Breast cancer patients face insurance denials that complicate recovery: ‘The emotional toll was enormous’

It had been a long four years since that July night when Marianne Sarcich first felt the lump in her right breast as she toweled off from a shower.

Breast cancer.

The cancer was caught early enough that it had not spread to other parts of her body, but doctors said she would need a mastectomy to remove the breast and the cancer in it.

The implant she received after the surgery built up scar tissue, became painful, and eventually needed to be removed.

This time, in 2020, Sarcich opted for a newer kind of surgery, in which tissue from her left thigh was transplanted to her chest to form a breast.

She was finally starting to feel — and look — like herself again.

“After the mastectomy, I couldn’t look at my chest for months, I tried to avoid mirrors. It took me so long to understand this was me,” said Sarcich, 55, of Wilmington.

Her relief was short-lived. The reconstruction surgery had been covered by her health insurance, but she soon found out that a follow-up procedure to thin her right thigh to match the left, was not.

Having same-size legs was deemed cosmetic, not medically necessary.

Federal and state laws require that health insurance cover breast reconstruction following a mastectomy, as well as any follow-up procedures to restore symmetry between the breasts. But patients often struggle to get insurance coverage for surgery to restore the appearance of other parts of their bodies when tissue was harvested for reconstruction.

The process of appealing insurance denials can be daunting, especially for people who are physically and emotionally exhausted after cancer treatment and recovery. Those unable to navigate the denials process may ultimately go without the follow-up care.

“At a time when a woman is literally fighting for her life in receiving breast cancer treatments and a very disfiguring surgery, she should not have to fight her insurance company,” said Pat Halpin-Murphy, president of PA Breast Cancer Coalition. “She needs all her energy to heal.”

Many women who undergo a mastectomy to treat breast cancer opt for some form of reconstruction surgery. The choice of procedure is personal.

Implants filled with silicone gel or saline are among the most common options. “Flap” surgeries — when the patient’s own tissue is transplanted to form a breast — are popular among women concerned about the life span of synthetic implants, which often must be replaced or augmented within 10 years, or who have health issues that put them at risk for greater complications with implants.

Flap procedures can take tissue from the stomach, back, or sides. After her implant issues, Sarcich had profunda artery perforator (or PAP) flap surgery, in which tissue was taken from her upper back thigh. Though less common than other flap surgeries, PAP flap is an option for patients who do not have sufficient tissue in their abdomen, back, or other common donation sites.

In a surgery that took more than four hours, doctors cut from her left buttocks to the inner thigh to remove a crescent-shaped section of skin, tissue, and part of the profunda artery, the major blood supply to the thigh. The surgeon transplanted the tissue to the chest, carefully connecting the blood vessels there so that the tissue would not be rejected.

Patients stay at the hospital for about three days and need up to six weeks to recover.

Since the 1990s, federal law has mandated that health insurance cover reconstruction after breast cancer treatment. Pennsylvania in the late 1990s passed a law requiring insurers to also pay for surgery to restore symmetry between the breasts after reconstruction.

But the law does not require insurers to pay for subsequent surgeries to restore the appearance of the donor site in flap patients.

“Insurance companies have essentially used that wording to not offer coverage for the type of things that Marianne needed,” said Liza Wu, Sarcich’s plastic surgeon at Penn Medicine. “It’s not necessarily a complication of the mastectomy. It’s not a hole in the chest wall, or a non-healing wound. It’s a result of the reconstruction and it’s not functional, it’s an aesthetic outcome, and that’s where the loophole comes in.”

Sarcich was dumbfounded that her insurer, Independence Blue Cross, would deny coverage for her follow-up surgery, a thigh lift on the leg that had not been used in the reconstruction. And then she got angry. It had not occurred to her that part of her recovery wouldn’t be covered by insurance.

The cash price for a thigh lift is between $1,400 and $2,000 — not including hospital fees — in the Philadelphia area, according to Fair Health Consumer, a searchable price transparency website.

“I was extremely frustrated that the insurance company was stepping into my medical care in a way I didn’t feel was appropriate,” she said.

Independence Blue Cross evaluates requests like Sarcich’s “based on the member’s contractual benefits and the clinical facts and circumstances,” said Donna Farrell, senior vice president of corporate communications for Independence, in a statement.

“The appeals process is intended to allow for experts in the field to evaluate the case. Independence honors this decision, whether it is the same decision as the original or overturns the original decision,” Farrell said.

Even when a procedure is approved, breast cancer patients commonly encounter challenges with co-pays and coinsurance, or find a part of their reconstruction was not billed properly.

“Reconstruction is not a single code and not a single procedure — even if it’s not a complex case, there are always related services that could easily be turned down,” said Beth Virnig, a professor of health policy and management at the University of Minnesota.

When insurers deny a procedure, trying to prove the care is needed becomes the patient’s burden — and one that is too much for many to bear.

“There are a lot of times where women say enough, and just stop — not because there aren’t people who couldn’t make it better, but because they get tired of fighting the insurance,” said Virnig.

Sarcich poured her heart into an appeal letter, explaining why the procedure was so important. She was denied again.

After a second insurance denial, patients can file one more appeal — this time to an independent reviewer. Insurers and patients are bound by whatever decision the independent reviewer makes.

A former public relations specialist, Sarcich tapped into an old trick she used with clients: She tried to think like the insurance company. She picked apart the denial letters to find the exact reasons they gave — that the procedure was not medically necessary — and built a case addressing those specific points.

First, Sarcich went to her physical therapist to find out if having two different sized thighs could affect her physically, perhaps altering her balance or prolonging recovery — that was unlikely, she was told.

So she went to her oncologist and social worker to inquire whether they thought the emotional distress she felt about her imbalanced appearance could exacerbate her post-cancer anxiety. They agreed it could, and wrote letters to support her.

She also gathered letters from her plastic surgeon and Pennsylvania Breast Cancer Coalition. “The emotional toll was enormous. My fear was I wouldn’t win, but I’m going to try as hard as I can,” Sarcich said. “I felt I was right. I didn’t think what I was asking for was off base.”

Halpin-Murphy, who advocated for the Pennsylvania law requiring insurers to cover breast symmetry, says it doesn’t have to be complicated: Insurers should cover any surgery related to breast reconstruction to make patients feel as whole as possible.

“It’s difficult enough, having a mastectomy, and then you have reconstruction and they take another part of your body … and then you have distortion in another area,” said Halpin-Murphy, who wrote a letter to support Sarcich’s case.

It’s a disturbing experience and feeling to have part of your body missing, and people should not have to “make a case” for why they want any surgery that will help them feel like themselves again, she said.

“I don’t think you should have to claim mental health,” Halpin-Murphy said. “I think it’s mentally healthy to want to do that.”

In February, the independent reviewer agreed the procedure was necessary and Sarcich had the follow-up surgery in April, the soonest her surgeon could fit her in.

She’s taking her recovery slowly, building back her physical strength and self-confidence one day, one mirror-glance at a time.