For too long, endometriosis has lived in the margins of public health policy—underfunded, under-researched, and unnamed in the very laws meant to protect patients. That silence carries a real cost: workers with endometriosis are entitled to protections under the Family and Medical Leave Act, yet many are denied them simply because the disease doesn’t appear by name in the Department of Labor’s guidance.
In February 2026, Congresswoman Nikema Williams (GA-05), Co-Chair of the bipartisan Congressional Endometriosis Caucus, moved to change that. Enlisting eleven of her colleagues, she sent a letter to the U.S. Secretary of Labor urging the Department to name endometriosis and adenomyosis explicitly in FMLA guidance and certification materials.
"These conditions are already covered under the Family and Medical Leave Act, but too many workers are denied the protections they deserve because they are not clearly recognized in the Department of Labor’s guidance," Congresswoman Williams explains. "Updating the Department’s guidance is a simple but meaningful step that will help workers access the protections they’re already entitled to, so no one has to choose between their health and their paycheck."
For Congresswoman Williams, the issue is personal. "Far too many people living with endometriosis and adenomyosis are forced to choose between managing a painful, chronic condition and keeping their jobs," she says. "As someone who has battled excruciating endometriosis pain since I was 14, I’m proud to serve as Co-Chair of the Congressional Endometriosis Caucus and lead this effort with my colleagues and in partnership with the Endometriosis Foundation of America to ensure these diseases receive the recognition they deserve."
The FMLA letter is not an isolated effort. It is one of three significant steps in recent months that the Caucus, working in partnership with the Endometriosis Foundation of America, has taken at the federal level toward making endometriosis impossible to ignore.
The Endometriosis CARE Act. In December 2025, Congresswoman Williams introduced the Endometriosis CARE Act, landmark legislation that would deliver $50 million annually to advance endometriosis research and expand access to treatment. Co-sponsored by Congresswomen Lauren Underwood (IL-14) and Alma Adams (NC-12), the bill directly confronts the chronic underfunding that has left a disease affecting more than one in ten reproductive-aged Americans without a known cause or cure.
Calling on the CDC. The Caucus is also leading a request that the CDC prioritize endometriosis research in Fiscal Year 2027 and urging the agency to identify endometriosis as a public health priority, strengthen national surveillance, improve data standardization, and assess the health and economic toll of delayed diagnosis and untreated disease. Critically, the requested language also asks the CDC to identify disparities in access to diagnosis and treatment across different communities; a crucial acknowledgment that the burden of endometriosis has never fallen evenly.
EndoFound's partnership with the Caucus dates back to its founding in March 2020, when then-Congresswoman Abby Finkenauer took to the House floor to courageously share her own journey with endo.
"I have been proud to be part of this powerful group dedicated to advocating for necessary progress for those living with the disease," said Diana Falzone, journalist and EndoFound's Chief Advocacy and Public Engagement Officer. "The objective of this caucus is to raise awareness, create legislation to support those living with the illness, and allocate research funding for endometriosis."
EndoFound has been heartened by the rising tide of support for endometriosis patients in Washington, and we are especially pleased to work alongside other endometriosis advocates and organizations whose advocacy strengthens this movement every day. Every letter, every bill, every line of appropriations language brings us closer to a world where no one waits a decade for a diagnosis.
Want to join the movement? Explore our Advocacy Toolkit and become part of the Up Endo Coalition today. This work depends on people who believe endometriosis deserves more attention, more funding, and better care, and if you’d like to go one step further, please consider making a donation to support EndoFound’s advocacy, education, and research efforts.
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