IN the 1980s and 1990s they were told they were going to die young, so they gave up their jobs and cashed in the pensions they wouldn’t need, buried their friends and tried to make the most of their last months on Earth.
Decades later, thousands of men and women with HIV in the UK, US and across the world are heading into an old age they never expected to see. In the US in 2001, 17 per cent of people with HIV were over 50. Now that figure stands at 39 per cent and by 2017 it will be half. In the UK, the Health Protection Agency says one in six people (16.8 per cent) being seen for HIV care in 2008 were over 50 — and that will double in the next five years.
Many of those who were saved by the discovery of antiretroviral drugs in the early 1990s felt it was a miracle to be alive. But life for the survivors of HIV, as they age, is bittersweet. Many are poor and have long since been edged out of the workforce. Half a lifetime spent on powerful drugs has taken its toll. Aside from the physical health issues as a result of the virus, there are high rates of mental health problems too.
John Rock, from Sydney, Australia, was diagnosed with HIV 30 years ago. “My partner started getting sick in 1983 and died early in 1996,” he said at an international Aids conference in Washington DC. “Many of my colleagues and friends were pushed out of the workforce around the mid-90s because they were not well enough to work. Subsequently triple combinations [of antiretroviral drugs] came along and they are still alive, but at the peak of their earning capacity they were out of the workforce for 10 years. Now they are destined for a retirement they thought they never would have, but it’s going to be in poverty.”
Lisa Power from the Terrence Higgins Trust in Britain, who spoke at the conference about the ageing HIV-positive community in the UK, acknowledged the unfortunate consequences of advice from support groups to those who were thought to be dying. “In the 1980s and ’90s we encouraged people to give up work and go on state benefits and not be economically productive,” she said. “Now we have condemned people to live on an old-age state pension.”
Money is not the only need. Many feel lonely and isolated. In a video made for a project called The Graying of HIV in the US, Bill Rydwels, 77, from Chicago, recalled a time of terror and sadness when Aids was scything down his friends. It was nonetheless a time of warmth and support that he no longer has. “It’s just so much better today and yet it is a lonelier time. Years ago it was a time that we all spent together. It was a terrible time and a wonderful time because you got to know everybody very, very well. They cried on your shoulder and laughed with you. You don’t get that any more.”
Half the world away, in Africa, which now bears the brunt of the epidemic, the numbers of older people with HIV are also rising fast. Epidemiologists at the University of Sydney estimate that there are more than 3 million people over 50 with HIV in sub-Saharan Africa, and that the figure is rising rapidly.
Ruth Waryero, from Kenya, now 65, had an HIV test when she was 48. She went home and told her husband. “He listened to me and then he got up and said, it’s up to you. Take care of yourself — I’m off.” — The Guardian, London