At Bryn Mawr College, Cindy Sousa researches how trauma, violence, and climate change affect low-income communities, immigrants, and refugees, with the goal of improving health care and social supports in underserved communities.

But Sousa is worried about the future of her work following a flurry of executive orders that she and many of her colleagues fear could compromise research integrity and upend years of work to make health care more accessible to everyone.

“How much do I pivot? Do I call it a disaster and not a climate-induced disaster? To pretend we don’t know why a problem exists is a breach of scientific integrity,” said Sousa, a professor of social work and social research at Bryn Mawr.

She had planned to submit a grant proposal to the National Institutes of Health this month, but is now unsure if it’s worth it. Like the other researchers interviewed by The Inquirer, Sousa said she was speaking in a personal capacity, not on behalf of the academic institution where she works.

In its first weeks, President Donald Trump’s administration has brought havoc and uncertainty to the research community with orders to remove references to gender identity and diversity on public health websites; a threatened freeze on federal funding; directives to shut down diversity, equity, and inclusion efforts; and new restrictions on gender-affirming care for youth — and further targeted the trans community on Wednesday with another order threatening to block federal funding at schools that allow trans students to play on girls’ and women’s sports teams.

Many of the new White House actions are being challenged in court, but the impact is already affecting the ongoing work of Philadelphia-area researchers at both private and public institutions.

“I fear we’re going to lose four years of science and knowledge on health issues around people who need it most,” said Perry Halkitis, the dean of Rutgers School of Public Health and a health equity researcher. “It’s going to have an impact on a generation of knowledge.”

Health equity has become a hallmark of public health in recent years, after the COVID-19 pandemic highlighted stark gaps in care and overall health. Virtually all major health systems have invested heavily in efforts aimed at addressing the underlying social and economic issues that contribute to worse health outcomes for certain groups of patients.

But in the administration’s early weeks, the Philadelphia region’s largest medical research institutions have been quiet about how they will — or won’t — adjust their health equity plans in the face of federal pushback.

Penn Medicine, Jefferson Health, Children’s Hospital of Philadelphia, and Fox Chase Cancer Center did not respond to questions from The Inquirer about their plans. Temple Health declined to comment.

Only Virtua Health affirmed its commitment to addressing health disparities and “ensuring that everyone has a fair and just opportunity to achieve their full health potential.”

Meanwhile, researchers are banding together to unpack how the deluge of executive orders will affect their work, and to prepare for a tough four years that they expect to be marked by funding challenges and ideological friction.

Defending Public Health, a group of academic, medical, and community stakeholders created by a Yale professor, already has more than 2,700 members. And nonprofit organizations like the Robert Wood Johnson Foundation, a Princeton-based philanthropy that funds national health-care research, are doubling down on their commitment to funding and supporting research that advances health equity.

“We’re not stepping back, or diminishing, or attempting to hide the fact that we’re very concerned about what these actions mean for public health,” said Lauren Smith, vice president of strategic portfolios at the Robert Wood Johnson Foundation. “It has intensified our resolve.”

Shifting priorities away from health equity

The directives on DEI and gender identity followed a confusing plan to freeze federal funding for a wide range of programs that did not align with the administration’s priorities. The White House has said its directives are intended as a temporary pause while officials evaluate spending.

A memo from the White House budget office ordering the freeze was later rescinded, but it set off panic in the research community, where more than $1 billion in projects rely on federal grants in Philadelphia alone.

Patrick Smith, a Drexel Ph.D. candidate who studies how eviction affects health, said he worries that the Trump administration targeting health equity work signals a shift in priorities that he fears will ultimately harm vulnerable Americans.

“It’s a sad day for people who have grown up under the idea that the U.S. is a nation that is imperfect, but progressively and incrementally trying to get better,” Smith said.

The rapid-fire changes and inadequate communication have been distracting, said Ari Friedman, an assistant professor of emergency medicine at the University of Pennsylvania, whose research is supported by two federal grants.

Friedman’s research team spent a significant amount of time last week navigating concerns about Trump’s executive orders and proposed funding freeze, rather than discussing progress in their studies about geriatric abdominal pain and improving treatment for cognitive impairment.

At a conference for early-career scientists near the NIH’s headquarters last week, Friedman was disheartened and frustrated to hear how the government’s actions are affecting young scientists and researchers, who had never experienced such pushback from the federal government.

“A brilliant scientist, really a promising mind of the next generation, got up on the mic at a panel and asked if it was even worth doing science anymore,” he said.

Future of health equity research

Seasoned researchers say this is not the first time they have faced challenges from the federal government.

In the early 2000s, Congress threatened to withhold or claw back funding for dozens of studies related to sexual behavior, including research on HIV that involved Halkitis, the Rutgers dean. The threat never materialized, but securing new federal funding became difficult, forcing Halkitis and his colleagues to turn to private foundations and investors, he said.

Nonprofits are again stepping up their efforts.

The Robert Wood Johnson Foundation is expanding its investment focus and preparing to provide legal support to grantees. These steps have long been part of the organization’s goals and are being executed urgently, as the meaning of DEI becomes warped, misinterpreted, and politicized, said Lauren Smith, the foundation official, who previously served as chief of health equity at the CDC Foundation, a global public health nonprofit that helps the Centers for Disease Control and Prevention partner with other organizations.

The foundation hopes to restore a better understanding of what DEI and health equity mean: namely, that everyone has a fair opportunity to be healthy, she said.

“That’s what this is about,” Smith said. “We can’t and shouldn’t accept preventable gaps in health care because it isn’t good for any of us.”

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