Reps. Williams, González-Colón, Adams, Underwood Introduce Legislation to Make Critical Investments in Endometriosis Research

WASHINGTON– Today, Congresswoman Alma S. Adams co-led the introduction of the bipartisan Endometriosis CARE Act, which would deliver $50 million annually to advance endometriosis research and expand access to treatment. The legislation is led by Congresswoman Nikema Williams (GA-05), and co-sponsored by Congresswoman Lauren Underwood (IL-14), and Congressional Endometriosis Caucus Co-Chair, Congresswoman Jenniffer González-Colón (PR-At Large). Despite the broad and significant impact of endometriosis, critics say chronic underfunding of women’s health research has resulted in a lack of innovation and understanding of the disease.

Endometriosis is a disease that affects more than 1 in 10 reproductive-aged women in the United States. It occurs when tissue, similar to the tissue that lines the inside of the uterus, grows outside the uterus, causing pain and interrupting the lives of millions of women daily. Currently, there is no known cause of endometriosis, and there is no cure. 

In honor of Women’s Health Month, let us acknowledge that health issues that only affect women still matter and should be worthy of everyone’s time," said Congresswoman Alma Adams, Ph.D., co-founder and co-chair of the Black Maternal Health Caucus (NC-12) "Endometriosis affects one in ten reproductive-age women, causing them regular pain and complicating their pregnancies. I’m proud to co-lead the Endometriosis CARE Act with Congresswoman Nikema Williams to fund research, detection, and treatment for the millions of women who have suffered in silence. This issue deserves attention. Women who suffer from endometriosis can't wait."

“The reintroduction of the Endometriosis CARE Act marks a renewed fight for funding to support millions of overlooked women, including myself, suffering from endometriosis," said Congresswoman Nikema Williams (GA-05), co-chair of the Congressional Endometriosis Caucus. "I have battled excruciating endometriosis pain since I was 14. The physical and financial burdens of endometriosis reflect ongoing disparities in women’s health research. The Endometriosis CARE Act will ease these burdens by investing in research to improve detection and treatment. We must act now for the estimated 6.5 million women in this country who suffer daily from endometriosis.”

“Endometriosis impacts every aspect of a woman's life, including her physical and mental health, career, and relationships, yet there is a glaring lack of scientific innovation and public awareness, and overwhelming stigma," said Congresswoman Lauren Underwood (IL-14). "The Endometriosis CARE Act will make sure we’re making proper investments in research so we can better understand this disease, paving a path for better treatment options. It will also establish a national campaign to promote public awareness, and eliminate barriers to treatment for millions of women who are suffering. With this bill, we’re bringing the needs of women impacted by Endometriosis into light and making sure no woman has to suffer in silence.” 

“Research indicates that over 5 million women in the States are living with endometriosis" said Congresswoman Jenniffer González-Colón, co-chair of the Congressional Endometriosis Caucus (PR-At Large). "In Puerto Rico, some estimates show a prevalence of 4%. Women with endometriosis struggle with chronic pain and other problems that impact their daily lives and their families. The Endometriosis CARE Act seeks to mitigate some of the challenges associated with the condition by supporting data collection, research, access to treatment, and increasing information available for providers to better detect and provide care for endometriosis. I am proud to be a co-lead of this bill and will work with my colleague, Rep. Nikema Williams, to move it forward.”

“Endometriosis is a public health crisis that is deserving of our attention," said Kathryn Schubert, President and CEO of the Society for Women’s Health Research. "It affects more than 6.5 million women in the United States, often goes undiagnosed or misdiagnosed for years, and has significant social and economic implications. Tackling this condition requires a multi-faceted approach that includes dedicated research funding and improving our national education and awareness efforts. The Endometriosis CARE Act of 2024 will help bridge the gaps that currently exist for endometriosis and—most importantly—will improve health and quality of life outcomes for women across the country. We thank Representatives Williams, González-Colón, Underwood, and Adams for their leadership to improve endometriosis outcomes and urge Congress to swiftly pass this legislation.”

"Since being diagnosed with endometriosis at 20 years old in March 2011, I've faced many challenges and understand the struggles this condition entails," said Lauren R. Kornegay, Founder & Executive Director of Endo Black, Inc. "The Endo Black, Inc. community and I wholeheartedly support the reintroduction of the Endometriosis CARE Act of 2024, championed by Representatives Lauren Underwood, Representatives Nikema Williams, and the Endometriosis Caucus. This vital legislation is a significant step forward in providing the necessary support for research, treatment, and increased awareness."

"As someone who lives with endo, I know firsthand the devastating impact of this disease," said Shannon Cohn, Film Director & Producer of ‘Below the Belt.’ "As a filmmaker, I've followed multiple women and their excruciating and traumatic journeys over many years. Millions of women are impacted, more research is necessary and the time is now. We have touched a nerve with our film, Below the Belt, and I am grateful to our leaders - Congresswoman Williams, Congresswoman Adams and Congresswoman Underwood - for taking action to get this legislation across the finish line."

"Fifty million is an excellent start to investing in women's health care," said Dr. Dan Martin, Scientific and Medical Director of the Endometriosis Foundation of America (EndoFound). "We need more funds for research and to eliminate barriers to patient access. Awareness and addressing demographic disparities are crucial. We welcome the renewed focus on the 10 to 20 million individuals with endometriosis including the undiagnosed group affected by inequalities in care, lack of education, and normalization of pain.”

The Endometriosis CARE Act would: 

• Invest $50 million annually for five years for endometriosis research through the National Institutes of Health;
• Commission a national study on the disparities in endometriosis prevalence, detection, treatments and outcomes by race, ethnicity, geography and insurance status;
• Establish a national campaign to promote public awareness of endometriosis;
• Identify barriers to accessing treatments for endometriosis symptoms, such as health care coverage, transportation, and health care professional shortages

The Endometriosis CARE Act is endorsed by the Society for Women’s Health Research, the Endometriosis Foundation of America, Endo Black Inc., Endo What, The American College of Obstetricians and Gynecologists and the March of Dimes. 

A one pager on the Endometriosis CARE Act is available on Congresswoman Nikema Williams' website.

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Congresswoman Alma S. Adams, Ph.D. represents North Carolina's 12th Congressional District (Charlotte, Mecklenburg County, Cabarrus County) and serves on the House Committee on Agriculture and the House Committee on Education & the Workforce, where she serves as ranking member of the Workforce Protections Subcommittee.