Spinal-cord-injury activist redefines "cured"

From Newsweek:

Ever since 1988, wheelchairs have figured into Alan T. Brown's dreams. That was the year his neck was crushed by an ocean wave at a Club Med in Martinique. He was 20 years old, young and single and free, and in one second went from a vibrant college student to a quadriplegic, with no movement below his chest. The dreams began almost instantly, usually with the wheelchair off to one side, Brown (pictured) standing nearby. "In the beginning, I was convinced I would walk again—1,000 percent," says Brown, now 42, who runs his own public-relations company in Hollywood, Fla. "My old mottos were 'There's light at the end of the tunnel' and 'Never say never.' I did think there was going to be a cure."

His dreams have changed over the past 22 years. Oh, wheelchairs still loom, but for the most part, Brown is sitting in them. It's not that he's completely abandoned the hope of ever walking again; it's just that after two decades in a seated position, he's got other issues to reckon with. He has had six major surgeries since his injury. His hemoglobin dropped from 15 to seven, and he began passing out regularly. "I'm in pain 24/7—I feel like my body's on fire," says Brown, who suffered 17 urinary-tract infections last year and a bout with a drug-resistant staph infection. "I've had so many surgeries—you have to pick your battles. How you live your life now, what you do to keep yourself going—that counts more than walking."

His attitude has changed so much, in fact, that this year he and his mother, Fran, overhauled the mission statement of the Alan T Brown Foundation to Cure Paralysis, the nonprofit the family created shortly after Brown's injury. Initially, its goal was to financially support scientific and medical research worldwide with a focus on finding a cure as quickly as possible. And while it is still fundraising today, it has turned away from the hope of an immediate cure.

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?

Brown realized he had to focus his own attention on combating day-to-day challenges, and not on some far-off glimmer of hope. One major battle: fighting with insurance companies, which suddenly refused to cover his nursing expenses. Although he has two insurance policies, only 10 nursing visits are allowed per year. "That's one week," he says, enraged. (His annual out-of-pocket expenses hover around $200,000.) He was tired of having his life, and the lives of his injured friends, thrown around like a "political football." Five years ago, he sued his insurance company after being told that the nurse who came to help him with his bowels and bladder would no longer be covered under his policy. Nor would the insurer pay for his physical therapy. He heard dispiriting stories of insurance companies telling patients to reuse catheters rather than pay for new ones; he knew people who were falling into financial distress because they could no longer afford to pay bills for their routine medical care, which could run as high as $250,000 a year. He says he has been fielding 50 percent more calls over the past year, compared with years past, from patients who have no idea where to turn financially, medically, and emotionally. Walking, right now, is not their top priority.

Brown is lucky enough to have some savings. But according to a study conducted by the Reeve Foundation, about a quarter of U.S. households living with some kind of paralysis have an annual household income of about $10,000 a year, on par with 7 percent of the U.S. population. With that in mind, the Reeve Foundation plans to push for health-policy changes, including ending a federal requirement mandating that disabled people wait two years before their Medicare coverage takes effect. They are also targeting insurance policies that refuse to pay for $400 wheelchair seat cushions that could prevent pressure sores. "Simply put, we need to raise and target as much as we can to find the best minds to find cures as quickly as possible," says Wilderhotter. "But if the object of our affection and attention is not those living with paralysis and their families and caregivers, then we are doing no good."

These difficulties actually arise from some good news: people with spinal-cord injuries are living longer than they were initially expected to. But that also means they are experiencing long-term infections and diseases (like the drug-resistant staph infection known as MRSA, or the skin infection cellulitis, for example) that come from being sedentary for so long. When Brown was first injured, for example, he was expected to live until 53. But he fully expects to live longer than that. He is certainly active: sky diving, scuba diving, completing two New York marathons (in his wheelchair). He goes to the gym five days a week, lifts weights three days a week, and swims up to a mile and a half every other day. "My upper body is strong as hell," he says. But as part of the first generation of people living with long-term spinal-cord injuries, Brown is a pioneer. And because no two injuries are alike, he says, "there's no road map for us. There's nothing to tell us how to eat or sleep."

Brown's tenure as a survivor has clearly shaped his changing views. "The longer you live with an injury, the more realistic you become about things in life," says Brown, a catch in his voice. "I used to say to newly injured patients that 'I'm from the Alan T Brown Foundation to Cure Paralysis and there's going to be a cure someday and we'll all be fine and laugh about this.' And then they I see them 15 years later and they say, 'Remember when you came in?' I felt like I lied to them. You come to a realization that 'this is who I am, this is my life, and I've got to make the best out of it.' I don't think people are giving up; I think people are moving on to live their lives. They're tired of waiting. We are refocusing on life, because you can't just sit around and wait."

Ironically, Brown's new realism comes at just the moment when scientists hope stem-cell research might finally take off. An article published this week in the journal Nature reports on fully paralyzed rats that were able to walk thanks to a combination of drugs and electric stimulation. Human trials are set to begin this year. President Obama signed an executive order in March to relax the previous restrictions on federal funding of human embryonic-stem-cell research. . And in January Geron, a pharmaceutical biotech company, received FDA approval to conduct the first clinical trials using human embryonic stem cells on people with spinal-cord injuries. But the trials, which were slated to begin this past summer (and are now on hold pending an additional FDA review), will be conducted on patients with brand-new injuries. Brown is actually not so disappointed by that. He has no desire to be among the first group of people to test out a "cure." "There's no way my body, after 21 years of sitting down, can suddenly handle standing up," he says. "I want to make sure they get it right before I try it out. When the time comes, I want to walk straight, not sideways or crooked."

Ultimately, Brown believes, the definition of the word "cure" needs to be rethought. So to a quadriplegic, for example, a cure might allow him the chance to feed himself, or take a shower, or recover some hand function or lower-body sensation. To a paraplegic, it might mean recovering bladder function. Brown feels like his wheelchair, called an iBot (invented by Dean Kamen of Segway fame) is a cure of sorts. "It climbs stairs; goes on sand, grass, and gravel; and reaches as high as six feet," he says. "I'm no longer the guy pulling on a guy's jacket trying to get his attention. I can talk to people at eye level."

That said, Brown also feels he's experienced a panacea in the form of his two children, ages 6 and 11. "Being a father is a huge cure. It keeps me going. That's what I live for." And then he pauses, and some of the crack in his armor shows. "My friends and I laugh about it; laughter helps," he says. "But when push comes to shove, a lot of us have our moments. Twenty-one years ago I remember hearing the word 'cure' and it was like, 'Bingo! Bring it on!' Now I'm like, 'Call me when you got it. Figure it out and let me know.' "