The numbers are out and they are shockingly large: there are 5.6 million Americans dealing with paralysis, roughly 1 in 50. Until now, with the release of a major study from the Reeve Foundation, there hasn't been a reliable estimate of the incidence of paralysis.
Paralysis and Spinal Cord Injury in the United States
"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 Foundation's Paralysis Resource Center (PRC), who led the study. "There were many different ways of counting it, and there was no common definition, and the numbers were all over the place."
The new report found that 1.275 million Americans live with paralysis resulting from spinal cord injuries -- five times the previous commonly used estimate of 250,000. Stroke, which paralyzes 1.6 million Americans, was found to be the leading cause of paralysis; spinal cord injury was the second-leading cause, at 23 percent of cases.
Study emerged from the Paralysis Task Force
The study emerged from the Paralysis Task Force, a group of experts in healthcare and public policy convened by the Reeve Foundation. The group realized from the beginning that there was no reliable measure of paralysis and that without that information, it would be impossible to devise new or evaluate existing policies, programs, and services for people living with paralysis. As a result, the Task Force's first recommendation for advancing paralysis as a public issue was to build a more robust and comprehensive national knowledge base about it.
Now, that knowledge base has been established. The figures were gathered from a meticulously designed population-based telephone survey of about 33,000 households, It was developed by researchers at the University of New Mexico with input from top experts from around the country, including the Centers for Disease Control and Prevention as well as 14 leading universities and medical centers.
The survey used a functional definition of paralysis. People were counted as being paralyzed if they had either "inability" or "difficulty" moving arms or legs – as long as it was caused by a central nervous disorder and not arthritis or back trouble. The survey relied on reports not from medical records but from individuals and families themselves.
What does it mean
These findings have major implications for the treatment of spinal cord and paralysis-related diseases—not only for those living with these conditions, but also for their families, caregivers, health care providers, and employers. As the number of people living with paralysis and spinal cord injuries increases, for example, so do the costs associated with treating them. Each year, paralysis and spinal cord injuries cost the health care system billions of dollars. Spinal cord injuries alone cost roughly $40.5 billion annually—a 317 percent increase from costs estimated in 1998 ($9.7 billion). People living with paralysis and spinal cord injuries are also often unable to afford health insurance that adequately covers the complex secondary or chronic conditions that are commonly linked with these conditions. And, like many of those living with chronic illness, they are frequently forced to rely on friends or family members to serve as their primary caregivers.
Next, the Foundation will lobby in Washington, DC, Canose said, using the new survey numbers to help remove barriers that can frustrate those with paralysis from getting and keeping jobs and completing tasks of daily living.
Among improvements the Foundation will seek, he said, are better adherence to the Americans With Disabilities Act, more support for the family caregivers of those who are paralyzed, plus more and better-trained home health attendants.
One Degree of Separation
Paralysis and Spinal Cord Injury in the United States, a report from the Reeve Foundation.
- Paralysis affects 1.9 percent of the U.S. population, including those in a household who have difficulty moving arms or legs.
- Spinal cord injury is more common than thought: 1.275 million in the U.S. are affected.
- Certain groups of people have a higher number of individuals living with paralysis, including blacks and Native Americans.
- Low income is more common among households with someone affected by paralysis. About one-fourth of households with a person who is paralyzed make less than $10,000 a year, compared to only 7 percent of households in the general population overall that make less than that.
- The average age of those who responded that they are paralyzed is 52; for spinal cord injury alone, the average age is 48.
- Accidents at work were the number one cause of spinal cord injuries, followed by motor vehicle accidents, and sporting or recreation accidents.
- Besides spinal cord injury, other causes of paralysis include stroke, multiple sclerosis, cerebral palsy, post-polio syndrome and other conditions.