Insurance companies, doctors, and even medical schools can be woefully uninformed about endometriosis. The lack of knowledge delays diagnosis for many, including endometriosis awareness advocate Arleigh Cole.
“There just weren't specialists and doctors that even knew the word, let alone understood the disease,” Cole said recently on Connecticut Public Radio's "Where We Live."
Endometriosis is a chronic, inflammatory uterine disease that causes severe pain both in the uterus and throughout the body. Despite estimates from Yale Medicine that as many as one in 10 people with uteruses have endometriosis, it can take years to diagnose — and treatment can be difficult to access.
That’s why state Rep. Jillian Gilchrest, D-West Hartford, formed an Endometriosis Working Group in the state House of Representatives in 2021.
“I had a colleague and friend reach out to share with me about her experience with endometriosis. And I'll be honest, I'd never heard about it before,” Gilchrest said. “But as she started explaining what she had gone through, I certainly knew individuals throughout my life who, I think, probably were experiencing endometriosis. And so I went back and did some research, and was just shocked to find how many individuals are impacted and how much work there is to be done.”
The working group helped pass legislation during the 2022 session that required that the University of Connecticut begin plans for additional research into endometriosis diagnosis and treatment.
The legislation also requires that endometriosis be part of the UConn School of Medicine curriculum. But Gilchrest believes endometriosis education should begin even earlier.
“We've been looking at trying to get education into the schools,” Gilchrest said, “so that young people first getting their periods, first experiencing potential pain, might be able to identify that they might be experiencing endometriosis.”
Even after diagnosis, the road to treatment can be long and arduous.
Many insurance companies do not recognize endometriosis as a condition, or will refuse to pay for treatment, Gilchrest said.
“And, unfortunately, most of the very skilled specialists are all out-of-network,” Cole said. “You're looking at an average of $20,000 to $30,000 for a surgery.”
Those that do cover the condition often lump all treatment options together and cap their payments at the price of the least expensive option, even when that may not be the appropriate procedure determined by a patient and their doctor.
“There are many providers who can’t afford to take insurance [if it only covers some of their hours],” Gilchrest said. “Financially, it is a significant barrier to be able to get that treatment.”
Gilchrest’s working group is pushing for legislation on the state and federal level to correct the way insurance companies classify endometriosis treatment.
