Despite endometriosis affecting more than 1 in 10 women and those born with a uterus in the United States, the exact cause of this whole-body disease remains unknown. This is partly due to a lack of research funding and insufficient policy changes at both the state and federal levels to improve access to care.
At the Endometriosis Foundation of America’s 17th Annual Medical Conference and Patient Day, a panel convened to discuss the importance of advocacy and how educating the public about endometriosis can help advance progress nationwide. Connecticut State Representative Jillian Gilchrest, research scientist Dr. Kanako Hayashi, and patient advocate Moriah Engelberg shared their efforts to enhance endometriosis funding and patient rights at the state level and how these initiatives can effect change across the country.
Gilchrest has been a champion for endometriosis in the Connecticut General Assembly for the past five years. In 2021, she formed the Endometriosis Working Group to raise awareness about the disease and its impact on women in the state. “When I found out that 1 in 10 people with a uterus have endometriosis, I decided to use my advocacy skills to form a coalition,” she said during the conference. “I brought together patients, advocates for women’s health and safety issues, and state legislators to start conversations. Endometriosis is now something everyone in our state legislature knows about and discusses.”
Gilchrest’s efforts have been remarkably successful. In 2023, under her leadership, groundbreaking legislation was passed to establish the nation’s first state-funded biobank aimed at advancing endometriosis research, improving early diagnosis, and increasing patient and provider education. “The Endometriosis Working Group in Connecticut continues to meet monthly to raise awareness and plan for future legislation,” Gilchrest noted.
Dr. Hayashi, a research scientist at Washington State University, is collaborating with state legislators and local advocates to improve education about endometriosis. “We need to educate people about menstruation, endometriosis, and the changes the body undergoes,” she stated during the panel. “We need to work at the state level to change the educational and training systems.”
Thanks to the efforts of Dr. Hayashi and other advocates in Washington, the State Senate passed SSB 5985 last month. This legislation aims to create an online resource center focusing on endometriosis through the University of Washington and Washington State University. It also directs the Office of the Superintendent of Public Instruction to incorporate information related to menstrual health, including endometriosis, in the revision of health and physical education state learning standards. The bill is currently awaiting passage by the House of Representatives; if approved, it will go to Governor Bob Ferguson for signing into law.
In New York State, Engelberg is advocating for improvements to the state’s paid medical leave program, which has not increased its weekly wage cap of $170 since 1989. “It can take a long time to get diagnosed with endometriosis, and by the time you receive a diagnosis, you may need to take time off from work,” she explained during the panel. “You shouldn’t have to sacrifice your health for a paycheck.”
Engelberg is an organizer for A Better Balance, where she leads the campaign to reform New York’s temporary disability insurance. In January, bill A9571/S172, aimed at reforming paid medical leave, was introduced in the New York State Assembly and referred to the Labor Committee for review. If passed, the legislation would ensure job protection for workers on leave for up to 12 weeks, whether taken continuously or intermittently, and would raise wage replacement to 67% of an employee’s average weekly wages.
EndoFound co-founder Dr. Tamer Seckin also shared insights about additional legislative victories in New York State for endometriosis, including the 2019 passage of the first law in the country requiring school districts and medical practitioners statewide to provide materials on menstrual health and endometriosis.
State efforts are just one aspect of endometriosis advocacy work. Dr. Seckin and EndoFound's advocacy team regularly meets with the U.S. Department of Health and Human Services and other federal policymakers to represent the needs of the endometriosis community, achieving several key victories:
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In 2020, EndoFound collaborated with the bipartisan Congressional Endometriosis Caucus to achieve a historic doubling of funding for endometriosis research at the National Institutes of Health.
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Two years later, EndoFound formed the UpEndo Coalition to continue educating Congress and the public about the health implications of endometriosis and to advance research funding and other policy priorities.
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That same year, the Congressional Endometriosis Caucus introduced the bipartisan Endometriosis CARE (Coverage, Awareness, Research, and Education) Act, calling for significant investments in endometriosis research and public awareness campaigns.
While federal advocacy may be challenging in the current political climate, state advocacy can have a ripple effect across the country. “History shows us that when states pass policy changes, it encourages the federal government to do the same,” Gilchrest remarked.
To make advocacy more accessible to patients and providers, the panel concluded with the announcement of the launch of EndoFound’s new Advocacy Toolkit. This free resource outlines various ways individuals can advocate for the endometriosis community, including by phone, email, or in person, along with tips for communicating with legislators, outreach templates, guidance for social media advocacy, and fact sheets.
“It’s a collective effort of all our voices,” Engelberg concluded. “The key thread is that everyone has the ability to speak up and reach out. We all have a role to play in creating lasting policies for everyone.”
