July is Fibroid Awareness Month & Organizations are Speaking out to Support Bill H.R. 2007, Introduced in March
H.R. 2007, The Stephanie Tubbs Jones Uterine Fibroid Research and Education Act of 2021, is in the first stage of the legislative process. It was introduced into Congress on March 18, 2021.
Congresswoman Yvette D. Clarke (NY-09) introduced the bill to increase research funding for uterine fibroids, improve awareness and training, and seek to measure the cost to government payers. The bill also highlights the need for improved patient and provider education surrounding the heightened risk for fibroids faced by women of color.
"The introduction of the Stephanie Tubbs Jones Uterine Fibroid Research and Education Act of 2021 is a monumental step in the movement towards uterine fibroid research to uncover much-needed answers for people managing life with uterine fibroids. We are thrilled and grateful to Congresswoman Clarke for her actions and commitment to ensuring uterine fibroids research is a priority,” Valbrun said. “As a community of patients and caregivers, The White Dress Project is committed to doing everything we can to ensure lawmakers understand how important these research dollars are. We live with the reality of a condition that comes with more questions than answers. Our stories, our experience, and our voice matters.”
What are Uterine Fibroids?
More than 2.8 million women in the U.S. are diagnosed with uterine fibroids, including me. I've known I had them in my 20's as one showed up on my ultrasound when I was pregnant with my first child. They didn't affect either of my pregnancies, but they were present during both. What the fibroids have always affected up to now are my periods. Heavy, unpredictable periods.
Uterine fibroids are muscular noncancerous tumors that grow in the uterus and range from the size of a pea to that of a football or larger, affect an estimated 26 million U.S. women between the ages of 15 and 50. It is estimated that 70 to 80 percent of women will develop fibroids in their lifetime however, not everyone will develop symptoms or require treatment.
Uterine fibroids are the most common gynecologic condition in women, however, treatment options and medical research funding have yet to match the enormity of the affected community. Fibroids should be considered a public health issue, given the magnitude of the problem and the costs of health care for this disease.
The "Uterine Fibroids: Burden and Unmet Medical Need" 2017 study found that "using ultrasound screening, the estimated cumulative incidence rate of UF(uterine fibroids) by the age of 50 is significantly higher in black women (80%) compared with white women (nearly 70%).
Source: The Health Disparities of Uterine Fibroids for African American Women: A Public Health Issue
Supporting the Bill
There are many organizations supporting the H.R. 2007 Bill facilitating the community to help.
The Fibroid Foundation stated that it is proud to support the bill and celebrated Fibroid Awareness month with events themed "Living Your Best Life" as women with symptomatic uterine fibroids often experience a diminished quality of life.
The Fibroid Foundation is asking for support in all states and offers a letter of support template that can be downloaded to send to congressional representatives.
Sateria Venable, Founder & CEO of The Fibroid Foundation, responded to yesterday's introduction of the Fibroid Bill by saying, "Consistent fibroid research funding will transform the quality of life for millions of women in the United States."
Black Women's Health Advocates (BWHI) applaud the legislation by thanking senators, Cory Booker and Shelley Moore Capito for their support of the Stephanie Tubbs Jones Uterine Fibroid Research and Education Act of 2021. BWHI calls it a "critical piece of legislation shines a light on fibroids."
"There is not adequate data to understand why Black women are affected more frequently and with more severe complications from uterine fibroids," said Linda Goler Blount, President and CEO of the Black Women's Health Imperative (BWHI). "Uterine fibroids are a health threat that urgently requires research, community resources, and improved treatment options that preserve fertility. BWHI supports this legislation because it will increase funding for uterine fibroid research and lead to new evidence-based treatments and cures for women of color."
The White Dress Project is a patient advocacy organization dedicated to raising global awareness about the uterine fibroid epidemic through education, research, community, and advocacy. They ask for the public to use its power to get insurance companies to cover fibroid treatment options by signing this petition.
"The introduction of the Stephanie Tubbs Jones Uterine Fibroid Research and Education Act of 2021 is a monumental step for women and girls everywhere," said Tanika Gray Valbrun, Founder and CEO of The White Dress Project. "There is much more work to be done to address the uterine fibroid crisis. We need more education, more research, and full commitment from our policymakers to address healthcare inequities and to understand why fibroids disproportionately affect Black women."
Society for Women's Health Research (SWHR) offers a Focus on Fibroids Fact Sheet which can be downloaded. They state that there is a pressing need for improvements in the prevention, diagnosis, and treatment of fibroids. However, more research funding is needed to achieve these goals.
SWHR recently hosted a virtual congressional briefing to raise awareness of policy needs to improve care for individuals with uterine fibroids.
All three health advocacy groups; Black Women's Health Advocates, The White Dress Project, and Society for Women's Health Research, will virtually descend on Capitol Hill on July 27, 2021, with the first-ever Fibroid Awareness Month Virtual Day.
The event will bring patients and physicians from around the US together for "Speak Up Day" to call for the passage of the Stephanie Tubbs Jones Uterine Fibroid Research and Education Act of 2021.
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