Longtime Marin AIDS sufferer finds survival to be a mixed blessing [The Marin Independent Journal, Novato, Calif.]

Nov. 30--Alex Diefenbach lives a stone's throw from San Quentin State Prison, and since his AIDS diagnosis nearly 30 years ago Diefenbach's life has been circumscribed much like those of the inmates at the prison.

Diefenbach, 63, tested positive for HIV in 1987, but he suspects he was infected five or six years earlier, at the time AIDS first surfaced in the Bay Area. Diefenbach recalls a friend, with whom he had been sexually intimate, telling him in 1982: "All they know is wrong with me is my immune system is screwed up."

The friend, who had just been discharged from the hospital, died soon after. And in 1987 Diefenbach's romantic partner died of AIDS.

"I assumed I was positive and acted accordingly," said Diefenbach, who gained attention as a gay rights activist in Marin during the 1980s and helped to develop the Marin County AIDS Plan.

On Thursday's commemoration of World AIDS Day, the 29th anniversary of the fight against AIDS, Diefenbach is one of the 568 men and women in Marin County living with HIV infection or AIDS. Since AIDS emerged in the 1980s, 1,330 Marin residents have contracted the disease; 763 have died from it. Between 2008 and 2010, the county averaged 22 new cases and nine deaths per year, said Sparkie Spaeth, Marin County's manager of Community Health and Prevention Services.

According to the World Health Organization, there were an estimated 2.7 million new HIV infections in 2010. WHO estimates that in 2010

there were 34 million people living with HIV and 1.8 million people died of AIDS. WHO said that AIDS-related deaths worldwide have decreased steadily from a peak of 2.2 million in 2005.

Diefenbach, however, recalls 1987 and 1988 as "the years of the great die-off."

"It's when I lost a quarter of my address book," Diefenbach said. "And then in the next couple of years, I lost another quarter of my address book."

Diefenbach assumed he would soon fall sick and die as well.

"All I had seen around me was people dying pretty quickly, so that was my anticipation," he said.

Diefenbach did become gravely ill with pneumocystis pneumonia in 1997. He was hospitalized and lost 30 pounds; it took him nearly a year to recover. After that, however, he started taking anti-viral drugs and has suffered no other serious medical problems due to the disease, although his immune system remains weak and he sometimes suffers nausea attacks that send him to the emergency room. He takes a drug cocktail consisting of Reyatz, Intelence and Epirir to keep the disease in check.

Four or five years ago, Diefenbach's s doctor told him he is now more likely to die of old age than of AIDS.

"That presents a problem," Diefenbach said.

Diefenbach earned a bachelor's in architecture from the University of Notre Dame and had planned to get his master's and then work overseas for a non-governmental organization. But the epidemic prevented him from returning to school and he hasn't been able to work since 1999. He said that if he got a job now he wouldn't be able to pay his medical bills, because he wouldn't be able to get insurance and he would lose government subsidies for medical expenses and housing. So he lives a Spartan life on what he receives from Social Security and Medi-Cal.

"At this point I can only afford a tank of gas a month, which limits mobility. I have all this time on my hands but I can't do things I'd really love to do," Diefenbach said. "I'm trying to figure out what to do and how to live the rest of my life in poverty. I'm stuck."

Diefenbach said he has given up on finding a new romantic partner even though his "shrink" keeps urging him to date. After his partner died in 1987, Diefenbach became close to another man, who then died of AIDS in 1989.

"A couple years after that I met someone else I thought was really wonderful, and six weeks later he was diagnosed with AIDS and he was dead within a year," Diefenbach said. "After that I decided that dating was far too complicated."

Contact Richard Halstead via e-mail at [email protected]

AIDS QUILT

In commemoration of World AIDS Day, A portion of the "Names Project" AIDS memorial quilt will be on display from 9 a.m. to 8 p.m. Thursday at the Marin AIDS Project, 910 Irwin St. in San Rafael.

There will be a gathering at 6 p.m. at the quilt to remember loved ones who have died of AIDS.

The memorial quilt is made up of more than 46,000 panels, each 3 by 6 feet and sewn by friends, lovers and family members to commemorate the life of someone who has died of AIDS.

___

(c)2011 The Marin Independent Journal (Novato, Calif.)

Visit The Marin Independent Journal (Novato, Calif.) at www.marinij.com

Distributed by MCT Information Services