Uterine fibroids affect millions of women. Why has this condition been overlooked for decades?

In 2007, the late Rep. Stephanie Tubbs Jones (D-Ohio) wrote an op-ed calling for passage of her bill to increase research funding and public education for uterine fibroids. She stressed the need for “new and better ways to treat or even cure uterine fibroids.” Fourteen years later, her bill still has not passed and this extremely common gynecological condition remains an overlooked and underfunded public health issue.

Fibroids are non-cancerous tumors that grow in the wall of the uterus. Most American women will develop them at some point in their lives. An estimated 26 million Americans have fibroids, and of those, about 15 million suffer from debilitating symptoms, including heavy menstrual bleeding, intense pelvic pressure or pain, bladder problems, and fertility issues.

Black women are at increased risk for the disease compared to white women. They also develop fibroids earlier in life, have larger and more numerous tumors, report more intense symptoms, and have higher rates of surgery and hospitalization than white women.

My life with fibroids began when I was about 14 years old. I experienced extraordinarily heavy and painful menstrual periods but, even though my symptoms interfered with my everyday life, I wasn’t diagnosed with fibroids until I was 25. Research has shown that Black women like me report significant delays in fibroid diagnosis, find it harder to get valid information on treatment, and are more likely to experience symptoms longer before seeking treatment. Research also shows that race often plays a role in health disparities, which could have contributed to my delay in diagnosis.

Finding a treatment path proved equally difficult because information on treatment options wasn’t easy to find and guidance from my physicians was inconsistent. Some doctors dismissed my experiences and concerns. At age 29, I was told that a hysterectomy would be my best and only option, devastating news that made me become an advocate for myself and other women living with fibroids. To do that, I founded the advocacy group The White Dress Project.

I ultimately chose to have a myomectomy — a less invasive procedure that leaves the uterus intact — to extract 27 fibroids. Unfortunately, fibroid removal is not always a long-term solution. I’ve since undergone additional procedures to remove new fibroids and continue to work with my health care providers to manage symptoms.

Although fibroids are so common, experts still don’t fully understand what causes them or how to prevent them. Another unknown is how best to treat fibroids without resorting to invasive surgical procedures that can drastically impact fertility. And there is no clear answer as to why Black women are disproportionately affected by the disease.

These facts were true 20 years ago when Tubbs Jones first introduced her bill aiming to improve fibroid research, and they remain true to this day. Despite numerous reintroductions, the Uterine Fibroids Research and Education Act never received more than modest support while its original champions — Tubbs Jones and Sen. Barbara Mikulski (D-Md.) — were in office.

Fortunately, a co-sponsor of the version of the bill introduced in 2007, Rep. Yvette Clarke (D-N.Y.), resurrected the bill in the 116th Congress, where it was also introduced in the Senate by then-Senator and now Vice President Kamala Harris.

In the 117th Congress, the bill was renamed as the Stephanie Tubbs Jones Uterine Fibroid and Education Act of 2021 in honor of its original champion. It is strongly supported by organizations such as the Society for Women’s Health Research, Fibroid Foundation, and Black Women’s Health Imperative.

The content of the bill remains as relevant today as was the original content, in part because the quality of life for people with fibroids has seen minimal improvement over the past two decades. Just two drugs have been approved to treat fibroid symptoms, but otherwise treatments remain as invasive as ever and research is slim.

In 2019, fibroids received just $17 million in research funding from the National Institutes of Health, putting it in the bottom 50 of almost 300 funded conditions, even though the direct and indirect medical costs related to fibroids amount to an estimated $35 billion each year in the U.S. alone.

To improve treatment for fibroids, or even find ways to prevent them, researchers must better understand the biology of the disease. The Stephanie Tubbs Jones Uterine Fibroids Research and Education Act would dedicate more money to research — an additional $30 million annually over five years. It would create a public education program, increase provider awareness, and improve tracking of services provided through the Centers for Medicare and Medicaid Services. It would also highlight the need for better patient and provider education surrounding the heightened risk for fibroids in women of color.

In her 2007 op-ed, Rep. Tubbs Jones wrote, “Women deserve better.” They still do. It is far past time that uterine fibroids — and women’s health — be taken seriously. By passing the Stephanie Tubbs Jones Uterine Fibroids Research and Education Act, Congress would be taking a step toward prioritizing the health care and quality of life for women across the United States.

Tanika Gray Valbrun is a journalist, educator, and founder of the uterine fibroid advocacy group The White Dress Project.