An endometriosis patient advocate has written a petition urging the American Congress of Obstetricians and Gynecologists (ACOG) to update treatment standards for endometriosis — an area which the petition argues is neglected by the professional organization.
The petition, signed by thousands of women, urges the ACOG to improve physicians’ knowledge and care standards in order to shorten the time it takes to diagnose endometriosis, which according to the Endometriosis Foundation of America averages 10 years. It also asks the ACOG, based in Washington, D.C., to introduce coding that makes reimbursements for extensive surgery more fair.
ACOG must work with medical experts and patients to bring about the necessary changes in its policy, the petition says.
“Educated patients, dedicated advocates, and expert endometriosis practitioners strongly believe that ACOG is not acting as a leader in endometriosis healthcare,” argues the petition, written by Casey Berna. “The lack of institutional leadership has caused suffering for patients in the form of delays in diagnosis and poor access to effectual care.”
Dr. Barbara Levy, ACOG’s vice president for health policy, released a statement in response to a request by Endometriosis News. She did not address the petition directly, but did respond to several of its points.
Her organization, Levy said, “considers the chronic pain and infertility associated with endometriosis a significant health problem for many,” and is aware of the importance of “early and accurate diagnosis.” It “encourages ob-gyns to increase their own understanding about the disease and raise awareness about the condition with patients.”
But, she noted, ACOG cannot on its own establish criteria for the coding of medical and surgical procedures; that’s an “official process” done in conjunction with major medical associations, and requiring publication of five or more peer-reviewed studies and expert panel review. And it’s a process, she notes, that ACOG “does not direct.”
Rather, the group can and does issue recommendations, Levy said. These begin “with conservative nonsurgical treatment approaches” for pain associated with endometriosis, and support “more invasive procedures” if evidence exists of “localized specific pain triggers” contributing to symptoms.
A patient advocate, Berna has also suffered the consequences of a delayed endometriosis diagnosis and improper treatment, according to an article by Erin Migdol in The Mighty.
One of the key issues in delayed diagnoses is a lack of knowledge among physicians, the petition claimed, citing an article on the ACOG website by its current president, Dr. Tom Gellhaus. In it, Gellhaus notes that 63 percent of general practitioners are not comfortable in diagnosing and treating endometriosis, and up to 50 percent are unfamiliar with the three main symptoms of the disease.
But along with better education for physicians, patients need the resources to be referred to experts who can surgically remove endometriosis, Migdol pointed out in the article.
Excision surgery — considered the gold standard for endometriosis treatment — has the best chance of removing as many endometriosis lesions as possible, and it can preserve fertility. Current guidelines, however, don’t recognize the specific techniques used during extensive excision surgery. This can cause patients to be billed for out-of-network services, making treatment potentially inaccessible to them.
And surgeons taking on the task of removing endometriosis from several organs — a procedure that usually takes hours — are compensated in the same way as colleagues who perform a simple 40-minute ablation procedure, according to a petition response posted by an endometriosis specialist, Dr. Jeff Arrington of Utah’s EndoWest clinic.
Arrington added that leaders in endometriosis surgery have long pointed out this “improper and unjust” situation to ACOG. Levy responded directly to this, noting those surgeons “promoting radical excision of endometriosis for alleviation of chronic pelvic pain have not produced the requested literature to support their coding requests.”
Many comments posted by endometriosis patients gave voice to their frustrations. At the time this article was published, the petition had been signed by more than 3,100 people.