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NIH Designates People with Disabilities as Facing Health Disparities

By designating people with disabilities as facing health disparities, NIH is making it easier to research the drivers of health inequities.

The National Institutes of Health (NIH) will now consider people with disabilities as a population with health disparities, which, among other things, with let the agency start conducting more research into the matter.

The move, made in consultation with the Agency for Healthcare Research and Quality (AHRQ), is a key step forward in addressing the health disparities faced by populations with disabilities, according to Eliseo J. Pérez-Stable, MD, director of the National Institute on Minority Health and Health Disparities (NIMHD), which is part of NIH.

"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,” Pérez-Stable said in a press release. “Toward this effort, NIMHD and other NIH institutes launched a new research program to better understand the health disparities faced by people with disabilities who are also part of other populations designated as having health disparities.”

This change comes on the heels of a NIMHD report outlining the particular health disparities faced by populations with disabilities. The September report explained that people with disabilities are more likely to have certain diseases, face higher mortality rates, and are less likely to receive preventive care than their counterparts.

Moreover, this population is more likely to have social determinants of health, face poorer access to care, require medical and diagnostic equipment that bars care in some settings, and experience poor patient-provider communication. Implicit bias, stigma, stereotyping, and ableism are also common for people with disabilities, NIMHD wrote in the report.

But despite these pitfalls, the NIMHD report noted significant gaps in understanding health disparities faced by populations with disabilities.

“Access to quality health care is a basic human right. It is unacceptable that in 2023, every person in the United States of America does not have that access,” HHS Secretary Xavier Becerra said in the announcement. “Research to understand the barriers and unmet needs faced by people with disabilities, and to develop effective interventions to address them, is needed. This designation will help to improve access to healthcare and health outcomes for all people.” 

This new designation will enable NIH to conduct more research into this area, including study of the health issues and unmet health needs of people with disabilities. Other groups that are considered populations facing health disparities include racial/ethnic minorities, people with lower socioeconomic status, rural communities, and sexual and gender minorities.

“To the disability community, we hear you and thank you for sharing your lived experiences with NIH,” Lawrence A. Tabak, DDS, PhD, acting NIH director, said in a public statement. “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.”

In addition to the new designation, NIH called for research applications that would explore the intersection of disability, race/ethnicity, and socioeconomic status and its impact on healthcare access and outcomes.

These announcements have come alongside praise from NIH’s sister agencies under HHS. The Administration for Community Living said the designation of people with disabilities as facing health disparities, and the research that can come with it, will align well with the rest of the Biden administration’s emphasis on health equity.

“The Administration for Community Living commends NIH for taking these critical steps to begin addressing the significant and longstanding health disparities experienced by people with disabilities,” Alison Barkoff, who leads ACL and serves as the advisor to the HHS Secretary on disability policy, said in the press release. “Today’s decision complements other important actions HHS has taken to advance equity for disabled people, including the proposed update to the regulations prohibiting disability discrimination by recipients of HHS funding.”

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