About UpEndo

UpEndo is an initiative by the Endometriosis Foundation of America (EndoFound). Its aim is to increase awareness about endometriosis among policymakers and the general public and to push for prioritization in research and education.

About endometriosis

Endometriosis is a chronic, progressive, debilitating disease that can drastically reduce an individual’s overall quality of life. According to the World Health Organization (WHO), nearly 10% of women of reproductive age have endometriosis. In the U.S., between 2 and 10% of women of childbearing age show endometriosis symptoms.

These include pelvic pain, painful periods, painful intercourse, abnormal uterine bleeding, menstrual clots, bloating in the abdomen, and infertility.

While early diagnosis and treatment is the best way to deal with endometriosis, there are several impediments. These include low awareness about the disease in the general population, limited funding for public research, and minimal engagement among policymakers about the importance of the issue.

Abby Finkenauer’s efforts to double federal endometriosis funding

In 2020, the U.S. Congress approved an amendment to double federal funding for endometriosis research from US$13 million to US$26 million for the fiscal year beginning October 1, 2020. The National Institute for Child Health and Human Development (NICHD) oversees federal endometriosis research.

This amendment was introduced by Congresswoman Abby Finkenauer (IA-01), chairwoman of the House Endometriosis Caucus. Finkenauer, 31, was first diagnosed with endometriosis in her teens. While seeking answers for her own debilitating endometriosis pain, she discovered the resources offered by EndoFound.

Since then, she has interacted with many women with endometriosis and has worked closely with EndoFound including its co-founder Dr. Tamer Seckin to raise awareness about the disease. She constituted the first-ever 33-member bipartisan caucus dedicated to endometriosis.

The UpEndo Coalition

To further support endometriosis education and research in Congress, EndoFound announced the creation of the UpEndo coalition. UpEndo builds upon Finkenauer’s 2020 funding success to promote an increased understanding of the short- and long-term implications of endometriosis to both the public and Congress. It aims to ensure that policymakers see endometriosis as a priority and facilitate advanced research and information dissemination.

UpEndo specifically focuses on Congressional committees. These include the House and Senate Health Appropriations Subcommittees and authorizing committees that have jurisdiction in matters of public health. UpEndo’s aims include:

• Supporting the Congressional Endometriosis Caucus in its goals of advocating education and research funding through appropriations, federal agency and White House engagement, and policy changes
• Educating the public and the federal government on the symptoms and costs associated with endometriosis and sensitizing them to the impact of the disease on a personal and familial level
• Increasing awareness to available modes of management and treatment options such as laparoscopic deep excision surgery for women currently living with endometriosis

Additionally, the UpEndo coalition will work on increasing exposure via Congressional hearings, White House initiatives, and media events. It will also work with thought leaders outside of government and other leading think tanks in women’s reproductive health.

Finally, UpEndo will identify local opportunities for endometriosis education and push states to implement legislation such as the 2019 New York State menstrual health and endometriosis law.

Participating in UpEndo

The general public is welcome to participate in UpEndo’s activities and give ideas for shaping its policy and communications. Interested persons can contact Jeanne Rebillard, Director of Communications and Government Relations, at jeanne@endofound.org or text or call 845.518.4636.