-Kiley McLean
A few months ago, the National Institutes of Health (NIH), officially recognized people with disabilities1 as a population facing health disparities. The NIH is a part of the U.S. Department of Health and Human Services and serves as the nation’s primary medical research agency with an annual budget exceeding $40 billion. It holds the distinction of being the largest public funder of biomedical and behavioral research globally.
Dr. Eliseo J. Pérez-Stable, M.D., director of the National Institute on Minority Health and Health Disparities (NIMHD), made this designation in September 2023. For background, the NIH is made up of 27 Institutes and Centers that each have a specific research agenda. NIMHD leads NIH research related to improving minority health and eliminating health disparities.
This is a landmark moment for the disability community who have been advocating for years that this population experiences significant disparities in health compared to the general population.
Prior to this, NIMHD’s minority populations with health disparities included: racial and ethnic minority groups, people with low socioeconomic status (SES), underserved rural communities, and sexual and gender minority (SGM) groups. In September, people with disabilities were added to this list.
“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,” said Dr. Pérez-Stable in the September 2023 NIH Press Release. “Toward this effort, the National 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.”
So, what exactly are health disparities?
Research has suggested that people with disabilities experience worse health outcomes throughout their lifespans compared to those without disabilities. For instance, there are high rates of many psychiatric disorders (depression, anxiety, OCD, bipolar disorder, ADHD) and medical conditions (epilepsy, sleep disorders, obesity, diabetes, cardiovascular disease) found among autistic adults compared to non-autistic adults. Historically, these outcomes have been seen as unpreventable and unavoidable health differences between communities. Or they have been attributed to personal “lifestyle” factors such as inadequate physical activity, sedentary lifestyles, and poor nutrition.
The disability community has long advocated that these health differences are not inherent to having a diagnosis of a disability; nor are they solely the result of poor individual behavior. These health differences are, in fact, closely linked to larger and systemic economic, social, and environmental disadvantages. As such, health differences among people with disabilities are potentially avoidable and preventable health disparities and consequences of exclusive healthcare policies and systems.
Social and economic factors, often referred to as social determinants of health, are the primary drivers of health disparities and they often impact an individual’s health behaviors. For example, income, education, employment, food security, housing, social inclusion, and access to health services can all positively or negatively influence health disparities. Populations with health disparities are also socially disadvantaged, in part due to being subject to racist, ableist, or discriminatory acts. Therefore, if we were to consider the high rates of psychiatric disorders and medical conditions in autistic adults as health disparities, we would conclude they are a result of things like reduced lack of access to inclusive and high-quality medical care, fitness and wellness programming, education, housing, employment, and transportation, and an overall failure to include autistic people in public health efforts.
Why is this important?
Disability advocates hope that designating people with disabilities as a population with health disparities will open the door to funding for research on these disparities and encourage recruitment of researchers with disabilities. Further in line with these efforts, this past month, the NIH invited feedback on its mission statement after the NIH Advisory Committee to the Director Working Group on Diversity, Subgroup on Individuals with Disabilities (established in 2021) recommended this key change:
- The current mission statement: “To seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and disability.”
- The proposed revised mission statement: “To seek fundamental knowledge about the nature and behavior of living systems and to apply that knowledge to optimize health and prevent or reduce illness for all people.
The NIH is currently reviewing comments and suggestions, and we hope that updating this mission statement and including individuals with disabilities as a population with health disparities are key first steps in fostering equity and inclusion in research activities moving forward. It would reflect a shift in research away from trying to “fix,” “cure,” or “reduce” disability itself and a move toward finding ways to reduce barriers to health care, optimize health, and facilitate thriving. It also recognizes the heightened health disparities impacting people with disabilities who belong to intersecting marginalized groups, including those who are BIPOC, LBGTQIA+, or who live in rural areas.
Ultimately, we hope these changes will lead to much more research on social determinants of health for people with disabilities and inclusive interventions that reduce or eliminate health disparities in this growing population.
To read more about these changes and ways you can get involved, check out:
- Krahn, G. L., Walker, D. K., & Correa-De-Araujo, R. (2015). Persons with disabilities as an unrecognized health disparity population. American Journal of Public Health, 105 Suppl 2(Suppl 2), S198–S206. https://doi.org/10.2105/AJPH.2014.302182