Cost & Coping

Helping patients through the bureaucracy

Helping patients through the bureaucracy

BY CHRISTINE KILGORE A confluence of factors that limit insurance coverage of laparoscopic endometriosis excision surgery has left patients – and sometimes the physicians who perform these often complex and lengthy surgeries – fighting back with repeated appeals, extensive documentation, and shared frustration and tenacity.


Perspectives on Endometriosis Management

“The patients I’ve worked with who have been successful in appealing to insurance companies, who have won [coverage of] their excision surgeries, were very diligent and did not take no for an answer,” said Casey Berna, a social worker and endometriosis patient who founded a nonprofit organization called Endometriosis Support & Advocacy Services to support patients and advocate for new standards of endometriosis care.

Endometriosis excision is currently billed under an all-inclusive code – CPT code 58662 – that covers everything from a short and relatively simple ablation or vaporization procedure to an hours-long excision of deep infiltrating endometriosis that requires high-level surgical skills.

A select number of physicians in the United States have the training and skill set to perform complex endometriosis excision surgeries, and in order to focus on endometriosis excision surgery and manage low insurance payments,

many of these physicians have dropped insurance contracts and are operating on an out-of-network basis.

Others are employed by hospitals or academic medical centers, and

a minority, sources say, are working creatively to stay afloat in in-network practices.

Casey Berna

The lack of procedure codes that represent the work and effort involved in advanced, labor-intensive surgeries has forced surgeons to use additional unlisted codes – such as a code for “unlisted laparoscopic procedure, ureter,” for ureterolysis – but these codes “inevitably get denied,” said Nicholas Fogelson, MD, of the Pearl Women’s Health Center in Portland, Oregon. As Dr. Fogelson is a surgeon who has remained in-network for endometriosis care; his staff routinely challenges such denials. “You have to expect that a first appeal will fail, and often a second,” he said. “You have the best chance in a third-party appeal because, theoretically, you’re being reviewed by someone who is not biased for the insurance company. … But in general, it’s challenging to win appeals.” Dr. Fogelson’s practice owns its own Medicare-approved surgery center, which not only provides a more comfortable environment for his endometriosis patients, he says, but also allows him to practice in-network through the coverage of facility fees and use of the operating room by other physicians. (Dr. Fogelson, who formerly practiced at Emory University Hospital, Druid Hills, Ga., and Grady Memorial Hospital, Atlanta, is able to perform about two-thirds of his endometriosis excision surgeries in his practice’s surgery center; the most complex cases must be handled in the hospital, he said.)

Nicholas Fogelson, MD

Cindy Mosbrucker, MD, who recently left a salaried position to start her own practice in Gig Harbor, Wash., called Pacific Endometriosis and Pelvic Surgery, estimates that filing appeals improves insurance coverage slightly for her longer excision surgeries in about half of the cases. She is working with a coding specialist and other professionals on improving her operative notes and making other changes to document the effectiveness and value of her surgeries. “A lot of excision surgeries, especially in women who want to maintain fertility, require precise and painstaking excision,” said Dr. Mosbrucker, who is board-certified in female pelvic medicine and reconstructive surgery. She dropped Medicaid reluctantly, she said, and is “trying to stay in network because I really believe that endometriosis should be a disease that doesn’t take somebody who’s rich to get it taken care of. … We’re in the process of trying to figure this out.” It is difficult to fathom, she said, that “there are at least four if not six good studies showing that excisions have over 80% long-term success rates with a 19% recurrence rate, but there is no code for excision, other than code 58662 for ablation and excision.

… Insurance companies don’t seem to want to look at, does excision work or not?”

Patients, she added, are “the biggest force pushing excision right now. They are really the ones who are driving a better understanding of endometriosis.” Patients who seek treatment from out-of-network physicians with expertise in excision surgery – a common scenario for patients whose medical treatments and surgeries have failed to relieve pain and other symptoms – are often forced to be in the driver’s seat, said Ms. Berna. She refers patients who have questions about access, preauthorizations, and appeals to several online support groups that provide resources regarding how to craft and handle communication with insurers and how to document medical necessity

Cindy Mosbrucker, MD

Kim Givens, RN, a practicing nurse who manages education on preauthorization and appeals processes for the more than 35,000 members of a support group called Nancy’s Nook, walks patients through the process of reviewing their insurer’s evidence of benefits/coverage, understanding the importance of following all directions and time lines exactly, and understanding how to build and document a case for medical necessity. “Most plans will require preauthorization, and you’ll have to prove ‘medical necessity’ – that you have a medical condition that has not been treated successfully with doctors in your insurance network,” Givens said. “You have to draw up a battle plan ahead of time.” This includes

being prepared to meticulously question in-network physicians about their treatment philosophy,

about their surgical volume and the techniques they employ, and about what would happen, for instance, “if [endometriosis is found] on my bladder, bowels, ureters, or other sensitive areas,”

Givens said, noting that “a supportive [gynecologist] is worth their weight in gold.”

One patient advised by Givens described on the group’s discussion forum how she sent about 25 pages of material to her HMO, including a letter from an out-of-network surgeon that included her surgical plan, a letter that her primary care physician wrote on her behalf, testimonials from two patients who had successful surgeries, a document detailing how in-network treatments had failed her over the years, and a letter about the efficacy of excision surgery, as well as articles from peer-reviewed medical journals. Her HMO ultimately agreed to cover the surgery. “I’m telling you this because I know that access to good surgery is too rare and our assumptions about it are sometimes hard to overcome,” she wrote on the forum. Givens, who works in Northern California as a bedside nurse, began her volunteer job with Nancy’s Nook about 10 years ago after obtaining out-of-network coverage of excision surgery for her then–20-year-old daughter. (Nancy’s Nook was founded by endometriosis advocate Nancy Petersen, RN.) After an initial request and the denial of two appeals filed with her HMO, Givens appealed to California Department of Managed Care for an independent medical review, taking “well over a year to work through everything prior to filing for the [state review] … since there is no appealing [that review].” Among the documents she collected were two medical record reviews done by surgeons who focus on endometriosis excision. Navigating these processes is overwhelming for many patients who are suffering from the disease and dealing with lost work productivity and other stressors, Givens said, so she often advises patients to secure a medical power of attorney. “Then at least you have someone who is able to get medical records and [help with other tasks],” she said.

Some out-of-network practices have advocates and systems in place to help patients with preauthorizations, appeals, and medical record reviews, Ms. Berna said.

At the Center for Endometriosis Care in Atlanta, for instance, the letters written on patients’ behalf are individualized but typically include an overview of the disease and how it elicits a sustained inflammatory response, how it frequently distorts pelvic anatomy, and how it is associated with a number of comorbidities and an increase in symptoms with time unless it is adequately treated. Multiple studies are referenced, according to Heather Guidone, the center’s surgical program director.

“Letters are crafted to each individual’s needs, but the overarching goal is to share facts about excision and its superiority and why the patient’s case warrants specialist intervention,” she said.

In addition to referencing studies from the literature that demonstrate a reduction of symptoms in 70%-80% of patients treated with laparoscopic excision – including those in whom bladder and bowel symptoms are prevalent – the center’s communications to insurers also include its own follow-up excision data that show an approximate 10%-15% long-term recurrence rate of endometriosis in their patients, a rate of satisfactory pain relief of over 80%, and a need for pelvic surgery of any kind of less than 15%, Ms. Guidone said. The center’s database dates back more than two decades, she said. “This compares with 60%-100% recurrence rates within 5 years of ablation and medical suppression,” a sample letter states.

In short, the letter states, laparoscopic excision “significantly reduces the cycle of costly and repeated surgical/medical interventions, improves fertility, and confers long-term relief rates.”

The goal for any such communication, Ms. Guidone said, is “to share facts about excision and its superiority and why the patient’s case warrants an endometriosis specialist.” The center aims to demonstrate to insurers “that endometriosis patients deserve access to quality care through benefits and exemptions which their insurance provider may have in place … and that offering early intervention and proper, effective care changes lives and reduces cost burdens,” she said. Ms. Guidone, Ms. Berna, and other advocates and surgeons who were interviewed for this article say they have little hope of seeing change from insurers until more CPT codes are developed and until the American College of Obstetricians and Gynecologists updates its practice bulletin on endometriosis to distinguish excision from ablation and to give proper credence to the efficacy of excision techniques. “We’re in a place right now where there are enough surgeons performing excision and enough patients seeking out their care, that we’ve developed an elevated standard of care for endometriosis that includes excision surgery,” said Dr. Fogelson. He is currently working with other surgeons on developing a multipractice study aimed at documenting their patients’ long-term outcomes.

Heather Guidone