Tanika Valbrun founded the White Dress Project, an Atlanta-based uterine fibroid advocacy organization, in 2015 after undergoing two surgical procedures to remove 27 fibroids. Today, local, Black-women-led organizations like the White Dress Project and Black Women’s Health Imperative (now headquartered in Washington, D.C.) are working to increase compassionate fibroid health care and pushing for better research, policy, and physician education around treatment and care.
Uterine fibroids are benign tumors that grow in the womb, mainly during women’s reproductive years. More than 80% percent of Black women will get fibroids by 50 years old, compared to 70% percent of white women. Fibroids tend to occur earlier and cause more severe symptoms among Black women. Approximately 1 in 3 women with fibroids will have symptoms, which include heavy menstrual bleeding, frequent urination, and pain.
Clinicians base their treatment recommendations for a patient on the number, size, type, location of the fibroids, severity of symptoms, and the patient’s fertility intentions. In the United States, fibroids are the primary driver of hysterectomies, the removal of the uterus. Black women are at least twice as likely as white women to undergo hysterectomy for treatment.
“Funding for education for the fibroid patient and research to understand the disease is critical to improving their quality of life,” said Valbrun, who in June testified on behalf of the Stephanie Tubbs Jones Uterine Fibroid Research and Education Act before the House Energy and Commerce subcommittee on Health. “The patient’s voice is incredibly powerful.”
Jones, the first Black woman to represent Ohio in Congress, introduced the Fibroids Research and Education Act in 2003 to “expand, intensify, and coordinate” fibroid research programs. Jones, who dealt with fibroids herself, would go on to introduce the bill four times, but it never became law. At the time, President George W. Bush led a Republican-majority Congress, an administration that was not known for prioritizing women’s health issues — particularly those for Black women.
“It probably wasn’t the ideal political climate for her,” said Charlyn Stanberry, director of policy and advocacy for the White Dress Project.
In 2021, New York Democratic Rep. Yvette D. Clark reintroduced the act, which proposes an additional $150 million for uterine fibroid research and increases health care provider education and awareness around fibroids and their treatment.
Still, according to experts, the current state of fibroid research is scarce. Last year, the National Institutes of Health spent about $16 million on fibroid research. Compare that to $626 million for urologic diseases, which encompasses urinary tract infections, enlarged prostate, and other noncancerous urologic health problems that affect both men and women.
“This [fibroids] is a condition that’s been severely underfunded by the NIH,” says Ami Zota, a professor at Columbia University’s Mailman School of Public Health.
It is still unclear what causes fibroids, but evidence points to family history as a significant factor, as well as diet and physical activity. Some evidence suggests markers of chronic stress are associated with fibroid development. A recent study among women with hypertension, a disease linked to chronic stress and inflammation, found that those who used a type of medication that widened blood vessels had reduced odds of developing fibroids.
Zota led a study that found chemical levels in the environment affected fibroid growth differently between Black, Latina, and white women. “We are conceptualizing race, ethnicity, not as an intrinsic biological factor, but as a marker for [the] social experience,” she said.
She also co-authored an interview study that found clinicians steered Black women and Latina patients toward hysterectomy and dismissed patients’ concerns until they presented severe symptoms. “So it seems like, at times, there were missed opportunities for early intervention,” Zota said.
Certified health coach Tanya Leake and interventional radiologist Dr. Rochelle A. Wolfe co-direct the White Dress Project’s research committee. The committee kicked off its Fibroid Experience Survey this March. The survey aims to gauge people’s knowledge of uterine fibroids and where to intervene to increase awareness.
“We felt like there was a need to gather some additional information,” said Leake, who details her fibroid journey on Embody Well’s website. “Where should we be pushing for research? Where should we be trying to do our research?”
The lack of NIH funding for uterine fibroids has led to a shortage of information about fibroids development and support for increasing physician education around treatment options beyond hysterectomy.
“Enough is enough,” said Dr. Janice Newsome, division director and chief of interventional radiology and image-guided medicine at Emory University Hospital. “Why don’t we understand this fundamentally?”
Newsome specializes in uterine artery (or fibroid) embolization, which destroys the fibroid by blocking its blood supply with fine, sand-like particles. The procedure requires a small cut, making it minimally invasive. The issue is that an interventional radiologist performs the procedure, not a gynecologist — a tension that the Jones legislation could relieve by fostering physician partnerships that improve patient options, Newsome said.
She said the procedure would be more common if more obstetricians and gynecologists partnered with UAE specialists to offer the option to patients.
Kimberlee Wright, 52, knows the importance of a provider who presents all options, especially minimally invasive ones. She relied on Leake, a longtime friend, while recovering from treating her fibroids.
Wright underwent uterine artery embolization treatment for fibroids in 2017. Her gynecologist suggested the option.
“It wasn’t something I had to learn on my own. But at the same time, I know through others that those are not options being provided to them,” she said. “Hysterectomy, for some, is the first and only option being suggested.”
Newsome says even well-meaning physicians may not know to suggest embolization or other treatment options. “That’s where I think sister-to-sister education really matters,” she said.
Stanberry is hopeful that the fibroid bill will pass, given Tubbs Jones’ legacy and the Biden administration, which has put a lot of emphasis on women’s reproductive health. She also cites the bill’s 121 co-sponsors, including Democratic U.S. Sen. Cory Booker and Republican U.S. Sen. Shelley Moore Capito, which means the bill has co-leads on both sides of the aisle. Georgia supporters of the bill include Reps. Lucy McBath, Nikema Williams, Hank Johnson, and David Scott — all Democrats.
Although Democrats are the current majority in the House and Senate, Stanberry worries “timing” could be a barrier to seeing real movement on the bill, specifically that this is an election year, with two recess months this fall.
“There’s always a mad dash for everyone to get their bills passed and their priorities out there right before midterm elections in November,” she said. “One of the reasons why you see that is because, in November, we don’t know what could happen.”