As a professor of anesthesiology and principal investigator at the University of Michigan, I have spent over a decade studying health inequities, social risk factors, and community engagement in clinical research. My team’s NIH-funded studies, like many around the country, are experiencing severe disruption because of recent policy shifts.
Some say diversity, equity, and inclusion (DEI) needs to die, but killing off the benefits of DEI alongside its limitations is a threat to American lives. I have experienced firsthand how scorched-earth policies on DEI undermine medical research. In May, and again in September, the NIH emailed my team at the University of Michigan, asking us to “remove all DEI activities” from our grants, including direct patient engagement, or risk having both studies completely cancelled. These decisions are not simply ideological or financial. They signal whether our country is committed to developing the best treatments.
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Among conservatives, DEI is often viewed as wasteful or divisive. There are also common critiques that certain DEI efforts equate to little more than moral posturing. Still others only encounter DEI in the context of politicized debates, which obscures its intended purpose. “Shouldn’t doctors be focused on saving lives?” someone might ask. But in truth, DEI’s core principles are necessary to save lives—and fundamental to the American dream that anyone in the United States can succeed.
In medicine, we must focus on marginalized perspectives and patient experience to ensure clinical trials and other studies can reveal the true risks and benefits of new treatments. DEI is not the problem. The problem is that our healthcare system often fails those who need it most, and fixing it requires intentional effort.
Lupus patients show us exactly why features of DEI must survive. This life-long autoimmune disease is two to four times more common among Black people than white people. Black people also have a higher risk of death and disability due to lupus. The reason for these disparities is not fully known. Meanwhile, Black people are underrepresented in treatment development.
Lisa Thomas helps explain how history and bias affect underrepresentation in lupus research. Thomas is a lupus warrior (a patient-preferred term) and the event organizer for an advocacy organization called Lupus Detroit. “It’s been passed down through generations. Women of color often endure pain in silence while caring for everyone else,” she told me. “Even when we finally speak up, healthcare professionals can treat us like we’re exaggerating, seeking drugs, or just trying to get disability benefits. This results in us becoming silent once again.”
These experiences affect whether people are willing to join research studies, so the scientific community must acknowledge them if we want our work to serve the public good.
There is excitement among clinicians as science approaches a potential cure for lupus, like CAR-T cell therapy, which could be available within the next ten years. However, many patients wonder if the cure will reach them in time, if it will work for them, and if they will be able to afford it. Direct care costs for lupus exceed $15,000 per year for most patients, even if their symptoms are stable.
James Roby’s story highlights how lupus can be a race against the clock. Roby lost his wife, Alicia, and his sister, Rosalind, to lupus. Now he raises his young daughter, Rachel, alone. Alicia’s doctor initially dismissed her symptoms, telling her to try more vitamin C. “Lupus is a thief,” Roby told me. Alicia died when Rachel was 16 months old, less than a year after her diagnosis.
Roby’s story is painfully common. Black patients are more likely to die from lupus, partly due to diagnosis delays. The classic “butterfly rash” can go undetected on Black skin, and providers may initially dismiss other symptoms like pain and fatigue. Inadequate outreach also contributes to delayed diagnosis. “In the community, you don’t ever hear about it,” Roby explained. He added, “I wish Oprah Winfrey or Michelle Obama would get on television and tell people to get tested for lupus.” Public engagement rooted in DEI can improve care-seeking and trust among patients.
As our colleagues strive towards a cure, we must focus on addressing immediate community needs, promoting whole-person health models, and reducing underrepresentation in clinical trials so that treatments are safe and effective for everyone. When we integrate diverse patient perspectives, we can decrease diagnosis delays, avoid complications, and raise the standard of care. In contrast, sidelining patients who face disparities is clinically reckless and ethically indefensible.
Christina Hayes knows the stakes. Diagnosed at 19, she’s been hospitalized over 100 times. Even medications meant to help, like steroids, carry life-altering side effects. “People have lost their teeth, your bones end up breaking easier,” she explained. Two years ago, she needed emergency surgery and “died twice” on the table. She stayed in the ICU for six months, relearning how to walk. Hayes has also had to fight for respect, asking doctors to talk with her directly, instead of talking about her in the hallway. “We need doctors to see lupus warriors as people, not just as patients,” she said.
Beyond disrupting the body, lupus upends families. Crystal Ford went from being an active mother to being unemployed and needing her children’s help for basic tasks due to the unrelenting pain and disability caused by lupus. “My children had to grow up too fast when my situation changed so much,” Ford shared.
Like Hayes and Ford, many patients tell us they want better support for pain, stress, relationships, and work. These are not always top research priorities, and studies of behavioral and social interventions for lupus are lagging. Patient engagement, scaffolded by DEI, is essential to close these gaps. So, while policymakers scrutinize the virtue of DEI-related practices like diversity statements, we should reject heavy-handed solutions.
Critics argue that DEI undermines meritocracy, but its thoughtful application in medical research encourages the free exchange of ideas and the highest standards of science. This is crucial now more than ever, as academia and research are losing the public’s trust.
Our best hope for curing complex diseases like lupus is listening to those who live with them. When the NIH cuts DEI from our grants, it prevents our ability to hear patient needs, support patient-led education, and share research findings with the public. Overnight, work grounded in community wisdom is now assumed unrealistic or forbidden.DEI is not wasteful or shameful. Effective patient engagement can improve productivity, prevent hospitalization, and save lives.
Already, universities have closed DEI offices, businesses have abandoned diversity commitments, and NIH layoffs have reduced grant funding to a trickle. Call it DEI or call it something else, but America needs leaders who are willing to defend the value of medical research and patient-centered care. It is a matter of life and death.
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