Within Australia’s jumbled medical industry – where some things cost heaps and others don’t – are HIV+ people struggling to secure treatment.
Jinyuan* was diagnosed with HIV during a quick return home to China after settling himself into Sydney, Australia. Just as the plane landed, an unexplained fever rattled his body. He assumed the worst and bought an HIV home testing kit. It returned positive. He went to the doctor to get tested and was called back because “something is wrong”. And after two more tests, Jinyuan was diagnosed as HIV positive.
He was referred to a hospital clinic who told him that, “you’ll live, but you’ll live much shorter than normal people”. He was offered three types of treatments, a dismal selection compared to the innumerous amounts offered in Australia – or as Jinyuan put it: “The doctor will literally pull out a billboard with hundreds of drugs”. And he was faced with the choice between jeopardising his career goals and staying home or heading back to Australia to chase his dreams. The reason he chose the latter was that he knew he had to move on with his life.
But it was also because of the resentment he felt in his home country. China’s tolerance towards the virus is just like that grim reaper advert, treating it as an unwanted secret. You become the unwanted friend or work colleague or relative. Your disease becomes your secret as people don’t want to know. Many around you wonder if it’s okay to even shake your hand. And in China, many still see it as a death sentence.
Jinyuan shares an anecdote on how China perceives HIV
Unlike China, new treatments have changed the rhetoric in the western world from “people dying of AIDS” to “people living with HIV” (PLHIV). It’s not a death sentence as it once was. They are reaching old age, pursuing their careers and finding meaningful relationships. Their treatment plans are reducing the risk of transmission. And in Australia, with our candid advertising of HIV treatment and information, there is a high level of tolerance.
But access to treatments for those travelling here on student and working visas is a struggle if you don’t know where to look.
While those with Medicare can access treatment for free at their local hospital or sexual health clinic – or for cheap via the Pharmaceutical Benefits Scheme (PBS) – those without Medicare have limited options: They could import the generic medication they need – which can cost several hundreds of dollars for a three month supply (they also need to be delivered, which takes time); they could participate in a clinical trial – which has a limited timespan; they could gain access via compassionate access schemes – which also involves a limited timespan; or, if they can afford it, they can fork out thousands of dollars a month to get treatment through an HIV specialist pharmacy.
Also, depending on where they’re residing, they may have better access than other states or territories. Western Australia has made it a state issue to offer free treatment to everyone. But for other states, it’s just the options above.
Jinyuan accesses treatment through a compassionate access scheme offered by the Royal Prince Alfred Hospital (RPAH), where he pays $180-$200 every three months. It was through the AIDS Council of NSW (ACON) where Jinyuan was given a contact number to a clinical nurse consultant for PLHIV named Garry Trotter, who helps Jinyuan get treatment. ACON has also been helpful in providing mental and psychological support to PLHIV, something Jinyuan knows is all too important to have.
Jinyuan expresses the importance of support by organisations like ACON.
Alexandra Stratigos, the principal solicitor at HIV/AIDS Legal Centre (HALC), believes national free access is necessary for public health and the economy.
“In terms of public health, there is always a benefit to ensuring that people living with HIV have access to treatment so as to reduce risks of transmission to sexual partners,” Alexandra said.
“Additionally providing treatment to people with HIV, regardless of Medicare status, also reduces risks of health complications to the individual. If a Medicare ineligible person is admitted to hospital in an emergency situation due to serious deterioration of their health then that would obviously cost the taxpayers more than the cost of providing that individual with antiretroviral drugs.”
But, while accessing treatment plans is a necessary pathway to a healthy individual and community, there’s another issue that many people like Jinyuan face.
“The recent and prospective changes to the migration legislation regarding skilled visas acutely affects people living with HIV,” Alexandra continued.
For PLHIV, the only skilled visa pathway available is through a 457 visa, which they must hold for at least two years with their employer/sponsor and hope they’ll sponsor them for permanency.
“Even this process is challenging for people living with HIV as it involves a complex health waiver process. A person living with HIV will fail the health criteria for all other skilled visa options,” Alexandra said.
According to Jinyuan, the only other option is through partner/spouse visa or marrying someone, “and not everyone is that lucky,” he said. “I’m definitely not that lucky to find the one.”
And although student visas are designed to be temporary, Alexandra notes that colleges, universities and even the Department of Immigration and Border Protection “recognise that people who have studied in Australia would be able to make valuable contributions and may work towards permanent residency.”
Jinyuan agrees and doesn’t understand why there are so many restrictions for people with HIV coming to Australia on visas. Especially when considering how much they contribute.
Jinyuan shares what many immigrants contribute to society, without benefit.
So even with the issue of gaining access to treatments and taking control of his life, Jinyuan is thwarted in making plans in Australia. Currently, he is an accountant seeking permanent residence, but he lives in fear of being forced to go back to his home country.
Jinyuan tells his worst fear.
Perhaps one of the biggest reasons Jinyuan refuses to give up and go home, aside from limited access to medical treatment in China, is that he doesn’t feel he belongs to that culture anymore. So his ultimate aim, as he attempts to gain permanent residence, is to just continue living his life and enjoying every bit of it in Australia.
“That’s why I think it’s important for me to give back to the community and to support people like Garry or organisations that want to help people with disadvantages,” Jinyuan said.
“I don’t really have a specific plan – I wish I have – but I just can’t. I put off a lot of my plans only because of the diagnosis, so that’s kind of dragged me back.
“I have a vision of what I should be doing now, or what I should be doing in the next two to three years. I have that vision. I just don’t know if it will happen. It all depends on this thing. If I get through this, then everything will go back on track. ”
*name changed for anonymity.