Advocates convince NIH to add people with disabilities to health disparity research

Bonnielin Swenor is the founder and director of the Johns Hopkins Disability Health Research Center, which uses data-driven approaches to shift the paradigm from "living with a disability" to "thriving with a disability." She is also an associate professor at the Johns Hopkins School of Nursing and holds joint appointments at the School of Medicine's Wilmer Eye Institute and the Bloomberg School of Public Health's Department of Epidemiology. Her personal experience with disability motivates her research. She was instrumental in last week's designation by the NIH of people with disabilities as a "health disparity population."

Image caption: Bonnielin Swenor

Image credit: Johns Hopkins School of Nursing

What do we need to know?

The designation of people with disabilities as a health disparity population is a landmark moment that follows years of advocacy.

A population can receive this designation if "there is a significant disparity in the overall rate of disease incidence, prevalence, morbidity, mortality, or survival rates in the population as compared to the health status of the general population." The director of the National Institute of Minority Health and Health Disparities (NIMHD), in consultation with the director of the Agency for Healthcare Research and Quality, is the only person authorized to make this designation.

In 2021, the National Council on Disability, which advises Congress and the President, outlined the overwhelming evidence that people with disabilities face "significant disparities," which echoed years of advocacy from the disability community. The following year, I co-chaired a working group under the National Institutes of Health (NIH) Advisory Committee to the Director recommending this designation, among other actions. In response, a committee within the NIMHD Advisory Council was formed to consider this designation.

On Sept. 1, the advisory council rejected designating people with disabilities as a health disparity population. The disability community was outraged by this rejection.

"Nothing about us without us" is the disability community's motto. Yet, no one with a disability was included on this Advisory Council committee, which likely impacted their understanding of disability. This rejection was also in stark contrast to recent landmark efforts from the Department of Health and Human Services to address the inequities that disabled people face.

However, there was a small window of time to take action. This rejection of designating people with disabilities as a health disparity population came from an advisory body. The NIMHD director had not yet made a final decision.

I couldn't sit this one out. As a person with a disability and a disability equity researcher, I felt I had to try to do something.

I contacted my colleague, Jae Kennedy, a professor at Washington State University with whom I recently co-authored a commentary outlining why this designation was critical. We then called Tony Coelho, a former congressman who was the primary sponsor of the Americans with Disabilities Act (ADA). Together we set out to collect signatures supporting this designation for people with disabilities.

In less than 48 hours we obtained more than 1,500 signatures in joint letters from disability advocacy groups, researchers, health care and public health professionals, and organizations. This was an astonishing result, even to us. It was a clear reflection of the broad support for this designation.

On Sept. 26, the NIH announced that the NIMHD director was granting this designation. This announcement was doubly meaningful as it fell on the 50th anniversary of the Rehabilitation Act, which predates the ADA and provides protections for people with disabilities against discrimination.

In the announcement, acting NIH Director Lawrence A. Tabak stated, "To the disability community, we hear you and thank you for sharing your lived experiences with NIH. 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."

What does this change mean for people with disabilities and their advocates?

This designation is needed for people with disabilities to be included in NIH funding and programs focused on addressing health disparities, as well as to increase the inclusion of people with disabilities in research studies.  This designation is also necessary to support efforts addressing the exponential health inequities impacting disabled people from intersecting marginalized groups, including people of color, people from the LBGTQ+ community, people who live in rural areas, and people who have low incomes.

At the Johns Hopkins Disability Health Research Center, we've had an uphill battle in getting funding to address disability health inequities. This designation opens up much-needed opportunities to support research like ours.

Now that the NIH is making this change, will it have a downstream impact?

The announcement of this designation came with a funding announcement supporting research addressing health and health care disparities affecting people with disabilities. This is a wonderful and immediate impact.

The research we prioritize and the people we include in the process have implications on society. Over the long term, this designation opens doors for much-needed social progress for people with disabilities. It has the potential to help shift society away from stigmatized views of disability. And I have more hope for that positive change than ever before!