Those of us living in capital cities take for granted the fact that we can access medical services easily, pop to the pharmacy for medications or go out with friends and chat about what irks us whenever we feel like it. As David Menadue discovered, for positive people living in more remote parts of Australia such things are not so easy.
Drew, northern WA
Nine years ago, Drew was offered a great job in a town in the Kimberleys in northwestern Australia. Drew and his partner had been living in Perth, but decided that the opportunity was too good to miss. And, while they might miss the big city, a more quiet and peaceful life had its attractions.
While working in his new job, Drew was admitted to hospital with an infection and discovered that the staff had tested him for HIV without his permission. "I was annoyed that this had happened, and wondered what the repercussions might be when I tested positive. But the staff were very professional about it and gave me no cause for concern. It was a blessing in disguise in a way because it was a recent infection and I was able to be referred for treatment straight away.”
The referral, though, involved a trip to specialists in Perth. Fortunately, the WA government has a patient assistance scheme for people living in remote locations. “It paid for my airfares to Perth, taxi fares to my doctor and a contribution towards two nights' accommodation. Confidentiality can be a huge issue in small communities so I was grateful for the anonymity of receiving treatment in Perth.”
Although Drew would have liked more local peer support, he understands that such services are largely concentrated in Perth. Also, as Drew acknowledges: “It would be difficult to run an HIV-positive peer support group up here for confidentiality reasons.” Instead, the Kimberleys region is limited to counselling services by phone, “Which is still an extremely valuable service,” says Drew. “An online de-identified peer support group could be a way of addressing the uniqueness of living remotely with HIV," he suggests.
Franz, northwestern Victoria
Franz lives 17 kilometres from a small town in the Wimmera region of northwestern Victoria. "I came here for the affordable housing, the peace and quiet and because I don't need to live with the trappings of the big cities. I like my own company although I appreciate my boyfriend coming to stay on the weekends.”
For treatment, Franz travels 12,500km to Melbourne and back. “I visit my GP at the Centre Clinic in St Kilda every three months at the moment. I could get six-monthly scripts for my HIV meds (which I collect from the Alfred Hospital) but I like to monitor my viral load regularly as my partner is HIV-negative and I don't want to put him at risk,” says Franz.
Franz has never needed to access a GP locally as he leads a very healthy lifestyle. “I don't get the flu much and, if I did, I wouldn't go to a doctor for it.” Neither has Franz experienced any stigma. “I have a very upfront, honest manner when I meet people. I find most people respect that and like the fact that [HIV] isn't an issue for me and that I'm optimistic about it. I'm more embarrassed to admit I'm an opera queen than that I'm HIV-positive!"
Franz has been ‘out’ about his HIV status from the beginning. “I had a T-shirt which I used to wear back in the nineties that pretty well broadcast it. It read 'Real Men chew their ddI' — and for the record, yes I did!”
William, northern Tasmania
William lives in Launceston in northern Tasmania and is able to walk to a good sexual health service at the nearby Launceston Hospital. "I can receive my HIV medications here and have confidence that the hospital staff will protect my confidentiality. We don't have any HIV specialists living here and rely on one to visit us from Hobart every three weeks or so. This does present problems if there are medical issues in between but my GP has arranged a shared care arrangement with my HIV specialist if there are any issues.”
Launceston is big enough for William to feel relatively secure that his HIV status wouldn't become something that is gossiped about. “I tell the people I can trust and others just don't need to know. But there are people with HIV living up here, particularly those in smaller farming communities, who feel they can't risk unwarranted disclosure. They will travel to Melbourne to see a doctor and get their HIV medications.”
When it comes to peer support William has developed some friendship networks with HIV-positive people in Hobart. "I guess I'm pretty comfortable about things here, but there are some people with HIV living up in this region who haven't disclosed to many beyond their doctor and who live in fear of exposure. I wouldn't like to live with that level of stress."
Cheyne, northwest NSW
Cheyne is a 64-year-old Aboriginal man who has lived with HIV for more than 30 years. Apart from a lymphoma he experienced a few years ago and developing type 2 diabetes, Cheyne has been well for most of that time. While initially working in health in Sydney, he later became a HIV/AIDS educator in northern NSW and an Aboriginal health outreach worker.
“I moved up to where I'm living now when I retired as I wanted to live near my family,” says Cheyne. “I live about 80km from Dubbo, which is where I see my doctors for HIV and diabetes management, so it is a bit of a journey when I need to see them. I don't drive so I rely on a friend or hitch-hiking to get to my appointments. Hitch-hiking is good exercise!”
There’s an Aboriginal Health Service near Cheyne’s specialists in Dubbo so he’s able to see all his doctors in one go. “I am on first names with all of them and have great confidence in their professionalism and understanding of my health needs. Initially the Aboriginal Health Service was taken aback when I rocked in and said, 'I'm HIV-positive' as they'd never had someone with HIV before, but they soon got up to speed.”
In terms of peer support, Cheyne says he’s never really needed it. “I know I could ring services like ACON but I feel comfortable enough about being HIV-positive. I live in a town of about 700 people and nearly everybody would know I'm gay and some people know I'm HIV-positive. I have family here and good friends. I've got pretty well all I need."
Thank you to Lisa Tomney, Margaret Crowley and Neil McKellar-Stewart for help with this article.