Karen Moore, a high school teacher in Colchester, is fighting aggressive breast cancer and needs a double mastectomy. It’s about thriving, not surviving, she said. And for that, she said she needs her breasts.
“It’s more than just like, ‘Oh, you survived. Now you’re good. Who cares if your breasts are gone?’” said Moore, who’s 41. “Implants are off the table for me, because [of] the damage done by radiation. The skin won’t be able to support an implant.”
Moore is a candidate for what’s called DIEP flap surgery – or deep inferior epigastric perforator. It’s a highly sought-after procedure that uses blood vessels, fat and skin to reconstruct the breast. But some insurers have reduced how much they reimburse for this more complicated procedure to roughly the same as simpler flap surgeries, like the TRAM flap.
As a result, experts fear that women needing mastectomies may no longer have access to DIEP surgery.
This follows a change in an insurance billing code.
The Centers for Medicare and Medicaid Services (CMS) initiated the change, equating DIEP flap surgery with other, less advanced surgery that doctors say have quality-of-life side effects. The coding change decreases insurance reimbursements to surgeons performing DIEP flap procedures to rates more on par with basic flap procedures.
Moore’s other option is what’s called TRAM flap surgery, or transverse rectus abdominal muscle flap reconstruction.
But there are issues with TRAM surgery, said Dr. Elisabeth Potter, a reconstructive plastic surgeon in Austin, Texas, who specializes in breast reconstruction.
“TRAM flap surgery leaves women with hernias, weakness [and] chronic pain,” Potter said.
Potter heads the Community Breast Reconstruction Alliance (CBRA), which is leading the opposition to the insurance code change.
“We’ve heard from patients in Connecticut who have been told that they're no longer candidates for [DIEP] surgery,” she said. “If we don’t stop this now, these surgeries are only [going to be] available to women who can pay cash. And we’re going to see women who clinically need to use their own tissue for breast reconstruction no longer have access to that necessary surgery.”
Implants are a cheaper alternative, but some women say they don’t feel like real breasts. And implants need to be replaced every 10 years or so.
“So you’re talking about surgery every 10 years,” said Elaine Pellegrino, a breast cancer survivor in East Hampton and a colleague of Moore’s who underwent a DIEP flap procedure. “That was not something I saw as an option.”
Pellegrino is looking forward to becoming a grandmother someday, and she said that with a TRAM flap surgery, she wouldn’t have been able to lift and carry her grandchildren.
The DIEP flap, she said, is “not a cosmetic procedure. It is a life-changing procedure.”
Health insurers have until December 2024 to make the billing change. Given the pushback from surgeons and health care systems, Bloomfield-based Cigna Healthcare – which made the update – told Connecticut Public that it is delaying its implementation. Cigna said the delay will “give providers more time to prepare for the industry-wide change as well as offer the American Medical Association an opportunity to develop additional coding guidance to address concerns raised by some surgeons.”
More than 230 health care professionals, including Greenwich Hospital and Hartford HealthCare in Connecticut, have petitioned CMS to reinstate the procedure code that is essential for access to DIEP flap surgery.
Even though federal and state laws require health insurers to reimburse breast reconstruction surgery after a lumpectomy or mastectomy, insurers do deny coverage to patients who undergo a variety of surgeries that involve taking tissues from parts of their body for reconstructing the breast, such as Pap flap surgery – another type of flap procedure.
“I had to fight my insurance company,” said Marianne Sarcich, a breast cancer survivor in the Philadelphia metro region. “These flap reconstructions often involve multiple surgeries, [and] insurance denied a portion of my second surgery just a few days before I was headed to the OR. I ended up winning my fight, but it cost me an extra trip to the OR.”
Through all of it, patients say they endure trauma – cancer treatment, side effects, prognosis, fear of relapse, not being able to work, body changes and insurance uncertainty.
Patients say that at the heart of it all is mental health well-being and quality of life for cancer survivors.
Pellegrino said she’s not a “very cosmetically driven woman,” but “you don’t realize until after the surgery what may bother you."
Every time she looked in the mirror, she said, she couldn’t stop staring at the vacant space that once were her nipples. So she got a pair tattooed on her DIEP flap reconstructed breasts.
“I’m a mammal,” she said. “All mammals have nipples.”
This story has been updated.
