As a long-term survivor of HIV/AIDS, I’m frustrated with the current discourse around HIV in this country. There is a perception that we have this issue solved, and that living with HIV is ‘no big deal’, thanks to advances in medication. There is pressure from within the LGBTIQ community to uphold this image, even though living with HIV is more complex than popping a pill each day. Also, while HIV transmissions have reduced in Australia, there is a long way to go before we can declare the ‘end of HIV’, and this campaign must include the entire LGBTIQ community.
As someone living with HIV, I feel excluded from this campaign.
To illustrate this, ACON recently unveiled a major policy paper, Imagining HIV In 2030 1, at a panel discussion in August 2019. This begs the question—how are people living with HIV (PLHIV) supposed to imagine a future without the virus if our peers in the HIV sector can’t?
Let Down By AIDS Organisations
As a long-term survivor of HIV/AIDS, I feel let down by AIDS organisations that were established to represent us, but seem happy for us to swallow pills for the rest of our lives. Many people endure uncomfortable side-effects from these drugs. In Imagining HIV In 2030 2, the authors note that limitations of current treatments include ‘toxicities associated with lifelong care, the need for daily pill-taking and associated psychological burden and costs’.
The report also observes that, ‘PLHIV have an increased risk of serious non-communicable diseases, including cardiovascular, liver and kidney disease, malignancies and bone disorders.’
Clearly, the ‘Ending HIV’ mantra of AIDS organisations does not apply to those of us living with HIV who face a life of daily medication and the risk of co-morbidities from both this, and the virus itself.
While HIV transmissions have reduced in this country, The ACON Annual Report 2018/19 3 confirms there were 278 new HIV notifications in NSW alone in 2018. Of particular concern is that between January and June 2019, there were 75 new HIV notifications of overseas-born MSM (men who have sex with men), a 23% increase compared with the same period over the previous five years.
Imagining HIV in 2030 concedes that ‘the ‘virtual elimination’ of new HIV transmissions may not occur as early as we had hoped.’ While the number of transmissions is declining overall, this is not the case among the indigenous community or migrants to this country where infection rates continue to rise.
HIV/AIDS is Still a Very Real Threat
HIV/AIDS is still a very real threat, particularly to those living on the margins of our society. The HIV sector has not reached these communities with their health promotion efforts, and there is a long way to go before they can declare the ‘end of HIV’.
After living with HIV for twenty years, I’ve also watched the HIV sector roll out various health promotion initiatives, but none has perplexed me more than the ‘Ending HIV’ 4 campaign.
This campaign is misleading on a number of levels.
Not only does it make hollow claims about ending HIV (the campaign aims to reduce HIV transmissions in the state of NSW by 80% by 2020), it does nothing to ‘end HIV’ for those of us who have the virus. There are around thirty thousand people 5 living with HIV in this country. Once again we’ve been ignored by policy-makers in the HIV sector.
People Want To Be Cured, Not Just ‘Undetectable’
As someone living with HIV, I’m also not encouraged by the Undetectable=Untransmittable (U=U) campaign 6 endorsed by the HIV sector. This campaign still puts the onus on people living with HIV to swallow pills for the rest of our lives, rather than the onus being on medical researchers and drug companies to find a cure.
People living with HIV have already endured years of moral scrutiny and control of our bodies—not unlike that experienced by those who test positive, or risk testing positive in the COVID-19 pandemic.
According to Imagining HIV in 2030, the U=U campaign has also failed to reduce stigma against people living with HIV. ‘Discrimination on the basis of HIV status continues to occur within the gay community, including in the context of hook-ups where HIV negative men choose not to have sex with HIV positive partners, even if they are undetectable.’
In fact, it is now more common than ever for men on dating apps like Scruff to promote themselves by stating, ‘I am taking PrEP’ and ‘HIV Status Negative’ in their profiles.
So I don’t think ‘Everything Has Changed’ and ‘We Can End HIV’ with these drugs. People living with HIV are still reliant on pills and facing social disadvantage, prejudice and discrimination. Meanwhile, we’re assaulted with ‘Ending HIV’ slogans on social media and elsewhere, knowing we’ll be stuck with HIV for the rest of our lives.
Discrimination, Poverty Still High
According to Imagining HIV in 2030, HIV-related discrimination remained high in NSW in 2018. ‘An online survey conducted in 2016 as part of the Stigma Indicators Monitoring Project found that 74% of PLHIV reported stigma related to their HIV status. Over half reported negative experiences or different treatment by health workers.’
A number of indicators also point to socio-economic disadvantage among PLHIV. Imagining HIV In 2030 found that, of the PLHIV who completed the HIV Futures 8 Survey 7, half were ‘living on household incomes substantially lower than the average Australian income’. Further studies 8 reveal that 30.8% of Australian PLHIV reported their annual income to be less than $30,000 in 2019, which puts them at the edge of poverty.
Despite this, we’re meant to pretend that ‘living with HIV is easy’ and that taking medication for the rest of our lives is ‘no big deal.’ We’re meant to post a happy-go-lucky pic on Grindr with ‘+ Undetectable’ stamped on our foreheads.
As someone living with HIV, I find the label ‘undetectable’ insulting. I don’t want it stamped on my profile like some kind of badge, and I don’t want to explain it to people for the rest of my life. I want to get rid of this virus and the pills and stigma that go with it.
Excluding people who are living with HIV from the Ending HIV campaign is deeply hurtful. We will continue to bear the brunt of inequality, prejudice and discrimination while we remain HIV Positive. The fight to ‘end HIV’ should extend to everyone in the LGBTIQ community, including those of us who have the virus.
James May has written for Positive Living, HIV Australia and Living Positive Victoria. His writing on LGBTIQA+ themes has also appeared in The Guardian, Sydney Morning Herald, Overland and The Big Issue.