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Medscape
6 days ago
- Health
- Medscape
Experts Advise on How to Study DEI in Cancer
As the largest financial supporter of medical research in the US, the National Institutes of Health (NIH) has helped uncover health disparities in cancer incidence, prevalence, and outcomes. Grants funded with that federal money aimed at reducing disparities have also included initiatives that enhanced the health of all patients with cancer. An example of these in the ACCURE study — Accountability for Cancer Care Through Undoing Racism and Equity — a system-based intervention to reduce Black-White disparities in treating early stage lung cancer that's now featured on the HDPulse site as one of the 23 interventions that improves minority health. Not only does that intervention resolve disparities between Black and White patients but 'it actually also shows markedly improved care for everyone,' said principal investigator Sam Cykert, MD, professor emeritus of The University of North Carolina at Chapel Hill (UNC). But since January, an executive order by the Trump administration has prohibited nearly all funding related to diversity, equity, and inclusion (DEI). It's not possible to characterize how much of that funding was specific to DEI-related research, but a total of $1.8 billion in overall NIH funding has been terminated through early April. That includes $223,566,041 in grants at the National Institute on Minority Health and Health Disparities (NIMHD), representing 8.9% of its funding from the NIH, and equivalent to 29.6% of all its grant funding. The National Cancer Institute had 0.6% of its grants cancelled, a total of $180,774,481. In June, a federal judge struck down the directive against using NIH funding for DEI-related research, but the Trump administration is likely to appeal the decision. Medscape Medical News reached out to the US Health and Human Services (HHS) for more information on the grants and amount of money cancelled and whether the department leadership has concerns about the impact of cancelled funding on cancer outcomes for marginalized populations. An HHS spokesperson told Medscape Medical News through email that the department 'remains committed to advancing cancer research and other serious health conditions' but does not see DEI-related research as part of that commitment. 'Unfortunately, this work was previously funded under an inappropriate and ideologically-driven — rather than scientifically driven — DEI program under the Biden Administration,' the spokesperson wrote. 'In the future, these types of programs will be reviewed based on their scientific merit rather than on DEI criteria.' Experts, however, emphasized the importance of ongoing research in this area. So how can they continue this work that they say is integral to improving healthcare for all? Alternative Sources of Funding Clinicians acknowledged significant barriers to conducting DEI-related medical research, but they also provided a glimmer of hope. In interviews with Medscape Medical News , they gave suggestions for how to find funding in these uncertain times. Cykert, who is also program director emeritus of UNC's Program on Health and Clinical Informatics, spent more than 30 years studying health disparities in cancer. He pointed out that the American Cancer Society has always been a strong funder in this area. 'Health equity across the cancer continuum' is one of their research priority areas, and they can often be competitive with what the National Cancer Institute pays. But he acknowledged that private foundations cannot close the gap left by NIH funds no longer available. 'We're going to have to start looking at alternate funding sources, at foundations like the American Cancer Society, the Robert Wood Johnson Foundation, Susan G. Komen, and private donors that increasingly are giving funds for cancer research,' said Yolanda VanRiel, PhD, RN, the department chair of Nursing at North Carolina Central University and a part-time patient placement coordinator at First Health of the Carolinas-Moore Regional Hospital. 'There are philanthropic arms of health systems that people don't think about,' she said. 'Industry partners, especially those that are focused on community engagement and patient-centered outcomes, are also viable.' She also mentioned PCORI (the Patient-Centered Outcomes Research Institute), and the Oncology Nursing Foundation. In addition, the Michelson Medical Research Foundation gives awards that focus specifically on immunology, vaccines, and immunotherapy. 'You can [also] collaborate with community-based organizations, and that can also open doors to funding that's tied to local or regional health equity initiatives as well,' VanRiel said. These options have always been there, but people have generally tried for NIH's big pot, she said. 'I think a lot of the time, when you're in specialty areas, you know about these, but it's time to make everybody realize that you can come back to the American Cancer Society,' she continued. 'When a lot of people think of Susan G. Komen, they think about the walk or other things, but they give out grants too.' Don Dizon, MD, a professor of medicine at Brown University's Warren Alpert Medical School, director of the Pelvic Malignancies Program at Lifespan Cancer Institute, and head of Community Outreach and Engagement at Legorreta Cancer Center, Providence, Rhode Island, said he has several colleagues whose funding has been pulled. Dizon, whose research includes health disparities among LGBTQ populations and advocacy on behalf of sexual and gender minoritized communities, called for 'more leadership from the institutional side' and for industry to step up. 'I think this is where industry can flex its muscle and say, 'We truly believe that addressing disparities when it comes to clinical trials is an important endeavor to ensure community health,'' he said. Advice for Wording Grant Applications VanRiel, Dizon, and Cykert also offered their thoughts on how to word federal grant applications to increase the likelihood of getting approval within the expectations of updated federal guidelines. 'I would emphasize that I'm going to make care better and cheaper for everyone,' Cykert said. 'Then we'll do a subgroup analysis to see if we're missing anybody.' 'We have proven that when you do system-wide interventions that reduce disparities, you actually improve care for everybody because the care for White patients isn't perfect in this medical system either,' he noted. Dizon calls for researchers to focus on the existing data in disparities research. 'The way forward is not to focus on the idea of advancing diversity, advancing equity, advancing inclusiveness [in grant applications] but to put forward a rationale to identify and address the disparities that exist in healthcare,' he said. He also suggested researchers look closely at the language in federal requests for proposals, as well. 'Be very careful to mirror the language that they're using because I do think they still want to do work in improving health outcomes for populations,' Dizon said. VanRiel recommended writing grants focused on the social determinants of cancer outcomes or geographic disparities, such as individuals in the South who face access barriers. 'Our responsibility as researchers is to produce knowledge that improves care for all patients,' she said. There still may be funding from the NIMHD, but the future of that institute remains unclear since the proposed 2026 budget for HHS noted that the NIMHD will be eliminated. Do you have ideas on how to continue doing work to improve research and, ultimately, care for underserved communities? Share those ideas at news@ .
CNBC
30-04-2025
- Health
- CNBC
RFK Jr. is gutting minority health offices across HHS that are key to reducing health disparities
Robert F. Kennedy Jr.'s overhaul of the Department of Health and Human Services involves deep cuts to several divisions that help protect and improve the health of minority and underserved populations and eliminate health disparities in the U.S., CNBC has learned. Kennedy, the Health and Human Services secretary, has gutted at least seven minority health offices across the department, according to people familiar with the matter, who requested anonymity to speak freely. HHS has laid off a significant share of workers at those offices, or in some cases all of them, along with their directors, the people said. The affected units include the HHS Office of Minority Health and the National Institute on Minority Health and Health Disparities, or NIMHD. The cuts also hit offices with similar functions at the Food and Drug Administration, the Centers for Disease Control and Prevention, the Centers for Medicare & Medicaid Services, the Health Resources and Services Administration, and the Substance Abuse and Mental Health Services Administration, according to the people. Health policy experts told CNBC that deep cuts to those programs could widen existing health disparities in the U.S., undoing years of progress toward addressing them. Over time, that could worsen health outcomes for already underserved groups, threaten overall public health, strain the U.S. health-care system and drive up health-care costs. "It will have negative health impacts, obviously, for groups that they're focused on, so racial and ethnic minorities, but I think what gets missed in the story is it ultimately impacts all of us, no matter what your background is," Dr. Stephanie Ettinger De Cuba, research professor of health law, policy and management at Boston University, told CNBC. "It's not a zero-sum game. So I think that's what is deeply disturbing to me, as we are going to see people get hurt," she said. "Decimating or cutting staff from these offices ultimately makes it worse for everyone." The Trump administration can't shutter the affected offices entirely, which would be against the law since they were authorized by the Affordable Care Act more than a decade ago, the people said. The exact fate of each office and the NIH institute is unclear, they added. The administration likely hopes to at least "narrow the scope" of what NIMHD and the agency offices do, curtailing their authority and limiting resources, said Brandyn Churchill, professor of public administration and policy at American University. The cuts come as health disparities remain a major challenge in the U.S., affecting not only people of color but also rural residents, low-income communities and individuals with disabilities, among several other groups. These communities often face worse health outcomes – such as lower life expectancy and higher rates of infant mortality and chronic disease – and more limited access to care and other resources than the U.S. population as a whole. The Covid-19 pandemic deepened many of these gaps, highlighting how the long U.S. history of exclusionary policies and systemic issues such as poverty and racism contribute to unequal health outcomes across the country. Health policy experts stress that addressing those disparities leads to stronger overall public health, as healthier communities improve outcomes for everyone. It could also relieve a huge economic burden on the U.S: a 2023 study funded by NIMHD found that racial and ethnic health disparities cost the U.S. economy $451 billion in 2018. Kennedy is consolidating divisions and slashing 10,000 jobs at HHS, a $1.7 trillion agency that oversees vaccines and other medicines, scientific research, public health infrastructure, pandemic preparedness, and food and tobacco products. HHS also manages government-funded health care for millions of Americans – including seniors, disabled people and lower-income patients who rely on Medicare, Medicaid and the Affordable Care Act's markets. Kennedy plans to create a new HHS agency called the Administration for a Healthy America, which will combine several existing offices. That includes HRSA, SAMHSA, the Office of the Assistant Secretary for Health, the Agency for Toxic Substances and Disease Registry, and the National Institute for Occupational Safety and Health. A leaked 64-page preliminary budget document also indicates that the HHS Office of Minority Health would fall under that new agency, according to several reports. But that proposal, which would slash the HHS budget by a third, or roughly $40 billion, requires congressional approval. HHS did not immediately respond to a request for comment. While the breadth of the cutbacks varied at agencies within HHS, the minority health agencies across the departments will now be only a fraction of their former size. All 40 staff members at the CMS Office of Minority Health were laid off, according to the people. CMS plans to appoint a new director for that unit, CNBC previously reported. But current Director Martin Mendoza has not resigned from his role, the people said. The office works with local and federal partners to eliminate disparities in health coverage, aiming to ensure that minority and underserved populations can access Medicare, Medicaid and Affordable Care Act marketplace plans. It also conducts research and analysis to help lower costs and reduce the incidence and severity of chronic diseases in the U.S. Nearly all staff at the CDC's Office of Minority Health were cut, according to the people. To adhere to the letter of the law, the Trump administration is considering reconstituting that unit and the Office of Women's Health so that each office would be made up of at least one director or a very small group of employees, the people said. The agency's Office of Minority Health works across CDC to promote research of health disparities and create programs to improve the health of racial and ethnic minority groups. At the FDA's Office of Minority Health and Health Equity, all staff were cut, the people said. The future of that office is unclear. The unit focuses on efforts such as increasing clinical trial diversity, improving transparency around how medical products affect different populations, and creating health resources tailored to a range of languages and cultures. No staff are left at HRSA's Office of Health Equity after the layoffs, as well as some retirements and reassignments, according to the people. That office leads efforts to reduce disparities in health-care access, quality and outcomes through HRSA, which focuses on people who are uninsured, geographically isolated, or economically and medically vulnerable. The future of that office is also unclear, apart from the Trump administration's plans to fold HRSA into Kennedy's new agency. The same goes for SAMHSA's Office of Behavioral Health Equity, which saw all remaining staff cut except for a new, recently hired director, according to the people. The office also had a retirement and one worker on probation who was put on administrative leave. The office works to ensure that SAMHSA's resources for mental health and substance abuse treatment, including grant programs and other initiatives, are equitably distributed across all communities and populations. Roughly a third of staff are gone at NIMHD, some of whom were laid off and others who left due to early retirements and buyouts, the people said. Some workers on probation were put on leave several weeks before Kennedy started cuts, they said. The institute's deputy director accepted an offer to be acting director in the short term, the people added. NIMHD, which is part of the National Institutes of Health, works to reduce health disparities through conducting and funding research and developing new programs. The HHS Office of Minority Health also faced cuts, though it's unclear how many staff were impacted, the people said. That office leads the federal effort to improve health outcomes for racial and ethnic minority groups, developing policies and programs and providing funding. It will likely take several months to a year before the U.S. sees direct consequences from the cuts to NIMHD and the offices, said Terry McGovern, professor at the CUNY Graduate School of Public Health and Health Policy. But the staff reductions could cause the U.S. to lose out on crucial data, which is the cornerstone for addressing health disparities, according to Samantha Artiga, director for the racial equity and health policy program at KFF, a health policy research organization. Artiga said data and research are essential for pinpointing where disparities exist, understanding their root causes, crafting effective solutions, and tracking progress over time. For example, data can reveal whether certain groups experience worse surgical outcomes or wait longer at the emergency room, or if a vaccination program is being equitably distributed across regions. "Without focused data and research, those disparities may remain unseen and unaddressed, creating blind spots," Artiga said, adding that the U.S. would eventually have to rebuild that knowledge in the future. The fate of many of the grants that NIMHD and some of the offices provide is unclear. That includes $11.6 million in recent grant awards from HHS' Office of Minority Health to 20 organizations for a four-year initiative to identify strategies that increase the use of preventive health services in communities. But if offices cut back that funding or stop it altogether, it could also weaken the nation's ability to reduce health disparities, Boston University's Ettinger De Cuba said. Community-based organizations rely on federal money to deliver culturally tailored care to different groups, and could be forced to scale back or shut down programs. The loss of grants could also stall research, innovation and public health interventions by outside entities, such as universities, health-care systems and social service organizations. "Philanthropy is not able to step up at this level long term. The only actor that's able to do that is the government," Ettinger De Cuba said. Nathan Boucher, research professor at Duke's Sanford School of Public Policy, added that the cuts will "degrade any effort of these larger governmental organizations to have any accountability when it comes to protecting the people they help and serve every day." While Kennedy has said his cuts are focused on making HHS more "responsive and efficient," Boucher said targeting minority health offices could do the opposite. "I actually think it's an efficiency argument to be able to have these minority health offices, because it allows you to identify and target some real problem areas and use taxpayer dollars in the most efficient way possible," said Boucher.
