Have you ever been told you’re being “hysterical”? The term comes from the Greek word hysterika, meaning “uterus,” and for thousands of years the term has been used to describe and dismiss women’s pain. Its use originated with Hippocrates, the founding father of modern medicine, in the fifth century BC—but as recently as 1980, hysteria was classified as a psychological disorder by the American Psychiatric Association.
As many of us have personally experienced, women’s pain is still being minimized today. Approximately one out of every 7 women experiences pelvic pain, but this pain is often dismissed by family, friends, and even healthcare providers. This helps explain why endometriosis is the most prevalent yet overlooked disease in women’s health. With an average time to diagnosis of 10 years or more, endometriosis can lead to years of debilitating pain and a dramatically reduced quality of life for the estimated 176 million women it affects.
This disregard for women’s pain not only impacts millions of women’s lives, but also limits our understanding of women’s health relative to the rest of medicine. The scientific community has a long history of excluding women from research, linked in large part to this persistent gender gap.
Here are four key questions we must ask to pave the road to health equity:
The path to drug development begins with studying an animal model of the disease. Yet even when researchers study diseases that are more prevalent in women—like depression, thyroid disease, or multiple sclerosis—researchers often rely on male animals. Researchers tend to avoid using females for fear that their reproductive cycles and hormone fluctuations could confound the results of delicately calibrated experiments.
Thankfully, this is beginning to change. Since 2016, the National Institutes of Health have required scientists to “explain how relevant biological variables, such as sex, are factored into research designs and analyses” in clinical research studies. Even so, a 2019 review of more than 700 scientific journal articles found that while the number of studies that include women has risen dramatically, the proportion of studies that analyze results by sex hasn’t grown. This leads us to our next question:
Women’s biological characteristics mean their risk factors, responses to treatment, and rates of disease progression often differ from those of men. Despite these facts, clinical trials often fail to analyze and report results by sex, significantly hampering their ability to test the safety and efficacy of discoveries. One memorable example is Addyi, a pill intended to increase a woman’s libido—and for which the key study enrolled 23 men and only 2 women. Including women in studies is a first step, but it’s not enough. To truly understand effects on women, we need female-specific results.
Sex differences discovered in basic research or clinical trials are often ignored as the findings are translated into clinical practice. Consider the sleeping pill Ambien, which was inadvertently causing women to face problems ranging from “sleep eating” to “sleep driving.” After blood tests found that men metabolized the drug faster than women, the FDA told women to cut their doses of Ambien in half.
The final step on the road to women’s health equity in research will be measuring and understanding how sex and gender impact health outcomes, which are not routinely analyzed or reported by sex. A 2001 study found that 8 out of 10 drugs removed from the market posed greater health risks to women, but there has still been resistance to gender-focused outcomes to the inconvenience.
It doesn’t have to be this way. Imagine a world in which medicine and research account for women’s unique biological characteristics before drugs make it to market—one where scientists can adapt prevention, detection, and treatment strategies for the benefit of both women and men.
That’s why we started DotLab. We’ve developed DotEndo, the first-ever non-invasive test for endometriosis. The standard of care for confirming active disease hasn’t changed in 100 years, since the first laparoscopic surgery was performed. Our mission at DotLab is to empower women to have normal menstrual cycles, to preserve their own fertility, and to have healthcare equality available to them as they investigate their own hormonal health.
It’s time for us to demand medical equity. With DotEndo, we’re one step closer.
Photo credit: Tim Mossholder
