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The uncharted road
In the 1980s and early ‘90s, people living with HIV found themselves on a battlefront against a disease for which there was no treatment, let alone a cure. In many cases, it was a fight to the death. Today, the long-term survivors of the epidemic find themselves on a new and unexpected battlefront: ageing with HIV. Rebecca Benson reports.
Ageing with HIV — such an outcome would have once been unthinkable. Back in the day, people didn’t age with HIV, they’d die of AIDS. And yet, here the battle-scarred warriors are: the first generation to live into their golden years and the first generation to face the unique, accompanying challenges associated with ageing with HIV.
Studies suggest many of the conditions linked with ageing — cardiovascular disease, certain cancers, weakened bones, cognitive impairment, liver and kidney disease — appear to occur at higher rates among older people living with HIV than their negative peers. Why this is so, scientists are still busy determining. One study in particular — assessing the incidence of heart attack, kidney disease and non-AIDS cancers among people with HIV — found that, although the rate of these events occurred at similar ages than those without HIV, the likelihood of these three outcomes occurring was significantly higher among people with HIV than their negative counterparts.
Another detailed study — carried out in Denmark over two decades — found HIV-positive people more likely to have severe forms (and to be at much higher risk) of age-related diseases than HIV-negative people. The findings, say the authors, are relatable to other Western countries with maturing populations, such as Australia, where, in 2010, the proportion of people with HIV over 55 years was 25.7 percent. By 2020, it is expected to be 44.3 percent.
Other studies point to evidence that people with HIV are at an increased risk at an earlier age of adopting symptoms of frailty. Ross Duffin works with the HIV Outreach Team (HOT) run by the South Eastern Sydney Local Health District. HOT looks after people with HIV with serious health issues. “Most are living with greater comorbidity than their negative peers,” said Duffin. “As a general observation of people with HIV, those who were diagnosed prior to 1996, when the HAART drugs arrived, have the greatest level of illness and frailty.”
David, 64, knows this all too well. “Early ageing is real for someone like me. I feel I’m frail before my time and only recently accepted the need to use a walking stick,” he said. “I started to experience non AIDS-related conditions in my early fifties with the onset of type 2 diabetes — undoubtedly linked to the early HIV drugs. This led to renal problems and the need to see more and more specialists.”
As ageing takes its toll, Barry, 63, finds himself in a similar situation. “I have to factor in more doctors’ visits than other people my age,” he said. “I am constantly being monitored for toxicity and changes to my liver and kidneys. I have atrial fibrillation. The HIV is also responsible for my high blood pressure. I suffer from chronic peripheral neuropathy and lipodystrophy. Both conditions are very debilitating, causing extreme pain in the case of the former and depression with the latter as it affects self-esteem. Long-term survivors such as myself have certainly been wearied by HIV.”
To help people like David and Barry, Living Positive Victoria and the Victorian AIDS Council (VAC) are developing self-management courses for older people with HIV. “They aim to help people to learn the skills needed to manage an often complex condition like HIV,” said Kent Burgess, manager of HIV services at VAC. “This might involve learning how best to talk to your doctor, how to adhere to your treatments, or learning about good nutrition or advanced aged-care planning.” Other community organisations around the country have begun to develop initiatives to help people with HIV cope with the demands of ageing. Positive Life NSW, for example, has run workshops on how to deal with HIV-associated neurological disorder (HAND) and better understand the National Disability Insurance Scheme.
Mainstream healthcare providers will also need to respond to the ageing HIV population. With this in mind, Living Positive Victoria runs a Senior Voices project where positive speakers talk to aged-care workers about the needs of older people with HIV. Similarly, an educational guide has been developed by the Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine specifically for the aged-care sector. “It is important we know how values, attitudes and a lack of HIV/AIDS knowledge can lead to discrimination and poor health outcomes for people living with HIV and put measures in place to prevent this,” said Sandy Komen of the Bridgewater Aged-Care Group, which has trialled the resource in WA.
As for the people ageing with HIV themselves: “It’s about being prepared and developing resilience in your life,” said Burgess.
Resilience. It’s a word often bandied about when the topic of ageing with HIV is discussed. Resilience, in my mind, is not something that can be easily taught. Rather, resilience is something you acquire in the face of adversity; it is the ability to cope with unexpected changes and challenges in your life. Considering all that they have endured, the long-term survivors will be more than equipped for the uncharted road ahead...