Three men walk into an emergency room. So do three women. Who’s getting the best care?
Experts in This Article
CEO and founder of Women’s Health Access Matters
president and CEO of the Society for Women’s Health Research
associate director of the Connors Center for Women’s Health &
senior director of government and political affairs for The American College of Obstetricians and Gynecologists
All kinds of factors could come into play here (insurance, socioeconomic status, race, which patient is most emergent). But in general, doctors will often automatically know with more certainty how to treat someone who was assigned male at birth.
Despite the setup, this isn’t a joke. Rather, it’s a harsh reality caused by a lack of representation in health research that reaches back decades, even centuries, says Primavera Spagnolo, MD, PhD, associate director of the Connors Center for Women’s Health & Gender Biology at the Brigham and Women’s Hospital and assistant professor of psychiatry at Harvard Medical School.
Women and folks assigned female at birth are under-studied in medical research, including in human clinical trials and even in research on lab mice—female rodents weren’t mandated to be included in research by the National Institutes of Health (NIH) until 2016. For this reason, there’s a gap in our understanding when it comes to how certain conditions manifest in women and how treatments affect them.
Case in point: Women are more likely to have depression, PTSD, and autoimmune diseases, and they’re nearly twice as likely to develop Alzheimer’s disease. But clinical trials testing medications for these conditions have been mainly conducted in men, creating a dramatic lack of knowledge that has repercussions for both our health and economy, per the nonprofit Women’s Health Access Matters (WHAM).
“In medical schools, we are rarely taught about sex differences and sex-specific factors that influence the prevalence of a disease or the treatment response,” Dr. Spagnolo says.“Nobody is showing us how to look for sex differences with the same condition. There’s just a lack of knowledge.”
Similarly, she says, looking for sex differences is often an afterthought in clinical research. “Clinicians and scientists often learn the importance of considering sex and gender in health on their own,” she reveals.
That’s not to say that sex differences come into play in every single medical situation (nor that the medical community is completely clueless when it comes to diagnosing and treating women). But treating all adults based on research primarily done in men can lead to poor outcomes for those who don’t fit the model. “I would say in 90 percent of the cases, we don’t harm women, but we don’t give them the best, most tailored treatment possible,” Dr. Spagnolo says. But the other 10 percent of cases can be life or death.
For example, heart attacks sometimes show up differently in men than they do in women, but most doctors are predominantly taught about the signs in men, says Dr. Spagnolo. So a man who comes into the ER with chest pain may be treated more quickly than a woman who comes in with shoulder pain and nausea.
Overall, this lack of knowledge can lead to harm for those three women heading into the ER—and all of us. “In medicine, not knowing is never something that helps,” Dr. Spagnolo says.
This is why President Joe Biden recently signed an executive order to help expand women’s health research, adding funding, improving data collection, and focusing on under-studied conditions that affect women, such as menopause and maternal health.
But when we’re this far behind, how much can it help? Here, we turned to experts for what you should know about this order and got their tips on how to best advocate for yourself medically in a world that has under-prioritized the health of half the population for far too long.
First, some history
The lack of adequate women’s health research has come from decades (if not centuries) of mistakenly assuming that women were “just smaller versions of men,” says Carolee Lee, CEO and founder of WHAM. And for years, the way drugs were tested and patients were treated followed that logic.
What’s more, some events led to women being underrepresented in clinical trials on purpose, such as the thalidomide tragedy in the 1950s and 60s, when pregnant women were prescribed an anti-nausea medication that was later linked to severe birth defects in thousands of babies. Similarly, the synthetic hormone diethylstilbestrol (DES), which was prescribed to many pregnant people from 1938 to 1971 to prevent miscarriage and other complications, was found to elevate cancer risk to both the people who took DES, and their children who were exposed to it in the womb.
“In response to these tragic events, the FDA issued guidelines banning most women of ‘childbearing potential’ from participating in clinical research studies,” Dr. Spagnolo says. “The focus at that time was to protect the most vulnerable populations, but the result was that most women were banned until 1993.”
The fact that women menstruate has also been a historic reason to exclude them from studies, Lee says, because fluctuating hormone levels could “complicate the science.”
“There was just this idea that only including men would simplify the process of a clinical trial,” Dr. Spagnolo adds. “Whatever we discovered in men would just apply also to women. Now we know that’s not always true, and we have to make up for all these years in which women weren’t adequately enrolled in clinical trials.”
That’s not to say things haven’t improved somewhat over time. In 1997, the FDA put out rules requiring manufacturers to show their drugs were safe based on age, sex, and race. A 2016 check-in found that women finally accounted for about half of participants in clinical trials funded by the NIH.
But, Dr. Spagnolo warns, as much as things have gotten better, there’s still a lot of data and research loss to make up for. That’s where Biden’s plan comes in.
“I hope that in the next 10 or 20 years, we won’t need any executive order. We’ll have research spontaneously and intentionally looking for sex differences and finding innovative solutions for female-specific conditions. But we need to acknowledge that this mindset is not there yet.” —Primavera Spagnolo, MD, PhD, research scientist
Will Biden’s executive order help?
Biden’s new order plans to tackle the sex discrepancies in research in a few major ways:
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