A special report looks at past, present, and future concerns
Positively Aware Matt Sharp
Matt Sharp

Earlier this year, I was commissioned to write a comprehensive report about HIV/AIDS long-term survivors. As a 28-year survivor, and one of a handful of AIDS activists leading mobilization efforts for survivors in San Francisco, later nationwide with The Reunion Project, this writing has been my own inspirational catharsis. But hopefully, The Unintended Consequences of AIDS Survival will engender discussion and stir creation of new research, new interventions, policy recommendations, advocacy, and programming before today’s long-term survivors are gone. The full report, supported by Bristol-Myers Squibb, is scheduled to be launched on World AIDS Day, December 1, 2016.

Contrasting the early AIDS years with today provides an important perspective on how far we have all come. 

I have written an attempt to tell the story and unpack the recognition and awakening of a considerable proportion of HIV-positive survivors, mostly in the United States, who for the past several years have been experiencing unintended negative consequences of a life with HIV. Their issues consist of co-morbid mental health conditions, unprocessed grief from decades of back-to-back losses, the mashup of the physiologic and psychological effects of aging, and practical day-to-day issues. These consequences are layered, intersecting, and synergizing, one on top of another, year after year and together have created a groundswell of concern, now becoming a wake-up call for HIV/AIDS survivors and the rest of the world.

We know that, tragically, 95.5% of all people with AIDS did not survive in the first decade. HIV cases were not reported back then, but were simply estimated. Therefore, it is unknown how many total HIV/AIDS survivors are with us today. There has not been an epidemiological accounting of survivors and when they were diagnosed.

There are also untold HIV-negative men and women, family members, caregivers, and community members who fought for the lives in their communities while fearing for their own. They are survivors of a different kind, but have similar unprocessed grief and trauma. For the sake of issuing a concise report its focus will be on HIV-positive survivors.

As survivor stories are heard, each one is unique with bits and pieces that are woeful, sometimes horrific, but always revealing. Listening and telling these stories is healing and may help those who were unaware and may have kept issues suppressed, or were simply isolated and uninvolved. Discussion, advocacy, further research, policy direction, and interventions will hopefully develop as more and more survivors come forward to tell their stories and advocate for themselves and other survivors.

Through looking back at HIV/AIDS, a context is made for our survivor history, including an understanding of the issues, the intensity, and a vivid perspective that many did not witness, or may not recognize.

Contrasting the early AIDS years with today also provides an important perspective on how far we have all come. All the successes certainly provide evidence for survival, and show the extent of what can be attained if a community comes together. Most survivors are thankful to be alive, and some have also fared well due to resilience, successful careers, and continuous social and intimate relationships. Unfortunately, there is confusion, misunderstanding, and downright apathy from many who see HIV survivorship as simply a reward of the benefits from a collective response to AIDS. Survivors tell of being given a congratulatory nod to finally reaching undetectable viral loads, but only left to fend for themselves without the intense years of support they had seen for years from medical providers, policy makers, and even families. Priorities shifted as AIDS deaths decreased, leaving many survivors with inadequate psychosocial support follow-up.

For the past several years, survivors in some jurisdictions such as San Francisco have been mobilizing, socializing, participating in advocacy councils, lobbying city government for policies and funding, participating in research and helping to develop research, and essentially creating new hope for themselves and their peers, and all people with HIV who will live long lives.

Social media has had a tremendous impact on survivor mobilization. There have also been many print, film, and media stories from AIDS organizations and websites, national broadcast stations, many Facebook group pages, and four major documentary films that have opened in film festivals and other showings. Of course the internet is awash with stories and film clips on HIV/AIDS survivors.

Survivors all over the country are reading and hearing the news, they are getting involved by coming together to socialize and share their stories, or are helping to make changes in their communities. Some are stepping up to advocate for policy changes that will help to provide services, especially in urban centers, where the majority of survivors live. Survivors are spawning research that is looking at the positive and negative consequences, the impact, and the connotation for longer, healthier, happier lives.

The report will also highlight some of the longest standing survivor mobilization and advocacy groups across the country. In spite of the cards they were dealt, long-term HIV-positive survivors are living into their senior years, a kind of miracle no one expected to come out of the devastation of AIDS. Now that a considerable amount of time has passed many want to just make some sense of it all, and are beginning to come together to try and pick up the pieces of an interrupted life full of sickness, death, and unparalleled emotional strife.

MATT SHARP is a long-time HIV/AIDS activist and a member of the The Reunion Project’s national organizing committee. The Reunion Project is funded by an educational grant from Bristol-Myers Squibb and in partnership with TPAN, the publisher of POSITIVELY AWARE.