For years, the National Institutes of Health has funded research into racial, gender, and other health disparities facing disadvantaged communities, but it has left out one notable group: people with disabilities.
Now, in a major victory for disability health advocates, the NIH announced today that it has designated people with disabilities a “health disparities population.”
The term is used to describe disadvantaged groups who experience preventable health disparities and will dramatically expand access to funding and resources for research and support of disabled populations. NIH is the world’s largest public funder of biomedical research.
Disability advocates say the change reflects an ongoing shift in medicine away from trying to “fix” or cure people with disabilities toward a more holistic view of people with disabilities as a demographic group with their own socioeconomic challenges.
“This is a big deal,” said Peter W. Thomas, co-coordinator of the Coalition for Disability and Rehabilitation Research, which focuses on improving disability research. “It will bring more attention to providing the care people with disabilities need, and hopefully lead to better outcomes for people with disabilities in general.”
Earlier this month, the National Advisory Committee on Minority Health and Health Disparities recommended against the move, citing concerns that there is no standardized definition of disability and that the broad scope of the disabled population could overwhelm NIH’s existing staff and budget. But there was immediate opposition from hundreds of disability groups, advocates, researchers, and medical professionals, and the committee did not include the recommendation in its final report or take a position on the designation.
Jay Kennedy, a professor of health policy and management at Washington State University, said disability researchers have taken issue with the council’s original logic, noting that while disability is difficult to define, there is considerable complexity in other groups already designated.
“Race is really complicated. Gender identity is really complicated,” he said. “And that’s definitely not a good reason to ignore a population. If we want to be a healthier country, a more inclusive country, we need to create policies that understand and support this often-ignored minority population.”
He hopes the new designation will have a ripple effect by encouraging universities and organizations competing for NIH funding to think more deeply about how to make their workplaces and research projects more inclusive for people with disabilities.
Disadvantages faced by the disability community
Disability advocacy groups say there is too little research on the challenges people with disabilities face when accessing health care. About 3 percent of disability-related research grants across all NIH institutes from 2018 to 2022 also addressed health disparities, according to an analysis conducted by the National Institute on Minority Health and Health Disparities.
Bonilynn Swenor, director of the Johns Hopkins University Center for Disability Health Research, said this comes despite a “vast amount of data” showing that disabled people have worse health outcomes than non-disabled people, including higher mortality rates, chronic pain and mental distress.
While disability itself can have adverse health effects, she said, several socioeconomic factors also contribute. For example, people with disabilities have higher rates of poverty, incarceration and homelessness, as well as lower employment rates — all of which can be barriers to accessing health insurance and health care services, she said.
Other factors that may contribute to poor health outcomes for people with disabilities include limited access to transportation, physical barriers to entering health facilities, and a lack of accessible equipment, such as scales that can measure the weight of people who use wheelchairs.
Swenar, who is disabled himself, has long found it difficult to obtain funding from the NIH to better understand these barriers and address inequities.
“I see these inequities, I see it in the data, and it’s frustrating that we don’t have the funding to do anything about it,” she said. “For the first time, I feel like we’re doing something.”
The pandemic may have added urgency to addressing this issue, as people with disabilities have been disproportionately affected by COVID-19: Some groups, such as people with intellectual disabilities, were at higher risk of contracting and dying from the virus, while others lacked access to crucial COVID-19 testing tools, and some suffered from shortages of medicines and supplies they needed to survive.
“The disproportionate impact of COVID-19 on disadvantaged populations, including people with disabilities, demonstrates the importance of health disparities research,” Eliseo Pérez Stable, director of the National Institutes of Health’s Institute on Minority Health and Health Disparities, said in an email.
Shifting focus from “curing” disorders
The effort to have people with disabilities recognized as a health disparity population is part of a broader effort to improve the health of people with disabilities and change how medical institutions treat them, said Andres Gallegos, chairman of the National Council on People with Disabilities, an independent government advisory body.
He said that for too long, doctors and researchers have focused solely on “fixing” or curing disorders, rather than improving patients’ overall health.
“Having a disability and being healthy are not mutually exclusive,” he said.
This sentiment is reflected in efforts to change the National Institutes of Health’s mission statement, which now states that one of its goals is “reducing disease and disability.”
Following recommendations from members of an NIH advisory committee, the agency proposed changes that would specifically remove the goal of reducing disability and focus on the goal of “optimizing health and preventing or mitigating disease for all people.” The agency is seeking feedback on the proposed changes.
Other changes disability advocates are calling for include increasing the representation of researchers and medical professionals with disabilities across the industry, improving training in medical schools on how to properly treat people with disabilities, and providing more accessible medical equipment in hospitals and medical facilities across the country.
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