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Reporter’s Notebook: ‘Incredibly unjust’ — How medical research feeds a vicious cycle of inequality

by Erica Hensley May 13, 2024

This article was republished from a Fuller Project newsletter on May 13, 2024. Subscribe here.

Of the 7 million Americans with Alzheimer’s, two-thirds are women. A new drug offers them a chance at slowing the cognitive decline that comes with this terminal illness.

But there will always be a crucial asterisk when it comes to the development of Leqembi, approved last year by the Food and Drug Administration: Its tests in the U.S. only included 10 Black women, despite Black women being twice as likely to be diagnosed with the disease compared to white women.

That’s less than 1% of study participants for the drug. That should stop people in their tracks, doctors and public health experts told me — but they themselves weren’t really surprised. 

Neither were we. After all, our piece last week on the exclusion of Black women from these trials was the result of our long-term focus on how medical research marches ahead without women.

Last January, our investigation into the exclusion of first responders and survivors with uterine cancer from the government’s 9/11 health program resulted in the cancer finally being included in the program’s list of covered conditions. While reporting the story, we found a catch-22. Women had been left out in the early stages of research on conditions related to 9/11 because most first responders were men. But this created a vicious cycle: the data used to launch public health responses was generated almost completely based on the conditions affecting white, middle-aged men. 

My editor had a simple question: How widespread is this type of problem? The short answer, we discovered quickly, is that it is ubiquitous. 

My colleague Maggie Fox and I set out to show the scope and harm of what happens when medical researchers forget about women. This led to a story on how the federal government refuses to require researchers to acknowledge, much less study, how men and women’s bodies metabolize drugs differently — despite the fact that eight out of every 10 drugs pulled off the market are recalled because of potentially deadly side effects that are riskier for women. Another story focused on how pregnant women are still actively excluded from clinical trials

One thing that stood out was that though women’s access to clinical trials has improved over the years, Black women have largely been left out of these gains.  

So much so that last week the American Cancer Society announced they would enroll 100,000 Black women between ages 25-55 for general long-term observation in order to learn more about the disparities that affect them. Despite being diagnosed at similar rates, Black women are more likely to die from almost every cancer than any other group.

The same goes for cardiovascular disease, the top killer for American women and men and another focus of our series. Black women comprised less than 3% of enrollment for cardiovascular drug trials from 2006 to 2020.

This kind of oversight can have fatal consequences. Researchers have long shown that heart disease shows up differently in men and women

Picture someone having a heart attack. Many people will visualize a middle-aged white man, perhaps overweight, clutching his chest, says Susan Cheng, an epidemiologist at Tulane University in New Orleans. But that’s not how women present with heart problems. They’re more likely to mention stomach pain or have shortness of breath without chest pains. And Black women, who are more likely to have comorbidities that can impact the symptoms they display and have more difficulty getting medical professionals to listen to them, are more likely than other women to die from heart disease.

“None of this should be a mystery,” Cheng said. “If all of our cardiovascular studies are based on white men, then all heart attacks must look the same. But of course they don’t. And because of this, doctors are being given a very limited set of resources for diagnostics when our research is not representative of our population.” 

Doubling down on the disparities, researchers want pure cases of whatever they’re studying, without other concurrent symptoms — like depression without PTSD or heart disease without diabetes — says NiCole Buchanan, psychology professor at Michigan State University who studies discrimination in research practices. Black women are more likely to have more than one condition, often that overlap.

“But this eliminates more typical cases, and worse, systematically pushes out those who were harmed by structural inequities and lacked treatment options in the first place,” she says.

This exclusion of already marginalized communities creates cyclical injustice, Buchanan adds.

“Women of color can’t get into these trials that may be doing groundbreaking work, say on depression, leaving certain groups left out to suffer, and bumping up others who are able to access trials and treatments. It’s incredibly unjust.”

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