Capitol Hill Building at dusk with light and blue sky, Washington DC.

Fibroids are a severe issue that women have been dealing with for decades. Fibroids are noncancerous growths that form in the uterus. This problem is not fatal; however, it can affect a woman’s ability to have children. Each case of fibroids is different. Some women do not realize they have it until they visit their doctor after a menstrual period that is more painful than usual.

This medical matter is coming to the congressional level. Last year, the Stephanie Tubbs Jones Uterine Fibroid Research and Education Act was presented to the U.S. Congress by Senator Cory Booker. This act would create research and public education programs to support women suffering from uterine fibroids. As this topic gradually moves to the center of the conversation, more women with fibroids can rest assured they are not alone in this battle.

“The passage of that bill will check off all the boxes that will enable us to get to the point of better care for women. We can be at a point of really doing something about it versus just talking,” Paula Green-Smith, training manager for the Black Women’s Health Imperative said.

How it all began

The Stephanie Tubbs Jones Uterine Fibroid Research and Education Act was brought to Congress by Senator Cory Booker in July 2021. It is named after the late Stephanie Tubbs Jones, a U.S. senator who advocated women’s health issues and suffered from fIbroids herself.

As of this writing, the bill has been taken up at a legislative hearing at the subcommittee for health. The bill must be voted out of committee and placed on the House floor for a vote, and the Senate needs to vote it out of the floor to reach the president for it to be signed into law.  

When the congressional bill is active, national health institutions will receive a grant of $150 million over five years for fibroid research. The research would spark the development of a new technology to tackle fibroids. The study would also explore why fibroids affect Black women more than other races. According to Johns Hopkins Medicine, Black women are more likely to develop fibroids than other women. Black women are diagnosed at younger ages and more often require treatment.

Fibroid research is severely underfunded. According to Green-Smith, when the bill becomes active, centers for Medicaid and Medicare would improve data collection to explore why Black women have an elevated risk for fibroids. The activation of the bill would lead to the CDC creating public education programs that would help women ask their doctors the right questions and equip medical professionals with the information they are lacking.

“You can have all the passion and commitment in the world, but you got to have the money to back that up for things to really move. The bill would fund the different agencies that can help us with the policy, can help us with the research, and can help with the advocacy.” Green Smith said.

In the meantime, BWHI continues to serve as a source for women with fibroids.This organization is dedicated to solving the most pressing health issues affecting Black women and girls in the United States. BWHI created Fibroids Unmuted, a campaign that gives Black women a safe space to discuss this topic and learn information that can make a difference in their approaches to fibroids.

“We wanted to give Black women a space to talk about fibroids without the shame or negative emotions this subject brings. We had conversations with the intention to spark research and policies that will provide more compassionate care for Black women,” Green-Smith said.

Surgery isn’t the only answer

An unfavorable solution to the fibroids problem is surgery. Women can have their fibroids surgically removed, but that can affect their opportunity to have children. Unfortunately for Black women, most of them have their doctors recommend getting a hysterectomy, the removal of the uterus. BWHI is advocating for more treatment options for Black women with fibroids. Because the information on the alternatives is not shared enough, women do not know, and they end up going with the first option presented to them.

“The real point of this is to stop offering just a hysterectomy. This is the first option being offered to black women, and it’s a problem. Especially when these women have said, `It is most important to me to be able to have children at some point in my life,’” Green-Smith said.

There are a few medications women can select to solve their fibroids issue. According to the Mayo Clinic, women can take Gonadotropin-releasing hormone or GnRH agonists and Progestin-releasing intrauterine device orIUD. These medications do work but they have peculiar side effects. GnRH blocks the production of estrogen and progesterone and puts users into a temporary menopause-like state. IUD stops the heavy bleeding caused by fibroids, but it prevents pregnancy. 

In an article on alternatives to hysterectomies, the Journal of the Society of Laproscopic & Robotic Surgeons, Dr. James E. Carter writes, “Laparoscopic myolysis can also be proposed as an alternative to abdominal hysterectomy in cases of large or multiple intramural fibroids in women over 40 who do not desire to bear children but who wish to avoid hysterectomy,” which can reduce the size of the uterine fibroid by 40%. 

A woman’s struggle

Lenee Reedus-Carson is an example of not receiving adequate care for fibroids. She went through three different surgeries to solve this problem. Reedus-Carson is 52 and a senior program manager for BWHI. She was diagnosed with fibroids at age 28. She didn’t realize it was fibroids until she went to the doctor after too many accidents on her cycle. Her doctor explained to her that she had fibroids.

From that visit, she discovered it runs in her family. She later spoke to her mother and aunts, and they shared that some of them got full and partial hysterectomies. Before her doctor’s visit, Reedus-Carson believed it was just discomfort that she could push through.

“The entire time I was experiencing those uncomfortable menstrual cycles, I just thought it was normal. The pain just got so bad, and I noticed that I became so weak that there were times I couldn’t get out of bed,” Reedus-Carson said.

BWHI is trying to end more stories like Reedus-Caron’s. Between their efforts on this subject and the movement of the Stephanie Tubbs Jones Uterine Fibroid Research and Education Act, there is hope for better care for Black women with fibroids.