Paralysis is dramatically more widespread than previously thought, with approximately 1.9 percent of the U.S. population, or 5,596,000 people reporting that they were living with some form of paralysis.
In a survey of more than 33,000 households by the Christopher & Dana Reeve Foundation, 40 percent more Americans live with paralysis and more than five times the number of Americans live with spinal cord injury than previously estimated. Specifically, the survey shows that 1.275 million have had a spinal cord injury and over 5.6 million Americans live with some form of paralysis. The highest previous estimates were 250,000 and roughly four million, respectively.
“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. “Someone you know is living with paralysis — a family member, a friend or a work colleague.”
The study was conducted by the University of New Mexico’s Center for Development and Disability. It is the first population-based survey to measure the national population. According to the study, the leading cause of paralysis was stroke, followed by spinal cord injury and multiple sclerosis.
The study also delved into race and socioeconomic status. Paralysis appears to be disproportionately distributed among some minority communities — such as African Americans and Native Americans. Also, 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.
The findings about socioeconomic status are particularly concerning. Basic supports are available — such as ramps and in-home caregivers — that allow those living with spinal cord injury and paralysis to continue to work and to improve their quality of life. In addition, rehabilitation therapies and medical interventions that restore functionality in some patients exist. Yet these therapies and quality of life supports are all-too-often unavailable, often due to lack of adequate health insurance or limited geographic access.
“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,” said Joseph Canose, Vice President for Quality of Life at the Christopher & Dana Reeve Foundation.
The new numbers are higher for several reason. The study surveyed a much larger population. Also, people or their family members were simply asked about functional capabilities rather than their conformance to a specific medical model.
The foundation plans to launch a major campaign, and has laid out an ambitious public policy agenda. Part of the campaign includes a report titled “One Degree of Separation,” which outlines those things necessary for increased quality of life for people living with paralysis, as well as the action steps necessary to ensure these supports and treatments are widely available.