Days After Lambda Legals Appeal, Kaiser Permanente Approves Kidney Transplant for Patient with HIV
After the initial request was denied because he has HIV, John Carl clears one more hurdle on his way to a kidney transplant
(Denver, Wednesday October 8, 2003) - Lambda Legal Defense & Education Fund today welcomed Kaiser Permanente’s announcement that it has reconsidered its initial rejection of a kidney transplant for a Denver-area man with HIV and will now cover the procedure.
Late last month, Lambda Legal filed a formal appeal with Kaiser Permanente, asking the HMO to reverse its denial in light of a range of scientific data and John Carl’s personal health history and experience.
“When real research on HIV and AIDS is considered, reasonable people come to reasonable conclusions, and that’s exactly what happened in this case,” said Hayley Gorenberg, AIDS Project Director at Lambda Legal. “In the last seven years since the advent of better treatments for people with HIV, the medical community nationwide has learned a great deal about organ transplants. Kaiser’s decision emphasizes this.”
John Carl, a 53-year-old resident of the Denver area, began experiencing kidney failure in the fall of 2001 and receives dialysis three times per week. The treatments take several hours per session. He feels ill from build-up of toxins in his blood before each dialysis treatment, and the sessions leave him feeling weak afterward. He also runs the risk of dangerous or even deadly infection from the dialysis procedure itself. This summer, he requested coverage for a kidney transplant, but Kaiser denied his request in late July, saying, “[k]idney transplantation for HIV-positive patients is contraindicated … due to its experimental status and non-favorable outcomes.”
“There’s a solid and growing body of scientific and medical evidence that clearly shows HIV does not significantly affect the outcome of kidney transplantation,” Gorenberg said.
Lambda Legal cited many examples of this data in its appeal letter, including a 2002 New England Journal of Medicine article on the subject that found “no evidence of poorer survival among otherwise healthy HIV-positive patients who are receiving anti-retroviral therapy,” which Gorenberg said is precisely Carl’s situation. The article went on to say that “transplantation in HIV-positive patients should … not be considered experimental,” and it further supported reimbursement for the patients.
A recent study of 45 liver and kidney transplant recipients with HIV on anti-retroviral medications showed that after one year, the patients and their new organs survived at rates similar to HIV-negative transplant recipients. The study’s authors concluded, “there is no ethical justification for withholding transplantation from this population.”
“Kaiser’s initial denial put John Carl’s life in jeopardy by closing the door on the one treatment that would cure his disease,” said Gorenberg. “Kaiser’s reconsideration of John’s case puts him back in control of his life.”
Carl is in a program called M+C, or Medicare plus Choice, in which Medicare pays his enrollment in Kaiser Permanente HMO. Part of the arrangement requires Kaiser to follow Medicare guidelines for coverage. Under Medicare guidelines, Kaiser must cover the costs of any treatment that is “reasonable and necessary for the diagnosis or treatment of illness or injury or to improve the functioning of a malformed body member.”
Carl has already been accepted by the United Network for Organ Sharing’s national list, waiting for a suitable kidney. In 1992, the United Network for Organ Sharing, a national clearinghouse for patients waiting for organs and organs available for transplantation, issued a statement on patients with HIV, which said, "[a] potential candidate for organ transplantation whose test for HIV-Ab is positive but who is in an asymptomatic state should not necessarily be excluded from candidacy for organ transplantation."
Carl, who has had HIV for 15 years, has an undetectable viral load and has no opportunistic infections. "This is a victory on many levels. My joy is my own, as well as, and more importantly for, all affected people in the HIV community. Life can and will continue,” Carl said.
"It was always clear that the medical evidence supported John's kidney transplant. This decision is a victory for John and for others who may face discrimination in health care,” said Barry Glass, social worker at The Legal Center for People with Disabilities and Older People in Denver, where Carl is a client.
According to Lambda Legal, people with HIV are still sometimes blocked from being considered for transplants, even though medical and scientific evidence makes it clear that they should be evaluated on a case-by-case basis like any other transplant candidates.
Hayley Gorenberg, Director of Lambda's AIDS Project, is handling the case. She is joined by co-counsel Eric Maxfield with The Legal Center for People with Disabilities and Older People, based in Denver.
Contact: Lisa Hardaway- 212-809-8585 X-266 Pager: 888-987-1971
About Lambda Legal’s AIDS Project
Lambda Legal was founded in 1973 to advance the civil rights of lesbian, gay, bisexual and transgendered people, and began working on behalf of people with HIV and AIDS at the onset of the epidemic in the 1980s. Lambda Legal filed the first AIDS discrimination case in the nation in 1983, and later successfully forced hospitals to treat people with HIV and pushed prescription drug companies to lower the cost of HIV and AIDS treatments. Lambda Legal’s AIDS Project has won critical victories on behalf of people with HIV and AIDS to be treated equally and with dignity in employment, medical services, public accommodations, parenting and other areas of life.