"Paralysis is not rare," said Dr. Edwin Trevathan, disabilities chief at the U.S. Centers for Disease Control and Prevention, which helped design the study. "These data demand that we recommit ... to help this population."
"Those are startling, startling numbers," said Rep. Jim Langevin, D-R.I., who has a spinal-cord injury himself and urged more investment in not just medical research but transportation, job opportunities and other day-to-day needs of the paralyzed.
The report found that overall, almost 5.6 million people have some degree of paralysis due to a variety of neurologic problems. Stroke and spinal-cord injury are the leading causes, but they also include multiple sclerosis, brain injuries, birth defects, surgical complications and a list of other ailments.
That's about 30 percent higher than previous estimates. But for spinal-cord injury alone, previous estimates were woeful -- suggesting just a quarter million people were living with the trauma, a count that mostly included people like the late actor Christopher Reeve, who wound up at specialty treatment centers.
How could so many people have been missed? Partly, people are living much longer with paralysis, said CDC's Trevathan.
And they're now starting to face the added complications of aging on top of a disability.
"There's no road map for somebody like me," said Alan T. Brown of Hollywood, Fla., who broke his neck 21 years ago, just before his 21st birthday.
From a youth spent in wheelchair marathons, he's entering middle age suddenly needing more care, like an electric wheelchair instead of a manual. He's getting more infections, 17 urinary-tract infections last year alone. That's on top of the extra hurdles to arrange routine care, like a colonoscopy.
"This is finally going to open up people's lives to see what we live with," he said Tuesday.
For the new study, funded by the Christopher & Dana Reeve Foundation, University of New Mexico researchers designed a survey of 33,000 U.S. households to measure the full gamut of paralysis -- how many people either cannot move or have difficulty moving an extremity.
The study paints a sobering picture of the cycle of paralysis and poverty. Sixty percent of people with paralysis have annual household incomes of less than $25,000. Worse, about a quarter report household incomes below $10,000, compared with 7 percent of the U.S. population, the study found.
Patients often lose their jobs, and caregiving needs can cost a spouse a job, too, ending employer-provided insurance. Treatment, including the physical therapy that can improve independence and sometimes movement, is costly. There are income limits to qualify for Medicaid, and cash-strapped states are limiting coverage.
The Reeve foundation plans to use 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. Also on its target list: insurance policies that forbid $400 air cushions for wheelchairs until someone's already suffered a pressure-caused skin ulcer that can require a $75,000 hospital stay.
Florida's Brown knows he's lucky, able to pursue a lucrative public relations career and be a mentor to other spinal-cord patients despite being mostly paralyzed from the chest down. Before his injury, he had a private insurance policy that lasted until recently. Now, he said, he's paying tens of thousands of dollars yearly out-of-pocket, and worries about how his wife and two young sons will cope if he ever has to quit working.
"I thought I was bigger than the chair. I finally realized the chair is bigger than me," Brown said.
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