By Dezimey Kum, SWHR Communications and Policy Intern
About 26 million individuals in the United States have uterine fibroids, nonmalignant tumors that grow in the wall of the uterus and may cause symptoms such as heavy or irregular menstrual bleeding and pelvic pressure or pain. Black women are at particularly high risk of developing fibroids and tend to suffer more severe symptoms from the disease. Unfortunately, there is a great deal we still do not understand about what causes the disease, how fibroids present, and how best to treat or manage symptoms.
Given the significant burden of fibroids on women, one of SWHR’s priorities this year is to bring increased understanding and attention to this often overlooked disease. Therefore, SWHR is excited to endorse the recently updated and re-introduced Stephanie Tubbs Jones Uterine Fibroid Research and Education Act of 2021. Championed by Rep. Yvette Clarke (D-NY), this legislation is designed to improve funding for research and increase education about uterine fibroids.
The bill was first introduced by its current namesake, the late Rep. Stephanie Tubbs Jones (D-Ohio), in the House in 2001. Clarke and then-Senator (now Vice President) Kamala Harris reintroduced the legislation last year.
“Public awareness and research funding for this disease remains startlingly low,” SWHR President and CEO Kathryn Schubert, MPP, said after the bill’s introduction in 2020. “Greater public awareness of fibroids will spark essential conversations among women, their families, and their health care providers about menstrual conditions, which are often stigmatized and dismissed by society.”
Uterine fibroids are a common gynecological condition, with up to 77% of women developing fibroids before menopause. Black women are more prone to the disease, tend to develop fibroids earlier in life and have larger tumors, and are three times more likely to be hospitalized for the condition than white women. Medical professionals do not understand the cause of fibroids or why they occur more frequently in Black women.
Women with symptomatic fibroids may experience heavy or lengthy menstrual periods, bladder or bowel dysfunction, anemia, fatigue, impaired fertility, and pregnancy complications or loss. Hysterectomy — the removal of the uterus— has long been considered a standard treatment for fibroids, but it is an invasive surgery that ends fertility and is associated with long-term health risks. Fibroids are the main reason for hysterectomy in the United States, accounting for about 39% of these surgeries. There is a concerning lack of fertility-preserving, noninvasive treatments available to patients with fibroids.
The Stephanie Tubbs Jones Uterine Fibroid Research & Education Act of 2021 will address inequities in fibroid diagnosis and treatment by:
- Establishing new research funding through the National Institutes of Health (NIH), totaling $150 million over five years;
- Expanding a Centers for Medicare and Medicaid Services (CMS) database on chronic conditions to include information on services for individuals with fibroids;
- Creating a public education program through the Centers for Diseases Control and Prevention (CDC); and
- Directing the Health Resources and Services Administration to develop and disseminate fibroids information to health care providers.
The bill also highlights the need for improved patient and provider education surrounding the heightened risk for fibroids faced by women of color.
“SWHR is pleased to honor the legacy of Rep. Tubbs Jones by supporting the Stephanie Tubbs Jones Uterine Fibroid Research & Education Act of 2021,” Schubert said. “We are hopeful that greater attention to this disease in the new Congress will lead to more fibroids research, the discovery of new treatments, and improved care for patients.”
To learn more about uterine fibroids, view the work of SWHR’s Endometriosis and Fibroids Network.