The World Health Organization estimates that endometriosis impacts roughly 1 in 10 people born female. Gov. Ned Lamont’s two-year, $55.2 billion budget proposal maintains funding for a new state partnership to continue research and education around the chronic, painful disease that’s difficult to diagnose and treat.
The efforts are required in a 2023 state law, which was based on recommendations from the Endometriosis Working Group. The initial state funding established a biorepository known as EndoRISE. UConn Health and the Jackson Laboratory work together to collect, study and catalog tissue samples from patients to develop diagnostics and treatment aside from surgery.
State Representative Jillian Gilchrest (D-West Hartford) chairs the working group, and said endometriosis research has been historically underfunded.
Federal funding from the National Institutes for Health to study the disease has increased over time, with $27 million of the agency’s multi-billion dollar budget dedicated to the disease in 2022, up from $13 million in 2020.
However as the Trump administration continues to push for cuts to key federal grants including the NIH, future funding for biomedical research is uncertain.
“And so we have an opportunity to continue doing research that, unfortunately, might be cut in other places in the country,” Gilchrest said.
Gilchrest said the continued implementation of the law, including EndoRISE’s education, awareness and research expansion, needs $2 million – almost twice the amount it got initially. Lawmakers will craft their own budget proposal and present it in April.
EndoRISE co-director and molecular biologist Elise Courtois said patients from St. Francis Hospital in Hartford and Danbury Hospital, will soon be included in their research – and the group is working on expanding to other hospitals, too.
This expansion is part of the law’s goal to ensure the sample size includes a diverse group of patients, since the majority of people who are able to get a formal endometriosis diagnosis are white.
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How a CT law is tackling endometriosis, a common, painful disease that's hard to diagnose
