By: Madeline Ellis
Published: Wednesday, 22 April 2009
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Christopher Reeve is well known for his leading role as “Superman,” but probably best known as a symbol of persistence and courage after a 1995 horse riding accident left him paralyzed from the neck down. He sought the help of the American Paralysis Foundation (APF), an organization that now carries his name, and spent the remainder of his life working tirelessly on behalf of spinal cord research, not just for himself, but for the 250,000 Americans believed to be affected by spinal cord injuries. But Reeve was skeptical of that number, believing it was much higher—and it turns out he was right.
According to a new study funded by the Christopher and Dana Reeve Foundation, nearly 1.3 million people are living with spinal cord injury, more than five times the estimate in 2008. And over 5.6 million Americans, about one in 50, live with some degree of paralysis due to a variety of neurologic problems; about 40 percent more than previously estimated. The leading cause of paralysis was stroke (29 percent), followed by spinal cord injury (23 percent) and multiple sclerosis (17 percent). “Nobody had any idea what the numbers were, because no one ever tried to find out,” said Joseph Canose, vice president for quality of life at the Reeve Foundation’s Paralysis Resource Center. “There were many different ways of counting it, and there was no common definition, and the numbers were all over the place.”
Lead investigator of the study, Anthony Cahill, a disability specialist at the University of New Mexico, said earlier estimates of paralysis patients were limited by medical-billing data that missed past diagnoses, medical centers that handle only the most severe cases and small geographic areas. The new estimate was based on a telephone survey of more than 33,000 U.S. households in which respondents were asked whether they or any other member of their household had any difficulty moving their arms or legs. Only those whose paralysis was due to a disease or injury affecting their central nervous system, such as a spinal cord injury, stroke, multiple sclerosis or cerebral palsy were included in the analysis. Mobility problems from muscular dystrophy, obesity, arthritis or diabetes, which aren’t central nervous system disorders, weren’t counted.
Cahill said he was surprised by the ethnic disparities revealed in the study; the most striking being that 7.3 percent of those with a spinal cord injury said they were Native American or Alaskan natives, who make up only 0.8 percent of the U.S. population. Motor vehicle accidents might be to blame, he says, noting that 90 percent of Navajo Nation roads aren’t paved.
The study also found that people living with paralysis have households with lower incomes. Sixty percent of people with paralysis have annual household incomes of less than $25,000. Worse, roughly 25 percent of households with a person who is paralyzed earn less than $10,000 per year, compared with only 7 percent of households in the general population.
“This study reveals important findings about the prevalence of paralysis and spinal cord injury, but we must also remember that behind each of these statistics are real people, who along with the rest of their families are facing urgent needs,” said Dr. Edwin Trevathan, Director of the CDC’s National Center on Birth Defects and Developmental Disabilities. “This is a crucial first step to providing appropriate public health supports for this community in understanding how many people live with the condition, who they are, and what they need.”
Alexandra Reeve Givens, daughter of Christopher Reeve, said the higher numbers revealed in the study is just one more reason the nation needs to make an investment in paralysis research. “It really hit home for us that we need to do a better job,” she said. “We need to make an investment for the entire country—to help people get back into the work force, to educate employers, too, because something of a stigma is still there.”
Next, the Reeve foundation will lobby in Washington, D.C., using the findings to push for health policy changes, including ending a federal requirement that disabled workers wait 24 months before getting health care through Medicare and in insurance policies that forbid $400 air cushions for wheelchairs until someone has already suffered a pressure-caused skin ulcer that can require a $75,000 hospital stay. They will also seek better adherence to the Americans With Disabilities Act, more support for the family caregivers of those who are paralyzed, and more and better trained home health attendants.
Last month, President Barack Obama signed legislation that was titled the Christopher and Dana Reeve Paralysis Act before it was folded into an unrelated bill, which authorizes Congress to set aside $25 million in federal funding for expanded and more coordinated research on paralysis and programs to help those who have trouble moving. Obama said the new law “will connect the best minds and best practices from the best labs in the country and focus their endeavors through collaborative scientific research into the cure for paralysis, saving effort, money and, most importantly, time.” The law designates the National Institutes of Health to coordinate research and work with other agencies and private groups to enhance paralysis research, rehabilitation and treatment programs. “Today is a day of progress for the millions of Americans who are living with paralysis and multiple sclerosis,” said Sen. Tom Harkin, D-Iowa, a co-sponsor of the measure.
The new law will help scientists “find ways to improve the lives of so many living with disabilities, bringing hope to those in need,” Harkin said.
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