HIV Long-Term Survivors Day

Every year people join together to celebrate and honor the Long-Term Survivors of the HIV/AIDS epidemic. Please join with us in raising awareness about the needs, issues and journeys of HIV Long-Term Survivors (HLTS) as we mark two significant milestones – it has been 35 years since HIV was identified on June 5, 1981. It is 20 years since Highly Active Antiretroviral Therapy (HAART) was introduced.

There are a few definitions of Long-Term Survivor (LTS)

• Pre-HAART LTS — Longest-term survivors are individuals who acquired HIV in the 1980s and 1990s, before the advent of highly effective antiretroviral therapy (pre-HAART) when having HIV was considered a death sentence. Those living longest with HIV have physical and psychosocial implications that are vastly different from those who acquired HIV later in the epidemic.

• Post-HAART LTS — those who tested past 1996 and living with HIV for over 10 years.

There are long-term survivors of a different stripe that are often left out of the discourse. They are the survivors who remain HIV-negative. They were lovers, caretakers and frontline healthcare workers. They were lesbians who stepped in to take care of people with HIV and AIDS. They too suffered enormous losses.

It has been over thirty years since the Denver Principles began the self-empowerment movement for people living with HIV but long-term survivors now find our voices muted. Our issues are sidelined by the agencies we helped to form. Conferences devoted to HIV are focused on newer topics while relegating long-term survivors to the sidelines and affinity sessions off the main stage.

The theme for 2016 is “Moving Forward Together”. It celebrates those who have defied the odds by living with HIV for decades. Our focus is on ensuring that HIV Long-Term Survivors and Older Adults Living with HIV are not invisible and forgotten in the current HIV dialogue. We want to change the narrative from surviving to thriving. Achieving that goal requires older adults with HIV to be equipped for healthy aging. Long-term survival, once an almost unimaginable concept is now the norm.

With courage and compassion, we survived the darkest days of the plague. Without access to effective treatments, we were forced to rely on each other and ourselves. As individuals and a community, we exhibited strength we didn’t know we had. Now we’re face the conundrums of aging. Celebrating our lives is what the day is all about.

Today over half of all people living with HIV in the US are over 50. By 2020 that will increase to 70 percent. The mew face of HIV is aging. However, HIV and Aging is not a monolith. A case can be made that Pre-HAART survivors and Post-HAART survivors are separate cohorts with overlapping but different medical and psychosocial needs. Longest term survivors, those who acquired HIV before 1996, face different medical issues and decades of planning to is having an impact on our lives now.

We now find ourselves confronting the realities of aging— something that was unimaginable before 1996. We’re the generation who were told to plan to die young. By the end of that year, in the U.S. we witnessed the deaths of 362,004 of our loved ones and community. 6.4 million people had died form AIDS worldwide.

We chose June 5 to commemorate the day the CDC first announced the mysterious illness that was killing young gay men. It was the beginning of HIV/AIDS awareness before it was known as HIV/AIDS.

There’s a meme that “we lost an entire generation.” While we did a lot of our generation their are by recent estimates, 26% of Longest-Term Survivors alive now. Let’s celebrate, honor and appreciate that they still have years go and it is all our job to help them become the elders of our tribe.

The Challenges

Long-term survivors face a myriad of interconnected psychosocial, practical, and medical challenges rooted in HIV-stigma, aging, ageism, and economic distress that impacts functional health-related quality of life (HRQoL) issues.

Psychosocial

The AIDS epidemic has been a series of complex traumatic events. Long-term stress like that experienced by long-term survivors, is unique and we now know that survival itself can also have trauma-related implications. The legacy of our past is having an effect on our lives now, and too many survivors are unaware of what is happening to them.

The effects of ongoing trauma now present in combinations of depression, anxiety, emotional numbness, anger, survivor guilt, insomnia, nightmares, hypervigilance, hopelessness, sometimes substance abuse and or sexual risk-taking. It also includes emotional numbness, low-self esteem, avoidance, social withdrawal and isolation, a lack of future orientation and loss of self-regulation that occurs when survival dominates how a person thinks, feels, and behaves in every area of his or her life. It is that sense of feeling lost or “not myself”. It often includes an exaggerated and persistent negative outlook about one’s identity that breeds a sense of hopelessness and despair.

It is a natural response to the sort of complex posttraumatic stress that often occurs years after the the immediate danger is over. We do not think a perfectly human response should be stigmatized by calling it a disorder. But in psychological terms ASS id s version of Complex PTSD. Another name sometimes used to is Disorders of Extreme Stress Not Otherwise Specified (DESNOS). 

Here is the thing, surviving AIDS for decades is unique. The DSM-5 paints PTSD with a broad brush and ignores the nuances of something this unique. The bible of therapy is the recently revised DSM-5. It only hints at symptoms of complex PTSD, but in the end has left them out of the manual and lumps posttraumatic stress under PTSD. We deserve something that better describes what many of are living with.

More HERE