Wednesday, September 23, 2009

"I Feel Like I've Lied to a Lot of People"

It was only a few years ago that the wheelchair-bound Christopher Reeve made impassioned pleas about expanding government funding for embryonic-stem-cell research, arguing that patients like him could benefit quickly from scientists' work. But then-president George W. Bush refused to allow government funding of any research that would destroy more human embryos. Reeve died in 2004 from cardiac arrest brought on by a bedsore, a common problem for paralyzed people. And stem-cell research, while still promising, hasn't managed to make Brown and others walk again. And that has left many of the 1,275,000 Americans with spinal-cord injuries rethinking exactly what they might realistically expect in the way of a "cure."

Not that the hope of finding a cure is no longer highly appealing. It's just that the definition of "cure" has radically changed, especially among those who have been injured for more than a few years. After all, if Reeve—who swore that one day he would walk again and had millions of dollars at his disposal—was unable to do so, why would anyone else?

So in the summer of 2008, the Christopher and Dana Reeve Foundation changed its slogan from "Go Forward" to "Today's Care. Tomorrow's Cure." "When we first started, our entire focus was to find a cure, to get people walking again," says Reeve Foundation president and CEO Peter Wilderhotter. "As we came to realize that since no injury is completely alike and given the complexity of the spinal cord—there will be no 'magic bullet.' " It is an argument that has raged in many disease-advocacy quarters over the years: when resources are limited, how much should you focus on making daily life better, and how much should you devote to the moonshot?

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