said, “Oh, to be a rat.”
By the end of the year, Wise had moved to Rutgers and made even more progress with L-l. Rating movement on a scale of 0 to 14, with 0 representing no ability to move and 14 full recovery of motor function, many of the rats achieved a score of 12.5. An untrained observer would not be able to detect any abnormality. He repeated the experiment twice to make sure of his data before publishing his findings in March 1998.
With my involvement in research and fund-raising, my life became busier than it had been before the accident. I had to balance my roles as husband, father, a professional who still wanted to work in films and theater, and an activist. I established the Christopher Reeve Foundation as another way of raising money for the APA and helping with quality-of-life issues for the disabled. I made speeches all over the country, hosted fund-raisers, and lobbied in Washington. I was gratified by the last line in a Newsweek article that chronicled the new direction my life was taking. After listing my plans and activities, the writer concluded, “We should all be so disabled.”
As I began to study the problem of how to raise more money for research, I realized we would have to tap the resources of the government as well as private donors. I learned that the budget for the National Institutes of Health is only a little more than $13 billion, which has to cover research into virtually every affliction affecting the American public, from Alzheimer’s and Parkinson’s to cancer in all its forms, as well as many others. I met a number of times with the director of the NIH, Dr. Harold Varmus, and learned of his ongoing battle with Congress for more funding. He explained that the government spends $90 billion per year in Medicaid and Medicare payments to Alzheimer’s patients without doing anything to cure them. $8.7 billion is spent annually merely to maintain spinal cord patients, often in VA hospitals or nursing homes.
The economics of the situation make little sense. It seems to me that the government is fulfilling a social obligation to people suffering from serious afflictions but adding significantly to the national debt while failing to improve the quality of their lives. Many families who care for a chronically ill or injured family member quickly reach the million-dollar limit on their health insurance. Then they must turn to Medicare and are usually forced to sell their homes and most of their possessions in order to qualify for it. The sad truth is that once patients are accepted into the Medicare program, they are generally relegated to nursing homes, where there is little or no therapy, and they live out their days in a kind of human parking garage. I heard of one twelve-year-old boy who suffered a spinal cord injury and was placed in a mental institution because there was no room for him at any other facility. Some patients are allowed to live at home, but with minimal care.
The fact that this occurs at a time when real progress is being made toward alleviating and curing these conditions is terrible. I once heard a scientist exclaim, “Give us $100 million and we can cure Parkinson’s.” If the budget of the NIH were doubled—raised from $13 to $26 billion—the pace of research would be greatly accelerated and therapies would come more quickly. By some estimates the government would soon save as much as $300 billion annually. Unfortunately, the 105th Congress was determined to balance the budget by the year 2002, even if that required drastic cuts in a variety of worthwhile programs. The mood on the hill, the mantra for many politicians, was “no more spending,” and it is hard for many of them to take the long view. Few could be convinced that current biomedical research is not speculative. On the contrary, it is the humanitarian and economic solution to the nation’s health care issues.
Research has traditionally been considered a luxury; you throw money at scientists, who may or may not come up with something useful. Many politicians want to know exactly what their money is buying. If you order a nuclear submarine, you know what you will get. Research seems too abstract. But today this is not the case: research is quite specific, and the progress is concrete and quantifiable. In the near future there will be a vaccine for diabetes. New drugs can arrest the nerve degeneration in MS. An AIDS vaccine may soon be possible because of the money spent on research. In 1984 the NIH spent zero dollars on AIDS. In 1996 they spent approximately $1.3 billion because it had become a national issue—not a disease that affects only a small segment of the population but one that takes the lives of the sons and daughters of middle America.
I became so involved in talking to scientists and plotting strategies to increase funding for research that I began to neglect my own rehabilitation. There were no longer physical therapists supervising my progress. I had to rely on self-discipline to stay healthy and keep my body from degenerating. Breathing on my own became a particularly sensitive issue. By January 1997 I was able to breathe off the vent for up to ninety minutes. I longed for independence from that machine on the back of my chair. I went to Kessler for a consultation with Dr. Kirshblum. The crucial question was whether or not my diaphragm was moving. I was injected with a special dye, and films were taken as I breathed on my own. These showed that, in fact, my diaphragm moves both voluntarily and involuntarily. In consultation with the leading expert in weaning patients off ventilators, Dr. Peter Peterson at the Craig Rehabilitation Center in Denver, we discussed what it would take for me to get off the vent completely.
The prognosis was not encouraging. Dr. Peterson said that I would have to spend ten to twelve months at their facility and have minimal contact with the outside world. He even recommended that I have no access to a telephone. I would have to get up in the morning and breathe until lunch, then breathe again all afternoon, and only be put back on the ventil
ator at night. He predicted my chance of success was about 30 percent; the difficulty would be in sufficiently ventilating my six-foot-four, 215-pound body. Some spinal cord patients with a C2 injury have successfully weaned off the ventilator, but all of them were much smaller than I am, and therefore had a much easier task.
On the one hand, breathing on my own would have been a huge breakthrough. Part of me longed to try it, in spite of the odds against success. On the other hand, it would have been extremely painful to be away from Will and Dana and not to see Matthew and Alexandra for that long; and I knew that if I spent a year in isolation trying to breathe, I wouldn’t be able to carry on with the fund-raising efforts for research. Momentum was building and I was concerned about what might happen if I suddenly disappeared for an extended period of time.
Shortly after returning to Bedford, I was contacted by Joan Irvine Smith, a horsewoman and a great philanthropist. She was touched by the fact that I hadn’t blamed my horse for the accident. She told me she was moved by my situation and wouldn’t rest until I walked. She has incredible energy, and is very influential politically, both in California and across the country. Anyone running for office wants to have Joan Irvine Smith on his side.
She decided to create a chair in my name at UC Irvine, dedicated to finding a cure for chronic spinal cord injuries. She put up a million dollars of her own money, which was matched by the state. Additional funds have been coming in from the private sector; the goal is $5 million. She has also created an incentive: a $50,000 prize given annually to the scientist who has done the most to further spinal cord research in the preceding year. In the fall of ’96 I presented the first award to Martin Schwab.
Still Me Page 14
