In 1989, the Physician’s Health Study on the benefits of aspirin for heart disease included 22,000 men and no women—and while we have made great strides toward more representative research in the decades since, women still aren’t included in biomedical research at a proportionate rate.
In fact, according to a 2018 ProPublica article, black women made up less than five percent of all participants in trials for 24 of the 31 cancer drugs approved since 2015. In studies where women are proportionately included, clinical trials often don’t consider hormone status or other gender-specific factors when evaluating the data.
This is significant because men and women’s bodies often respond differently to medical conditions and the resulting treatments. Men and women differ in metabolism, hormone levels, physical size, and perhaps other ways that are as yet unknown due to lack of research—but treatments are often developed based on the “average” clinical trial participant who tends to be white and male.
Just as important is that the lived experiences of individuals affect how they will respond to certain drugs. No Black females were included in the trials of Gardasil, the HPV vaccine that can help prevent cervical cancer—and it turns out that two of the strains of HPV most likely to cause cervical cancer in Black women are not covered by the vaccine.
This has real-world consequences that can determine life and death.
Women often experience different symptoms than their male counterparts: while men are most likely to experience chest pain during a heart attack, women may instead experience nausea and discomfort in their neck or jaw. Due to the focus of cardiovascular studies on men, many people don’t even know that such symptoms can be tied to a heart attack, and this lack of awareness can, in turn, lead to worse outcomes for women. Further, women are more likely than men to die in the year after a heart attack—and we still don’t know why.
This lack of medical understanding is particularly harmful for women of color. Due to a variety of factors including differences in genetics and the biology of the disease, Black women are up to 40 percent more likely to die from breast cancer than white women. Unfortunately, our knowledge on this disparity effectively ends there—we need more black women to participate in clinical studies in order to learn more about how we can better serve the black community and eliminate these disparities.
Eliminating disparities begins with asking the right questions and having the right people answer those questions. One step in this direction is the All of Us Research Program.
All of Us is a medical research program from the National Institutes of Health that aims to enroll one million or more participants from diverse backgrounds—women, people of color, people with disabilities or comorbidities, people living in rural communities and members of the LGBTQ community. We need everyone to be involved in research so that everyone benefits from treatment and prevention strategies. All of Us aims to advance precision medicine to ensure treatment is developed with the unique needs of specific populations in mind.
At the Black Women’s Health Imperative, we want to end health inequities for Black women, so we’ve partnered with the All of Us Research Program to raise awareness about the importance of participation in clinical research. We believe All of Us is an important effort to help rectify a tarnished history of research and create a healthier future for the next generation.