Ayden Scheim, an epidemiologist and senior scholar of public policy at the Williams Institute, part of UCLA’s School of Law, had a 4-year, $2.4 million National Institutes of Health (NIH) grant to investigate a question of health equity: Does structural stigma against Latino and LGBTQ people inhibit their access to HIV/AIDS prevention and treatment?

Scheim knew his project description included buzzwords that run counter to the current administration’s priorities — phrases such as “structural racism” and “gender and sexual minority.”

Still, he was jolted to receive a letter in March — just days before hiring a full-time project manager — that terminated the grant. The NIH letter characterized Scheim’s work as “so-called diversity, equity, and inclusion studies” and claimed such research “ultimately [does] not enhance health, lengthen life, or reduce illness.”

Scheim’s reaction, he said, was rage and frustration. “We just had to pause everything. You need people to do the work, and we couldn’t pay people to do it.”

Science Research Funding Remains Shaky

It was a small consolation to know he was one of thousands of researchers in health, science, and medicine whose work was also cut short. The NIH and the National Science Foundation (NSF) withdrew or froze nearly $4 billion in funding, particularly targeting work related to health equity and disparities.

While some of that funding — including Scheim’s grant — was ultimately reinstated after a US District Court judge’s ruling in a suit filed by the American Public Health Association (APHA), the American Civil Liberties Union, and the Center for Science in the Public Interest, future funding remains shaky because the White House’s proposed spending plan for next year would dramatically slash those agencies’ budgets.

And even with that win in a district court, the government agencies that support health and science research are still on the ropes. Between sweeping layoffs and mandatory retirements, the NSF has lost roughly a third of its workforce this year because the administration proposed to slash the agency’s $9 billion budget by more than half. The NIH — which has shed almost 3000 employees, or 14% of its workforce — faces proposed cuts of 40%, or $18 billion. This year the two agencies combined have awarded about 6500 fewer grants than usual in areas ranging from minority health (down 61%) to social, behavioral, and economic sciences (down 46%).

To Scheim, the grant terminations and proposed budget cuts send a clear message to women, people of color, sexual and gender minorities, and those with disabilities that “their lives and their well-being are not valued. And it’s a message to the research community discouraging people from doing this kind of work.”

A Rapid Response From Foundations

Some private foundations are trying to convey the opposite message.

Following the wave of federal grant terminations in March, the San Diego-based Prebys Foundation announced $7 million in medical research grants — emergency support for biomedical research at seven anchor institutions including San Diego State University and the Salk Institute for Biological Studies.

“We know that we’re all better off when everyone, regardless of ZIP code, race, ethnicity or gender, has their needs met,” said Crystal Page, a Prebys spokesperson.

The Spencer Foundation partnered with three other grant-makers, namely, the Kapor Foundation, the William T. Grant Foundation, and the Alfred P. Sloan Foundation, to provide just over $2 million in rapid response bridge funding for projects related to STEM education.

And the Breast Cancer Research Foundation (BCRF) announced an additional $3 million in funding for 17 early-career investigators whose research was delayed or disrupted by federal funding cuts. It also provided emergency funding for the Wisdom Trial, a study to improve risk-based breast cancer screening recommendations, which was targeted for funding cuts because it aimed to recruit diverse populations.

“When federal funding falls short, it’s not just numbers on a spreadsheet,” BCRF President Donna McKay said in an email. “That translates into experiments paused, data lost, and young investigators leaving the field…BCRF created emergency bridge funding to prevent exactly that: to keep discoveries alive when other support falters.”

Supreme Court Ruling Is Mixed

The APHA lawsuit, filed in April, argued that the terminations of about 800 NIH grants — many of which addressed diversity, equity, and LGBTQ health — were unjustified and politically driven.

The cuts, said APHA Executive Director Georges C. Benjamin, MD, had “devastating” impact. “People stopped in the middle of recruiting candidates for studies or in the middle of doing studies. People had ordered equipment. All that came to a screeching halt. People would show up for clinical care only to be told, ‘We can’t see you.’”

And while Benjamin was pleased with the judge’s June order that the grants be reinstated, he was dismayed with a mixed ruling in August by the Supreme Court; the justices said the US District Court for the District of Massachusetts likely lacked jurisdiction to review the termination of NIH research grants, though they also declined to stay that court’s conclusion that the NIH directives were “arbitrary and capricious.”

Benjamin worries about continued government pushback against research on health equity. “They were trying to frame [such studies] as reverse discrimination,” he said. “But health inequities remain. And when you do research on specialized populations, you learn a lot about the general population.”

Philanthropy Still ‘Drop In the Bucket’

When the Council on Foundations surveyed its members in March about what they were doing in response to White House or Congressional actions, 80% said they were making or considering at least one change, including collaborating with other funders, shifting grant-making priorities, or boosting flexibility in grant-making processes. Some are working to preserve the national databases used to support health research.

But all of the foundations’ efforts can’t close the gap. The federal government typically supplies about 25% of all medical and health research funding; foundations, associations, and societies provide just 1.2%.

“We all know that here in the US, even if you banded every single philanthropy together, it’s a drop in the bucket compared to what the federal government was funding,” said Leah Bricker, director of programs at the Spencer Foundation.

For Scheim and other researchers — and for the people who might ultimately benefit from their work — the landscape remains tenuous. “For all NIH grants, the funding is released 1 year at a time,” he said. “Now none of us trust that, next year, the funding will actually show up.”

Anndee Hochman is a journalist, essayist, storyteller, and writing teacher whose work has appeared in WebMD, Health, OUT, and JAMA.