A new study reveals that over 5.5 million Americans, nearly 2 per cent of the population, are paralysed or partly paralyzed, mostly by stroke and spinal injury. This is a lot more than was previously thought.
The Christopher and Dana Reeve Foundation sponsored Anthony Cahill, director of the division of disability and health policy of the University of New Mexico, and colleagues, to do the study which is being reported in the media today.
With the help of experts at the Centers for Disease Control and Prevention (CDC) and leading disability specialists, Cahill and colleagues designed a survey of 33,000 US households to estimate how many people have some form of paralysis, reported the Associated Press.
In the telephone survey, respondents were asked whether they or any other member of their household had difficulty moving their arms or legs. Further questions revealed the cause of their paralysis or partial paralysis and only people whose movement difficulty was due to damage to their central nervous system, such as that which results from spinal injury or diseases like cerebral palsy, stroke and multiple sclerosis, were included in the analysis. Respondents with movement difficulty caused by arthritis for example were not counted, according to an account in the Wall Street Journal.
The researchers found that 29 per cent of affected Americans became paralyzed or partly paralyzed after a stroke, and 23 per cent as a result of spinal cord injuries.
Previous estimates of paralyzed patients in the US relied only on limited sources, such as medical centers that handle only the most severe cases, said Cahill.
About 50 per cent of the respondents who were subsequently included in the paralysis group reported having a lot of difficulty moving or were completely paralyzed.
While the leading cause of spinal cord injuries appeared to be due to motor vehicle accidents, about 7 per cent of respondents who reported that they became paralyzed from an accident or injury said it happened while they were serving in the armed forces.
The new estimates put the number of Americans paralyzed due to spinal cord injuries at around 1.3 million, which is about five times more than previously thought, reported the New York Times.
Another surprising result was the estimate of people living with multiple sclerosis. Cahill and colleagues estimate this to be around 939,000 Americans, whereas previous figures put this nearer 400,000.
Gloria Krahn, the director of the CDC’s Division of Human Development and Disability, said this was the first time that the number of people affected by paralysis had been counted according to how the condition affected their ability to function. Previous estimates relied primarily on medical diagnoses. She told the New York Times that this new way of looking at the figures “tells the story of how large this group is”.
The annual household income of most of the respondents in the paralysis group was less than 30,000 dollars, said the researchers, while for a quarter of them it was under 10,000 dollars, a figure which compares with only 7 per cent of the US population as a whole.
According to the Associated Press, disability experts were not surprised by this finding. Paralysis often leads to job loss, and because often the spouses become the main carer, they may also lose their job and any associated health insurance, while treatment that might improve movement and independence is costly.
Cahill and colleagues also estimated that the average number of years people have been living with their paralysis is about 16, a figure that they believe to be rising as patients are living longer.
Christopher Reeve, the actor, was paralyzed when he fell from his horse in 1995 and died in 2004. Dana, his wife, died from lung cancer in 2006. The foundation that now carries their name started in 1982 as the American Paralysis Association and has worked to bring together everyone who refuses to accept that the spinal cord once injured, cannot be repaired.
Last month, President Obama authorized legislation to set aside 25 million US dollars of federal funding to further research and education on paralysis and to support people with movement difficulties. The original Act, which is now folded into an unrelated bill, was called the Christopher and Dana Reeve Paralysis Act, according to a report in the Wall Street Journal.
The Associated Press reported that the Reeve Foundation plan to use the new figures to press for policy changes, such as changing the 24 month waiting time before disabled workers can get Medicare, and insurance policies that won’t pay for 400 dollar air cushions for wheelchairs until the patient has a skin ulcer that can cost 75,000 dollars in hospital fees.
Vice president for quality of life at the Reeve Foundation’s Paralysis Resource Center, Joseph Canose, said that the study was also done because they didn’t accept the commonly held view that only 250,000 Americans were living with spinal cord injuries.
Canose told the New Times that:
“Chris never believed that number. He thought it was more.”
Sources: Reuters, Wall Street Journal, New York Times, Associated Press.
Written by: Catharine Paddock, PhD