Out of patience! A reflection on the long fight against HIV/AIDS

Capitalist free trade does not work for people living with HIV. VAC taking the message to the streets at the Fight For Our Rights mass rally called by the ACTU in March 2015. Photo by Alison Thorne.
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April first was a great day for the prevention of HIV in Australia. Pre-exposure prophylaxis (PrEP) became available through the Pharmaceutical Benefits Scheme (PBS), slashing the cost of accessing this life-saving drug. This breakthrough came after a long wait and, like the listing of so many essential medications, was the result of passionate advocacy by those most affected.  

PrEP, which is sold in Australia under the brand name Truvada, is an anti-retroviral drug that, if taken daily, prevents those at high risk of contracting HIV from being infected. 

Developed by California-based giant, Gilead Science, PrEP was approved for use in the U.S. in 2012. But big pharma equals big bucks. Last year Gilead sold $25.7 billion in products, with $23.3 billion of this being for its lucrative anti-viral products. In Australia, the drug cost $850 a month, while cheaper generics produced under license in India and South Africa could be privately imported for about $130 a month. The PBS listing has reduced the cost to $39.50 a month and $6.50 for those with a concession card. 

Silence = Death. Speaking out has been essential to surviving AIDS since the early ’80s. And the gay liberation movement of the time was energetic, radical, internationally connected and making gains. When news began to trickle in from the U.S. of a disease that was impacting gay men, activists — including some women — paid attention. As a young Marxist feminist, I was acutely aware of the lessons of history and understood that the modest gains being made by lesbians and gay men, like all reforms, could be quickly eroded if we could not defend and extend them. 

On the 16 June 1983, I joined hundreds at a packed-out public meeting in the auditorium of the Royal Dental Hospital to hear what little was known at the time about AIDS. Representing the Freedom Socialist Party, I’d gone to the meeting with a mission. It was clear to us that the combination of homophobia and a little known, but deadly, disease was a threatening political risk as well as a serious health challenge. As such it required a political response. My pointed intervention called for the community to urgently organise. It struck a chord and has gone down in history as sparking the formation of the Victorian AIDS Council (VAC) which has played such a pivotal role mobilising the community, shaping public health policy, educating and fighting for resources over the last 35 years. 

It is hard to believe in 2018, how little was known about AIDS in 1983 and how crucial the pioneering efforts were. 

The knowledge and medications that exist today could make AIDS history. But corporate profiteering got in the way from the outset. In the 1980s the drug AZT (azidothymidine) brought desperately needed hope, but the patent-holder Burroughs Wellcombe was charging $10,000 per patient per year. In March 1988 I attended a rally and candlelight vigil to demand everyone who wanted access to AZT be guaranteed a consistent supply. Reading a statement on behalf of Radical Women, I declared, “We don’t want to hear any more whining from Wellcombe Australia about how they can’t make an adequate profit from the drug if they reduce the price. If Wellcombe won’t do it, then supplying AZT should be nationalised! We’re sure Wellcombe will be shouting long and loud about their patents if that should happen.”

Medications have improved, but some things haven’t changed: AIDS remains a political problem. Thanks to anti-viral drugs, there’s been a 48% decline in deaths since 2005. But there are still people being infected with HIV and living without treatment. 

Statistics from the Joint United Nations Program on HIV/AIDS (UNAIDS) speak volumes. Globally, AIDS remains the largest cause of death for women of reproductive age. Transgender women are 49 times more likely to be living with HIV than all adults of reproductive age. Last year, deaths from AIDS-related illnesses increased in North Africa and the Middle East. While the rate of new HIV infections is declining in most parts of the world, it continues to increase in Eastern Europe and Central Asia. 

There is a direct link between the spread of HIV and sexism, homophobia, transphobia, poverty, denial and stigma against people with HIV. These factors have turbocharged the epidemic in Russia and Eastern Europe, where there are widespread reactionary laws and where the growing fascist movement is contributing to a climate of reaction. The bigotry is forcing people underground and scaring them away from being tested and seeking treatment. Similarly, in the Middle East, a region with historically lower levels of HIV infection, rates are climbing due to moralistic attitudes and a lack of safe-sex education and safe-spaces for LGBTIQ people. 

Rampant sexism also shapes how HIV continues to impact around the globe. Gendered violence results in women having less control of who, when and how they have sex. Additionally, the lack of equal pay and the fact women are the poorest in society reduces women’s access to treatments.

Still fighting for our lives. In 1983 when a small band of lesbian and gay activists responded to the emerging AIDS crisis in Australia, we knew that we were fighting for our lives. We knew that we were fighting to prevent a backlash against the LGBTIQ community. We stood up against discrimination and insisted that the focus be on science. We fought against moralistic censorship, bureaucratic delays, and we demanded to be heard. We insisted on speaking openly and explicitly about safe sex. We fought the profiteers and asserted our right to access the best treatments available. As we mourned the dead, we fought like hell for the living. Those of us who formed campaign groups such as ACT-UP were in no mood for patience. If the current system could not deliver, we needed one that would! 

This fighting spirit is a legacy for new generations. We need to tackle the over-representation of HIV diagnosis amongst First Nations people, which is 2.2 times higher than Australian born non-Aboriginal people. It’s disgraceful that the Turnbull government has cut funding to key programs. For example, the Queensland AIDS Council receives no federal funding for its innovative 2 Spirits program. A massive injection of funding is needed for a sustained response to HIV amongst First Nations people.

It’s vital to defend and extend the PBS, which is so crucial in the fight against AIDS. The scheme is regularly threatened by the plethora of global trade agreements designed to shore up the patents and profits of pharmaceutical giants

In 2014, UNAIDS launched a global strategy. Its aim? By 2030, 95% of all HIV positive people will know their status, 95% will have access to treatments and 95% will have achieved viral suppression, meaning that while still present, the virus is no longer progressing. It may be measurable and tick all the other boxes for a strategic plan, but this is 12 years away and these are people’s lives – many millions of them! 

When I think about the orphaned teenage girl in Sub-Saharan Africa who stopped taking her anti-viral medication because she couldn’t afford the cost of transport to collect the medication, or the HIV positive trans woman in Jamaica who lived homeless for seven years with no access to treatment, or the gay man in Papua New Guinea too fearful to be tested because male same-sex activity remains illegal, I am plain out of patience!

Thirty-five years since AIDS emerged in Australia, Alison remains passionate that the solutions must be global, will have to be fought for and will only be delivered for all in a socialist feminist society. Contact her at alison.thorne@ozemail.com.au

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