My supervisor messaged me: “ABC news right now – the end of AIDS as a public health issue.” Fairfax was reporting it too:
AIDS epidemic ‘over’ in Australia, say peak bodies
Australia’s peak AIDS organisations and scientists have announced an end to the AIDS epidemic, as the country joins the few nations in the world to have beaten the syndrome.
The number of annual cases of AIDS diagnoses is now so small, top researchers and the Australian Federation of AIDS Organisations [AFAO] have declared the public health issue to be over. (Saimi Jeong, The Age 10 July 2016)
In blog posts and feature articles for some time now, I’ve been arguing that media framings, policy-making and popular understandings of HIV have lagged behind reality, holding onto notions of the ‘AIDS crisis’ and HIV as a deadly disease.
These ‘zombie notions’ impede sensible policy-making around prevention, such as the removal of outdated HIV-specific laws, and public funding for pre-exposure prophylaxis — medication that protects HIV-negative people from infection during condomless sex.
Gary Dowsett first conceptualised ‘post-AIDS’ thinking among gay men in 1996. In 2004, at a plenary session of the HHARD and HIV Educators’ conferences, I described myself as ‘pre-AIDS’ — born in 1981, coming out to myself in the mid-90s, the ‘AIDS crisis’ was over in the gay community before I ever joined it, and I’d had to reconstruct an understanding of what it had meant for the people around me. More recently, cultural studies scholar and critic Dion Kagan wrote his PhD on ‘post-crisis’ meaning-making around HIV, along with a stellar series of columns exploring this theme in The Lifted Brow.
I understand the messaging from AFAO and celebrity scientist Prof Sharon Lewin in this context. At first I wondered what it was about. I think there are three things going on:
- The number of people dying from AIDS, rather than dying with HIV, is now so low it violates statistical conventions against reporting cell sizes under 5.
- AFAO might have wanted to shift the media and policy narrative and ‘claim a win’ to count against what’s starting to look like the inevitable failure of ‘Ending HIV‘.
- Australia wanted an ‘announceable’ going into the AIDS2016 conference in Durban.
(Update: AFAO’s CEO Darryl O’Donnell did a great job challenging outdated narratives on ABC Radio National Breakfast this morning — you can listen to the interview here.)
A number of people have expressed concern to me that this announcement obscures the reality of ongoing, smaller AIDS crises in particular groups, including migrants and refugees, especially those who lack access to Medicare, and Aboriginal communities.
Since 1996 we no longer focus on deaths from AIDS nor even AIDS diagnoses — early diagnosis and treatment are the ballgame. People with late diagnosis, defined as a t-cell count below 350 per millilitre of blood, have elevated lifetime risk of serious illness, including cardiovascular events like heart attack, even after they start on treatment.
Update: The figure below shows the heterosexual communities in which late diagnosis is common. Spoiler alert — it’s all of them. And the personal impact of infection will be far greater for people are living in communities where outdated notions of HIV still predominate; where strategies to tackle stigma and discrimination are nascent or non-existent; and that in many cases haven’t yet developed cultures of care to support treatment and wellbeing.
In other health issues, such as cancer screening, the identification of lower rates of screening in specific communities compared to the Victorian population average has been used to target them for additional funding and recruitment initiatives. But the danger is always that small clusters get swept under the carpet, protected from identifiability by that convention against reporting cell sizes under 5.
My concern about this messaging is that it depends on policy-makers understanding that AIDS is not a journalistic synonym for HIV.
If they don’t, this message will look like a green light to ‘mainstream HIV’ — ditching peer based services and funding hospitals, nurses, social workers and MPH grads to ‘mop up’. That would be more expensive than community-based services, but it would restore what the health system views as the natural way of doing things — top down, expert-led.
Bernard Gardiner, a PhD scholar working on a qualitative longitudinal study of aging, place and social isolation among people living with HIV in Queensland, and a respected elder of the Victorian gay community response to AIDS, puts it this way:
I think this is careless. This takes the pressure off Public Health officers working for Government, who see psycho-social support services for long-term survivors as unnecessary ‘hand-holding’ that Gov should not fund. It also disguises the reality that some long-term survivors struggle for quality of life with depression, multiple co-morbidities, cognitive issues, cancers/heart/renal issues, and poverty, and feel somewhat abandoned by the biomedical 90/90/90 focus.
Once upon a time a shift like this would have been thoroughly debated among the AFAO membership and communicated to affected communities via community media. This would have provided an opportunity to prepare for the secondary messaging that will be necessary to make sure this message doesn’t backfire. We live in interesting times.