Prevalence of paralysis in the United States

In 2009, the Christopher & Dana Reeve Foundation unveiled staggering statistics based on research into the prevalence of paralysis across the U.S.

According to the study, there are nearly 1 in 50 people living with paralysis -- approximately 5.6 million people. That’s the same number of people as the combined populations of Los Angeles, Philadelphia, and Washington D.C. And that number is nearly 40 percent higher than previous estimates showed.

We all know someone -- a brother, sister, friend, neighbor, or colleague -- living with paralysis. These aren’t strangers. They are only one degree of separation from all of us.

Researchers designed and conducted an exhaustive survey of more than 33,000 households across the country. More than 30 experts in paralysis and statistics, including those from the Centers for Disease Control and Prevention (CDC) and 14 leading universities and medical centers helped to develop and set the parameters for the study.

Today, this study continues to represent one of the largest population based samples of any disability ever conducted.

What did we learn?

This research revealed some important findings:

  • Paralysis is dramatically more widespread than previously thought. Approximately 1.9 percent of the U.S. population, or 5,596,000 people reported they were living with some form of paralysis, defined by the study as a central nervous system disorder resulting in difficulty or inability to move the upper or lower extremities.
  • The leading cause of paralysis was stroke (29 percent), followed by spinal cord injury (23 percent) and multiple sclerosis (17 percent).
  • Paralysis appears to be disproportionately distributed among some minority communities -- such as African Americans and Native Americans -- but not all minority groups.
  • People living with paralysis have households with lower incomes. Roughly 25% of households with a person who is paralyzed make less than $10,000 per year, compared with only 7% of households in the general population.

Why is this research important?

These findings have major implications for the treatment of spinal cord injury and paralysis-related diseases -- not only for those living with these conditions, but also for their families, caregivers, health care providers, and employers.

For example, as the number of people living with paralysis and spinal cord injuries increases, 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 are often unable to afford health insurance that adequately covers the complex complications 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.

More than 50 million people each year provide this kind of care, the value of which is estimated to be $306 billion annually, twice the $158 billion spent on home care and nursing home services combined.

Ensuring that the millions of people living with paralysis have access to the health care they need, as well as quality jobs and education, requires a reinvigorated and informed discussion about how better resources and policies for people with disabilities will not only help save billions of dollars but, above all, spark additional support around the discovery of effective treatments and therapies.

What’s next?

The 2009 study on the prevalence of paralysis triggered a national discussion and led to heightened awareness of the realities of living with a disability.

Over the years, the Reeve Foundation has shared these findings with congressional leaders, corporate executives, members of the media and other industry authorities to create a swell of advocacy to collectively combat the drivers of inequality and eradicate the obstacles to freedom faced by people living with paralysis.

In an effort to dive even further into the prevalence of paralysis, the Reeve Foundation launched a new study that will feature more in-depth questions and metrics based on a survey of over 70,000 households in the U.S. Findings will be made available in 2016.

There is tremendous power in these numbers. By demonstrating the sheer impact of paralysis across the nation, from a health, societal, and financial perspective, we are creating a framework to keep our mission moving forward -- to enhance quality of life and find cures for paralysis in the here-and-now.

Download the full report for an in-depth overview of the 2009 study (PDF)

This project was supported, in part by grant number 90PR3002, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.