Fighting for Treatment

Most people suffering from lipodystrophy don’t have the financial resources or provider support to successfully appeal an insurer’s denial of treatment.

Beth Hastie, 43, had the worst case of buffalo hump her surgeon had ever seen, a striking declaration for a doctor who had performed buffalo hump removal surgeries for about 25 other patients. It has caused permanent physical damage to her back. Yet, in December of 2006, Tufts Health Plan denied prior approval for surgery to remove the hump on the grounds it caused her “no impairment of a bodily function,” forcing her to undertake a complicated and lengthy appeal process to receive the treatment she had long needed.

The buffalo hump, a consequence of Beth’s lipodystrophy—a metabolic complication of her HIV medication that creates abnormal fat distribution in the body, causing disfiguring body shape changes – caused severe chronic pain in her back, neck and shoulder; she would later be diagnosed with two herniated discs and miss two months of work when the pain started shooting down her arm. Routine daily activities like washing dishes, sitting at her desk at work, or lying on her back were painful endeavors. Beth relied on near-daily use of anti-inflammatory medication or stronger pain killers in order to function, in addition to physical therapy and acupuncture. Driving was difficult, if not dangerous, because the hump restricted Beth’s ability to turn her head. Her posture was stooped.

Despite the physical damage lipodystrophy causes, health insurance companies routinely deny coverage for treatment procedures on the grounds that they are cosmetic or otherwise medically unnecessary.

The buffalo hump made the Jamaica Plain resident self-conscious about her appearance. She intentionally grew her short hair long in an effort to hide it and wore turtlenecks most of the time. In 2005, when she married her partner Sage Skog after many years together, she concealed the buffalo hump under a scarf.

When Beth finally got Tufts to cover the operation after a six-month ordeal, her surgeon removed three pounds of fat from the back of her neck.

Beth, who holds a master’s in public health from the BU School of Public Health, has long worked on the front lines of the HIV/AIDS epidemic. Thus, she fully expected Tufts to reject her request for lipodystrophy treatment.

But she also knew from experience that a successful appeal takes time and tremendous effort. Beth’s employer at the time allowed her to reduce her five-day, full-time work week to four days, giving her time to gather the proper documentation to support her appeal. She then set about working with her surgeon, her primary care doctor, her HIV specialist, her physical therapist, and her acupuncturist to craft letters from them that would appropriately convey the structural damage she was suffering because of the hump and the medical necessity of removing it.

“Unless you understand what insurers are looking for and what the requirements are, it’s not clear for doctors what they need to do to support their patients to get treatment,” Beth explains.

Six months after Tufts first declined to cover her liposuction treatment, Beth learned that her appeal was successful. She underwent surgery to remove the buffalo hump shortly after that. Though she has permanent structural damage from the buffalo hump, Beth is now in a lot less pain, her posture has improved, and her range of motion is better. She is less self-conscious of her appearance and has cut her hair to a more preferable length. 

“I do have what’s categorized as severe lipodystrophy in other parts of my body, but the buffalo hump was the thing I was most self-conscious about,” says Beth. “So the surgery absolutely helped with both my mental health and with the pain and my posture and those kinds of things.”

But Beth knows that her experience was fairly unique, since most people suffering from lipodystrophy do not have the time, financial resources, expertise and provider support to undertake a successful appeal of an insurer’s denial of treatment. She is hopeful about the passage of legislation that would require health insurers to cover lipodystrophy treatment for all qualified patients.

“There were so many things that contributed to me being successful that would have been really hard for other people,” she says. “I know there are people that don’t have that support and are isolated and maybe aren’t seeing a provider that’s knowledgeable about it.”