Sixty-seven years ago, two tissue samples taken from a young, African-American woman diagnosed with cervical cancer led to the most important cell lines in medical research. Her name was, of course, Henrietta Lacks. Today, it would be difficult to find someone who isn’t familiar with her story. The “immortal” He-La cells have been used in more than 74,000 studies and have led to the discovery of the Polio and HPV vaccines, treatments for diseases, including diabetes and AIDS and other life-saving research around the world.
The contributions Lacks made to medical science have been heralded in the best-selling book, “The Immortal Life of Henrietta Lacks,” by the foundation created in her name, in countless news stories, in an HBO movie starring Oprah Winfrey and by the National Institutes of Health (NIH) through the establishment of a working group in her honor. In 2013, the NIH stated that Lacks and her family were the “greatest philanthropists of our time.” However, it wouldn’t be until 1987, 36 years after her cells were replicated and shared widely amongst the research community, that the NIH would institute a policy “encouraging” the inclusion of minorities in clinical studies. And it would be another six years before Congress would make it law through a section in the NIH Revitalization Act of 1993 entitled Women and Minorities as Subjects in Clinical Research. The reason for this move by the NIH is obvious. We cannot appropriately evaluate the effects of drugs in clinical trials without a racially diverse sample.
Therefore, it should be considered one of the greatest conundrums of our time that a black woman is responsible for thousands of breakthroughs in biomedical research and yet, in 2018, black women are three or four times more likely to die during childbirth than their white counterparts. When it was discovered that Lacks had cervical cancer, she had just given birth to her fifth child. At 31 years of age, Lacks suffered from a severe hemorrhage after childbirth and died eight months later after receiving routine cancer treatments and experiencing continued abdominal pain.
By today’s definition, Lacks would be counted among the women lost to maternal mortality. According to the Health Resources and Services Administration, the maternal mortality rate in the 1950s was 83.3 deaths per 100,000 live births. And while that number has decreased significantly since then, it is well-known that the United States is considered one of the most medically advanced developed countries— and yet, it has the highest maternal mortality rate amongst its peers, with even higher numbers for minority women.
I’ve done several media interviews on the topic of racial disparities in maternal mortality. Reporters always ask why these disparities exist, especially among well-educated, affluent black women where access to care is not an issue. In my interview with Essence magazine, I explain that there is a complex web of causes, but it often involves social determinants of health and structural barriers to health care. Whether an African-American woman is rich or poor, has a GED or a PhD, she is susceptible to morbidity and mortality and implicit biases of race and class. This not only impacts the quality of care she receives, but can also have negative physiological effects. The relationship between stress and how we respond to that stress physiologically has well-documented associations with prematurity and cardiovascular disease. The “microaggressions” that black women endure throughout their lives also make them predisposed to chronic conditions that can make a pregnancy high risk, such as hypertension and diabetes. It is a failure in our medical care as providers if we do not 1) recognize and accept this and 2) meet the necessary cultural and systemic challenges that impact health outcomes.
During my ACOG presidency, much of my focus has been on providing guidance on how to make these system level changes. In May, ACOG will release a revised “Optimizing Postpartum Care” Committee Opinion developed by my presidential task force, “Redefining the Postpartum Visit,” and the Committee on Obstetric Practice. It will stress the importance of the fourth trimester and propose a new paradigm for postpartum care. When women fail to receive postpartum care, it impedes management of chronic health conditions. Attendance rates are often lower among populations with limited resources, which contributes to health disparities.
As we celebrate Black History Month and the contributions of African-American mothers like Henrietta Lacks, we must honor her legacy by not accepting the deaths of black women from pregnancy and childbirth as a reality of race.