The National Institutes of Health is adding people with disabilities to the list of groups considered to be health disparity populations. (Lydia Polimeni/NIH)
Facing an uproar from disability advocates, the National Institutes of Health says it will move forward with plans to put more resources toward addressing health care disparities among people with disabilities.
The agency said this week that it will officially designate people with disabilities as a health disparity population.
The label applies to groups that “experience significant disparities in their rates of illness, morbidity, mortality and survival, driven by social disadvantage, compared to the health status of the general population,” the NIH said.
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Disability advocates have argued that the classification would open the door to funding for research on the disparities experienced by people with disabilities, encourage recruitment of researchers with disabilities as well as research participants with disabilities.
“This designation recognizes the importance and need for research advances to improve our understanding of the complexities leading to disparate health outcomes and multilevel interventions,” said Dr. Eliseo J. Pérez-Stable, director of the National Institute on Minority Health and Health Disparities, in making the announcement.
The move comes just weeks after an advisory panel opposed adding people with disabilities to the list of health disparity populations. In doing so, the committee cited worries about the lack of a standardized definition for disabilities and said that the limited staff and budget for these efforts could be “overwhelmed” by applications from such a “broad and heterogeneous” population.
In response, more than a hundred advocates and organizations pressured the U.S. Department of Health and Human Services to override the recommendation arguing that people with disabilities meet all the criteria for a health disparity population and alleging that the decision was “based on ableist assumptions and a biased view of disability.” They also noted that a separate NIH advisory group made the opposite recommendation last year.
The NIH seemed to acknowledge this pushback in its latest announcement.
“To the disability community, we hear you and thank you for sharing your lived experiences with NIH,” said Lawrence A. Tabak, acting director of the NIH. “This designation marks an important step in an agency-wide effort to advance health equity for people with disabilities.”
The NIH noted that people with disabilities frequently experience conditions that lead to poorer health and shorter lifespan, often exacerbated by discrimination in the health care system. The situation is even worse for people with disabilities who also belong to other health disparity populations, the agency said.
In addition to disability, the NIH already recognizes racial and ethnic minority groups, people with lower socioeconomic status, underserved rural communities and sexual and gender minority groups as health disparity populations.
The decision to add disabilities to this group comes as the NIH is also considering changes to its mission statement to address concerns that the current one furthers “ableist beliefs” that people with disabilities are “flawed” and need to be “fixed.”
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