Disability groups and activists have won the fight. The National Institutes of Health has designated individuals with disabilities as a population with health disparities, ensuring their inclusion in NIH-supported research.
On September 26, Eliseo J. Pérez-Stable, the Director of the National Institute on Minority Health and Health Disparities (NIMHD), officially designated individuals with disabilities as a population with health disparities to be included within the scope of research supported by the National Institutes of Health (NIH).
The NIMHD's decision was the result of collaboration with Robert Otto Valdez, the Director of the Agency for Healthcare Research and Quality, a review of a 2023 report from the National Advisory Council on Minority Health and Health Disparities (NACMHD), input from the disability community, and scientific evidence.
In December 2022, the Advisory Committee to the Director (ACD) of the NIH, guided by the work of the Subgroup on Individuals with Disabilities, released a report exploring growing health-related challenges faced by this population. The subgroup expressed a need to increase the inclusion of people with disabilities in research studies.
"This designation opens opportunities for people with disabilities to be included in NIH funding and programs that address health disparities and focus on diversifying research studies," says Bonnielin Swenor, Ph.D., MPH Associate Professor at Johns Hopkins School of Nursing and Director of Johns Hopkins Disability Health Research Center.
According to the NIH, designated populations, such as individuals living with disabilities, encounter significant differences in illness, morbidity, and mortality rates due to social disadvantages compared to the general population. In addition, individuals with disabilities often contend with a diverse range of health conditions.
Moreover, they may face discrimination, exclusionary practices, and issues with policies and health insurance that hinder their access to timely and comprehensive healthcare, which can contribute to poorer health outcomes.
"This designation will also support efforts addressing the exponential health equity barriers that disabled people from intersecting marginalized groups face," Swenor tells Healthnews.
To tackle these barriers, the NIH announced a funding opportunity for research examining approaches and interventions to address the multifaceted impact of disability, race, ethnicity, and socioeconomic status on healthcare access and health outcomes.
Moreover, following the recommendations by the ACD and the Subgroup on Individuals with Disabilities, the NIH recently initiated a Request for Information (RFI) to garner feedback on a proposed update to its mission statement. Specifically, the ACD suggests removing the phrase "reducing disability" from the statement, as that language implies people with disabilities are "flawed" and need to be "fixed." The RFI will remain open for input until November 24, 2023.
"Historically, research has had a myopic focus on preventing, treating, or curing disability. But many disabled people do not want their disabilities erased, and view disability as part of their identity, like race, ethnicity, or gender."- Swenor
In addition to people with disabilities, other populations designated by the NIH as experiencing health disparities include racial and ethnic minority communities, individuals with lower socioeconomic status, sexual and gender minority groups, and people living in specific rural areas.