Diagnosed in 1986 and on disability for a decade, Shea couldn't afford $10,000 for facial filler, so fighting back was his only option.
As soon as the U.S. Food and Drug Administration (FDA) approved Dermik Laboratories' Sculptra for HIV-related lipoatrophy in 2004, making it a legitimate product for medical coverage, Shea launched his campaign.
"I needed prior authorization to have this done," he says. "I knew from my experience with dealing with Oxford that if I just went ahead and had it done, chances are I would have wound up never getting reimbursed for it."
With the kind of tooth-gritting determination that defines "medical necessity," Shea was primed to jump through Oxford's every last administrative hoop. In fact, the long-term survivor was no stranger to insurance insurrections. In 1999, when the industry was lobbying the state of New York for a 70 percent increase on the premiums of direct payers who, like Shea, have private disability benefits after being employed for decades and therefore don't qualify for Medicaid or an AIDS Drug Assistance Program (ADAP), he testified against the staggering hike at a public hearing.
"A woman from GMHC contacted me. At that point I wouldn't speak before more than two people [because of my lipoatrophy], but she convinced me that yes, in fact, you can beat an insurance company," he says. "A group of us from GMHC spoke that day. After the hearing was over, the rate was rolled back from [a] 70 percent increase to 10 percent." His response? "That was the biggest high I ever had in my life. It just, like, blew my head off!" Call him the Erin Brockovich of lipoatrophy.
Shea went on to become GMHC's resident expert in insurance issues, applying his own knowledge of the appeals process to other cases. Unfortunately, with the advent of Medicare Part D, which allows insurance companies to deny more and more medications to people with HIV, this particular expertise is in increasing demand.
Shea's patient and painstaking, even relentless, persistence is the model for any Sculptra coverage claim. "The insurance company at first said they had never heard of the treatment. Then they said it was not approved. We went back and forth on phone calls for a couple of weeks, until I sent them the FDA-approval notice from the Internet," Shea recalls. "At that point, they came back and said that the procedure was considered 'cosmetic,' not medically necessary, and therefore it was not covered." Shea asked what other options he had, and Oxford told him to write a letter -- the old heave-ho.
Then he remembered a little thing called an appeal. "They don't bring it to your attention, but there is a standard appeals process when you're denied coverage from an insurance company, and [in New York] it is monitored by the New York State Insurance Department," he says. "The first step is to get a written denial from the insurance company, which is not always easy. They'll say, 'Call this department.' 'Call that department.' They'll give you the runaround." After many frustrating phone calls, Shea finally wrote to Oxford's clinical appeals department that he had been denied Sculptra and wanted to appeal the decision. That got him what he wanted -- the denial in writing.
The goal is to get off the phone and onto paper as fast as possible. And be sure to send a copy to the state. "I automatically sent a carbon copy of all correspondence to the New York State Insurance Department," Shea says. "They write a letter to the insurance company, and the insurance company has to answer them as well as you. It prevents anything from falling through the cracks."
Once you have entered the appeals process' courtroom, your strategy should be to gather as much evidence as possible in support of your argument. In Shea's case, this file ultimately ran to more than 50 pages, including the mandatory letter of medical necessity from his doctor, an additional letter from his longtime psychotherapist detailing the profoundly negative effects facial lipoatrophy had on Shea's mental health and his own personal account. He also included a wide-ranging package of articles he had downloaded from the Internet explaining what causes HIV-related lipoatrophy, how the Sculptra procedure works and how effective it is at improving people's quality of life.
"In one article, a parallel was drawn between Sculptra for facial lipoatrophy and breast reconstructive surgery following mastectomies [which is covered by insurance] -- I put that into my appeal," Shea says. "And of course I always referred to the procedure as 'reconstructive' rather than 'cosmetic' surgery."
What could Oxford do but bow before such a display of proof, right? Wrong. "I sent the appeal in, and it came back within a week and a half -- which anybody familiar with insurance companies knows never happens -- and, of course, it was denied again," Shea says.
Now it was time to call in the authorities -- by terminating the internal appeals process and initiating the external appeals process. Shea explains: "The state insurance department handles it. They send it to an outside -- I don't want to say 'uninterested party' because, of course, it's people in health care -- but there's nobody from your insurance company involved in that process."
Bingo! This panel of more objective experts ruled, not surprisingly, in Shea's favor, agreeing with him that getting his face (read: life) back was not a cosmetic enhancement after all but a medical necessity. Written by a dermatologist, the decision repeatedly referenced the letter from Shea's psychotherapist.