Aging With HIV

Two decades ago Cleve Jones, the founder of the AIDS Memorial Quilt, used $10,000 he scraped together from family and friends to buy "a little cabin" in the gay resort area of Russian River north of San Francisco.

During his run in 1992 for a citywide seat on the Board of Supervisors, Jones had concealed his declining health from voters. Following his defeat at the polls, he moved into his new abode in the unincorporated community of Villa Grande fully expecting to die.

His immune system ravaged by HIV, he was suffering from pneumocystis pneumonia and allergic to the drug prescribed to treat it.

"I moved out to the river because I didn't want people to see me. I was so sick," recalled Jones during a recent interview with the Bay Area Reporter. "I didn't want to get evicted in the middle of dying. No, I did not expect to survive."

"What the hell am I doing here? I didn't think I would make 40. I was really ill for a very long time," said Jones, who works as a union organizer for UNITE HERE.

As highlighted by last week's seventh annual National HIV and Aging Awareness Day, observed on September 18, the country's aging HIV population is a growing concern.

According to the Centers for Disease Control and Prevention, in 2010 persons aged 55 and older accounted for 19 percent (217,300) of the estimated 1.1 million Americans living with HIV.

In San Francisco, according to the city's 2013 annual HIV/AIDS epidemiology report, age 50 years and older was the largest age category for both men and women living with HIV (55 percent and 51 percent, respectively). Between 2009 and 2013, the number and proportion of living HIV cases aged 50 and older in the city increased from 6,395 (42 percent) to 8,650 (54 percent), stated the report.

"I think that aging with HIV brings on a whole series of things. It can come with depression and more," said San Francisco-based photographer Duane Cramer, 51, who has lived with HIV for nearly 20 years. "Fortunately, as it relates to my overall physical health, things have been very good. I really attribute that to having a positive attitude."

"What I like to call positively aging with HIV," added Cramer, who for several years now has been a spokesman for Merck's "I Design" campaign that urges people to work with their medical providers to develop a treatment plan tailored to their needs.

He also singled out the San Francisco-based group Let's Kick ASS (AIDS Survivor Syndrome) for providing a platform for long-term survivors of the AIDS epidemic to meet one another and advocate for their unique needs that come with aging with HIV.

"I think it is a really wonderful group of guys who have been long-term survivors who can get together and share best practices and their personal stories," said Cramer. "Sharing those stories and personal support can make us mentally stronger."

His best advice to people is to develop a treatment plan and not deviate from it.

"Immediately, I realized I needed to be adherent on my medication," recalled Cramer.

Need to Educate

People should also educate themselves about HIV's impact on the aging process, he added.

"Even if we are controlling our diseases as best as possible, we can develop other aging conditions decades ahead of our HIV negative counterparts. It is really important we know this," said Cramer. "By educating people about these things it empowers people to take better care of themselves."

Meredith Greene, a fellow at UCSF's geriatrics division, agreed that patients and providers should be thinking beyond just HIV in terms of their health.

"We know as people get older they may develop other diseases. HIV itself can be a factor for other diseases like heart disease," noted Greene. "Not just focusing on treating HIV but thinking about taking care of the whole person. Caring for not just one condition but multiple conditions."

By managing his health, Cramer is planning to be alive well into his 90s.

"Today, with so many great therapies out there, there's no reason why people can't live very long, healthy lives," he said. "My goal is to be 100."

As for Jones, he is in "pretty good health" though he has been having painful back problems. He is most worried about getting dementia and who will care for him in his old age.

"Who knew I was going to have to deal with aging after all this. It seems so unfair," said Jones, only half joking.

This year he lost his parents and two uncles within a six-month period, leaving Jones more acutely aware of his reliance on the community he has helped foster in the Castro since the 1970s. But the city's current housing crisis, which has hit the gayborhood hard and seen many older residents and people living with HIV or AIDS be forced out, has been unsettling to watch, said Jones.

"I am not the least bit different from the men of my age and similar circumstances who have survived and are now dealing with the housing crisis," said Jones, who lives in an apartment that is not protected by rent control. "I am very confident in this neighborhood someone is going to take my hand and say, 'Cleve, let me get you some help.' People are very kind to me; I don't want to lose that."

Parties for a Cause

To celebrate his 60th, Jones decided he wanted to hold a fundraiser for the San Francisco AIDS Foundation's new health center for gay and bisexual men being built in the heart of the city's gay Castro district. He reached out to drag queen Juanita More to serve as host, inspired by her raising more than $75,000 this year through her annual Pride party for local LGBT housing programs.

A co-founder of the AIDS foundation, Jones has at times been critical of the agency for being "too corporate." But since moving back to the city in 2010, Jones has been particularly pleased by its merger with Magnet, the gay men's health clinic, which led to the expansion of the facility in a new home on Castro Street.

"I am so impressed with the role they play in the community now," Jones said of Magnet. "A week doesn't go by where I don't refer someone there for HIV testing or medical services."

He would like to raise at least $85,000 toward the new health facility with his birthday fundraiser.

"I am happy with the model Magnet has become," said Jones. "The single most important reality we are dealing with today is treatment equals protection. The AIDS foundation has an extremely important role to play right now."

The push to start HIV-positive people on treatment in order to lower their viral loads to undetectable levels, and thus decrease the likelihood of transmission to their sexual partners, combined with HIV-negative people able to protect themselves from becoming positive by taking a once-a-day pill, has Jones hopeful the goal of halting the AIDS epidemic is achievable.

"I think it is the first opportunity to really end the pandemic," he said.

Cleve Jone's 60th birthday party benefit for SFAF will take place from 9 p.m. to 2 a.m. Saturday, October 11 at the Cafe, 2369 Market Street in the Castro. To make a tax-deductible donation to the agency online, visit http://www.sfaf.org/clevejones.

Meanwhile, Let's Kick ASS is celebrating its first anniversary Thursday night with a "party for a purpose" where it will be seeking feedback to its proposed long-term survivors' declaration and agenda.

"Based on many conversations, Facebook posts and emails we've come up with a set of principles and an agenda. It is clear that they need an agenda to begin getting the recognition survivors deserve," stated the group.

The event, titled "One Year Later: Setting A Grassroots Long-Term Survival Agenda," will take place from 7 to 9 p.m. Thursday, September 25 at the LGBT Community Center in the second floor Rainbow Room. The center is located at 1800 Market Street in San Francisco.