The National Institute of Health made a landmark move Tuesday, advancing the priority of research for people with disabilities and aligning more closely with CEDHARS vision of inclusion science.
On Tuesday, Sept. 26, Dr. Eliseo Pérez-Stable, director of the National Institute on Minority Health and Health Disparities, NIMHD, designated people with disabilities as a population with health disparities for research supported by the National Institutes of Health. The decision was made in consultation with Dr. Robert Otto Valdez, director of the Agency for Healthcare Research and Quality.
People with disabilities often experience health inequities that lead to poorer health and shorter lifespan. CEDHARS believes this historically stems from exclusionary criteria for people with disabilities, rooted in discrimination in research. The ultimate goal of CEDHARS is to reduce these gaps and to include people with disabilities in every step of research.
The designation is one of several steps NIH is taking to address health disparities faced by people with disabilities and ensure representation in NIH research, according to a NIH press release.
The designation will lead to more funding of research specific to and inclusive of people with disabilities.
The move follows a report delivered by an NIMHD advisory council as well as input from the disability community and a review of the science and evidence. A report issued in December 2022 by the NIH director’s advisory committee explored similar issues faced by people 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,” Pérez-Stable said. “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.”
NIMHD is the lead NIH institute on monitoring minority health and health disparities research. Other NIH-designated populations with health disparities include racial and ethnic minority groups, people with lower socioeconomic status, underserved rural communities and sexual and gender minority groups.
These groups experience significant disparities in rates of illness, morbidity, mortality and survival, driven by social disadvantage, compared to the health status of the general population.
According to the NIH press release, people with disabilities who also belong to one or more other populations with health disparities fare even worse.
“Access to quality health care is a basic human right,” said HHS Secretary Xavier Becerra. “It is unacceptable that in 2023, every person in the United States of America does not have that access. 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.”
In addition, NIH also issued a notice of funding opportunity calling for research applications focused on novel and innovative approaches and interventions that address the intersecting impact of disability, race and ethnicity, and socioeconomic status on healthcare access and health outcomes.
“To the disability community, we hear you and thank you for sharing your lived experiences with NIH,” said Acting NIH Director Dr. Lawrence. “This designation marks an important step in an agency-wide effort to advance health equity for people with disabilities.”
