Shortly after President Donald Trump was launched on January 20th, he signed the executive order slate, with many having a direct impact on the healthcare industry.
In the order, Trump has concluded all federal diversity, equity, and inclusion (DEI) initiatives created to make spaces more accessible to marginalized communities. He also directed the Bureau of Management and Budget to terminate the DEI program, effectively eliminating all programs and funds related to equity and environmental justice. The CDC also removed the social vulnerability index page that publicly tracked health vulnerability disparities by using census data to measure vulnerability to natural disasters in various socioeconomic groups.
But this federal claim to roll back DEI policies isn't just a hit in Washington, DC. They also block Medicare payments to affirm the gender of minors.
It is still unclear how much these orders will affect healthcare, but industry experts shared concerns with Healthcare Brew about how DEI rollbacks harm patients.
What is the Healthcare DEI Initiative?
Leaders in the healthcare industry meet to see how they can respond to change.
Pamela Abner, Mount Sinai's Pamela Abner and Chief Diversity Operations Officer, has implemented several health equity initiatives at the New York Health System. Her team organized educational sessions and created a health equity data assessment hub that pulls data to better understand patient needs. Teams around the Health System will then launch health equity initiatives to address the care gaps.
For example, Abner's team used patient-favoured linguistic information to connect patients with interpreters.
Clinical trials also benefit from the DEI initiative. This is because it shows that drug therapy tested in a more diverse patient population has better results for more people. For example, a 2021 Chapman University study of 168 patients with multiple sclerosis (MS) found that B cells replicated in 76.2% of black patients six to 12 months after receiving treatment. In other words, drugs did not appear to be very effective in black patients with MS.
“It is very important to have diverse representation in clinical trials, as the overall purpose of the trial is to ensure safety, efficacy and carefully study benefits and risks,” Kim Beich, Chief Impact Officer of the Patient Access Network Foundation, which is seeking increased access to treatment, told Healthcare Brewing.
“I'm not sure what the impact of a particular drug or treatment or device will be if a large band of population is missing,” she added.
Which DEI rollbacks hit healthcare?
One aspect of health care targeted by the Trump administration is gender-affirming care. This is medical and social care that supports gender identity, such as surgery and hormone therapy.
Research has shown that gender-maintaining care supports the mental health of minors. A 2022 study of 35,000 people found that trans and nonbinary adolescents who received gender-maintaining hormone therapy reported lower depression rates (61% vs. 75%) and considered children (44% vs. 57%) or suicide attempts (15% vs. 23%) than children after receiving care.
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However, the Trump administration targeted this type of care by limiting compensation from federally funded health plans.
More than 20 states have restricted access to gender-affirming care since Arkansas first went in 2021, according to the KFF Policy Tracker. Nyu Langone was one of several hospitals cancelling gender-affirming care as of February 1st. However, New York Attorney General Letitia James wrote on Feb. 3 that if they cancel their appointment, the hospital could be in violation of state law.
A group of nonprofits, including the American Civil Liberties Union (ACLU), is suing the Trump administration for the ban.
“For decades, doctors and other healthcare professionals have followed well-established healthcare standards to provide care that helps transgender youths thrive,” said Alex Sheldon, executive director of GLMA, a national organization of LGBTQ+ health professionals, in a February 4 release from an ACLU reporter. “Now, extreme political agendas are trying to overturn that expertise, putting youth and their providers at risk.”
The FDA page on clinical trial diversity is also offline. This includes the title “Diversity Action Plans Necessary for Specific Clinical Trials.”
Baich expressed concern when testing medicines and devices as to how this prevents wider expression.
“Without the federal mandatory guidelines to recruit diverse communities, diverse groups and resources to support them… the effort is really insufficient,” she said. “It's really important. Diversity really improves the medicine.”
What's next?
Still, experts said it is unclear how some of these changes will be enacted.
Abner said he was particularly concerned about the NIH's continued funding. After the Trump administration announced extensive cuts in NIH funding, concerns have risen that life-saving drugs will become more difficult to access, experts told NBC News. But on February 10, a federal judge in Massachusetts ordered a nationwide suspension of cuts until the court ordered otherwise.
“People think Day is just for black and Latino people, but everyone benefits from Day, including white men,” she said. For example, she said Mount Sinai's program works to support veterans and disabled patients, and that these patients also represent all racial and gender groups.
She said that internal data analysis work on Mount Sinai will continue, but “people aren't necessarily revealing everything and the impact.”
Baich said she would “double down” and do her job as much as possible to make sure there is more equitable access and expression in clinical trials.
“The needs people have, whether they have a rollback in the DEI or not, will continue to exist,” she said.
