Christopher Reeve’s recent death hit me harder than most. I have a spinal-cord injury, having been rendered paraplegic by a car accident seven years ago. Like Mr. Reeve, I have single-mindedly devoted myself ever since to exploring roads to a cure. His death brought home to me how fragile life is for people in our condition, and how much more likely it is for us to die young than to leave our wheelchairs.
His death also hits hard because I met him personally in 2002. I felt then that no one should have to suffer as he did. Seeing him made me appreciate my continued use of my hands and arms, as well as his courage in facing a disability worse than my own.
All of which only makes more poignant the disagreement I had then, and still have, with Mr. Reeve’s focus on embryonic-stem-cell research and cloning. For even in May 2002, when I debated him at a forum sponsored by the New York Academy of Sciences, I had become convinced that this fixation would likely delay the advent of a cure for our condition rather than hasten its arrival.
In this and other public forums, Mr. Reeve made one demonstrably false statement after another about stem-cell research–statements that were taken as true by many, and thus diverted precious attention and resources away from avenues offering better reasons for hope. Ironically, in recent months he showed signs of realizing he may have placed too much hope in embryonic stem cells. But that misgiving was ignored by the politicized campaign for this research, which has increasingly become an end in itself.
When he first testified before Congress on stem-cell research, on April 26, 2000, Mr. Reeve said that only embryonic stem cells could produce “true biological miracles,” because adult stem cells “are no longer pluripotent, or capable of transforming into other cell types.” Many studies contradicted this claim at the time, and dozens more have appeared since. In fact, a few weeks after his testimony, a study funded by his own Christopher Reeve Paralysis Foundation was published in The Journal of Neuroscience Research, beginning with the sentence: “Pluripotent stem cells have been detected in multiple tissues in the adult, participating in normal replacement and repair while undergoing self-renewal.” The authors cited eleven other studies showing the same thing. They proceeded to show why adult bone-marrow stem cells “may constitute an abundant and accessible cellular reservoir for the treatment of a variety of neurologic diseases.”
This study funded by Reeve’s foundation had been submitted to the journal in March, almost a month before he testified. I asked myself then: How could Mr. Reeve’s own scientists not have known that the testimony they prepared for him was false?
Returning to Congress on March 5, 2002, Mr. Reeve repeated his call for embryonic-stem-cell research, but added that success would require cloning human embryos for research. This time he insisted that patients like himself need “remyelination” (restoring the fatty insulation that surrounds and protects nerve fibers), and this could only be done by embryonic stem cells. Further, he said, implanting such embryonic cells would not be safe “unless they contain the patient’s own DNA,” requiring the production of cloned embryos. Again, all this was just plain false. By 2002 the capacity to remyelinate spinal cords had been discovered in bone-marrow cells, olfactory-ensheathing cells from the nasal cavity, adult neural progenitor cells, oligodendroglial progenitors from the adult brain, and adult Schwann cells. Each of these could be obtained from the patient’s own body. As one of the studies indicated, “such transplantation would therefore be autologous and obviate the need for immunosuppression.”
And as Scottish cloning expert Ian Wilmut noted this February in The British Medical Journal, it now seems cloning is unnecessary for treating spinal injury, because the central nervous system is “immune privileged”–it does not reject genetically dissimilar cells the way most body systems do.
At our May 2002 debate in New York, Mr. Reeve declared that “therapeutic cloning” would probably be “the best possible treatment” for Parkinson’s, Alzheimer’s, brain injury, and spinal cord injury. He was unaware that cloning would turn out to be largely irrelevant to such neurological conditions. Nor did he know what Ron Reagan has now learned–that embryonic stem cells are extremely unlikely to provide a treatment for Alzheimer’s.
Finally, Mr. Reeve’s 2002 testimony warned that “our country is about to lose its preeminence in science and medicine” to nations pursuing cloning research, which are “no less moral than we are.” As an example he cited human trials in Israel using adult “macrophages” (scavenger cells from the bloodstream) to help the spinal cord regenerate “within two weeks of injury.” He said, correctly, that a young American woman from Colorado had already benefited from this approach. But somehow he had acquired the false impression that this treatment involved embryonic stem cells and cloning.
At our debate in New York, as well, people surrounding Mr. Reeve seemed worried that he might hear about recent progress in non-embryonic cell therapies. When I mentioned clinical trials using adult stem cells to treat spinal-cord injury in Europe, Mr. Reeve denied that they existed, saying that if they did “I would know of it.” Our moderator, the head of a biotechnology company, said I could tell Mr. Reeve more about these trials after the formal debate–but when I later tried to do so, the moderator put his hand over my mouth while Mr. Reeve’s attendants wheeled him away.
Many Americans with spinal-cord injury now know that one of the most promising new techniques for restoring sensation and movement is being conducted in Portugal by Dr. Carlos Lima. The centerpiece of his protocol is a surgical technique using stem cells and other tissue from patients’ own nasal mucosa. Among the first patients treated with this technique are two young American women, Laura Dominguez and Susan Fajt, whose dramatic progress has been featured on the PBS-TV series Innovation and at a July 2004 Senate hearing. Laura, rendered quadriplegic by an auto accident in 2001, has regained much of her upper-body movement and has begun to move her feet and walk with braces.
Embryonic stem cells have produced nothing like this–in fact, their tendency toward uncontrollable growth and tumor formation has so far made them unfit for any trials in humans. Even in animal trials they have not been able to treat long-lasting or chronic injury.
Near the end of his too-short life, Mr. Reeve apparently began to realize that embryonic stem cells were not the magic bullet he had assumed them to be. In one of his last interviews, appearing in the October 2004 issue of Reader’s Digest, he said that embryonic-stem-cell research should still be pursued because “scientists should be free to pursue every possible avenue. It appears though, at the moment, that embryonic stem cells are effective in treating acute injuries and are not able to do much about chronic injuries.” Far from claiming that this avenue offered “biological miracles,” or was the best or only hope for patients like him, he now felt they were “not able to do much” for him.
When I heard about Mr. Reeve’s death, I came close to crying. I was sad for him and his family, I admit, sad for myself, because his courage and determination were channeled for so long in the wrong direction. But when I hear ignorant political candidates declare that their election will get “people like Christopher Reeve” out of their wheelchairs and walking again, my sadness turns to outrage.
–James Kelly is a patient advocate for research leading to cures for spinal-cord injury. He lives with his wife in Manitou Springs, Colorado.