When I was 8 years old, my aunt Tazreen Ahmed had a nearly fatal car accident. My khala (in Bengali for “maternal aunt”) and her Lebanese boyfriend, George, were partying with friends when they decided to take an evening stroll down Dhaka’s infamous Airport Road.
In the 1980s, the capital of Bangladesh was not as “developed” as it is today, and there were only a few very large and wide roads. Airport Road was one of the city’s main roads. With no alleys painted white or yellow, this huge avenue started at one end of town and led you to the national airport. He was known for his drunk driving-related car accidents, almost always involving drunk truckers on long country roads.
When they found my car khala and his friends, he was totaled. The authorities had searched all the next day for my by khala body. They eventually found her, trapped under the back seat of the destroyed car. It was a miracle she survived.
But from the moment she arrived at the hospital, her treatment was a nightmare. The hospital no longer had even the most basic supplies. I remember my mother sending our driver to buy Savlon (a local antiseptic) and cotton balls. The doctor took so long to show up to the emergency room that my mother and her other sisters used parts of their saris as scarves for my khala ‘s broken arms and legs.
The experience of watching her fight for her life in this hospital was traumatic. I remember begging my parents to get my aunt out of the country by plane. “Can’t we pay to take her to America?” I begged. It made me even more aware of the huge 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 that someone was going to the United States for surgery or treatment, we thought they were going to get the best medical care possible. I considered American doctors and hospitals to be the gold standard.
It was only through my own birth experience that I became aware of the shocking number of maternal deaths in America, the highest among industrialized countries. Although working as a feminist political analyst at the time with a portfolio largely focused on women’s reproductive health and rights, I had no idea I should be concerned about the state of maternal health in the country most. richest and most scientifically advanced on the planet.
I myself almost became a maternal mortality statistic when I gave birth in America. Things started to go wrong the minute I walked into the hospital, and after thirty hours of labor (two of which I spent pushing) my epidural slipped. My pain was so severe that I had a fever of 104 degrees, and while I was shaking uncontrollably, the doctors finally performed an emergency cesarean. It opened my eyes to the danger of going to the hospital for an American woman. It also made me see that if you are a woman of color you are at a higher risk of potentially being sentenced to death.
Along with not being believed about their pain, women also face another glaring problem: a serious lack of clinical trials and information on women’s health. Maya Dusenbery and Gabrielle Jackson both point out this scientific and problematic gender gap in their books.
Dusenbergy identifies two issues that women face in the medical system. The first, she calls the “confidence gap”, the tendency not to trust women and to dismiss their unexplained symptoms; normalize them, minimize them 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 illnesses can manifest in us differently than in men.
Jackson echoed Dusenbergy, telling me in an interview that the thing that stunned her the most during her research was how little medicine has learned about female biology.
“Almost everything we know about human health comes from studying male humans, male animals, and even male cell lines,” Jackson said. “I was absolutely stunned when I realized the full extent of our omission from medical science. No wonder doctors reject us – they literally know very little about us! The complaints that women make more than men have been traced to “hysteria” or “anxiety” for millennia, not because women are naturally unstable or unable to cope, but because medicine does not. never bothered to study the symptoms! I am still shocked by this every day.
Iranian-American writer and mental health advocate Melody Moezzi says the healthcare system was not built with women in mind, especially women of color.
“The American health care system is no different from any other American system,” Moezzi told me in an interview. “It’s a system that was designed to perpetuate broader societal values and prejudices, including racism, sexism, heteronormativity. . . It is a system meant to benefit some over others because, like the US criminal justice and education systems, the US healthcare system does not value all lives equally. . . It is a system that values white, male, wealthy, heterosexual, cisgender, able-bodied, and neurotypical individuals above all others. “
All women should be shocked by the systematic exclusion of women from clinical trials and trials, and rightly so. Between the 1970s and 1990s, the National Institutes of Health (NIH) and the Food and Drug Administration (FDA), along with other regulators, had a policy that excluded women of reproductive age from drug trials at a stage early. The result was that all women were excluded from the trials, regardless of their age, gender, sexual orientation, or their desire or ability to have children. The general rationale for excluding women and making the male body the default was that men cost less to study because their hormonal systems are simpler.
“We know literally less about every aspect of female biology compared to male biology,” said Dr. Janine Austin Clayton, associate director of women’s health research at the United States National Institutes of Health, at the Guardian in November 2019.
The good news is that women mobilized after learning about their widespread and systematic exclusion. In the 1980s, a group of American women scientists formed the Society for Women’s Health Research to campaign for better research on women’s health. They partnered with members of Congress to draw attention to serious inconsistencies in medical research and the impact they have on women’s health. Their findings were amazing.
For example, in the 1960s, researchers conducted the first trial to determine whether hormone supplementation was an effective preventive treatment for women, but then recruited 8,341 men and no women. The 1982 Physician Health Study analyzed the effect of a daily aspirin on heart disease, but tested 22,071 men and no women. A 1986 pilot study from Rockefeller University in New York exploring the impact of obesity on breast and uterine cancer also failed to include women in the studies, even though men did. no uterus. And it goes on and on.
And things aren’t much better today, as women continue to be under-represented in education. The NIH did not open an office for research into women’s health until 1990, when gynecological symptoms of AIDS began to appear, sending a clear message that trials should include and focus on women.
Finally, in 1993, the FDA and NIH made the inclusion of women in clinical trials mandatory, formally requiring that all federally funded clinical research prioritize the inclusion of “women and racial groups and” underserved ethnic groups ”. But it wasn’t until 2014 that the NIH recognized the widespread problem of male bias in preclinical trials. And it wasn’t until 2016 that they demanded that studies must include women in order to get research funding.
That science and medicine have a gender issue, and that this affects what is studied, is an understatement.
The above is an excerpt adapted 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.