A Three Year Battle for Medical Treatment

“You want to give up and I guess maybe that’s the point – they want you to give up. But I can’t.”

In November of 2012, Jean Marcoccio had surgery to remove the large buffalo hump on the back of her neck, alleviating the chronic headaches and sleeplessness that plagued her for years because of the pressure the hump put on the back of her skull. She’s more physically comfortable and also less self-conscious about her appearance out in public. MassHealth, Jean’s health insurer, covered the cost of the surgery. That’s the good news.

Now, the bad news: it took nearly three years of wrangling by Jean and her doctors to get insurance coverage for the operation. That’s because Jean’s buffalo hump was caused by lipodystrophy, a metabolic complication of her HIV medication that creates abnormal fat distribution in the body, causing disfiguring body shape changes. Health insurers routinely deny coverage for lipodystrophy treatment on the grounds that it is cosmetic or otherwise not medically necessary.  Jean, 65, who has been suffering the effects of lipodystrophy for about a decade, was no exception to this rule.

She appealed MassHealth’s denial of coverage. Over the next two-plus years, Jean says, her doctors were repeatedly asked to provide further documentation, more photos and additional explanation of how her lipodystrophy was affecting her. But in the end, MassHealth’s approval of the surgery might have come down to sheer luck. Frustrated by all of the red tape delays, Jean called MassHealth to personally plead her case. “I finally got a really nice woman on the phone and she said, ‘Just have your doctor write a letter about how you’re having headaches and everything, and we’ll approve it.’”

This wasn’t Jean’s first go-around with her insurer over lipodystrophy treatment. Aside from the buffalo hump, her lipodystrophy has caused significant fat accumulation in her upper body, and significant fat loss in her buttocks, thighs and legs. The effect is that Jean is very top heavy, which aggravates pre-existing back problems (she has four ruptured discs in her back) and leg ailments. “Sometimes I just want to come home and sit down and cry because it hurts so bad,” says Jean, a former social worker and case manager. “And I know it’s because of the weight up top.” About seven years ago, Jean sought coverage for a procedure to remove the significant fat accumulation under her arms – an area of the body commonly affected by lipodystrophy. MassHealth rejected her request.

Fortunately, Jean’s daughter worked for a plastic surgeon who generously agreed to perform the surgery for the $2000 cost of the anesthesia. Jean, who lives on a fixed income, and her daughter, who held three jobs at the time, pooled their resources to cover that expense. “We used our credit cards,” she says.

Jean, who lives in a town south of Boston, is currently awaiting approval from MassHealth for a procedure to remove the massive fat accumulation in her upper arms. The excessive fat limits Jean’s use of her arms and makes lifting them over her head painful. Even getting her blood pressure taken, which she does frequently because she suffers from hypertension, causes severe pain and bruising because her upper arms are too fat for the blood pressure cuff.

Additionally, because of the lipodystrophy in her upper arms, buying clothes that fit Jean properly is basically impossible; she cannot afford tailored clothing. Wearing long sleeves is extremely uncomfortable and Jean actually bruises from the constriction of the sleeves. Going out with short sleeves is unbearable because of the way people react to her appearance.

Just as with her buffalo hump surgery, Jean says her surgeon has already fielded about four requests from MassHealth for additional detail. “Instead of outright denial, they keep asking for more information,” she says. “So the doctor has to keep writing more and writing more.”
Jean is grateful for the commitment her health care providers have made to ensuring that she receives the lipodystrophy treatment she needs, but she knows it requires tremendous time and patience from them.

“I hate going back and forth, back and forth, back and forth [with MassHealth],” Jean says. “I’m sure the doctors are so tired of me. But they’ve really been sweethearts – ‘Oh, we’ll do it again. We’ll try again.’  A lot of doctors don’t want to do that and I don’t blame them.”

“Sometimes you want to say, ‘Oh my god, I can’t do this anymore,’” she adds. “You want to give up and I guess maybe that’s the point – they want you to give up. But I can’t.”