Pain from MassHealth
Sitting in her lawyer's office Tuesday, Ashley Shaw didn't come across as the type of teenager who would opt for needless cosmetic surgery.
Yet that's what MassHealth, the state's Medicaid provider, seems to think she had last year, when a painful and dangerous growth was removed from her neck.
Shaw, 16, was born HIV-positive and has had AIDS for most of her life. As a side effect of an otherwise successful drug regimen, two years ago she developed a fatty deposit on her neck, described in legal documents as a ''buffalo hump" or, to use the medical term, lipodystrophy.
It caused her spine to curve and her head to bend forward, damaging her posture and giving her headaches and nausea. It also made it far more difficult to participate in her favorite activities, snowboarding and skateboarding.
Despite changes in her medicine, it kept growing. Finally, her doctor, Sandra Burchett, concluded that the only successful treatment would be to remove it by liposuction.
''Ashley struggles with an enormous amount of things," said her mother, Liz Shaw. ''She's cognitively delayed; she has a long history of post-traumatic stress disorder and has struggled to stay safe and calm and happy in the world. It just felt as I pursued it more and more like there was a tangible, doable thing that could relieve her of this one thing."
That is where MassHealth enters the story. A day before the surgery was scheduled to take place last spring at Children's Hospital in Boston, word came that the state would not pay for the procedure. It had been deemed cosmetic and thus ineligible for coverage.
Despite that ruling, the surgery went forward as planned, on a gamble that MassHealth would reverse its decision on appeal. Both Ashley's doctor and mother were unwilling to let the girl endure further agony while an appeal process ground on.
Two subsequent appeals failed, the most recent in late August. The Shaws plan to file suit today in Suffolk Superior Court, hoping the court will force MassHealth to reverse its decision.
Ironically, the surgery gave MassHealth another basis for refusal. In addition to contending that the surgery was unnecessary, the agency also now holds that it does not approve payments for procedures that have already been carried out.
Richard Powers, a spokesman for MassHealth, declined yesterday to discuss the specifics of Ashley's case. But he said the agency has fielded three requests for procedures to remove buffalo humps this year, and all have been rejected. He said MassHealth has good reason not to pay for operations that have not been approved in advance.
''If this program was not in place, we probably would be hearing about all the surgeries that we pay for after the fact," Powers said. ''If prior authorization is denied, there is a hearing process that should ensue."
The Shaws are being represented by Gay and Lesbian Advocates and Defenders. The group took the case, according to attorney Bennett H. Klein, because the agency believes MassHealth is wrong to categorize this surgery as cosmetic. Also, the appeal process is unduly onerous in this case, Klein said.
''It can't make sense that when you have somebody who is in pain and honestly suffering from a medical condition that is limiting and debilitating, that you have to wait one to three years to have your procedure."
One could say that the Shaws took their chances. But the purpose of MassHealth is to fund medical care for those who truly need it and can't afford it. If an adolescent girl with a hump on her neck doesn't fall within that definition, who does?
The question of whether MassHealth correctly applied its guidelines is one that will be decided by the court. But a better question is how this kind of decision serves its mission. Unfortunately, that's the kind of question that the regulations can't answer.
Adrian Walker is a Globe columnist. He can be reached at walker@globe.com. 
