Life with HIV: Long-term survivors share their experiences

Over three decades ago, receiving an HIV diagnosis was akin to being handed a death sentence. Many endured discrimination, devastating personal losses, and gruelling drug side effects. However, advances in treatment have enabled millions of individuals to live with this virus. To mark the 40th anniversary of the discovery of the virus responsible for AIDS, four long-term survivors shared their experiences with the disease.

Paul Kidd, a 59-year-old activist and lawyer living north of Melbourne, Australia, was diagnosed with HIV in 1991 but had likely been infected for several years. His doctor had argued against testing in 1986 due to the lack of available treatments and rampant stigmatization of HIV patients at the time, including calls for their quarantine and criminalization. Kidd’s own diagnosis was not surprising, as he had previously lost an ex-partner to AIDS. Kidd credits the antiretroviral drug AZT – which initially made him very ill – with ultimately saving his life. While he now only needs one daily pill with no adverse effects, Kidd acknowledges that the stigma around HIV remains unchanged, especially in certain regions.

Pascale Lassus, a 62-year-old retiree in Bayonne, France, was unknowingly infected by her then-boyfriend in 1984, only discovering the diagnosis a decade later. Her six-year-old daughter also tested positive. Initially, the only available treatment was AZT, which had severe side effects, but a shift to a new three-drug regimen in 1995 significantly improved their health. Lassus’ daughter, now aged 35, was later able to conceive and give birth to an HIV-negative child.

Grissel Granados, a 36-year-old deputy director of a women-focused non-profit organisation, has had HIV her entire life. Her mother contracted the virus in 1986 during a blood transfusion for Granados’ emergency birth in Mexico and passed it on through breastfeeding. Granados expressed concern that individuals who are born with HIV often seem to be overlooked or neglected. Despite a cancer diagnosis at age 10, Granados has led a relatively healthy life.

In 1992, Joel Vermont, a 58-year-old from Paris, learned he had HIV, describing the experience as feeling like being crushed by a falling building. Initially prescribed AZT, the side effects caused Vermont to lose close to 30kg (65 pounds). The three-drug regimen introduced in 1995 had no effect on Vermont, leading him to turn to alcohol. As a result, his viral load skyrocketed, and he developed lung disease and early-onset cancer, ending up in a coma for 45 days. After facing workplace discrimination, Vermont spent eight years on sick leave before winning a court case. The sudden change from being told he would die to having to live required intensive psychological support for Vermont to accept.