A three-year study released this week by the Christopher & Dana Reeve Foundationin collaboration with the CDC shows that 1 in 50 Americans is living with paralysis. That’s almost 6 million people—equal to the combined populations of Los Angeles, Philadelphia, and Washington, D.C. Among the millions of Americans living with paralysis, almost 1.3 million are spinal cord injured.
The numbers are dramatically greater than previously thought.
As we move forward in the debate about health care reform, these findings create a mandate to develop better treatments and promote opportunities for people with disabilities to live independently and return to work.
My father, Christopher Reeve, knew first hand the difficulties of living with paralysis. But in many ways he was unusually fortunate: he could afford to live at home, work, and access physical therapies. The study shows that many Americans living with paralysis are struggling under immense medical and financial challenges—and there are more people facing those challenges than ever thought before.
Roughly 3.6 million families dealing with paralysis make less than $25,000 per year. In many households the spouse or parent of a paralyzed person acts as primary caregiver, limiting his or her ability to work and compounding the financial hardship caused by the overwhelming costs of medicine, resources, and care. The study also shows that paralysis is overrepresented in certain minority communities—communities that oftentimes already face disproportionate economic and social challenges.
As we move forward with health care reform in the current economic climate, addressing the needs of a community of 6 million Americans simply makes good business sense.
First, we must recognize the value of investing in research to find therapies and cures. Last month, Congress passed the Christopher and Dana Reeve Paralysis Act authorizing funding to support paralysis research and quality of life programs. Now more than ever, it is critical that the Act be funded. In the field of spinal cord injury alone, the cure that once seemed inconceivable is coming ever closer to a reality. Treadmill walking therapies funded by the Reeve Foundation have given some people with spinal cord injuries significant physical improvement, and some are even walking. The success of this and other research developments fills us with hope that even more effective treatments will be found. But progress takes time and resources.
Like any investment, if we are to see a return, we must be committed over the long term.
Socially, promoting opportunities for employment and independent living also makes good business sense. After my father’s accident, one of the most important things for him was his ability to return to work; to be productive and provide for his family. Adaptive technologies and unprecedented connectivity now make it easier than ever to integrate people living with disabilities into the workforce. But we must support vocational training and workplace programs to promote that integration; to enable people to work, pay taxes, and support themselves and their families.
We also need to rethink insurance. One of the most daunting barriers that people living with paralysis face is their inability to obtain adequate health insurance. Of the 47 million Americans who are currently underinsured or not insured, nearly 20 percent are people with disabilities. And for those who are covered, misguided policies often lead to spiraling costs and insufficient care. Consider: A woman living with spinal cord injury who needs a $400 seat cushion will not be reimbursed for it, but will be covered for painful pressure sores that can result from not having that cushion—treatment that can cost anywhere from $75,000 to $100,000. Such inefficiencies could be avoided if insurance companies were to support preventative therapies and technologies that can meaningfully improve the health of people living with disabilities.
The Reeve Foundation study reveals the scope of a community that is 6 million strong—a community defined not by ethnicity, geography, age, color or creed, but united by the courage its members show in the face of significant adversity.
Today we must recognize that community and focus our efforts to ensure that people who want to heal, to work and succeed have the resources, support, and access they deserve.
Alexandra Reeve Givens is a director of the Christopher & Dana Reeve Foundation. For more information, visit www.christopherreeve.org