Issue:  Vol. 48 / No. 3 / 18 January 2018

Programs emerge for
HIV+ older adults


Panelists at a recent San Francisco AIDS Foundation forum on HIV and aging included, from left, Sister Vicious Power Hungry Bitch (a.k.a. Ken Bunch), Don Schwarcz, Steve Zetlan, Mary Lawrence Hicks, and Matt Sharp. At right is moderator Hank Plante.(Photo: Jane Philomen Cleland)
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As older adults living with HIV in San Francisco organize to demand programs that meet their needs, local AIDS agencies are beginning to prioritize services for people over the age of 50.

For several years now half of the people in San Francisco with an HIV diagnosis are 50 years of age or older. And the population of seniors living with HIV and AIDS is expected to continue increasing.

While AIDS agencies have been internally discussing how to address this next stage in the city's AIDS epidemic, it has only been in recent months that the public has begun to see the outcome of those discussions.

"We have been working on this since 2009, before I got here, and it has become more focused within the last year," San Francisco AIDS Foundation CEO Neil Giuliano told the Bay Area Reporter last week in a brief interview at the agency's town hall forum about aging with HIV. "We want to make sure this age group is part of our program moving forward. We have an obligation to work with the community, keep them engaged, and do things that are valuable for them."

During his public remarks at the October 23 event, which drew more than 75 people to the LGBT Community Center for the panel discussion, Giuliano told the audience that the AIDS foundation's first step came in 2009 when it launched a column on its blog focused on aging issues.

The following year the agency held several forums on the topic at AIDS conferences it attended. Then in 2012, for the launch of its Real Talk series, the first topic to be addressed was the challenges gay men face as they age, noted Giuliano.

Out of those conversations the agency offered several support groups for long-term survivors of AIDS under the auspices of its Positive Force group. And earlier this year it launched its new 50-Plus Network for HIV-negative and -positive older gay and bisexual men.

"We recognize there is a significant need," said Giuliano.

It isn't just nonprofits that are looking to address this growing segment of the city's population. People who survived the 1980s and early 1990s when AIDS was still a lethal disease have formed their own grassroots initiative called Let's Kick ASS, which stands for AIDS Survivor Syndrome.

As the B.A.R. noted in a recent story about the formation of the group, comprised of mostly men but also a few women, the group's members feel left out of the current HIV prevention model of test and treat, which is focused on ensuring people who are HIV positive know their status and seek medical care.

The approach fails to address the trauma, depression, and isolation many long-time AIDS survivors, whether they are positive or negative, are now grappling with, argue the founders and members of Let's Kick ASS.

"We are missing a strong sense of community," said Don Schwarcz, a member of the panel last week who discussed the upheaval he went through when in 2000 he realized he would live well into his golden years after thinking since 1995 his death from HIV and AIDS was imminent. "San Francisco has a lot of men in our age range. I see a need of rebuilding a strong, compassionate community that cares for each other. There are a lot of lonely, isolated people out there."

Let's Kick ASS recently subleased office space in the Castro and is planning to hold its third community-wide meeting in mid-November. One of its top priorities is seeing mental health services for older adults experiencing post traumatic stress due to the AIDS epidemic as well as medical services that can address the myriad health needs of older adults with HIV.

"It is really kind of useful for them to hear us give our honest opinion about what the AIDS foundation could be doing for longtime survivors," said Tez Anderson, 54, who has been HIV-positive for 30 years and co-founded Let's Kick ASS.

Last week, prior to the Real Talk forum, Anderson and Matt Sharp, a longtime AIDS activist who was one of the panelists, met with foundation officials to discuss what they have been hearing from people who have now lived with AIDS for more than three decades.

"Our role at Kick ASS is to explain this to ASOs and the media so they understand our experience with AIDS is drastically different than someone just tested," said Anderson, using the acronym for AIDS service organizations. "We are kind of on the cusp of it right now. It is nice to see the AIDS foundation catching up."

Last weekend a handful of members of the new grassroots group went on a retreat to come up with a mission statement that partly reads, "We're dedicated to reclaiming our lives, ending isolation, and envisioning a future we never dreamed of." They also discussed various issues to address in coming months.

"We need peer-to-peer services and psychological services. Most people my age are bored with support groups," said Anderson.

The group has teamed with the Shanti Project to conduct a five-month pilot project to help train members of Let's Kick ASS peer-to-peer outreach, skilled group facilitation, and tools for on-going self-evaluation. Shanti staff will then compile a report about the work the new group is doing and present it to local health officials.

"For us our goal is to just essentially follow what is happening and the development of Let's Kick ASS. We will provide any support administratively or with infrastructure or note-taking," said Alyssa Nickell, Shanti's director of program development and research who is overseeing the pilot project. "The key to it is we are not going to lead that. We are working with them on how do you want to evaluate this process. It is the community saying what they need and us following it."

The agency received $40,000 from the Department of Public Health in unspent funds that came available when the latest contract year ended September 30. The pilot project is in response to a study that the HIV Health Services Planning Council commissioned earlier this year that was conducted by Loren Meissner as part of his master's project at San Francisco State University.

As the B.A.R. reported in July, one of the study's main findings was that many HIV-positive people 50 years of age and older are isolated and lack a support network. The HIV council is now working on how to address those issues.

"I think it was really great timing. What Let's Kick ASS is doing is in line with what this project is trying to do," said Shanti Executive Director Kaushik Roy. "Oftentimes organizations or the nonprofit sector is instructing people they are serving. This is an opportunity for HIV-positive people to support what it is they need and create solutions to those needs."

Anderson has heard from people across the country and overseas wanting to form their own Let's Kick ASS chapters. The response in recent weeks has been "overwhelming," he said.

"I find it kind of gratifying people have noticed what we are doing and want to assist us in our mission," said Anderson. "I think Shanti's peer-to-peer model and the way they operate that is very much what we are doing. It is powerful to people; it is not a service model but an empowerment model."

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