Lupita Nyong'o joins fight to fund fibroids research: 'I no longer want to remain silent'

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WASHINGTON ‒ For more than a decade, actress Lupita Nyong'o has stayed quiet.

The "Black Panther" star has long suffered from ‒ and declined to speak publicly about ‒ a medical condition called uterine fibroids.

But on July 15 she told members of the Congressional Black Caucus through tears that the need for more federal research funding for the condition outweighs her own discomfort.

"I no longer want to remain silent,’’ she said. "That’s why I want to share my personal story for the first time … so we can invest in this research and find early detection and treatment and solutions.”

Treatment for the growths, which disproportionately affect Black women, has advanced so little that many women end up with a hysterectomy ‒ the surgical removal of their uterus, which leads to infertility and early menopause. Many also suffer symptoms such as heavy bleeding and disabling pain.

Eight in 10 Black women and 7 in 10 white women will experience fibroids.

"When we reach puberty, we're taught that periods mean pain and that pain is simply part of being a woman," , Nyong'o said in a July 15 Instagram post.

Nyong'o's Instagram post garnered 252,000 likes and was shared nearly 10,000 times.

"We need to stop treating this massive issue like a series of unfortunate coincidences," she said, calling for better screening and more research.

Congressional Black Caucus members acknowledge that getting more funding will be difficult at a time of budget cuts, but they said said it's important to try. They said the health issue should garner bipartisan support for legislation they reintroduced July 15 because it affects so many women of every ethnicity.

Rep. Yvette Clarke, D-N.Y., chairwoman of the Congressional Black Caucus, introduced the Stephanie Tubbs Jones Uterine Fibroids Research and Education Act named after the late congresswoman from Ohio who championed the legislation for years before her 2008 death.

The bill would set aside $150 million over five years for disease research at the National Institutes of Health. It would also boost awareness and improve training of medical professionals in how to detect and treat the disease.

“(We are in) a crisis of medical misinformation, confusion and self doubt,’’ Clarke told the roundtable. “It is a crisis of intentional neglect and limited resources.”

Caucus members also introduced other bills to bring attention to uterine fibroids, improve early detection and treatment and expand data collection.

Lawmakers and advocates have long complained about the lack of research into fibroids, and especially about their disproportionate impact on Black women.

Uterine fibroids are the most common gynecologic condition in the United States, affecting up to 80% of Black women and nearly 70% of all women by age 50, said Sateria Venable, CEO & Founder of the Fibroid Foundation.

“It’s far past time that we solve this public health crisis,’’ Venable said.

‘A threat I never saw coming’

Lawmakers hope Nyong'o sharing her story and using her platform will elevate the pressing issue.

The 42-year-old Academy award winning actress, has starred in movies such as "Black Panther," "Black Panther: Wakanda Forever," "Us," "12 Years a Slave," "Quiet Place" and "Queen of Katwe."

Nyong'o said that it was in 2014, the year she won the Oscar, that she also learned she had 30 fibroids.

“So while the word was celebrating my achievement with me, I was privately … contending with a threat to my reproductive system and a threat that I never saw coming,’’ she said.

Nyong'o said she had lots of questions for her doctor. What are fibroids? How did they happen? What could she have detected them? What are her treatment options?

The answers and options, she said, were unsatisfying.

“The norm cannot be a hysterectomy,’’ said Nyong'o, who announced a new partnership with the Foundation for Women's Health to award a $200,000 research grant. “Transformation begins with understanding and understanding requires research. So let’s start researching some female bodies.”

Rep. Shontel Brown, D-Ohio, who also had fibroids and is a lead sponsor on legislation, said hosting the roundtable and introducing bills are key steps.

"It's important that we normalize the conversation…,'' she said. "It is time to break the silence.”