Bay Area Reporter - October 19, 2006
Liz Highleyman, liz@black-rose.com

Mr. Getty was perhaps best known for receiving the first-ever baboon bone marrow stem cell transplant in 1995, in the hopes that the baboon's natural resistance to AIDS might help restore his failing immune system.

"Jeff was someone who spoke truth to power and he had a profound effect on those around him," said fellow activist Bill Hershon, who knew Mr. Getty for more than 20 years. "Virtually everyone with HIV has benefited from his work."

Mr. Getty was born in 1957 in New London, Connecticut. He grew up near the Coast Guard Academy and developed a lifelong interest in sailing. He moved to Oakland from Vermont in the late 1970s, immersing himself in the sexual abandon of the pre-AIDS era. He worked at the University of California at Berkeley as a policy analyst in the admissions office. He was married to a woman for several years before meeting his partner of nearly two decades, Kenneth Klueh, who was at Mr. Getty's side when he died.

"Jeff's public activism is well known, but in his private life he was just as enthusiastic," Klueh told the Bay Area Reporter in an e-mail Tuesday. "He taught me so much: to be courageous and open to new possibilities, to be kind and generous to people, and to know when to say 'I'm sorry.' He was a deeply spiritual person with a heart full of love for me and all of his friends. He's gone from us now, but his spirit will live in the lives of the many people who love him."

Diagnosed with AIDS in 1985, Mr. Getty threw himself into volunteer work and treatment activism. A longtime member of ACT UP/Golden Gate and its successor group, Survive AIDS, he was a tireless advocate for the development of new antiretroviral and immune-based therapies, as well as expanded access programs for experimental drugs, often facing arrest in protests against pharmaceutical companies.

"Jeff was a tough, in-your-face activist. He was bold, loud, and relentless in his attacks on AIDS Inc. and the status quo. He never met a drug company that he liked," recalled Ronald Baker, the former director of treatment advocacy at the San Francisco AIDS Foundation who now runs www.HIVandHepatitis.com. "Jeff was also extraordinarily sensitive and caring to his fellow HIV patients, especially those who, like himself, were only a few steps ahead of the grim reaper."

"One of the amazing things about Jeff Getty was his will to live and to fight for his own life - and to inspire others to fight for their lives - but also his generosity in working on issues that didn't directly affect him," said fellow ACT UP/Golden Gate and Survive AIDS member Stephen LeBlanc, recalling Mr. Getty's activism on issues such as housing for people with AIDS.

Extraordinary measures

Mr. Getty took extraordinary measures to prolong his life at a time when an AIDS diagnosis usually meant a death sentence. He volunteered for clinical trials of investigational therapies, smuggled in unapproved drugs from Mexico, and received experimental white blood cell transfusions from his sister.

But the baboon stem cell transplant was Mr. Getty's most daring experiment. He had to lobby the Food and Drug Administration to approve the operation, and he received widespread criticism both from scientists concerned about the safety of interspecies transplantation and from animal rights activists who questioned the ethics of the procedure.

At the time, however, he had few options. "I know I could die from this treatment," he acknowledged in an interview at the time. "I love life, but I learned with this disease, if you don't take some chances, you won't survive."

"That trial reflects the level of desperation at the time," Dr. Steven Deeks, a professor at the University of California at San Francisco, told the Associated Press. "He inspired us that a risky and aggressive intervention was worth trying."

Although the baboon stem cells did not take hold in his body, Mr. Getty's health nevertheless improved enough to allow him to benefit from combination therapy with the new protease inhibitors drugs, which became available the following year.

Mr. Getty played a key role in helping HIV-positive people obtain organ transplants, including the many who need new livers due to co-infection with chronic hepatitis B or C. He successfully enlisted the support of now-state Senator Carole Migden (D-San Francisco), then a member of the Assembly, who helped secure $3 million in state funding for an organ transplant program for people with HIV based at UCSF.

"Jeff never accepted that anyone should be treated as a second-class citizen just because he had a disease," said LeBlanc.

Michael Lauro, another Survive AIDS member, added, "Many people are alive today because of Jeff."

One of those people is playwright and ACT UP co-founder Larry Kramer, who knew Mr. Getty through the AIDS activist community. Co-infected with HIV and hepatitis B, Kramer received a new liver in 2001, at a time when most transplant centers and surgeons refused to perform the procedure on HIV-positive patients.

"I only had six months to live and I had to find a doctor," Kramer told the B.A.R. this week. "Out of the blue, Jeff Getty called me up and said I had to meet Dr. John Fung at the University of Pittsburgh, that he would take me on. John Fung saved my life, and without Jeff Getty, I never would have found him."

"Jeff was fearless," said Fung, now at the Cleveland Clinic. "His support of transplantation for HIV-positive candidates was critical in making this type of treatment more accepted and more widely offered. He was outspoken because he had to be, to make the single voice in the dark count."

"Jeff is part of the reason that myself and other people with HIV/AIDS are alive," added Matthew Sharp, a former ACT UP/Golden Gate member who now works with the Test Positive Aware Network in Chicago. "He kept us going when we wanted to quit and he advocated on our behalf with drug companies, healthcare providers, HMOs, and health insurance companies to get us what we needed to live."

Hank Wilson, another Survive AIDS member, said Mr. Getty "was demanding of us, he was demanding of service providers, and he was demanding of researchers."

Mr. Getty was a key player in the Survive AIDS campaign to pressure Kaiser Permanente to pay for things such as viral load tests and experimental therapies such as human growth hormone, taking advantage of the attention he gained through the baboon transplant. When the media showed no interest in covering the issue, Mr. Getty appeared in television interviews wearing a cap emblazoned with the words, "Kaiser Kills."

LeBlanc said that the attention generated by Mr. Getty helped transform Kaiser from one of the worst in providing HIV care to one of the most widely praised HIV healthcare providers.

Mr. Getty then turned his attention to pharmaceutical company advertisements that he felt conveyed an unrealistic portrait of healthy, active people with HIV, and expressed disappointment that many young gay men appeared to be eschewing safer sex.

"If you get HIV infected now, you don't have a future. You don't have the rest of your life, and you shouldn't think that you will," he said in a 2000 interview. "People are walking around thinking, 'Oh I'll just take a pill a day until I'm an old man and everything will be fine.' This is not diabetes. I would love to have diabetes. Compared to HIV, diabetes would be a picnic."

In 2002, Mr. Getty retired from activism and moved to Joshua Tree, in the Southern California dessert, to focus on his health.

"I spent the last 15 years trying to keep myself and others alive, and through all the anger and frustration, the lesson I've learned is that we cannot turn our backs on sick people," he told the B.A.R. at the time. "Now I feel it its time for me to learn the next lesson."

Mr. Getty is survived by his partner Klueh, his father Edward Getty of North Stonington, Connecticut; and sisters Carrie Getty of Idaho Falls; Kim Getty of Ashland, New Hampshire; and Jennifer Getty of El Cerrito, California. His mother Susan Getty died earlier this year.

A Bay Area memorial service is expected to take place early next month, Klueh said. Donations in Mr. Getty's name may be made to the Maitri Hospice (www.maitrisf.org).

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