The National Institutes of Health (NIH) has officially recognized individuals with disabilities as facing health disparities, enabling increased research into these inequalities. This change follows consultation with the Agency for Healthcare Research and Quality (AHRQ) and aims to address the health challenges experienced by this group. NIH’s decision aligns with its goal of advancing health equity for all, including people with disabilities, emphasizing the need for comprehensive research into health disparities. This designation will facilitate investigations into the complex factors contributing to disparities and promote better healthcare access and outcomes for individuals with disabilities, in line with broader efforts to prioritize health equity.
The National Institutes of Health (NIH) has officially recognized that individuals with disabilities are confronted with health disparities, a crucial step towards conducting comprehensive research on the factors contributing to these disparities.
In consultation with the Agency for Healthcare Research and Quality (AHRQ), NIH has made this significant change to address the health disparities experienced by people with disabilities, as highlighted by Eliseo J. Pérez-Stable, MD, director of the National Institute on Minority Health and Health Disparities (NIMHD), a part of NIH. Pérez-Stable stated that this designation acknowledges the necessity of advancing research to gain a deeper understanding of the complex factors contributing to unequal health outcomes and multi-dimensional interventions. In pursuit of this objective, NIMHD, along with other NIH institutes, has launched a novel research program aimed at enhancing our comprehension of health disparities among people with disabilities who are also part of other populations identified as facing health disparities.
This significant shift follows the release of a NIMHD report outlining the specific health disparities experienced by individuals with disabilities. The report, published in September, revealed that people with disabilities are more prone to certain diseases, exhibit higher mortality rates, and are less likely to receive preventive care compared to their counterparts.
Furthermore, this population is disproportionately affected by social determinants of health, encounters challenges in accessing care, often requires specialized medical and diagnostic equipment that can hinder care in certain settings, and frequently experiences difficulties in patient-provider communication. Implicit bias, stigma, stereotyping, and ableism are also prevalent issues faced by people with disabilities, as highlighted in the NIMHD report.
Despite these challenges, the report underscored substantial gaps in understanding health disparities affecting individuals with disabilities.
HHS Secretary Xavier Becerra emphasized the fundamental right of access to quality healthcare, stating that it is unacceptable for any person in the United States to lack this access in 2023. He emphasized the need for research to identify barriers and unmet needs experienced by people with disabilities and to develop effective interventions to address them. This designation is expected to enhance healthcare access and outcomes for all individuals.
This new designation empowers NIH to conduct more extensive research in this area, delving into the health issues and unmet healthcare requirements of individuals with disabilities. It aligns with other groups recognized as populations facing health disparities, such as racial/ethnic minorities, individuals with lower socioeconomic status, rural communities, and sexual and gender minorities.
Lawrence A. Tabak, DDS, Ph.D., acting NIH director, expressed gratitude to the disability community for sharing their lived experiences with NIH, acknowledging that this designation represents a significant step in the agency’s broader efforts to promote health equity for individuals with disabilities. This initiative also includes updating the NIH mission statement to reflect their goal of translating scientific discoveries into improved health for all, including individuals with disabilities.
In addition to this new designation, NIH has issued a call for research proposals that explore the intersection of disability, race/ethnicity, and socioeconomic status, and how these factors impact healthcare access and outcomes.
These announcements have garnered praise from NIH’s sister agencies under the Department of Health and Human Services (HHS). The Administration for Community Living commended NIH for taking these essential steps to address the longstanding health disparities experienced by individuals with disabilities. According to Alison Barkoff, who leads ACL and advises the HHS Secretary on disability policy, these decisions are aligned with the broader emphasis on health equity within the Biden administration. Additionally, they complement other significant actions taken by HHS to advance equity for disabled individuals, including proposed updates to regulations prohibiting disability discrimination by recipients of HHS funding.
