When Women Are Left Out of Medicine

The coronavirus vaccine trials are the most recent to treat mothers as abberant

This Thursday, I’ll share your examples of ways that the covid emergency changed norms for the better—what shifts do you want to hold onto in ordinary times?

“Nurse Giving an Injection of Penicilin to a Wounded Man, 15th Canadian General Hospital” by Henry Carr, Imperial War Museum (source)

I was thrilled to see the first doses of covid vaccine at last being distributed this week. But there was another, unwanted moment of suspense as the FDA went through the approvals process—would pregnant women and nursing mothers be allowed to get the shot?

Both groups of women were barred from clinical trials, even though there was no reason to believe that the vaccine would pose a danger to a baby—and that “better safe than sorry” approach might have led to pregnant or nursing women being barred from receiving a vaccine, too, since, by design, there’s no data on how it will affect them.

Happily, the final decision allows women to choose to be vaccinated. Unfortunately, in England, the recommendation is to avoid vaccination while pregnant and even to avoid pregnancy for two months after the vaccine, despite there being no evidence or theoretical reason for this warning.

This is a killing caution. Emily Oster, in her book Expecting Better, offers a regretful rundown of how little most drugs are examined for their effects during pregnancy and breastfeeding. It is not necessarily safest to just avoid medicine during pregnancy—not treating a physical or mental illness isn’t very good for you or your baby.

When women are excluded from clinical trials, moms are left to make their best guess about, for example, whether the hypothetical side effects for their baby of an antidepressant outweigh the known, lousy side effects of depression. The choice still has to be made, it’s just made with less data.

These problems aren’t limited to mothers. Clinical trials shortchange nearly all women. Most drug data has been collected primarily in men (even in male animals!) for fear that the female hormone cycle would introduce variation and throw off results. The result is that the final dosage recommendations don’t necessarily work for women:

Scientists and medical professionals have long known that women experience more adverse side effects than men, even when drug dosages are adjusted for body weight. These side effects can range from headaches and nausea to bleeding and seizures. But for decades, women were excluded from drug trials due to the false belief that hormone cycles would skew test results.

“For much of the time it’s been practiced, biomedical science has been done by men, on men,” said Prendergast. “It even starts in the petri dish: Most cell lines used in early tests are male, and then drugs are tested on male lab animals.”

The National Institute of Health has created stronger requirements to enroll women in trials, but that medical suspicion that the rhythms of female fertility are a flaw that doctors can’t be expected to adapt to persists. Men are taken as normal, women as an edge case—more trouble than we’re worth.

These exclusions exist on the basis of race, too. Black patients get brushed off the same way when they have a “non-standard” presentation of a disease, i.e. they don’t meet the standard calibrated exclusively to white patients. For one example: dermatology textbooks often feature very few images of Black patience for diagnosis, leaving doctors less able to provide care.

Maya Dusenbery’s Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick is a great resource on how pervasive this kind of exclusion is. In many cases, I don’t think this is the result of active misogyny, but rather the absence of representation in the rooms where decisions are made, a lack of curiosity about the experience of others, and the slow accretion of defaults until they feel like too much work to change.

Have you experienced this kind of mismatch between clinical “defaults” and your own body and needs? Have you found good ways to screen doctors to check if they’re sensitive to this kind of soft sexism? If you do work in health care, have you found ways to push back from within?