Living with HIV: the conflict of interest between AIDS organisations and the pharmaceutical industry

On another World AIDS Day, I wish I could believe a cure was in sight but unfortunately I cannot. My experience living with HIV and working in the HIV/AIDS sector has shown me what we’re up against – a monolithic pharmaceutical industry that thrives on us swallowing pills for the rest of our lives.

To compound this, the ACTUP heroes of the 1980s have been replaced by the drug company stalwarts who set the agenda in today’s AIDS organisations. While there are many dedicated staff working in the community, AIDS organisations are now led by corporate types with lucrative careers, while people living with HIV are relegated to popping pills and living with high rates of social disadvantage, prejudice and discrimination.

AIDS organisations sprang up at the height of the AIDS crisis and many are still here today, mostly to promote drugs for the pharmaceutical industry. The ‘health promotion’ efforts of AIDS organisations are focused entirely on drug promotion. Any challenge to this agenda is fiercely discouraged. The voices of people living with HIV are not welcome unless we praise AIDS organisations and their pharmaceutical agenda, and no-one is employed in the HIV/AIDS sector unless they do the same.

Those with positions of authority in AIDS organisations have taken generous donations from the pharmaceutical industry, and stifled debate at every opportunity. They’re happy to swallow pills for the rest of their lives, and they’re happy for us to do it too – if it serves their careers. These people have used their positions in the HIV/AIDS sector for their own gain – while many of their constituents live in poverty.

The conversation around HIV needs to shift away from life-long medication to finding a cure, but this is prevented by AIDS organisations and their colleagues in the pharmaceutical industry. The notion that they can stop this epidemic by medicating millions of people with antiviral drugs is highly unlikely. This strategy is practically and financially difficult in many Western countries, and impossible in developing nations. The only legitimate way to solve this epidemic is with a vaccine or cure, as argued by Pulitzer Prize winning journalist, Laurie Garret in her article ‘Welcome to the Next Deadly AIDS Pandemic’:

The two greatest resource needs receive little rhetorical or financial attention: a vaccine and a cure … it is impossible to imagine global control of the virus continuing to rest primarily on lifelong, daily drug treatment for tens of millions of people.

After living with HIV for twenty years, I’m fed up with AIDS organisations and drug companies boasting about one pill after another that can suppress the virus but can’t eradicate it. Many people endure uncomfortable side-effects from these drugs. I’m fed up with relentless articles in the media about celebrities and charity events that are raising money to ‘help people living with HIV’.

There’s a very good reason why the AIDS epidemic drags on. It’s because there’s so much money, employment, power and prestige to be gained from it. There are too many bureaucrats in the AIDS establishment who enjoy the perks from government and the pharmaceutical industry. Milking this epidemic for all it’s worth has become more important than helping people living with HIV and finding a cure.

HIV/AIDS is not an epidemic that AIDS organisations and drug companies are racing to resolve. It’s an epidemic that AIDS organisations have built their business upon, and that drug companies are making billions from. Everyone involved is reaping rewards – at the expense of people living with HIV. Rather than begging for more drugs, we should unite against the AIDS establishment and the pharmaceutical industry to stop this epidemic. We don’t have to accept that HIV is here to stay, and that medicating ourselves is the only way to survive.

There’s still a culture of silence around HIV, but it is silence and apathy that allows the AIDS establishment and the pharmaceutical industry to thrive – because no one questions their agenda or motives. People have suffered for years over the fallout from HIV. Millions have died or been left mentally and physically disabled. We’ve all been terrorised by this deadly virus. We need to stand up to the AIDS establishment and the pharmaceutical industry and demand a cure.


Photo by Марьян Блан | @marjanblan on Unsplash

Overland is a not-for-profit magazine with a proud history of supporting writers, and publishing ideas and voices often excluded from other places.

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James May is widely published in the LGBTIQ media. His work has also appeared in The Guardian, The Sydney Morning Herald, The Big Issue and The Huffington Post Australia.

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  1. This piece is so on-target, it hurts. The “AIDS-helper” community will marginalize this POV by ignoring the focus. It’s a focus I wholeheartedly subscribe to. The AIDS-helpers are in the way. We need a CURE. Not more pills or antiretrovirals that keep us in our place.

  2. Thank you for writing and talking about an experience that is otherwise not written about a lot, especially in Australia. I will never understand what you’re going through, but this piece is beautifully articulated, and expresses your frustration perfectly. Thank you for educating me.

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