In 2013, I talked to Marlena Fejzo about her research on hyperemesis gravidarum — morning sickness so extreme it “can lead to dehydration, weight loss and vitamin deficiencies.” At the time, I noted that Fejzo, who had suffered from the condition herself, was one of the few researchers studying the malady, despite that in Western societies it’s the most common reason for first-trimester hospitalizations and can be, in extreme cases, life threatening.
This week for The Times Alice Callahan profiled Fejzo, a geneticist at the medical schools at both the University of California, Los Angeles and the University of Southern California. According to Fejzo, Callahan wrote, “Hyperemesis hospitalizations are thought to cost patients and insurers about $3 billion per year.” But funding for studies about the illness is still woefully inadequate, as it was 10 years ago when I interviewed Fejzo.
“Since 2007,” Callahan reports, the National Institutes of Health “has funded only six hyperemesis studies, totaling $2.1 million.” We know more about hyperemesis now — that there may be a specific genetic component to it — than we did a decade ago, in part because Fejzo has tirelessly studied it.
Also this week, for The New Yorker, my friend Jessica Winter wrote about another understudied and devastating condition that affects women: postpartum psychosis. “A woman experiencing postpartum psychosis may show signs of mania, depression or both; she may have aural hallucinations, paranoia or delusions; she may stay awake day and night,” Winter explains. In exceedingly rare but sometimes highly publicized cases, mothers have killed their children, or themselves, when suffering from postpartum psychosis.
Winter wrote that while potentially one in seven women suffers from perinatal and postpartum mood and anxiety disorders (or P.M.A.D.s, a category that includes postpartum psychosis), these disorders’ “neurochemical byways are not well mapped.”
Dr. Veerle Bergink, the director of the Women’s Mental Health Program at Mount Sinai, told Winter this about postpartum psychosis:
There is no money for it, not for research, not for treatment. There are no guidelines. This is one of the most severe conditions in psychiatry, one that has huge impacts on the mother and potentially on the child, and there’s nothing.
This shouldn’t surprise and anger me as much as it does, because I already knew that diseases that tend to afflict women don’t receive as much funding as diseases that tend to afflict men. According to a 2021 paper published in The Journal of Women’s Health:
In nearly three-quarters of the cases where a disease afflicts primarily one gender, the funding pattern favors males, in that either the disease affects more women and is underfunded (with respect to burden), or the disease affects more men and is overfunded. Moreover, the disparity between actual funding and that which is commensurate with burden is nearly twice as large for diseases that favor males versus those that favor females.
I emailed Maya Dusenbery, the author of the 2018 book “Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed and Sick,” to get her take on why women’s reproductive health — which includes hyperemesis and postpartum psychosis — is in particular so poorly studied.
Dusenbery said that there are knowledge gaps across areas of women’s health because we’re still “playing catch-up in understanding that women’s experiences can sometimes differ from men’s when it comes to the risk factors and presentation of the same disease or the effectiveness and side effects of the same treatment,” and that some of the knowledge gap can be traced to “the tendency to psychologize women’s illness. In attributing women’s unexplained symptoms to ‘hysteria,’ medicine didn’t have much motivation to study their biological underpinnings.”
When it comes to women’s reproductive health, she said, “there’s been a more complicated dynamic” because there’s been a history of looking at women’s biological functioning “as sort of inherently pathological.” Menstruation, childbirth and menopause were seen as a kind of permanent sickness or weakness, which (conveniently, for some) prevented women from fully participating in public life. But there’s also been a history of psychologizing “women’s unexplained symptoms,” Dusenbery said, meaning women have also been told that their painful cramps or extreme morning sickness were just signs of mental illness.
During her second pregnancy, Fejzo was so sick that she couldn’t swallow a teaspoon of water, lost 15 pounds and ultimately miscarried. Her doctor, Callahan wrote, told Fejzo that “women make themselves sick during pregnancy to gain the sympathy of their husbands, and later, that her illness was a ploy for attention from her parents, who were helping with her medical care.”
That was in 1999, not 1899.
In her book, Dusenbery wrote: “Today, medicine seems to have generally settled into a position that manages to incorporate the worst of both worlds: It’s considered ‘normal’ for women’s reproductive functions to be a bit abnormal — and if it’s really bad, well, maybe it’s all in your head.”
The solution to this diagnostic purgatory, she said, is more research into “basic physiology to explain the individual variation” of women’s experiences when they menstruate or give birth. Why do some people, like Fejzo, and me, have debilitating and life-altering morning sickness, while 20 to 30 percent of pregnant women don’t have any morning sickness at all? Experts have theories, including Fejzo’s identification of a genetic variant that is linked to hyperemesis — but we don’t have enough tools to help women who are suffering right now. Funding women’s health equitably wouldn’t give us answers overnight, but it would set us on the right path.