A COURAGEOUS QUEST
Elections matter! Case in point: the Christopher and Dana Reeve Paralysis Act.
I introduced this bill in 2002 in an effort to advance collaborative research into paralysis and improve the quality of life for people living with paralysis and mobility impairments. Over the years, the bill passed twice in the House, but was repeatedly obstructed in the Senate. With the expanded ranks of supporters in the Senate, thanks to last November’s election, the Christopher and Dana Reeve Paralysis Act was one of the first pieces of legislation passed this year.
In 1995, Christopher Reeve, famous for his role in the popular Superman movies, was in an equestrian accident that injured his spinal column and left him paralyzed from the neck down. He was fortunate that he could afford the very best doctors and nurses, the best caregivers and therapies. He could have just withdrawn into himself and focused on his own wellbeing—a full-time job in and of itself—but he made a different choice, which proved him to be a man of great character.
I first met Christopher in 1998 when he testified before the Senate Appropriations Subcommittee on Labor, Health, Human Services and Education; I was a ranking member on that committee at the time. It was clear to me that he was a man on a mission to help others with disabilities. He not only put a face on spinal cord injury, but he also encouraged neuroscientists around the world to intensify research on complex diseases of the brain and central nervous system.
Later on, I got to know Christopher as a friend. He was warm with an impish sense of humor and a big smile. It was clear that he spent many of his waking hours gathering information about spinal cord injuries and the research being conducted in laboratories and clinics throughout the world.
Christopher told me and my colleagues on the committee that the kind of research that we were doing on spinal cord paralysis was disjointed and not nearly as effective as it could be. He devoted himself to working with others—scientists and researchers, as well as members of Congress and their staffs—to come up with ideas for better coordination of spinal cord studies within a unified structure.
These ideas were incorporated into legislation that eventually became known as the Christopher and Dana Reeve Paralysis Act. Sadly, his death in 2004 robbed the paralysis community of its most passionate and effective advocate. Dana continued her husband’s quest until her own tragic death in 2006 from cancer. At that point, thousands of Americans whose lives have been touched by paralysis, continued the Reeves’ advocacy work, often at a cost to their own health and wealth.
The act addresses a less-than-optimum status quo in which paralysis research is being carried out across multiple disciplines with no effective means of coordination or collaboration. Without these two components, time, effort and valuable research dollars are used inefficiently. Also, families affected by paralysis too often remain unaware of critical research results, information about clinical trials and best practices.
The bill’s goal is to:
—improve access to services for people with paralysis and other disabilities
—provide information and support to caregivers and their families
—develop assistive technology —provide employment assistance
—encourage wellness among those with paralysis
Christopher and Dana spoke up for all people living with disabilities. They spoke up for Parkinson’s and ALS research. They advocated for more generous funding for the National Institutes of Health. The Reeves always held out hope that Christopher would recover from his spinal cord injury, and they fought just as hard for others’ recovery as well.
Now that the Christopher and Dana Reeve Paralysis Act has passed the Senate, we hope it will soon pass the House, and then be signed into law by President Obama. If the Reeves were still with us, they would be the first to acknowledge that even with this new law in place, we would still have unfinished business. As long as there is hope for better outcomes with spinal cord injuries, Parkinson’s, ALS and other such diseases, our work is not done. As long as people with disabilities are forced to live in nursing homes because Medicaid won’t cover home care, we cannot rest.
If we have just half the commitment, tenacity and courage that Christopher and Dana Reeve had, then we can make great inroads into these challenges.
Senator Tom Harkin