In this op-ed, Rise Global Winner Diya Sreedhar explores how a dearth of research on women's bodies has led to the continuation of women's pain.
The baby's tiny, malformed limbs trembled in her mother's arms, a sight that haunted the halls of hospitals across the world. It was the 1950s, and the thalidomide scandal would go on to leave countless women devastated, their trust in medicine shattered. A drug advertised to help with morning sickness, among other ailments, thalidomide ended up causing limb deformities or death in at least 10,000 babies worldwide -- though the total number is unknown.
In the U.S., the Food and Drug Administration ultimately did not approve the medication, but as many as 20,000 American women had participated in trials run by a pair of pharmaceutical companies. The situation eventually led in part to the FDA's decision to suggest excluding women of reproductive potential from the early stages of most clinical trials in the late 1970s, according to the National Institutes of Health's Office of Research on Women's Health. Initially, the guidelines recommended barring "premenopausal female[s] capable of becoming pregnant" from Phase I and II trials, except in certain situations, like potential treatments for life-threatening conditions, severely limiting the collection of data about women between puberty and menopause in drug research. These guidelines started to shift around 1986, and then relaxed in 1993 with a law that mandated the inclusion of women in clinical research amid growing concern that their exclusion may have created a dearth of information about how different medications affect women. But by that time, damage had already been done.
For too long, the medical field has treated the female body as an enigma. As a Harvard Medical School study found, even in data from 2016 to 2019, women were underrepresented in trials for prevalent diseases. This gap can pose particular problems for teenage girls, who are at a vulnerable stage of life when proper medical care is crucial. Before I was diagnosed with secondary dysmenorrhea, I endured relentless menstrual pain, not knowing what was wrong. This pain was physical, but it also had wide-ranging mental side effects. Canceling on friends made me feel guilty, knowing I couldn't explain my situation because I didn't yet have a diagnosis. And seeing a classmate's cast covered in signatures, I envied how his pain was visible, while mine remained invisible, even to myself.