A group resembling the Dallas Buyers Club is helping people source a "miracle" drug that prevents HIV while Australian authorities contemplate whether it should be approved and subsidised by taxpayers to make it more affordable.
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Truvada, a drug likened to the contraceptive pill for women, offers close to 100 per cent protection against HIV if taken properly. It has been hailed by researchers as a key weapon in the fight against the infectious disease affecting about 27,000 Australians.
While the drug is available in the US and France, and is already approved to treat HIV in Australia, the Therapeutic Goods Administration is still considering whether it should be approved for preventative use in high-risk people.
A decision is expected in 2017. If approved, a separate committee will then be asked to determine whether it should be put on the Pharmaceutical Benefits Scheme to make it more affordable for people such as gay men who do not want to rely on condoms alone to protect themselves.
Until then, people at risk of HIV, including those with HIV-positive sexual partners, can talk to their doctors and get a prescription for the drug – also known as pre-exposure prophylaxis (PReP) for prevention. But it costs about $1200 a month through Australian pharmacies.
To get around this, a group of men have started a website called "PreP access now" to help people order cheaper generic versions of the drug from multiple online sources, including Africa for about $60 a month.
One of its founders, Steve Spencer, said dozens had ordered the drug with the group's help since it began in the middle of the year. It is now offering free orders for people who cannot afford the $60 monthly fee because the African pharmacy offers one free order for every two made.
"A bunch of us gay men who saw nothing happening said 'stuff it' we're going to come together and make a change," he said. "Our numbers are increasing every day, but it's the government's responsibility to ensure the health of Australians, and... to ensure equal and easy access to PrEP if we want to end new HIV infections in Australia."
Mr Spencer, a student who uses the drug himself, said many people felt it was a "miracle" that not enough people at risk of HIV were aware of. He said people with a prescription can go through the order process online and have the drug imported within weeks. He said there was nothing illegal about going through the process with your doctor and ordering the drug from an overseas pharmacy.
Researchers in NSW, Victoria and Queensland have been testing the drug on almost 500 people at risk of HIV infection since last year. The Australian Federation of AIDS Organisations says none of the participants have contracted the virus.
On Monday, the NSW government announced it was expanding a clinical trial at the Kirby Institute of UNSW from 300 people to 3700. There are hopes a similar trial in Victoria will also be expanded to provide greater access to the drug while the TGA considers approving it.
Edwina Wright, a doctor running a trial at the Burnet Institute and Alfred Hospital, said there were fives spaces left in her study for 115 people. She is hoping couples wanting to get pregnant in relationships involving an HIV-positive partner will consider it.
The Associate Professor of medicine at Monash University said she could understand why people like Mr Spencer were seeking the drug through online pharmacies because there was a "void in access" in Australia. She said the drug offered a "brilliant" strategy to reduce HIV infections.
"The efficacy is very high in people who take it daily and the transmission risk is close to zero," she said.
However, Associate Professor Wright said the drugs were linked to a small decline in kidney function and bone mineral density, and that long-term studies were required to map their side effects over time.
- With Jane Lee
