The latest HIV survey data has found Australia passed 10,000 AIDS diagnoses since the first signs in the early 1980s.
But for the just fewer than 4,000 still alive, the medical conditions that officially mark the advance from HIV to AIDS are less relevant than the need for holistic attention that includes mental health, ageing issues and community support.
There used to be a set of illnesses that classically defined AIDS, such as pneumonia and some cancers. They’re not useful indicators now because it’s not always clear whether they’re HIV related, NSW PLWHA CEO Rob Lake said.
Ordinary ageing or a combination of both could be the cause of some traditionally AIDS-defining illnesses among people with HIV, thanks to the success of antiretroviral therapy in boosting immune systems and extending lives.
Up to the 90s, staying alive was the critical issue, but it took a while to wonder what getting older might mean, Lake said.
Optimism and self-perceptions of good health are high among those living with HIV according to the current Positive Health survey results, particularly in Sydney.
Some who have benefited from the positive community and health services in Sydney are now moving to rural areas to enjoy a different kind of lifestyle.
There’s issues about being out and positive that are very different in Lismore than say in Sydney, Lake, who himself once moved to Lismore, warned.
There are problems around disclosure, which happens everywhere, but may have a bigger impact in a smaller town.
With most specialists centred in Darlinghurst, Lake said people wanting the same sorts of services would need to be prepared to travel.
People when they get diagnosed tend to come [to Sydney]. Doctors who want to specialise in HIV will come here. There’s a difficulty in moving away from that, Lake said.
But for the numbers of people living with long-term HIV who are below the poverty line, depression and isolation are major concerns, Lake said.
The challenge for us, while we want to be optimistic about people’s futures and options, we can’t forget that there are people who things aren’t working out for, he said.
We need to make sure the services are there for those people and work well, and not just focus on medical wellbeing, but emotional and sense of being part of the community.
The AGM of PLWHA NSW will be held on 7 December, and will include a proposal to change the name of the organisation to Positive Life.
Yesterday UNAIDS revised global estimates down to 33 million.

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