When I was 8 years old, my aunt Tazreen Ahmed got into a near-fatal car accident. My khala (Bengali for “maternal aunt”) and her Lebanese boyfriend, George, were out partying with friends when they decided to go on a late-night drive on Dhaka’s infamous Airport Road.
In the 1980s, the capital of Bangladesh was not nearly as “developed” as it is today, and there were only a few really big, wide roads. Airport Road was one of the largest roads in the city. With no white or yellow painted lanes, this massive avenue started at one end of town and took you all the way to the national airport. It was notorious for drunk driving–related car crashes, almost always involving intoxicated truckers on long cross-country routes.
When they found the car of my khala and her friends, it was totaled. The authorities had searched all the following day for my khala’s body. They finally found her, trapped under the back seat of the destroyed car. It was a miracle she survived.
But from the moment she got to the hospital, her treatment was a nightmare. The hospital was out of even the most basic supplies. I remember my mother sending our driver out to buy Savlon (a local antiseptic) and cotton balls. It took so long for the doctor to show up at the emergency room that my mom and her other sisters used parts of their saris for slings for my khala’s broken arms and legs.
The experience of watching her fighting for her life in that hospital was traumatic. I remember pleading with my parents to fly my aunt out of the country. “Can’t we pay to take her to America?” I begged. It made me even more aware of the massive gaps in the kind of medical care Bangladeshis had access to, and I hated the unfairness of it.
Growing up in Bangladesh, whenever we heard someone was going to the States for an operation or treatment, we believed they were going to get the best medical care possible. I considered American doctors and hospitals the gold standard.
It wasn’t until my own birth experience that I became aware of America’s shocking maternal mortality numbers, the highest among industrialized nations. Despite working as a feminist policy analyst at that time with a portfolio largely focused on women’s reproductive health and rights, I had no idea that I should be concerned about the state of maternal health in the richest, most scientifically advanced country on earth.
I myself almost became a maternal mortality statistic when I gave birth in America. Things started to go awry from the minute I stepped in the hospital, and after thirty hours of labor (two of which I spent pushing), my epidural slipped. My pain was so severe that I ran a fever of 104 degrees, and as I shook and trembled uncontrollably, the doctors finally performed an emergency C-section. It opened my eyes to how dangerous going to a hospital as a woman in America can be. It also made me see that if you’re a woman of color, you are at a higher risk of potentially being dismissed to death.
In addition to not being believed about their pain, women also face another glaring issue—a serious lack of clinical trials and information on women’s health. Both Maya Dusenbery and Gabrielle Jackson point to this scientific and problematic gender gap in their books.
Dusenbery identifies two problems women face in the medical system. The first she calls the “trust gap,” the tendency not to trust women and to dismiss their unexplained symptoms; to normalize, minimize, or attribute them to psychological causes. The second is what she calls the “knowledge gap,” the fact that much less is known about women’s bodies, and that diseases may manifest themselves in us differently than they do in men.
Jackson echoed Dusenbery, telling me in an interview that the thing that stunned her most during the course of her research was how little medicine actually knows about female biology.
“Almost everything we know about human health comes from the study of male humans, male animals, and even male cell lines,” Jackson said. “I was absolutely gobsmacked when I realized the full extent of our omission from medical science. It’s no wonder doctors dismiss us—they literally know very little about us! Complaints that women make more than men have been put down to ‘hysteria’ or ‘anxiety’ for millennia, not because women are innately unstable or unable to cope but because medicine has never bothered to investigate the symptoms! I’m still shocked by this, every day.”
Iranian-American writer and mental health advocate Melody Moezzi says that the healthcare system was not built with women, especially women of color, in mind.
“The American healthcare system is no different than any other American system,” Moezzi told me in an interview. “It is a system that was designed to perpetuate broader societal values and biases, including racism, sexism, heteronormativity . . . It is a system intended to benefit some over others, because—like the American criminal justice and the educational systems—the American healthcare system does not value all lives equally . . . It is a system that values white, male, wealthy, straight, cisgender, able-bodied, neurotypical individuals above all others.”
All women should be shocked about the systematic exclusion of women from testing and clinical trials—and justifiably so. Between the 1970s and 1990s, both the National Institutes of Health (NIH) and the Food and Drug Administration (FDA), along with other regulators, had a policy that ruled out women of so-called childbearing potential from early-stage drug trials. The result was that all women were excluded from trials, regardless of their age, gender status, sexual orientation, or wish or ability to bear children. The general justification for excluding women, and making the male body the default, was that males are cheaper to study because their hormonal systems are simpler.
“We literally know less about every aspect of female biology compared to male biology,” Dr. Janine Austin Clayton, an associate director for women’s health research at the United States National Institutes of Health, told the Guardian in November 2019.
The good news is that women mobilized after finding out about their widespread and systematic exclusion. During the 1980s, a group of American female scientists formed the Society for Women’s Health Research to campaign for better health research in women. They teamed up with members of Congress to draw attention to the serious inconsistencies in medical research and the impact they have on women’s health. Their findings were astounding.
For example, in the 1960s, researchers conducted the first trial to look at whether hormonal supplementation was an effective preventive treatment for women—but then enrolled 8,341 men and no women. The Physicians’ Health Study from 1982 analyzed the effect of a daily aspirin on heart disease but tested 22,071 men and no women. There was a 1986 pilot study from New York City’s Rockefeller University exploring how obesity impacts breast and uterine cancer that also failed to include women in the studies— even though men don’t have uteruses. It goes on and on.
And things aren’t much better today, as women continue to be underrepresented in studies. The NIH didn’t open an Office of Research on Women’s Health until 1990, when the gynecological symptoms of AIDS began to show up, sending a clear message that trials needed to include and focus on women.
Finally in 1993, the FDA and the NIH mandated the inclusion of women in clinical trials, officially requiring all federally funded clinical research to prioritize the inclusion of “women and under- served racial and ethnic groups.” But it still took until 2014 for the NIH to acknowledge the widespread issue of male bias in pre- clinical trials. And it wasn’t until 2016 that they mandated that the studies had to include women in order to be granted research money.
That science and medicine have a gender problem, and that it affects what is studied, is an understatement.
The above is an adapted excerpt from “The Pain Gap: How Sexism and Racism in Healthcare Kill Women” by Anushay Hossain with permission from the publisher, Tiller Press. Copyright © 2021 by Anushay Hossain.
Anushay Hossain