People with disabilities should be part of equity in healthcare
Those with MS and other rare and chronic conditions can face doctor bias
You’d think that people with multiple sclerosis (MS) and other disabilities would have easy access to healthcare services. That’s not always so. A small study in the journal Health Affairs that I wrote about last year said many physicians “expressed explicit bias toward people with disabilities and described strategies for discharging them from their practices.”
Now, at the urging of people with disabilities and others, the U.S. National Institutes of Health (NIH) has taken a step to change that. The NIH recently designated people with disabilities as a “population with health disparities.” That means NIH is putting its money behind efforts to improve access to healthcare for people with MS and other debilitating diseases or conditions.
To accomplish this effort, it’s put out a call for research projects that will look for innovative approaches to address the impact that living with a disability has on healthcare access and treatment outcomes.
“This designation marks an important step in an agency-wide effort to advance health equity for people with disabilities, which also includes updating the NIH mission statement to accurately reflect our goal of turning scientific discoveries into better health for all, including people with disabilities,” said Acting NIH Director Lawrence A. Tabak in a press release.
Looking for deeds, not just words
I’m concerned that this new NIH designation will be just another way to talk the talk without walking the walk. I suspect that a lot of words will be written and dollars will be spent without having a real impact on you or me.
So what can really be done about this problem? I looked for solutions via Google.
The Bloomberg School of Public Health at Johns Hopkins University in Baltimore has a whole center devoted to this effort: the Hopkins Center for Health Disparities Solutions, which combines the resources of the Bloomberg School with the schools of medicine and nursing to work on solutions. This approach seems to be an excellent way to address the problem, yet the center’s mission statement reads in part: “to reduce racial/ethnic and social class disparities in health status and healthcare.” It makes no mention of disabilities.
You can take an online course in Leadership Development to Advance Equity in Healthcare from the T.H. Chan School of Public Health at Harvard University. But its course description doesn’t mention disability as a healthcare disparity.
The State of Maryland created a Commission on Health Equity two years ago. It seems to be focused only on health disparity based on race or social class.
The American Public Health Association came close to what I was looking for with this general statement: “We believe in conditions that give everyone the opportunity to reach their best health. This requires valuing all individuals and populations equally. It means addressing inequities in the places where people are born, grow, live, work, learn, and age.” But the statement doesn’t quite get there for me.
So maybe the recent NIH designation of people with disabilities as a “population with health disparities” is the best we can expect right now.
Do any of you have suggestions for putting these words into deeds? Please note them in the comments below. You’re also invited to visit my personal blog at www.themswire.com.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Patricia P. Garrett
People with disabilities need health care their entire lives. This an expensive disease and everything should be done ro help these citizens to be independent and to thrive in our society
Ed Tobias
Thanks for posting that, Patricia. I couldn't agree more.
Ed
Mac Buchowski
Excellent paper and conclusions. The NIH will not change its statement because it does not fit its narrative. The same goes for the Johns Hopkins School of Public Health and other entities applying for the equity grant money. The only solution is to write papers like yours and let the public know about the problem.
Ed Tobias
Hi Mac,
Thanks for your comments. I don't know what motivates the organizations I mentioned but I hope, with pressure from our own community, they'll see the light.
Ed