How DEI rollbacks are affecting healthcare

Soon after President Donald Trump was inaugurated on Jan. 20, he signed a slate of executive orders and many directly affected the healthcare industry.

Among the orders, Trump ended all federal diversity, equity, and inclusion (DEI) initiatives that had been created to make spaces more accessible for marginalized communities. He also directed the Office of Management and Budget to end DEI programs, effectively eliminating all programs and funding related to equity and environmental justice. The CDC also took down its page for the Social Vulnerability Index, which publicly tracked health disparities by using Census data to measure vulnerability to natural disasters for different socioeconomic groups.

But this federal charge to roll back DEI policies isn’t just hitting Washington, DC: It also blocks Medicare payments for gender-affirming care for minors.

While it is still unclear how much these orders could impact healthcare, industry experts shared their concerns with Healthcare Brew about how DEI rollbacks may harm patients.

What are healthcare DEI initiatives?

Leaders around the healthcare industry are meeting to see how they can respond to the changes.

Pamela Abner, VP and chief diversity operations officer at Mount Sinai, runs several health equity initiatives at the New York health system. Her team hosts educational sessions and created a health equity data assessment hub that pulls data to better understand patient needs. Teams around the health system then launch health equity initiatives to address gaps in care.

For example, Abner’s team used patient-preferred language information to connect patients with interpreters.

Clinical trials also benefit from DEI initiatives, as research shows medications tested on more diverse patient populations have better results for a wider group of people. For example, a 2021 Chapman University study of 168 patients with multiple sclerosis (MS) found that six to 12 months after receiving treatment, B cells repopulated in 76.2% of Black patients, compared to 33.3% of white patients. In other words, the medications didn’t appear to be as effective in Black patients with MS.

“It’s critically important to have diverse representation in clinical trials because the whole purpose of the trials are to ensure the safety, the effectiveness, and really make sure that the benefits and the risks are carefully studied,” Kim Baich, chief impact officer at Patient Access Network Foundation, a nonprofit that seeks to boost access to treatments, told Healthcare Brew.

“If we’re missing a huge swath of the population…then we’re not quite sure what the impact of a particular drug or therapy or device is going to be,” she added.

Which DEI rollbacks have hit healthcare?

One aspect of healthcare the Trump administration has targeted is gender-affirming care, which is medical and social care that supports gender identity like surgeries or hormone therapy.

Research has found that gender-affirming care supports the mental health of minors. A 2022 35,000-person study found that trans and nonbinary youth who had received gender-affirming hormone therapy reported lower depression rates than those who had not (61% vs. 75%) and fewer children considered (44% vs. 57%) or attempted suicide (15% vs. 23%) after receiving care.

But Trump’s administration targeted this kind of care by restricting coverage from federally funded health plans.

Over 20 states have restricted access to gender-affirming care since Arkansas first did so in 2021, according to a KFF policy tracker. NYU Langone was one of several hospitals to cancel gender-affirming care for children as of Feb. 1. New York Attorney General Letitia James, however, wrote in a letter on Feb. 3, that hospitals may be in violation of state law if they cancel appointments.

A group of nonprofits, including the American Civil Liberties Union (ACLU), is suing the Trump administration over the ban.

“For decades, doctors and other health professionals have followed well-established medical standards to provide care that helps transgender youth thrive,” Alex Sheldon, executive director of GLMA, a national organization for LGBTQ+ health professionals, said in a Feb. 4 ACLU press release. “Now, an extreme political agenda is trying to overrule that expertise, putting young people and their providers in danger.”

FDA pages on clinical trial diversity are also offline now, including one titled “Diversity action plans required for certain clinical trials,” Stat reported.

Baich expressed concerns about how this could prevent broader representation when testing medicines and devices.

“Without federally mandated guidelines for recruiting diverse communities, diverse populations, and the resources to support that then…the efforts are really going to fall short,” she said. “It’s really critical. Diversity really does improve medicine.”

What’s next?

Still, experts said it’s unclear how some of these changes will be enforced.

Abner said she is concerned about ongoing NIH funding in particular. After the Trump administration announced widespread cuts to NIH funding, concerns rose that life-saving medications would become harder to access, experts told NBC News. On Feb. 10, though, a federal judge in Massachusetts ordered a national pause on the cuts until the court orders otherwise.

“People think that DEI is just for Black and Latino folks, but everyone benefits from DEI, including white males,” she said. For example, she said, Mount Sinai’s programs work to support veterans and disabled patients, and these patients also represent all racial and gender groups.

She said Mount Sinai’s internal data analytics work will continue, though “folks still aren’t necessarily clear on everything and the ramifications” following the executive orders.

Baich said she is going to “double down” and work as much as she can to ensure there’s more equitable access and representation in clinical trials.

“Whether there’s a rollback on DEI or not, the needs that people have are going to continue to exist,” she said.