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Congresswoman Nikema Williams, Colleagues, Introduce Legislation for Endometriosis Research and Awareness 

Congresswoman Nikema Williams, Colleagues, Introduce Bipartisan Legislation to Make Critical Investments in Endometriosis Research and Awareness

Today, Congresswoman Nikema Williams (GA-05), and Congresswomen Alma Adams (NC-12), Jenniffer González-Colón (PR-AL), and Lauren Underwood (IL-14), introduced the bipartisan Endometriosis CARE Act, legislation which would fund investments needed to advance endometriosis research, develop and expand access to treatments, and promote public awareness. Despite the significant impact of endometriosis on the lives of women who are affected by it, the normalization of women’s pain and the stigma surrounding menstrual issues have resulted in a lack of scientific research and public understanding. The bipartisan Endometriosis CARE Act aims to address these gaps.

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 infertility and painful sex, cramps, and bowel movements. Currently, there is no known cause of endometriosis, and there is no cure.

Congresswoman Williams, Co-Chair of the Congressional Endometriosis Caucus, and whip of the Democratic Women’s Caucus said:

“Endometriosis is an under-researched, underfunded, and underdiagnosed disorder that affects millions of people, including me. I have lived with endometriosis since I was 14 years old and know firsthand that the awareness and resources needed to treat endometriosis are unacceptably low. The Endometriosis CARE Act will help change that. Collaborating with my Endometriosis Caucus Co-Chair Congresswoman Jenniffer González-Colón as well as Congresswomen Alma Adams and Lauren Underwood, we will bring relief for the one in 10 women in America struggling with endometriosis.”

Congresswoman Adams, co-founder and co-chair of the Black Maternal Health Caucus said:

“Endometriosis affects over seven million women in the United States, but many of them are unaware. Even though the disease is not well understood, National Institutes of Health (NIH) and other research funding for endometriosis is limited. Often, the disease makes parents who want children experience a painful, complicated pregnancy or even worse. Women suffering from this condition deserve better care. Our Endometriosis CARE Act will invest in research, detection and treatment for the millions of people who suffer from endometriosis. This issue deserves attention. Women who suffer from endometriosis can’t wait.”

Congresswoman González-Colón said:

“Endometriosis is often a highly painful and disruptive condition that affects a large number of women of reproductive age in our country. Unfortunately, many of them don’t know it. Some of the challenges stem from lack of information and awareness, issues with securing a proper diagnosis, lack of resources and research that can improve the detection of endometriosis, proper treatment, among others. The Endometriosis CARE Act, which I am joining Reps. Underwood and Williams in introducing, seeks to invest in research, increase awareness, and study the current impediments surrounding detection and treatment of endometriosis. I look forward to continuing working alongside them and our colleagues in Congress in support on this bill and the women it seeks to impact.”

Congresswoman Underwood said:

“We must make progress in research and education to effectively treat and comprehensively support women affected by 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. I introduced this legislation to correct this oversight and invest in evidence-based solutions that support women affected by this disease.”

Padma Lakshmi, co-founder of EndoFound said:

“Thank you to Representatives Lauren Underwood and Nikema Williams and the House Endometriosis Caucus for creating the Endometriosis CARE Act and carrying forward this long-overdue correction to how we regard women’s reproductive health issues. I started EndoFound thirteen years ago with my surgeon, Dr. Tamer Seckin, so we could create awareness and support the millions of individuals in the U.S. who have endometriosis. We need to make sure that ALL individuals with endometriosis have access to the information and care they need and I believe that the Endometriosis CARE Act will do just that.”

The Endometriosis CARE Act would:

  • Invest $30 million per year in endometriosis research through the National Institutes of Health;
  • Identify barriers to accessing treatments for endometriosis symptoms, such as health care coverage, transportation, and health care professional shortages;
  • Establish a national campaign to promote public awareness of endometriosis;
  • Facilitate the dissemination of information about evidence-based endometriosis care to health care professionals and health systems; and
  • Commission a national study on disparities in endometriosis prevalence, detection, treatments, and outcomes by race, ethnicity, geography, and insurance status.

The Endometriosis CARE Act is cosponsored by Representatives Nikema Williams (GA-05); Alma S. Adams, Ph.D. (NC-12); Jenniffer González-Colón (PR-At Large); Al Lawson (FL-05); Jahana Hayes (CT-05); Adriano Espaillat (NY-13); Mark Pocan (WI-02); and Ted Lieu (CA-33). A fact sheet and additional quotes in support of the legislation can be found here.

The Endometriosis CARE Act is endorsed by A Better Balance, Alliance for Black NICU Families, American Association for Psychoanalysis in Clinical Social Work, American College of Nurse-Midwives, American College of Obstetricians and Gynecologists, Ancient Song Doula Services, Arika Trim Foundation, Association of Maternal & Child Health Programs, Atlanta Doula Collective, Inc., Babyscripts, Black Mamas Matter Alliance, Ceeing You Through, Childbirth Survival International, Center for Law and Social Policy (CLASP), Cookie La Doula, LLC, Council of Public Health Nursing Organizations, Endo What?, Endometriosis Association, Endometriosis Foundation of America, Endometriosis Summit, Every Mother Counts, GLO Preemies, Jacobs Institute of Women’s Health, Japanese American Citizens League, JMM Health Solutions, KoKo Kares Doula Services, LLC., March of Dimes, Maternal Mental Health Leadership Alliance, Melinated Moms, Momma’s Village-Fayetteville, Inc, Mothering Justice, National Association of Nurse Practitioners in Women’s Health, National Birth Equity Collaborative, National Health Law Program, National Medical Fellowships, National Partnership for Women & Families, National WIC Association, National Women’s Health Network, NETWORK Lobby for Catholic Social Justice, Physician Assistant Education Association, Postpartum Support International, PreemieWorld, LLC, Rural Nurse Organization, Santa Barbara Women’s Political Committee, Shades of Blue Project, Society for Public Health Education, Society for Women’s Health Research, Urban Baby Beginnings, Wayne State University, What to Expect Project, Wisconsin Alliance for Women’s Health, Women First Research Coalition, and Yeye’s Gift Doula Services, LLC.

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