Brittany Charlton, an associate professor at Harvard Medical School and renowned expert in LGBTQ health, has described the goal of her research as “trying to improve health care for a segment of the population that had been largely ignored despite a greater-than-average rate of poor outcomes.”
That’s a succinct description of health disparities research. Addressing disparities entails figuring out why there’s a failure in health or health care somewhere and how to fix it. Such failures can depend on how old you are, how wealthy, if you have a disability, how much access you have to a healthy diet, and so on. And some occur among particular racial or ethnic groups and among those who are sexual and gender minorities.
Addressing disparities entails figuring out why there’s a failure in health or health care and how to fix it.
But the National Institutes of Health terminated research related to those latter groups, including Charlton’s, stating that President Donald Trump’s NIH director, Jay Bhattacharya, found such work “not scientifically valuable.”
“This represents racial discrimination and discrimination against America’s L.G.B.T.Q. community. That’s what this is,” U.S. District Judge William Young wrote in his ruling against the NIH this week. In response to a lawsuit the American Civil Liberties Union, the American Public Health Association and several other organizations filed against the NIH and the Department of Health and Human Services and their directors, Young found that the NIH violated federal law by withdrawing funding from thousands of active NIH research grants. Many grants were related to research on sexual and gender minority health, and programs to enhance the diversity of the research workforce.
Contrary to Bhattacharya’s assertion, the research projects NIH canceled had already been deemed scientifically valuable by an independent panel of experts charged with determining if the research will have a significant impact on health, if it is scientifically rigorous, and if the study can be conducted as proposed by the qualified research team. That process of review is intensive, as I’ve previously explained. Even grants for trainee scientists are held to an extremely high standard.
Further, it is beyond ignorance to think that such research is harmful or, as the government claimed, discriminatory. Studying health disparities isn’t about promoting one group over another. Figuring out when, and for whom, things aren’t working and figuring out ways to fix what isn’t working is part of the routine process of understanding all health and health-related interventions, and making them work better, more comprehensively and yes, DOGE, more efficiently. That’s why the work of evaluating and reducing health disparities is still written into the strategic priorities of the NIH director. Sometimes the study of differences reveals deep, entrenched, systematic disadvantages experienced by one group or another. These are health inequities, and they are challenging and critical to acknowledge and address because the failure here goes well beyond the design of an individual intervention.
One of my own research projects studied an ambitious Oregon Medicaid policy to improve the care of back pain, emphasizing nonpharmacological treatments such as physical therapy and massage over opioids, which had been shown to have little benefit and potential harm. Our team found that while many Oregonians on Medicaid shifted their care to nonpharmacologic modalities, Black, American Indian/Alaska Native and Hispanic enrollees did so less often.
It’s not discrimination for us to try to find out why the policy didn’t work for everyone and to try to figure out the barriers that kept some people from accessing safe and evidence-based care. These questions are the subject of our current study. Our hope is that the next time such a policy is enacted, it will have a greater impact in reducing pain and improving health outcomes across all populations.
A 1992 commentary in the Hastings Center Report called attention to the history of exclusion in medical research with the biting headline “Wanted: Single, White Male for Medical Research.” It called out the discrimination that left many out of the benefits of scientific progress. It was in recognition of that regrettable history that the Office of Minority Health and the Office of Research on Women’s Health were established in 1986 and 1990 respectively. But evidence suggests we continue to have a great deal of work to course-correct.
A 1992 commentary called attention to the history of exclusion in medical research with the biting headline “Wanted: Single, White Male for Medical Research.”
It’s right to be concerned for groups experiencing poor health outcomes. That should be enough to support the kind of research the NIH is systematically slashing. But the lowest common denominator reason to support disparities research is a selfish one: figuring them out helps whole lines of science that benefit us all. Someone on an airline flight in seat 5D would never argue that an air leak next to 10A doesn’t matter to them.
Earlier this month, NIH employees issued an open letter — a rare move for civil servants — rebuking Bhattacharya for these and other actions, urging him to “restore grants delayed or terminated for political reasons so that life-saving science can continue.” Now a court has also ruled against slashing the grants.
Meanwhile, scientists across the country simply want to return to their health-promoting, lifesaving work. In ordinary times, no one would stand in their way.