Group Drafts Agenda for AIDS Survivors

Kilian Melloy READ TIME: 2 MIN.

A San Francisco-based group is putting forth an agenda for long-term survivors of the AIDS epidemic it hopes will gain traction among local and national leaders.

Known as Let's Kick ASS (AIDS Survivor Syndrome), the group released a draft version of the document it is calling "A Vision for Our Future: AIDS Long-Term Survivors Proclamation" at an event September 25 celebrating its one-year anniversary.

"San Francisco once again is leading the programs and models," said Matt Sharp, a co-founder of the volunteer-run group.

Among its first priorities is seeing that AIDS Survivor Syndrome "is recognized, understood, and treated appropriately."

Studies have shown high rates of post-traumatic stress disorder, or PTSD, among people living with HIV. Leaders of Let's Kick ASS argue that people, whether HIV-negative or HIV-positive, who have lived through the now three-decade-long AIDS epidemic are grappling with their own form of trauma stemming from seeing so many of their friends and loved ones die due to AIDS complications while they have survived.

"While we have lived with it and see it in others every day, our goal is to be catalysts for gathering research and data for the betterment of our lives," reads the group's vision statement.

The document also calls for long-term survivors to have a greater say in developing HIV policy at all levels and greater leadership roles in the AIDS nonprofit sector.

"We demand central leadership roles in our local and national AIDS service delivery systems," states the four-page document.

It also calls on the growing number of people 50 years of age or older living with HIV, estimated at more than 218,000 people nationally, to become their own advocates.

"It is now time to become fully engaged elders, teachers, and leaders," states the document.

A nine-person group has been meeting over the last 12 months to write the document. In presenting it to the more than 75 people who attended last week's meeting at the LGBT Community Center, Let's Kick ASS leaders stressed it was not a final plan and asked for input on what was missing from the statement.

It is modeled after a document drafted by people living with AIDS who were attending the 1983 National Lesbian/Gay Health Conference and AIDS Forum and felt their voices were not being heard.

"This could set up a good boilerplate for where we go over the next 10 years," said Mike Shriver, a onetime AIDS czar to former San Francisco Mayor Willie Brown who helped draft the Let's Kick ASS vision statement.

Russell Deason, 51, who has lived with HIV since 1987, said the document "needs some fine-tuning," such as expressing that long-term survivors are not only fighting for their needs but also for those people in their 20s who are just now being diagnosed with HIV.

"We should be fighting for them too," said Deason.

Overall, he said he was "very pleased" with the draft version.

"The aims and objectives are important," he said. "This being our legacy is very true."

Let's Kick ASS plans to post the document to its website at http://letskickass.org to gather more feedback. Leaders of the group will consider the suggested changes and could present a revised version at a community town hall it is planning to host in December.


by Kilian Melloy , EDGE Staff Reporter

Kilian Melloy serves as EDGE Media Network's Associate Arts Editor and Staff Contributor. His professional memberships include the National Lesbian & Gay Journalists Association, the Boston Online Film Critics Association, The Gay and Lesbian Entertainment Critics Association, and the Boston Theater Critics Association's Elliot Norton Awards Committee.

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