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More Americans Deal With Paralysis Than Estimated

April 21, 2009

More than 5.6 million people in the US are living with some form of paralysis, according to a new survey of 33,000 households.

Anthony Cahill of the University of New Mexico lead researchers who conducted and analyzed results of a telephone survey. They found that 1.275 million people had a spinal cord injury and more than 5.6 million deal with some type of paralysis.

Researchers had previously estimated that the nationwide number of spinal cord injuries was 250,000, and that four million Americans live with paralysis.

“That means one in 50 Americans is living with some form of paralysis, whether caused by disease, spinal cord injury or neurological damage,” said Peter T. Wilderotter, President and CEO of the Christopher & Dana Reeve Foundation, which initiated the study.

“Someone you know is living with paralysis — a family member, a friend or a work colleague.”

The study combined efforts from more than 30 experts from 14 universities and medical centers as well as the US Centers for Disease Control and Prevention.

Dr. Cahill said the study represents the first population-based analysis to measure the prevalence of paralysis in America.

“The enormous data set offers a wealth of information about this population,” said Cahill.

The analysis shows that an estimated 1.9 percent of the US population, or 5,596,000 people reported living with some form of paralysis. That figure is about 40 percent more than previously estimated.

Researchers defined paralysis as “a central nervous system disorder resulting in difficulty or inability to move the upper or lower extremities.”

“Thirty-sex percent of those who reported being paralyzed said they had ‘a lot of difficulty’ in moving, while 16 percent said they were completely unable to move,” according to researchers.

“Household income for those who reported being paralyzed is heavily skewed toward lower-income brackets and is significantly lower than household income for the country as a whole as reported by the United States Census,” they added.

“Roughly 25 percent of households with a person who is paralyzed earn less than $10,000 per year, compared with only seven percent of households in the general population.”

Researchers acknowledged that while basic supports, such as ramps and in-home caregivers as well as rehabilitation therapies do exist, these therapies and quality of life supports are “all-too-often unavailable, often due to lack of adequate health insurance or limited geographic access.”

“The healthcare system is often penny-wise and pound-foolish,” said Joseph Canose, Vice President for Quality of Life at the Reeve Foundation.

“For example, many health insurance companies will not pay for a $400 wheel chair seat cushion, but they will pay $75,000 to $100,000 to treat the pressure sores caused by the wrong cushion. The more we can do to help people live independently — to get an education, to work and to live fulfilling lives — the more our entire society benefits.”

“Before World War II, you were lucky to live” after a spinal-cord injury, said Joseph Canose of the Christopher & Dana Reeve Foundation.

“Now that they’re living much longer, many of our supports are wholly inadequate.”

Wilderotter concluded: “If Christopher Reeve were alive today, he’d say, ‘I told you so — now get to work.’”

The foundation intends to use the new findings to plan a public policy agenda that will include ending a federal requirement that disabled workers wait 24 months before getting health care through Medicare, according to the Associated Press.

Additionally, “While Congress recognized the importance of respite care for family caregivers by passing the Lifespan Respite Care Act in 2006, it must follow through and fully fund these programs,” said researchers.

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