Endometriosis is a disease that affects an estimated 1 in 10 women around the world. The average time to diagnosis is roughly a decade, leaving millions of women to deal with years of debilitating pain, untreated illness, and struggles with infertility. But for women of color, particularly Black women, this disease often carries additional burdens.
3 Reasons Black Women Aren’t Diagnosed with Endometriosis
Racial inequities in healthcare are not new, and for previously hard-to-diagnose diseases like endometriosis, these inequities are only amplified. Three factors make it particularly difficult for Black women to be diagnosed and treated for endometriosis:
- Studies have shown that doctors often disregard women’s pain. For Black women in particular, this problem is even more severe. A 2012 meta-analysis of two decades’ worth of research found that Black women are 22% less likely to be prescribed pain medication, while a 2007 study found doctors are twice as likely to underestimate Black patients’ pain as compared to all other ethnicities combined.
- This disregard for Black women’s pain likely stems from implicit bias. A 2019 study by the American Psychological Association found white participants were less able to identify pain on Black patients’ faces as compared to those of white patients. And in 2016, researchers at Princeton University found that half of white medical students and residents endorse false beliefs about biological differences between Black and white patients. The same study found that those who endorse those beliefs also underestimate Black patients’ pain and make “less accurate treatment recommendations” as a result.
Excluding Black women from research
- This implicit bias shapes clinical research. Far too often, Black women are left out of medical research, a phenomenon that is not specific to endometriosis. According to ProPublica, Black and Native American patients remain underrepresented in clinical trials for new drugs. This has serious implications: the FDA has stated that the lack of Black patients in trials for diseases like multiple myeloma may obscure “meaningful differences” in disease biology and treatment response.
- Omitting Black women from endometriosis research is especially important because endometriosis is associated with several comorbidities, or additional diseases that occur at the same time. Several common endometriosis comorbidities include rheumatoid arthritis, hyper- and hypothyroidism, and multiple sclerosis—many of which disproportionately affect Black women. Excluding Black women from research into endometriosis and its associated comorbidities means the medical community lacks necessary insight into how this disease affects Black women in particular.
Lack of access to testing and treatment
- Compounding these issues are widespread disparities in access to healthcare. According to the National Partnership for Women and Families, almost 14% of Black women are uninsured (vs. 8% of white women), and Black women of reproductive age experience the biggest disparity in insurance coverage.
- This inequality applies to treatment, as well. One study of 400 American hospitals found that when compared to white patients, Black patients receive older, cheaper forms of treatment; are released from the hospital too early; and are more likely to receive less desirable forms of treatment. Disturbingly, Black women are 3.2 times more likely to die from pregnancy-related complications than white women.
Taken together, these factors harm Black women’s health and can dramatically curtail the quality of their lives. These factors also explain why Black women are less likely to be diagnosed with endometriosis than are white women, meaning many who are struggling with the disease are left untreated.
Ways to Take Action
The status quo is unacceptable. Here are just a few ways the medical community can work to improve health outcomes for Black women, particularly those struggling with endometriosis:
Acknowledge and address implicit bias in medicine.
- Medical practitioners have a duty to actively confront their implicit biases, which first requires acknowledging that these biases exist. Harvard’s Implicit Association Tests (IATs) are a good starting point, but this initial awareness must be matched with frequent and thorough self-assessments. Only with awareness can medical practitioners begin to take action to better care for all of their patients.
Include Black women in endometriosis research.
- It’s time to center Black women in clinical trials, especially as it pertains to the diseases that disproportionately affect them. These trials inform everything from drug development to modes of treatment, and it’s essential that participants accurately reflect the populations who are most affected. As the field of endometriosis research—and its comorbidities—continue to grow, clinical researchers must explicitly work to include Black women.
Improve access to testing.
- In order to access the treatment they need, women require accurate and timely diagnoses. Given the additional barriers to diagnosis that they face, this is especially important for Black women. For a century, diagnosing endometriosis has required painful and expensive laparoscopic surgeries. DotEndo is the first non-invasive test for endometriosis, and it’s crucial that Black women can benefit from this development.
The past does not need to define the future. It’s time to strive for equality in medicine so all women can access the care they deserve.