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Medicine’s trust problem among women

The lingering legacy of clinical trials failing to include women as participants, combined with frequent gaslighting by doctors and a general lack of research on women’s bodies, has led many to mistrust medicine.

Why it matters: This mistrust plus a constant barrage of misinformation can influence women’s health decisions, including deciding not to follow recommendations for the COVID-19 vaccine.

Case in point: Trust in the COVID-19 vaccines has eroded for some people because of misinformation linking the shots to infertility and growing anecdotes about temporary changes in menstruation — causing confusion and hesitancy.

  • “For many women, their minds go there right away because, one, we’re primed by all the misinformation that is very intentionally put out there to try and weaponize views like fertility concerns … to undermine the vaccine,” says Alice Lu-Culligan, an M.D.-Ph.D. student at Yale School of Medicine who is researching the topic and wrote in the New York Times (subscription).
  • “And then, as humans, they often will default to being conservative and being safe, especially with something as vague and weighty as fertility,” she adds.
  • While the COVID vaccine trials did include a roughly equal proportion of women and men, the decision in the early clinical vaccine trials to exclude pregnant women fueled hesitancy, several experts tell Axios.

Between the lines: While it’s a good example, distrust goes beyond the topic of COVID-19 vaccinations and stems from a number of factors, including…

1. Gender differences are often ignored in trial analyses for drugs in a system that “has sexism embedded in it,” leading to a loss of key knowledge, says Namandjé N. Bumpus, director of the Department of Pharmacology and Molecular Sciences at Johns Hopkins University School of Medicine.

  • Women and even female animals were excluded from trials for a long time in the belief that a women’s menstrual cycle or an animal’s estrous cycle could affect outcomes, says Viki Male, lecturer in reproductive immunology at Imperial College London.

2. Representation in trials is particularly low for transgender women and women of color, who often are not given proper access or encouragement to join these trials, Bumpus says.

  • “So, you’re telling me that half [of COVID vaccine trials] are women. That’s great, but what is the breakdown when we’re talking about these groups that are historically underrepresented?”
  • “I do think that is a major issue [for] Black women, Latinas, Asian women and Indigenous women. Those folks are still being left out of clinical trials in many ways. So, I think that data needs to be reported,” Bumpus adds.

3. A lingering taboo over talking about certain topics surrounding women’s biology, combined with lack of research, can lead to ignorance.

  • “We don’t understand enough about female biology in general, and we definitely don’t know enough about all the things that can affect menstruation and what the mechanisms are,” Bumpus says.
  • “There’s not enough research. But, even with what we have, I don’t think we talk about it enough,” Male says. “A lot of people don’t even know what the normal range is with respect to menstrual cycles.”
  • Lu-Culligan agrees. Many women have noticed that if they get sick or stressed out, or alter their exercise routine, their period may change, but “we don’t know exactly why” because the mechanisms are unknown, she says.
  • And, when women do want to talk about symptoms or problems, they often face gaslighting from their doctors — something shown over and over again through studies on pain treatment or disease diagnoses, as well as via personal stories.

The big picture: “We don’t know a lot about women’s biology, about reproductive health, about research in menstruation and research in pregnancy. But, on a positive note, research in all those topics is expanding,” Lu-Culligan says.