The Tuskegee Experiment of the 21st Century

“Those who do not learn (from) history are doomed to repeat it.” George Santayana

When asked why African Americans are hesitant to see doctors or have a mistrust of the medical system in general, a common response is “because of what happened at Tuskegee.” This seminal event is a microcosm of a larger trauma, both historical and contemporary which continues to contribute to healthcare inequality.

“I was told hysterectomy was my only option to treat my fibroids. It was either hysterectomy or continue to suffer with it.”

As a physician who has spent my career treating uterine fibroids without surgery and increasing fibroid awareness across the nation, I hear this sentence far too often. The stories are always similar – that hysterectomy, or the surgical removal of the uterus, is the only treatment offered. Most of these women are unfamiliar with uterine fibroid embolization (UFE), a safer, outpatient, nonsurgical alternative. Almost all the women telling me these experiences are African American, as these women have a much higher incidence of fibroids than any other racial group.

Offering women only hysterectomy, a treatment that is essentially female castration, while knowingly excluding other effective, less-invasive, nonsurgical therapies like UFE, is analogous to the infamous Tuskegee Experiment. This time, it is not poor African American males uninformed of penicillin to eradicate syphilis; it is African American women of all socioeconomic levels with benign fibroid tumors who are not being told of alternatives to hysterectomy and often times left to suffer in silence. There are over 1 million “silent sufferers” in the US who do not want hysterectomy and are unaware of UFE.

Approximately 26 million women in the U.S. are diagnosed with fibroids (noncancerous tumors in the uterine wall) and consequently experience debilitating symptoms, such as horribly heavy menstrual bleeding, pelvic and lower back pain, urinary incontinence, anemia, painful sex, and in some cases infertility. Fibroids disproportionately affect African-American women more than any other racial group.

Research has shown that while Caucasian women undergo hysterectomy for uterine cancer (entirely appropriate), African American women are more likely to undergo hysterectomy for benign fibroids. I have seen many women younger than 30 years of age who needlessly underwent hysterectomy for this reason. None of them wanted to, but it was the only option given to these suffering women.

Hysterectomy is a fibroid treatment option but should be one of the last resort. It has been associated with numerous documented physical and mental health issues. In addition, research6 has shown that many women diagnosed with fibroids never hear about less-invasive treatment options like UFE. UFE is performed by interventional radiologists (not gynecologists) who are physicians trained to perform minimally invasive procedures all over the body.

UFE can replace the need for surgical treatment in almost every instance. The procedure works by blocking blood flow to the fibroids, resulting in tumors dying and symptoms dramatically improving. It has an approximate 90% success rate. Compared to hysterectomy, UFE is also less expensive, does not require a hospital stay, and has a shorter recovery time. Above all, it allows women to keep their uterus, which means pregnancy and safe childbirth are possible.6 Numerous babies have been born to my patients after UFE (even multiple sets of twins).

UFE patients undergo a 30-minute outpatient procedure and are discharged home the same day with just a bandaid that where we entered the body. Just a bandaid! With so many sisters, daughters, mothers, and granddaughters of color impacted, the cause of, and treatment for, uterine fibroids deserves our attention for the crisis that it is. It doesn’t matter how inconvenient it is for some of the gatekeepers of women’s health to hear this; nor is it inconvenient for the Gynecologist to refer to a different type of medical doctor (i.e. Interventional Radiologists) to inquire about UFE.

Marginalized populations and people of color continue to be denied the reproductive freedoms available to other women and entitled by all. Not informing women suffering from uterine fibroids about UFE reflects what has happened historically to cause people of color to mistrust the medical establishment and other forms of authority that continue to perpetuate healthcare disparities. These lead to women delaying medical treatment for their fibroids which is often years of prolonged and unnecessary suffering. A landmark study from the Mayo Clinic in 2013 in the Journal of Women’s Health studying ~1,000 women suffering from fibroids demonstrated that most of these women waited over 3 years for treatment and 25% of them over 5 years. This was largely due to not informing patients of nonsurgical treatment options like Uterine Fibroid Embolization (UFE). Hysterectomy is no longer a first-line and only treatment option and should be relegated to a last-resort option; given the outstanding results of UFE. The amputation of women of color for benign diseases (i.e fibroids) needs to stop!

We also need greater medical research into what causes fibroids, which may lead to a better understanding of preventative measures that can change the lives of millions of women in the United States. This highlights another disparity that needs to be corrected. In 2020, $18 million dollars were spent on fibroid research. This ranks in the bottom 50 out of 300 common medical conditions, despite the fact that it affects 1 in every 3 adult women and up to 80% of African-American women in this country. Fibroids have an estimated yearly cost to society at ~$35 billion. Therefore, with roughly 26 million women affected, the amount of research funding is ~69 cents/person with fibroids. Contrast this with cystic fibrosis; a medical condition that primarily affects Caucasians. In 2020, cystic fibrosis commanded $94 million in research funding and had a much lower impact on society than fibroids (~$ 1 billion/year). With 30,000 people affected by cystic fibrosis, this results in over $3,000/person affected versus 69 cents/person for fibroids. This is unacceptable.

As a first step, Congress should pass the Stephanie Tubbs Jones Uterine Fibroid Research and Education Act of 2021 (H.R. 2007). My hope is that with this, the NIH will get the necessary funding which should include women of color who are often underrepresented in medical research. It will also direct the CDC to educate physicians and the general community at large on all of the treatment options like Uterine Fibroid Embolization (UFE) for uterine fibroids. With the knowledge of all of the treatment options for uterine fibroids, women will be empowered so that they will be able to make the best, most informed decision about their reproductive health and well-being.

Several of my patients are now UFE advocates, including Real Housewives of Atlanta stars Cynthia Bailey and Porsha Williams, four-time Olympic gold medalist and NBA Hall of Famer Teresa Edwards, and Emmy Award-winning WSB-TV Atlanta news anchor Jovita Moore. These women and others have spoken out about how transformational UFE is.

July is Fibroid Awareness Month in many states, and I hope you can help me this month and in the months ahead. I want to bring this inequity to light and encourage readers to investigate UFE and not just settle for surgery they don’t want or need.

Tuskegee lasted 40 years, and afterward, we were told it would never happen again. Yet UFE has been available for 25 years and still almost 600,000 hysterectomies6 are performed annually in the U.S., the majority to treat fibroids. By comparison, there are only ~20,000 UFE procedures each year. Both instances are egregious violations of informed consent. Women with fibroids deserve to know all of their treatment options, not just the surgical ones. I hope this article will serve as a powerful reminder that long after Tuskegee there are health inequities that exist and deserve our attention.

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