The first line in President Joe Biden’s executive order that advances women’s health research and innovation is what those suffering from endometriosis have been clamoring for from elected officials for decades:
“My Administration is committed to getting women the answers they need about their health.”
The order, signed by Biden on Monday, calls on Congress to invest $12 billion in new funding for women’s health research. This stems from Joe and Jill Biden’s creation of the White House Initiative on Women’s Health Research last year to change how that research is approached and funded.
The $12 billion would establish a fund at the National Institutes of Health for “a new nationwide network of research centers of excellence and innovation in women’s health—which would serve as a national gold standard for women’s health research across the lifespan.”
“I think I’m still in a bit of shock that this has happened,” said Diana Falzone, executive producer of Endo TV for the Endometriosis Foundation of America (EndoFound). “Like so many people with endometriosis, my diagnostic delay took over 10 years, and I had no idea how many others had this disease. Knowing that this White House has taken into account these individuals’ lives and is committed to bettering their lives renews my hope.”
Endometriosis occurs when tissue similar to the interior lining of the uterus mistakenly migrates and implants outside the uterus, primarily in the pelvic region. These implants respond to hormone fluctuations during one’s menstrual cycle, causing debilitating pain, among numerous other symptoms.
The disease affects an estimated one in 10 women in the U.S. and more than 200 million worldwide. It is one of the leading causes of infertility, takes an average of a decade or more to diagnose, and has been vastly ignored and underfunded.
Since EndoFound’s inception in 2009, and especially over the last eight years, the organization and those associated with it have led the charge to bring attention and research funding to the disease through education in schools, patient storytelling, and political advocacy:
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In 2016, EndoFound co-founder and endometriosis patient Padma Lakshmi traveled to Washington, D.C., to meet several lawmakers, including Elizabeth Warren and Chuck Schumer, for more funding.
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In 2018, Falzone and others were in the nation’s capital to share their stories with Congress and educate lawmakers on the disease.
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In 2019, EndoFound's two-year advocacy initiative with New York State resulted in the first U.S. law to make menstrual health and endometriosis materials available to school districts and medical practitioners statewide, something the organization continues to advcocate for in other states today.
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In 2020, EndoFound held a Virtual Hill Day. Lakshmi, Falzone, actress Lexie Stevenson, producer Corinne Foxx, and others shared their endometriosis journeys with lawmakers and asked for more research funding.
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In 2021, EndoFound successfully worked with Iowa congresswoman and endometriosis patient Abby Finkenauer to double endometriosis research funding from the National Institute for Child and Human Development to $26 million.
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In 2023, EndoFound’s ENPOWR Project, which educates high school students on menstrual health and endometriosis, expanded with volunteer educators in more than 40 states and a host of new online videos and other tools.
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Just weeks ago, Falzone and EndoFound's Scientific and Medical Director, Dr. Dan Martin, spoke with Katie Keith, the deputy director of the White House Gender Policy Council, and her staff, to discuss why endometriosis funding and advocacy are so critical.
“Research shows endometriosis begins in early adolescence, and early detection and timely intervention are the best prevention,” said Tamer Seckin, MD, co-founder of EndoFound. “We are happy that investments in women’s health for research and innovation are finally being prioritized. Girls should not have to suffer because they’re going to be women.”
Biden’s executive order is now in the hands of Congress.
“The president's announcement is an exciting next step forward and could signal a sea change for the millions of women in the U.S. who know—and don't yet know—that they are living with endometriosis,” Piraye Yurttas Beim said. Yurttas Beim is an EndoFound executive board member and the founder and CEO of Celmatix, a preclinical-stage and leading women’s health biotech focused on ovarian biology.
“But ultimately, Congress needs to now act to fund these initiatives,” she continued. “If Congress funds the proposals in this order, it will bring much-needed resources to a field that has historically been overlooked for research dollars.”
The order follows Jill Biden’s announcement last month that $100 million from the federal Advanced Research Projects Agency for Health would be invested in women’s health research and development. The Bidens established the White House Initiative on Women’s Health Research after the first lady met with Maria Shriver, a longtime advocate for women’s health and former first lady of California.
On Monday, Shriver announced Biden’s executive order at the White House before a raucous and excited crowd.
“It will galvanize new research on a wide range of topics and help prevent, diagnose, and treat women’s health conditions once and for all,” Shriver said. She said the research matters because women are sicker than ever before, and there are no explanations or data for them or their doctors to make informed decisions. Shriver specified Alzheimer’s, multiple sclerosis, and endometriosis as examples.
“It matters because women make up two-thirds of those with Alzheimer’s, and no one knows why that is. We make up 80 percent of those with autoimmune diseases, the majority of those with MS, and no one knows why that is,” Shriver said. “Black and Brown women are more likely to develop endometriosis and face pregnancy-related complications, and we don’t have the research to tell them what to do about it.”
Dan Martin, MD, EndoFound’s scientific and medical director, met with congressional leaders last fall at the Society for Women’s Health Research conference and said there is still much work to do regarding healthcare in general. He noted that 43 percent of working-class adults in the U.S. lacked adequate health insurance in 2022, and 46 percent of individuals reported skipping or delaying necessary medical care due to financial constraints. But he said this executive order is a significant piece of the puzzle.
“The inequality in research dedicated to women's health is a matter of national concern and should be treated as such,” said Dr. Martin, a past president of the American Association of Gynecologic Laparoscopists. “President Biden's executive order represents a stride toward rectifying this disparity.”
Falzone said it’s been a long road but worth every second and proves what can happen when people work together.
“You don’t have to have a platform. You don’t have to be a celebrity. When we are fighting for the same cause and use our voices collectively, we can be so powerful and make a tremendous difference,” Falzone said. “It’s because of all these years of hard work and people speaking out about the disease that this historic event has materialized.”
