Endometriosis is a debilitating disease– body, mind and spirit. As chair of the Connecticut General Assembly’s Endometriosis Working Group, I have spent the last year learning from advocates, those impacted by the disease, and specialists working to address, and one day even possibly prevent, endometriosis.

For those with endometriosis, endometrial-like tissue grows outside the uterus. Nearby reproductive organs are often affected but the disease has been found in every major organ system. Tissue can grow on or around a person’s ovaries, fallopian tubes, and beyond. Tissue growth can also spread to other organs, even if they’re not related to reproduction. Some people have endometriosis on or around their bowels, rectum, and bladder. In some cases, tissue may spread as far as your chest cavity.

Beyond the physical pain that over 194 million individuals with the disease experience, those suffering from endometriosis are often misdiagnosed, told the pain is normal, or accused of making up their symptoms. The toll this takes on a person’s mind and body is only made worse once diagnosed — which on average takes 10 years — when their spirit is crushed by a medical system that doesn’t recognize excision surgery.   

State Rep. Jillian Gilchrest, D-West Hartford

Excision surgery is the gold standard for surgically treating endometriosis and is often highly effective at removing the disease in many of those who undergo the procedure. Although not a cure, most patients who undergo excision surgery find that their pain is significantly decreased long term.

But excision surgery is incredibly expensive and there are few specialists relative to the number of individuals experiencing endometriosis. The expense and limited number of specialists can be attributed in large part to the way excision surgery is currently coded.

A 1992 Medicare Part B ruling grouped removal of endometriosis via fulguration, ablation, coagulation, and excision as the same. All insurers base how they reimburse on Medicare tables which means that there is no separate code for excision surgery. If a surgeon is performing excision surgery on someone with stage 4 endometriosis, an individual  for whom the disease is extensive and advanced, this surgery might last 6-8 hours. That surgeon will be paid the exact same by insurance as an OB GYN generalist who ablates less advanced disease in a 45 minute procedure.

As a result, most endometriosis specialists outside the academic setting, who have institutional backing and can afford to be in network, are out-of-network providers. 

This is the experience of so many seeking quality care for the disease, including Connecticut resident, Allie. Allie is insured under Connecticut’s state health plan. When she moved here she started looking for a provider to assist in treatment and management of her endometriosis. After a year of searching, she had to look out of state in order to access an excision surgeon. Even with great insurance coverage, she was told she would need to pay tens of thousands of dollars to access the treatment. Learning this, she appealed to receive out-of-network care. Unfortunately, because of the way excision surgery is coded, even if Allie receives the approval for out-of-network care, she is looking at $25,000 or more in out-of-pocket costs because the insurance coverage treats excision surgery the same as ablation. 

Through all of this back and forth, Allie remained positive, determined to receive the care she so desperately needs to relieve the daily pain she experiences from endometriosis and the potential damage this disease is doing to her vital organs.

After much self-advocacy, Allie is being told by her insurance company that her appeal for out-of-network care will be denied because there are in network providers capable of treating her endometriosis. The insurance company is referring to the number of OB GYN generalists capable of doing ablation. Allie’s appeal to be treated by an excision surgeon is being denied because the insurance coding for ablation and excision are the same. 

Excision is the only specialty not recognized by the American Medical Association (AMA). There are no boards or standard certifications. And the American College of Obstetricians and Gynecologists (ACOG) does not recognize excision as a specialty. ACOG is in the process of reviewing its practice bulletin for endometriosis, and this review will consider research on the efficacy of ablation and excision. Advocates, like Endo What? suggests that if ACOG were to recognize excision surgery and the multidisciplinary care required to treat endometriosis, it would be better positioned to compel insurance companies to adequately cover such care.

But, until that happens – until ACOG recognizes excision surgery and the procedural coding is changed to recognize excision surgery as a specialty, those suffering from endometriosis like Allie will lose. Their mind, body, and spirit are defeated by a disease that is ignored and a system that ignores them.

Jillian Gilchrest is a state representative from West Hartford.