‘Unsettling:’ Federal DEI Ban a ‘Step Backward’ for Alzheimer’s Trials

By Simon Spichak and Alexandra Marvar | January 30th, 2025

A Trump executive order has banned DEI initiatives across the federal government. Scientists say the move could undermine trial diversity and derail the quest for Alzheimer’s treatments — and that trial sites need to step up.

Two days after President Donald Trump took office, sweeping bans — mostly temporary — went into effect across the U.S. National Institutes of Health, impacting communications, meetings, speaking engagements, research publication, social media updates, grant funding, and more. Simultaneously, an executive order terminated diversity, equity, inclusion, accessibility offices and positions (shorthand, DEI/DEIA) initiatives across the Federal government on the basis that this work is “radical,” “wasteful,” and “immoral.” 

DEI programs generally exist, following the Civil Rights movement and the desegregation of the United States after slavery, to help ensure that workforces, faculties, student bodies, armed forces, and other entities aren’t unanimously male or white, that groups representing the U.S. also represent its diversity in gender, race, sexual orientation, and religious beliefs. Accessibility programs and initiatives followed the Americans with Disabilities (ADA) Act in 1990, prohibiting discrimination against people with disabilities and helping ensure they are able to participate in public life, have a fair shot at employment and access local and state government resources. Jobs, departments, and initiatives foster these values, including at the federal level.

“Americans deserve a government committed to serving every person with equal dignity and respect, and to expending precious taxpayer resources only on making America great,” the White House wrote in a statement as they issued a mandate for the termination of hundreds (likely thousands) of jobs and positions across the government and education system, the termination of any “equity-related” grants or contracts; and the end of any DEI or DEIA performance requirements for government contractors, grantees, and employees. 

“It’s a big step backward for the
quality of the science.”

Alongside the overarching ban, a separate federal memo stipulated that any National Science Foundation grants — even those awarded before this new administration took power — would cease if grant recipients’ activities “use or promote the use of diversity, equity, inclusion, and accessibility (DEIA) principles and frameworks.” 

Boston University professor of epidemiology Maria Glymour, who studies Alzheimer’s disease, is one of many scientists who worries that a national mandate to not only deprioritize but eliminate DEI from every angle will delay how fast we can find better treatment and prevention strategies for Alzheimer’s and other pressing public health concerns. It’s “a big step backward for the quality of the science,” she said. 

A backslide for Alzheimer’s research

Studying a diverse population ensures that scientists get the complete picture of how a disease works and that diagnostic tools and treatments will work for everyone — not just a selective subset of the population that doesn’t accurately represent the larger group. In cardiovascular research, for example, the inclusion of women in research studies helped doctors learn that the signs of a heart attack differ between men and women, ultimately leading to life-saving guidance. 

Alzheimer’s is one of many diseases that impacts men differently from women, and Black, Latino, Native American, and Asian populations differently from white populations. Scientists are studying everything from different vascular structures, to hormonal factors, to genetic variants, to social risk factors that trigger the disease differently in these different groups — and how treatments might be effective in one group and not in another.

Some diagnostics work better in some racial groups than others, for example. Blood tests for the disease, which were overwhelmingly tested and developed in white populations, don’t always work well for Black patients. Older Black Americans who develop Alzheimer’s also have a high prevalence of untreated hypertension, which influences amyloid plaques and could affect how well these patients respond to anti-amyloid treatments, explained Glymour.

Some people are at greater risk of side effects from new drugs than others: a revelation that wouldn’t have been made without diversity among clinical trial participants. 

“The more diversity we have, the more
we can understand whether the treatments
actually work across different settings.”

For example, the rates of side effects like brain swelling and bleeding dubbed amyloid-related imaging abnormalities (ARIA) — a potentially serious side effect of anti-amyloid drugs like Leqembi and Kisunla — differ by ethnicity, with Japanese patients being at a substantially lower risk. Knowing ARIA risk helps doctors and patients decide whether the benefits of a new treatment outweigh the risks.

“The more diversity we have, the more we can understand whether the treatments actually work across different settings,” Glymour said.  

A return to all-white clinical trial groups for dementia drugs?

Only in recent years have scientific studies in the U.S. intentionally incorporated women or people of color. These inclusions have unleashed a landslide of new knowledge about the world’s most pressing public health issues and most widespread diseases. 

When it comes to drug development, drug companies have gradually been convinced to put funding into the challenge of finding clinical trial participants outside the white male demographic to ensure drugs, diagnostics, and other medical interventions work across different racial groups and genders.

But, with no more regulatory pressure or guidelines, Glymour is doubtful that pharmaceutical companies will recruit diverse participants into trials. “We have a lot of evidence that if the companies are not pushed to do this, they will not do it,” Glymour told Being Patient. “There absolutely has to be a lot of pressure and accountability to achieve inclusion in these trials.”

Here’s how this has looked in recent Alzheimer’s anti-amyloid drug testing, for the disease-modifying drugs ever approved by the FDA or Alzheimer’s disease: In the two Aduhelm trials that led to the controversial drug’s accelerated approval in 2021, only 20 participants, or 0.63 percent, were Black or Hispanic. Glymour believes the pressure placed on pharmaceutical companies led to the inclusion of more Black and Hispanic people in the Kisunla (8.5 percent of participants were non-White—the exact breakdown wasn’t shared in the published trial) and Leqembi (4.5 percent Black and 22.5 percent Hispanic) trials.

“There absolutely has to be a lot of pressure
and accountability to achieve
inclusion in these trials.”

“The [drug] company is fundamentally trying to get a drug to market as quickly as possible and get approval,” Glymour said. She added that U.S. citizens need to press the companies to make sure trial participant groups are representative of the general public. 

Neil Weisman, president of Continuum Clinical which helps recruit patients for clinical trials on Crohn’s, Alzheimer’s, and HIV, added that writing that “big pharma will set the tone for the industry.”  

Weisman thinks that individual trial sites also have a role to play in pushing diversity. 

“My hope (and belief) is that sites will be the ones to double down on their efforts and assure momentum isn’t lost,” he said. 

What’s next for diversity in U.S. scientific research?

There will be no hiding from this executive ban: The order included measures to root out and eliminate any roles, positions, or programs that could support these concepts under a different name. Beyond job eliminations, an erasure of diversity goals, and the end of grant funding in federally overseen programs, research, education, and other institutions, the executive order also threatened to punish some private entities and companies if they have these programs, spurring the elimination of these programs at a wide range of employers from Meta to McDonald’s.

Meanwhile, work at the National Institutes of Health and other departments under the banner of U.S. Health and Human Services hangs in the balance as Trump-mandated communications and funding stoppages continue into this upcoming weekend and new appointees, including pending HHS Secretary and vocal critic of the scientific research status quo Robert F. Kennedy Jr., make their way through Senate confirmation hearings.

It’s very unsettling as it is unclear as to what is being evaluated, why, and what changes may or may not be coming,” Weisman said, “thus resulting in a tremendous amount of speculation and concern.”

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4 thoughts on “‘Unsettling:’ Federal DEI Ban a ‘Step Backward’ for Alzheimer’s Trials

  1. Fail to understand how DEI focus improves diversity in study groups. Study groups can be put together based on needs of the study – if study protocol warrents a certain % of the population based on age, race, etc. DEI has no impact. The issue would be hiring a scientist or researcher based on race, sex, etc. Hire the most qualified to achieve the best and quickest and most complete outcomes for study. Don’t look for a problem when there is not one.

    1. Jane, thanks for your comment. As Glymour explains in this article (which has nothing to do with hiring), drugs work differently in different groups. And, as explained here, historically, women (& other minorities) were not represented in clinical research. In fact, there were no women in medical trials until 1993. Even still today, most U.S. trials run by drug companies don’t recruit a population representative of who will be taking the drug. This is largely because it’s much more expensive — and much more work – for drug companies to get an accurately diverse group.

    2. Without diversity benchmarks (which have now been outlawed by the new executive “DEI ban”), there would be no gold-standard, large-scale clinical trials of REPRESENTATIVE GROUPS — as opposed to all white male study groups.

      Without these representative groups, there will be NO EVIDENCE that drugs / dosages on the market are safe and effective for you / your family.

      We’re not talking about frivolous jobs or programs. This article is about data that tells scientists how many people from what racial and sex groups to include in a study.

      Hope that helps — take care —

  2. Thank you for this informative and important article pointing out the dangerous results of this mandate to get rid of DEI. With out diversity our world will become so much smaller. We must not allow a few misguided, selfish, narrow sighted people to mandate how the rest of us want our live our lives. This mandate is going to result in the opposite of “making America great again.” Unless we find ways to reverse this trend, we are in danger of losing what America has stood for from the beginning.

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