HIV Long Term Survivors' Awareness Day - Callen-Lorde

HIV Long Term Survivors’ Awareness Day

With all of the recent advances in HIV treatment and prevention, it can be easy to forget those who have been living with HIV/AIDS before these advances – before the approval for PrEP (Pre-Exposure Prophylaxis) as prevention in 2012; before approval of the first ‘highly active antiretroviral therapy’ (HAART) that began the transformation of HIV into a chronic illness in 1996; before the approval of the first antiretroviral drug, AZT, in 1987 – before that, when HIV/AIDS was a death sentence. These people are considered Long Term Survivors, commonly known as LTS, and we honor this community on June 5th – the anniversary of the first report from the CDC on the illness that would come to be known as HIV/AIDS.

People who contracted HIV between these advances have very different lived experiences. Often dubbed “longest term survivors,” those who were HIV+ before the HAART era of treatment can suffer from forms of PTSD, not knowing whether they would live or die, and had often seen many friends wither away from the disease. Many survivors from this period also have long term side effects from early forms of therapy, which were much harsher on the liver, kidney and nervous system than current medications. Many also suffer not just from HIV, but from AIDS.

People living with HIV post HAART era, or after 1996, in many cases – though not all – had access to medications that were not only life-saving, but began the shift from HIV/AIDS as a fatal disease to a manageable chronic illness. And even more recently, going from a cocktail of drugs to only one or a few medicines a day.

Together, these LTS have witnessed monumental shifts in the way HIV/AIDS is treated, prevented and perceived, which is not to say that stigma and disparities do not exist.

Patient and Callen-Lorde Community Advisory Board member Bruce Pachter empathizes with people who have been recently diagnosed while acknowledging the perspective time has offered him. “I remember when I was first diagnosed. I made an appointment at Callen-Lorde and cancelled maybe 10 times because I knew. But I finally did it, and when the nurse called me in, I said you can’t tell me, but I know, and have to tell you. I’m HIV positive. At that point I was ready to accept my diagnosis. I had 86 T cells and a million and a half viral load. But I’ve come a long way since then.”

“Recently I was on a panel about being gay and aging, and I said, ‘Not only do I have to worry about geriatrics, but I also have to worry about how it affects my HIV status’ – and there were gasps. Someone went up to me after and said ‘You just outed yourself, how could you do that?’ And I said, ‘Everyone knows I’m gay, why do I care if they know I have HIV?’ So now, when people say to me ‘Why do you tell people?’ I say ‘Why not?’ People still have a stigma, but we have to break the stigma. If we just see each other as people instead of feelings attached to a label it’s a breakthrough. I’m proud of who I am.”

Callen-Lorde CAB Chair Stephen Pubiello agrees. “June 5th celebrates and honors long-term survivors of the HIV/AIDS epidemic and raises awareness of their unique needs and journeys. Each year since the inception, more and more LTS groups have started all over the country, each celebrating with a party, dinner, dance etc. There are also LTS groups on Facebook where groups range 200 – 4,500 members, offering day to day support on aging, questions on medications, and day to day life situations. It’s here in these groups where I’ve gotten my own support on mental health; it’s here that I know I’m not alone.”

Today, we honor all of the long term survivors and support them in their journey not just to survive, but to thrive.

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