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June 5 is National HIV/AIDS Long-Term Survivors Awareness Day

The first National HIV/AIDS Long-Term Survivor Awareness Day (NHALTSAD) will take place this week on June 5. The day is one that has historical significance in San Francisco, but also globally, because it was the same day in 1981 that the U.S. Centers for Disease Control (CDC) reported the first cases of a new and devastating disease we now know as AIDS.

As a long-term survivor living with AIDS for over 26 years, there is not a day that goes by that I do not remember those dark years of the epidemic, with all the desperation and tragic loss. For the past 33 years it has been a long road for us survivors, both HIV positive and negative, and there is much trauma that has not been addressed for a variety of reasons.

A set of psychological symptoms such as depression, anxiety, post-traumatic stress, and even suicide -- now known as AIDS survivor syndrome (ASS) -- has become the wake-up call for more attention to these survivors. Over the past several years there have been a number of deaths among long-term survivors that are most likely related to AIDS Survivor Syndrome.

Let's Kick ASS is a San Francisco grassroots organization responsible for spearheading this new awareness day. The idea began when Tez Anderson, Michael Siever, and myself met informally in local coffee shops to discuss this paradox: the fact that many of us have survived AIDS to grow into our senior years, but there is still a great deal of suffering going on.

We recognized the stark reality that not only was not much known about this phenomenon, but also nothing was being done. We asked ourselves if so-called "AIDS, Inc." had dropped the ball, focusing now on an “AIDS-free generation” instead of the forgotten warriors who were now in great need of help. We feared that the Denver Principles declaration from the early years of the epidemic had gathered dust on the shelves in many of our AIDS organizations. Whatever the reasons, we knew that something was broken and needed to be fixed. As usual, we stepped in to take care of our own.

We began holding steering committee meetings in a small office above Harvey’s (a Castro eatery named after Harvey Milk) with a few other well-known long-time survivors and veterans of the AIDS war. Our first town hall forum was held in September 2013. There was an electrifying energy in the room as the meeting commenced, reminding me of an early ACT UP meeting minus the anger. We heard that survivors needed to open up and talk about the dark days -- but more importantly, to begin to plan and strategize about reclaiming our lives, ending the isolation, and planning for our future.

Social media interest in Let's Kick ASS and long-term survival issues started to explode. Passionate emails and comments flooded in from all over the world, recognizing the very same survival issues we had begun to see in San Francisco. We started planning "a day to call our own" that would focus around the fact "we're still here!" June 5 was selected as the day that would become our own National HIV/AIDS Long-Term Survival Awareness Day.

In San Francisco, a day of activities will honor the experiences and losses of long-term survivors and work towards a productive future. The day will start at 11 am with a heart circle meditation and tree planting at the AIDS Memorial Grove, followed from 1 to 9 pm by an AIDS Survivor Summit at the San Francisco LGBT Center. The Summit will include a series of 3 talk-show format town hall forums that will address challenges and solutions, the importance of meaning and purpose in the lives of long-term survivors, and mobilization and empowerment, the key to our future.

Several community leaders are expected to lead and participate in discussions with the audience. In conjunction with the Summit, the Expo (2-7 pm at the LGBT Center) will feature several local HIV/AIDS organizations that now provide services for long-term survivors at staffed information tables. Finally, a Pre-Pride reception for long-term survivors and anyone who wants to attend will be held from 7:30-9 pm. All events are free and anyone can join in any or all of the day’s activities. The City of San Francisco will be honoring the day with a proclamation.

Other cities across the county are also planning events tailored to their own communities to honor long-term survivors. In Seattle, the Bastyr Immune Wellness Care Clinic, a naturopathic medicine will join with several other local organizations to celebrate NHALTSADwith a pot-luck meet-and-greet. In Portland, the newly formed Let's Kick ASS-PDX will also hold a gathering and dinner conversation. Several smaller events are being planned in Memphis, while  the National HIV is Not a Crime Conference being held in Iowa.

Hoping that another national HIV/AIDS awareness day event won't be forgotten after it's all over, Let’s Kick ASS will continue mobilizing and strategizing around long-term survivors' issues. A continuing San Francisco coordinating team will be busy planning more events including town hall forums, social events, and retreats. Importantly, an advocacy agenda that begins with re-awakened principles will seek to address the issues of AIDS survivors today.

Let’s Kick ASS is grassroots. We don't consider our work to be service provision, but rather mobilization and connection. We need energy and we need resources to continue. Any long-term AIDS survivors -- including HIV negative survivors -- are invited to attend activities on June 5, but also to participate in future planning that will help bring survivors out of isolation, fear, and distress, living into a future we never dreamed possible.

Matt Sharp is a long-term AIDS survivor, a co-founder of Let's Kick ASS, and a nationally known HIV treatment activist, now focusing on research towards a cure.

6/4/14