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With more than 4.2 million people living with HIV worldwide aged over 50, Tez Anderson warns of a multi-pronged crisis affecting the health and wellbeing of older adults with HIV.

The first 20 years of the HIV/AIDS epidemic were traumatic. It is a testament to the human spirit, to individuals and communities who rolled up their sleeves and refused to accept HIV as a death sentence that we are here now. We are long-term survivors of the AIDS pandemic — the most devastating health crisis of the modern era. 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. We exhibited strengths we didn’t know we had.

For us, AIDS was more than simply a medical diagnosis or the end-stage of a deadly disease. AIDS shaped our psyches. It also galvanised our communities and gave us a sense of meaning and purpose. AIDS was a cultural, political and social force that changed the course of our lives and killed many of our loved ones. All of that is affecting our lives right now.

AIDS Survivor Syndrome (ASS) is a phenomenon unique to long-term survivors and their carers who survived the worst decades of HIV/AIDS. It describes the psychological state resulting from living through the AIDS pandemic — especially vulnerable are those who became HIV-positive pre-1996 when HIV was considered a terminal diagnosis.

ASS is not a linear phenomenon; it varies in degrees of intensity and affects long-term survivors differently at different times. Symptoms include depression, suicidality, self-destructive behaviour, social withdrawal, survivor’s guilt, loss of ability to enjoy life, a sense of hopelessness, and low self-esteem. In the era of “Ending AIDS”, many of us feel forgotten and invisible.

We need to draw attention to the numerous challenges facing our continuing survival, including high levels of multi-morbidity (the co-occurrence of two or more medical or psychiatric conditions), inadequate social supports, barriers to accessing community-based services, and truncated opportunities for employment and participation in society.

Attention needs to be drawn to some of the changes that need to be made in our communities and in our healthcare system to ensure older adults with HIV have the tools we need to live productive lives into our older years. We know that older adults with HIV face a higher number of comorbidities than adults at the same age without HIV, but we need to better understand the psychological and biomedical forces at play that are creating this outcome.

Additionally, large numbers of survivors face financial difficulty because they are likely to have been on disability for decades. Many survivors live on or below the poverty line. This has far-reaching effects that impact access to quality care and affordable housing, ability to engage in the community, and efforts to improve self-esteem and motivation.

Long-term survivors have a wealth of knowledge and a depth of experience that must be tapped in order to better understand the path forward to create communities where our needs — mental, physical and financial — are met. We urgently need access to care that is culturally sensitive to the experiences of long-term survivors of HIV, and to identify unique and innovative solutions to meet the needs of older adults with HIV.

Some advocates contend that we have reached a transition point; they reason that there is a need to focus on building a more hopeful future for adults with HIV, where they and their providers are able to collectively advance efforts to achieve optimal ageing.

While HIV therapy has created a turning point in the epidemic, some advocates say that healthcare providers, policymakers, caregivers, people working in HIV organisations, and others supporting people living with HIV need to recognise that achieving a longer lifespan is not the end of the battle. In fact, it may be only the beginning of a more protracted struggle to ensure that people living with HIV are able to live healthier lives into their older years. It is time to advance the conversation beyond survivorship and focus on a culture of ageing well with HIV.

The goal is moving beyond merely surviving to thriving.

Tez Anderson is a long-term survivor and founder of Let's Kick Ass 

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