The House Just Passed An Amendment That Doubled Endometriosis Research Funding

Rep. Abby Finkenauer, a Democratic congresswoman from Iowa, moved the House to pass an amendment that effectively doubled funding for endometriosis research.

Finkenauer is a first-term member of Congress and the second-youngest woman to have been elected to the U.S. Congress. She was diagnosed with endometriosis as a young woman and has been using her political position to raise awareness about it. After learning endometriosis “was one of the least funded conditions” by the National Institutes of Health, Finkenauer endeavored to change that. Her amendment has expanded funding for endometriosis research to $26 million annually, double the amount allocated in 2019.

Endometriosis is a chronic disease that occurs when tissue that normally lines the inside of the uterus starts growing outside the uterus. When this tissue grows where it does not belong, it can cause a plethora of problems, including severe pain, bleeding, inflammation, and painful sex. There is no known cause and no cure, though there are methods of managing the condition, including hormonal birth control, laparoscopy (a surgery that can remove lesions by either ablation or excision), pain medication, hysterectomy, and Lupron injections.

Experts believe this disease was misdiagnosed as a psychological disorder called “hysteria” in the 1860s, which often caused women to be exiled from society for apparently being possessed by the supernatural. There haven’t been major medical advancements in endometriosis treatment or even understanding how to diagnose the disease since the 1920s. On average, the process of being diagnosed with endometriosis takes between seven and 10 years, and, when left untreated, endometriosis can lead to further complications such as pelvic inflammatory disease and infertility.

Passing this amendment — in the midst of the coronavirus pandemic, no less — was, therefore, no small feat. In March, Finkenauer had launched the bipartisan House Endometriosis Caucus, which has a goal of looking to “up endo awareness, up endo funding, and up endo research.” With the help of her co-chair Jenniffer González-Colón, she established a 28-member team, consisting of many young and first-time elected women. The caucus highlights a few major points about the disease's effect on the country as a whole, noting that endometriosis is estimated to cost the U.S. over $78 billion each year in medical costs and work productivity. Finkenauer also noted that endometriosis “is a condition that doesn’t just affect women. It also affects the people who love the women who have it.”

Through speaking out about her personal experience with endometriosis, Finkenauer has inspired many women to reach out and open up about their own struggles with the disease. Endometriosis affects 7 million women in the United States and one in 10 women worldwide, adding up to an estimated 200 million women. The lack of public awareness about endometriosis, as well as the widespread “societal normalization of women’s pain and stigma around menstrual issues,” are just two of the factors holding the disease back from getting the research and attention it so desperately needs.

Finkenauer’s work with the bipartisan caucus is just getting started. This doubled funding is monumental for those dealing with the disease and will hopefully effectively bring more information about endometriosis treatment, diagnosis, and management to light. At the moment, she has turned her focus to the pandemic, but she is continuing to create programming around this endometriosis funding victory and will launch it when it is appropriate.