Five times more people in the U.S. — or nearly 1.3 million — are living with a spinal cord injury than doctors have thought, says surprising new research that finds many of them unable to afford key health care.

Overall, 5.5 million people in the U.S. have some degree of paralysis because of a variety of neurologic problems, from multiple sclerosis to strokes, says a report released Tuesday. The findings will help health authorities finally understand the scope of need in this largely hidden population. 

'There's no roadmap for somebody like me.' — Alan Brown, 41

"They're not all Christopher Reeves," said study author Anthony Cahill, a disability specialist at the University of New Mexico, referencing the late actor's extensive spinal cord injury and his highly publicized quest for groundbreaking treatments to overcome it.

Not only have less extensive injuries often gone uncounted, but the report suggests that people are living longer with paralysis — and they're now starting to face the added complications of aging on top of a disability.

"There's no roadmap for somebody like me," said Alan Brown of Hollywood, Fla., who broke his neck 21 years ago, just before his 21st birthday.

Inadequate supports

From a youth spent in wheelchair marathons, he's entering middle age suddenly needing more care, like an electric wheelchair instead of a manual. Infections are becoming more common. That's on top of the extra hurdles to arrange routine care, like a colonoscopy.

"Before World War II, you were lucky to live" after a spinal cord injury, said Joseph Canose of the Christopher and Dana Reeve Foundation, which funded the study. "Now that they're living much longer, many of our supports are wholly inadequate."

Until now, people with the worst injuries were most likely to be counted, Cahill said, those like Reeve who wind up at specialty treatment centres. Even less firm were estimates of how many people have arms or legs paralyzed or partly paralyzed by some other condition.

So, with advice from the Centers for Disease Control and Prevention and leading disability specialists, Cahill designed a survey of 33,000 U.S. households to measure how many people are living with some form of paralysis.

Beyond the overall toll, the findings paint a sobering picture of the cycle of paralysis and poverty. About a quarter of the paralyzed have an annual household income below $10,000 US, compared to seven per cent of the U.S. population, the report said.

That doesn't surprise disability experts: Patients often lose their jobs, and caregiving needs can cost a spouse a job, too, ending employer insurance. Treatment, including the physical therapy that can improve independence and sometimes movement, is costly, and there are income limits to qualify for Medicaid.

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 US air cushions for wheelchairs until someone's already suffered a skin ulcer that can require a $75,000 US 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. He had a private insurance policy before his injury, that lasted until recently.

Now, "I'm paying out of pocket like you wouldn't believe," and worries about how his wife and two young sons will cope if he worsens enough that he has to quit working.

"I thought I was bigger than the chair. I finally realized the chair is bigger than me," Brown said.