Friday, November 21, 2003

By Anita Srikameswaran, Pittsburgh Post-Gazette

State Medicaid officials have refused to pay for a liver transplant for an Altoona man because he is infected with HIV, a position the man's attorneys argue is discriminatory and not based on current medical knowledge and practice.

William Jean Gough, 46, meets the medical criteria for the procedure and his survival chances are as good as someone who isn't infected with the AIDS virus, said Hayley Gorenberg, AIDS project director at Lambda Legal in New York, which, along with the AIDS Project of Pennsylvania, is representing Gough in his appeal of the decision.

"There's really a problem with discrimination against people with HIV who need transplants," Gorenberg said. "They should be in the running, just like anybody else."

Gough was diagnosed with HIV and hepatitis C infection in 1996. At the time, his doctor warned that he might eventually need a liver transplant because of hepatitis C-induced damage.

Because of effective drug therapy, the Altoona man doesn't have symptoms of HIV infection. But his liver problems, as predicted, grew worse.

Gough was deemed medically suitable for a transplant after being evaluated at the University of Pittsburgh's Starzl Transplantation Institute on Aug. 26. He was notified in September that Medicaid would not cover the cost of the operation, however.

During a telephone hearing with a judge on Wednesday, Medicaid officials said that the program didn't cover transplants for people who had other life-threatening medical conditions.

But studies indicate that HIV-infected people do as well as uninfected people after liver transplant, Gorenberg said.

"They're behind the times scientifically when they turn people down who are in this condition," she said.

Gorenberg hopes that the Pittsburgh judge will rule by early December. But until then the state Department of Welfare, which oversees the Medicaid program, cannot comment on the issue, said spokeswoman Stephanie Suran.

"We can't place him on the waiting list until this issue is resolved," said Lisa Rossi, spokeswoman for the University of Pittsburgh Medical Center.

There is no interim treatment, such as the dialysis kidney patients receive, for patients with liver failure, Gorenberg noted. Gough's condition has made him tired and weak and he's beginning to have some memory problems. He's at home, not in a hospital, and sees his doctor regularly.

"The only thing that will prolong his life is a liver transplant," Gorenberg said. "A couple of [similar] cases went through such lengthy appeals that the patients ended up dying."

Since 1997, Pitt surgeons have performed 25 liver transplants and four kidney transplants in HIV-positive patients. The state Medicaid programs of New York and California, but not Pennsylvania, have covered liver transplants performed at UPMC for HIV-positive patients, Rossi said.

Gough was initially told by Pennsylvania Medicaid officials that his transplant would not be covered because the surgery is experimental and not medically necessary.

Gorenberg countered that Gough's personal doctors, transplant experts, medical journals and the United Network for Organ Sharing all say that HIV infection alone is not a reason to deny a person a transplant.

Researchers from Pitt, the University of Miami, the University of California at San Francisco, the University of Minnesota and King's College in London, compared survival rates after liver transplantation among a small number of patients infected with HIV and those who weren't. Their findings were published last week in the Journal of Infectious Diseases.

"If you're HIV-positive, your survival appears to be similar to people who are HIV-negative," said Pitt's Dr. Margaret Ragni. "That's the real information. That's exciting."

The researchers have been talking about the results at AIDS conferences for the past two years and have been keeping insurers informed, she added.

"Hopefully this will help folks like [Gough]," Ragni said. "The data we have in this paper should help insurers understand that there's every reason to do [transplants for] these folks."

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