Long-term HIV survivors – a call to not be forgotten

It wasn’t until well over a decade into the HIV epidemic, in 1996, that scientists made one of their biggest breakthroughs yet; they discovered that combining several antiretroviral medicine types dramatically improved the health of people living with HIV. ‘Highly Active Antiretroviral Therapy’ (HAART), as it was known, saw HIV-related deaths and hospitalisations fall by up to 80% almost overnight, in what was hailed as a new era of the HIV epidemic. 

But as new challenges emerged and the trajectory of the HIV epidemic shifted – those ‘survivors’ of the early years of the epidemic developed specific needs not adequately addressed in the post-HAART era. 

“Before we End AIDS, let’s take care of the needs and issues of long-term survivors, people who have lived with HIV for 25 and 35-plus years,” says Tez Anderson, founder of Let’s Kick ASS — AIDS Survivor Syndrome. 

“Our lives were dramatically changed by the epidemic, and it feels like the community has moved on. The meme ‘we lost an entire generation to AIDS’ is wrong. We lost much of a generation, but there are many of us still here, surviving against the odds.”

AIDS Survivor Syndrome (ASS) refers to a distinct set of medical and psychological needs faced by ‘HIV Long-Term Survivors’, as they have come to be known. In the first instance, they were exposed to some of the first drugs on the market, known for their crippling side-effects and toxic effects. But at the time, there was no other option. Exposure to these drugs have since made selecting new treatment regimens more of a challenge – due to the development of HIV drug resistance.
    
Though their lives were saved and many older people living with HIV are healthy and undetectable, some feel that they are being left behind in the HIV response. The focus on increasing testing and treatment uptake and getting more people to achieve viral suppression, means that HIV Long-Term survivors can feel marginalised by policymakers, politicians and HIV organisations.

This group also face very particular challenges around growing old, as many feel unprepared for and extremely fearful about ageing. Social isolation, hopelessness, chronic depression and struggling to imagine or prepare for the future are near the top of the list of problems affecting HIV Long-Term Survivors, while poverty in old age can have a severe impact on quality of life. 

In addition, many do not know whether they’re experiencing age-related or HIV-related problems, or for women, symptoms from the menopause for example. This can create a heady cocktail of issues to deal with on a day-to-day basis which can be overwhelming and lead to further isolation and depression.

Added into the mix are survivors’ guilt and in some cases the shame of feeling like they should be able to do more to prevent the younger generation from becoming HIV positive – when in reality legal, cultural and structural barriers are growing in prevalence in many places that have high rates of new infections.

Now in its fifth year, the HIV Long-Term Survivors Awareness Day raises awareness of AIDS Survivors Syndrome:

"When the medications came along, society shelved us all – they wanted us to shut up and go away. Let’s Kick ASS enabled my heart to open, I’d been shut down for so many years… to feel validated and supported means that I can now begin to imagine the future we never dreamed of," says an HIV Long-Term Survivor, Let’s Kick ASS – AIDS Survivor Syndrome.

It’s clear that more needs to be done to reach out to HIV Long-Term Survivors and develop services that take into account the specific needs of people growing older with HIV.