U.S. House Approves Doubling Funding for Endometriosis Research to $26 Million Annually
Iowa Rep. Abby Finkenauer, who credits EndoFound for helping her go public with her endo story, leads the charge
Washington, D.C. – An amendment to double federal research funding for endometriosis was approved Thursday by the U.S. House of Representatives, from $13 million in 2019 to $26 million for the fiscal year beginning Oct. 1, 2020.
The amendment was introduced by Congresswoman Abby Finkenauer (IA-01), chairwoman of the House Endometriosis Caucus, who has also worked this year with the Endometriosis Foundation of America (EndoFound) to raise awareness about the disease.
Finkenauer, 31, has had endometriosis since she was a teenager. She publicly shared her story for the first time in March during a speech on the House floor. It was then when she founded the 33-member bipartisan caucus, the first such caucus ever dedicated to endo.
“Endometriosis is under-researched and suffers from a lack of proven and effective treatments,” Finkenauer said in a statement released by her office today after the House approval. “Doubling research funding will provide critical additional capacity for studying endometriosis, developing effective treatments and improving the quality of life for millions and millions of women. This is a game-changer.”
Finkenauer was in severe pain one day in February before a flight from D.C. to Iowa. Desperate for answers, she discovered EndoFound in a Google search. When she read on the website about the lack of funding for research, she decided it was time to use her platform to change that.
Finkenauer has spent time the past several months listening to stories from women with the disease and speaking with endometriosis experts, including EndoFound cofounder Dr. Tamer Seckin.
“I am grateful for Congresswoman Finkenauer’s hard and swift work in securing this funding,” Seckin said. “Endometriosis research needs to be a priority. She and the caucus recognized that, and they wasted no time doing something about it.”
The congresswoman joins a long list of high-profile women in recent years who have stepped forward to share their endo journeys and create change. In October 2018, journalist Diana Falzone testified on Capitol Hill about the lack of endometriosis awareness, education and research funding.
“As a woman with endometriosis, I find myself asking why one in 10 females in the United States has to live in debilitating pain without many treatment options, nonetheless a cure,” Falzone said. “This funding will exponentially help expedite the quest to find more answers to this perplexing, little known disease and hopefully bring endometriosis sufferers the pain-free, healthy life they deserve."
Endometriosis affects an estimated 200 million women worldwide. Many of them begin feeling symptoms with their first menstrual period, but because of the lack of education and awareness, even among medical professionals, it often takes more than a decade to be properly diagnosed.
Federal endometriosis research is overseen by the National Institute for Child Health and Human Development. The funding secured with the amendment will increase the NICHD’s overall budget.
STATEMENTS ON ENDOMETRIOSIS AMENDMENT TO PASS HOUSE 7.30.2020
"When former First Lady Betty Ford publicly discussed her breast cancer, a taboo subject at the time, the increase in awareness and timely detection led to a steep drop in mortality. When Padma Lakshmi publicly discussed her endometriosis ten years ago, she launched the same worldwide awareness about a taboo topic and has already helped countless women get diagnosed and properly treated.
Padma Laksmi is the 'first lady' of endometriosis. I thank her, always, for her courage and leadership in discussing taboo subjects such as menstruation. Awareness leads to early diagnosis and timely intervention that will save so many women from living in agony, losing organs, and losing their quality of life. Thank you, Congresswoman Finkenauer, and those on the Endometriosis Caucus for championing this cause. With your support, we can achieve the same success in endometriosis and change the future of American women's health." Tamer Seckin, MD, FACOG, ACGE Co-founder, Endometriosis Foundation of America, Seckin Endometriosis Center, Lenox Hill Hospital.
"Dr. Seckin saved my future children's lives when he stitched together my ovary like a patchwork quilt. As a result, I have been able to fall pregnant for the first time in my life. The debilitating pain I was in before my 6-hour surgery is completely gone now. The level of treatment I had should be available to all women, not just those who can afford the top surgeon in the world. Funding for endometriosis research will save the lives of the leaders of tomorrow." Kym Jackson, CEO, Author, Actress.
“Endometriosis is a very common yet under-recognized disease. It can cause tremendous pain and disability. Funding for endometriosis will go a long way to help the millions of affected women.” Hugh S. Taylor, M.D., Anita O’Keeffe Professor of Women’s Health and Chair, Department of Obstetrics, Gynecology and Reproductive Sciences, Yale School of Medicine, Chief of Obstetrics and Gynecology, Yale-New Haven Hospital
"Dr. Seckin and I went to Capitol Hill where I testified about the lack of endometriosis awareness, education and research funding in October 2018. After my speech, many young women approached me, some with tears in their eyes, saying I think I have endometriosis. I had no idea painful periods were not normal. As a woman with endometriosis, I find myself asking why 1 in 10 females in the United States have to live in debilitating pain without many treatment options nonetheless a cure. This funding will exponentially help expedite the quest to find more answers to this perplexing, little known disease and hopefully bring endometriosis sufferers the pain free, healthy life they deserve." Diana Falzone, Journalist and Member of Endometriosis Foundation of America Advisory Board
"Thank you Congresswoman Finkenauer for your unprecedented support in Congress for endometriosis and endometriosis research! Your push for this funding gives hope to researchers, doctors, and most importantly to patients for an improved quality of life once a cure and non-invasive diagnostic are available." Katherine A. Burns, PhD, Assistant Professor, Department of Environmental and Public Health Sciences, University of Cincinnati College of Medicine
“Research will lead to better diagnosis and treatment options, and someday a cure for endometriosis. Thank you to EndoFound for amplifying the voices of all of us suffering from this disease and thank you, Congresswoman Finkenauer, for prioritizing a disease that affects 1 in 10 women.” Molly Qerim Rose, American sports anchor and moderator for ESPN's First Take
“This is a critical milestone for endometriosis research. There is much work needed to identify endometriosis early and enable women with endo to live healthy and productive lives. Thanks to the fantastic work of Congresswoman Finkenauer and advocacy of EndoFound, the research community can finally have the funds it needs to advance research in a transformative way. I am excited and grateful.” Noemie Elhadad, PhD, Associate Professor, Biomedical Informatics, Computer Science, Data Science Institute, Columbia University
“Congresswoman Finkenauer and members of the House Endometriosis Caucus, thank you. We as devoted members of the board of the Endometriosis Foundation of America are so proud and thankful to become partners with you in our efforts to combat this pervasive and cruel ailment affecting one in ten women. Your kind attention to our needs will get us closer to our goals more quickly and successfully.” Michael Broodherson, MD., Chief Medical Officer Gramercy Surgical NYC, Founder of Fifth Avenue Urology, and Member of the Board of Directors of Endometriosis Foundation of America.
"Increasing government funding in endometriosis research will bring up public awareness and ultimately benefit so many young women who suffer from this common disease at their peaks for career development and family care. This is a task long overdue." Dr. Ie-Ming Shih, the Richard W. TeLinde Distinguished Professor at the Johns Hopkins University.
“This wonderful source of support of endometriosis is going to change the landscape for this disease. There are innumerable research opportunities to explore for improved early diagnosis as well as more effective and better tolerated treatments for patients. One important aspect of endometriosis is that it often begins in adolescents, and the symptoms are often not taken seriously. An early non-invasive approach to diagnosis will allow for early preventive approaches in these young women.” Peter K. Gregersen MD., Professor and Head, Robert S. Boas Center for Genomics and Human Genetics, Feinstein Institute for Medical Research. Northwell Health and Christine Metz, MD. Professor, Feinstein Institute for Medical Research. Northwell Health.
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AVAILABLE FOR INTERVIEWS:
Tamer Seckin, MD, FACOG, FACS, founder, Endometriosis Foundation of AmericaEndoFound
Diana Falzone, Journalist & Member of the EndoFound Advisory Board
The Endometriosis Foundation of America (EndoFound) was founded by Tamer Seckin, MD, and Padma Lakshmi. It strives to increase disease recognition, provide advocacy, facilitate expert surgical training, and fund landmark endometriosis research. Engaged in a robust campaign to inform the medical community and the public, the EFA places particular emphasis on the critical importance of early diagnosis and effective intervention, while simultaneously providing education to the next generation of medical professionals and their patients. For more information, visit endofound.org.