In About-Face, NIH Designates Disability As A Health Disparity

The National Institutes of Health is adding people with disabilities to the list of groups considered 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 devote more resources to 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 disease, morbidity, mortality, and survival, driven by social disadvantage, compared with 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 research into the disparities experienced by people with disabilities and encourage the hiring 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 that lead to disparate health outcomes and multilevel interventions,” said Dr. Eliseo J. Pérez-Stable, director of the National Institute on Health. of Minorities and Health Disparities. when making the announcement.

The move comes just weeks after an advisory panel opposed adding people with disabilities to the list of populations with health disparities. In doing so, the committee cited concerns about the lack of a standardized definition of disability and said the limited staff and budget for these efforts could be “overwhelmed” by requests from such a “broad and heterogeneous” population.

In response, more than one hundred advocates and organizations pressured the U.S. Department of Health and Human Services to rescind the recommendation, arguing that people with disabilities meet all criteria for a health disparity population and alleging that decision was “based on ableist assumptions and a biased view of disability.” They also noted that an independent NIH advisory group made the opposite recommendation last year.

The NIH appeared to acknowledge this setback in its latest announcement.

“To the disability community, we hear you and thank you for sharing your lived experiences with the 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 life expectancy, often exacerbated by discrimination in the health care system. The situation is even worse for people with disabilities who also belong to other populations with health disparities, the agency said.

In addition to disability, the NIH already recognizes racial and ethnic minority groups, people of 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 encourages “ableist beliefs” that people with disabilities are “defective” and need to be “ fixed.”

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