Issue:  Vol. 47 / No. 42 / 19 October 2017
 

SF group designates day for long-term AIDS survivors

NEWS


m.bajko@ebar.com

Let's Kick ASS co-founder Tez Anderson
Photo: Rick Gerharter
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A San Francisco-based group has designated a special day to recognize long-term AIDS survivors that it hopes will become a yearly event.

The inaugural National HIV/AIDS Long-Term Survivors Awareness Day will take place June 5. Its theme is "We're Still Here" in recognition of those, both HIV-positive and HIV-negative, who survived through the trauma of the early days of the AIDS epidemic in the 1980s and 1990s.

The lead sponsor and organizer of the day is the group Let's Kick ASS, which stands for AIDS Survivor Syndrome. Formed last year, the grassroots organization has held a number of forums and events to bring long-term AIDS survivors together and to advocate for their needs.

"The reason Let's Kick ASS was founded was to raise awareness about long-term survivors. This day is one more step in that evolution and one more effort to get it on the agenda," explained Tez Anderson, 55, a co-founder and leader of the group who has lived with HIV for three decades.

The date for the observance coincides with the anniversary of the first published report of what became known as AIDS in the Centers for Disease Control and Prevention's Morbidity and Mortality Weekly Report issued June 5, 1981.

"Really brilliantly Tez decided that would be the day we used to make this a long-term survivor awareness day," said Matt Sharp, 56, who helped launch Let's Kick Ass and has been living with HIV for more than 26 years. "This was a goal we had early on. It really started around World AIDS Day on December 1."

The day for longtime AIDS survivors is modeled after annual commemorations such as World AIDS Day and similar national days of awareness like National Black HIV/AIDS Awareness Day (February 7); HIV Vaccine Awareness Day (May 18); and National HIV Testing Day (June 27). According to the website AIDS.gov, there are currently 13 officially recognized special days related to HIV and AIDS.

Let's Kick ASS leaders hope to see the long-time AIDS survivors day added to the list. Anderson said he contacted the administrators of the AIDS.gov website and was told he could request official recognition once the first observance of the special day occurs.

"It was a little disappointing, but the federal government doesn't operate very quickly," said Anderson. "Next year will be an official day. We are already planning for 2015."

The 2014 observance will kick off at 10:30 a.m. at the National AIDS Memorial Grove in Golden Gate Park with a heart circle and tree planting to recall and honor those lost to AIDS.

Afterward, beginning at 1 p.m., will be an AIDS Survivor Summit at the LGBT Community Center, 1800 Market Street. It will feature three panels covering various topics, such as the challenges long-term survivors face, what types of services they require, and how to plan for future needs.

The organizers also plan to present a Long-Term Survivors Declaration modeled after the Denver Principles, 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.

"Really, our focus is the future," said Sharp. "We want to bring people together to mobilize around what are we going to do now. Now that we have our lives how are we going to go forward? What help do we need and what is our strategy for survival?"

The event at the LGBT center will also feature an expo with tables staffed by various AIDS agencies in San Francisco. The day ends with a pre-Pride party from 7:30 to 9:30 p.m.

For more information about the longtime AIDS survivor day events, see this week's Guest Opinion on page 6 or visit http://aidssurvivorssummit.org/.

SF budget analyst to study longtime survivors

One issue confronting longtime AIDS survivors has already captured the attention of San Francisco officials. Gay District 8 Supervisor Scott Wiener has asked the city's budget and legislative analyst to study what happens when people living with HIV who have been receiving long-term private disability insurance that they got through their employer age out of such coverage in their early 60s and transition over to Social Security.

"There is a looming challenge where quite a few longtime HIV survivors went onto disability in the 1980s or 1990s. They are now approaching the age – typically 62 or 65 – where the disability policy will end and they will be transitioned to Social Security," said Wiener. "This will often represent a significant income drop, which could make it hard or impossible for them to continue to afford their housing."

While Wiener acknowledged, "this is a unique and concentrated issue that will begin and ultimately tail off," nonetheless he noted that "for this specific population, and for our community, it's a big deal and we need to get our heads around it."

The issue was addressed at a recent forum Let's Kick ASS held about "the disability trap," said Anderson. "This is a substantial drop in their income that is going to throw a lot of people into crises. This is something we would never have seen coming because a lot of people thought they would never survive."

But due to the introduction of protease inhibitors in the mid-1990s, AIDS quickly went from being a death sentence to now seen as a "manageable disease." The result has been an entire generation of people living with HIV or AIDS unprepared for aging into their senior years.

"It is a real big sea change. Not only are we living longer, but we have to deal with the ramifications of living longer," noted Anderson. "I know several friends who are in that situation who are starting to get panicky about turning 60 and are saying 'Oh, my god! I don't know what I am going to do when my income drops.' What we need are creative solutions. But we have a lot of smart people in this town to come up with answers."

Before the city can devise a response, said Wiener, it needs to know the scope of the problem. He hopes to have the budget analyst's report later this summer.

"Right now we know there is a problem," said Wiener, "but it has never been comprehensively quantified."

 

 

 

 






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