HIV/AIDS: why we still need to ACT UP

An AIDS Coalition to Unleash Power (ACT UP) protest on the steps of Flinders Street Station, Melbourne, 6 June, 1991. HIV activist James May believes that in 2022 "we still need to ACT UP". Photo: Art Blart via the Australian Queer Archives. Photographer unknown.

Opinion: finding a cure should be front and centre of our national response to HIV – but unfortunately it is not, writes James May, who has been living with the virus for over 20 years.

As someone living with HIV, I’m frustrated with the current discourse on HIV/AIDS in this country and abroad. Despite medical advances, around 40 million people are living with the virus globally, and around one million still die of AIDS each year.

In Australia, HIV transmissions have declined, yet they continue to rise among gay men and men who have sex with men (MSM) who were born overseas, and among our Indigenous communities.

People living with HIV still face discrimination, financial hardship and physical and mental health conditions associated with HIV, and HIV negative people still face the real threat of contracting the virus.

After forty years of the epidemic and around 36 million deaths, we need more action on a cure.

Finding a cure should be front and centre of our national response to HIV, but unfortunately it is not.

“The debate around HIV/AIDS needs to focus on a cure, but it is rarely mentioned by the HIV sector or the pharmaceutical industry.”

– James May

In Australia, AIDS organisations are too aligned with the pharmaceutical industry.

The LGBTQI community is particularly vulnerable to HIV/AIDS, and the pharmaceutical industry takes advantage of it. Their agenda is clearly profit-driven.

And while measures like PrEP have seen a decrease in HIV transmissions, it won’t stop the epidemic.

The debate around HIV/AIDS needs to focus on a cure, but it is rarely mentioned by the HIV sector or the pharmaceutical industry.

According to commentators in Nick Cook’s insightful 2020 book, Fighting For Our Lives: The History of a Community Response to AIDS, “there was always a deep argument over whether ACON had lost touch with the community it was designed to serve”.

“There was also concern that the influx of paid staff had diluted the original community spirit. Staff used to be motivated by an altruistic desire to ease the suffering of others.”

According to Cook, there was outrage over the new Vision Statement of ACON in 2000. One person living with HIV said: “The monolith that was created in the early ’80s is nothing more than a venue for political posturing and career building.”

This is true to some extent today.  

The ACT UP heroes of the 1980s have been replaced by bureaucrats who set the agenda in AIDS organisations. While there are many dedicated staff and volunteers from the LGBTIQ community, these organisations are now led by corporate figures with lucrative careers.

The radical ACT UP group was formed in the USA in 1987. James May contends that the community heroes involved in HIV activism have been supplanted by bureaucrats. Video: NBC News/YouTube.

“Working in the HIV sector provides wealth and privilege for many staff. It is highly corporatised, and often unresponsive and hard to access for people living with HIV.”

– James May

The HIV sector is a huge employer in this country and abroad. Money, jobs and profile-raising are a primary concern. These organisations routinely display a lack of empathy around issues facing people with HIV. According to recent studies poverty, mental health and other co-morbidities are a major problem.  

Working in the HIV sector provides wealth and privilege for many staff. It is highly corporatised, and often unresponsive and hard to access for people living with HIV. AIDS organisations receive millions of dollars in government funding each year, and a great deal funds their salaries and marketing initiatives.

AIDS organisations pour thousands of dollars into social media campaigns, while services for people living with HIV have dwindled. Our voices are not welcome unless we praise AIDS organisations and their agenda, and no one is employed in the HIV sector unless they do the same.

Nick Cook says in Fighting For Our Lives: “I’m relieved to know that HIV remains at the core of ACON’s mission. The very first question of any new program is, how can we use this to benefit our clients with HIV.”

I disagree with this comment. People living with HIV feel increasingly ignored by an HIV sector that excludes us from its policy agenda. The Ending HIV campaign is a good example.

While progress has been made to reduce HIV transmissions, the fight to ‘end HIV’ must include everyone in the LGBTQI community, particularly those of us with the virus. We continue to bear the brunt of prejudice and discrimination while we remain HIV positive.

“Why can’t any of this huge sum of money be used to find a cure?”

– James May

The Australian Federation of AIDS Organisations (AFAO) recently unveiled Agenda 2025. It calls for another $53 million in government funding to reduce HIV transmissions. Why can’t any of this huge sum of money be used to find a cure?

After living with HIV for over 20 years, I’m fed up with the claims of drug companies that the best they can offer is one pill or another that can suppress the virus, but won’t eradicate it. Many of us endure uncomfortable side-effects from these drugs.

HIV/AIDS affects both HIV positive and HIV negative people. Everyone in the LGBTQI community must come together to stop the epidemic. We don’t have to accept that HIV is here to stay.  

People have suffered for years over the fallout from HIV. Millions have died, or been left mentally and physically disabled. We’ve all been traumatised by this deadly virus.

We need to stand up to the pharmaceutical industry and demand a cure.

James May is a freelance writer. He has been living with HIV for over 20 years.

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