Unstuck

August came early this year. Most years, I have one bad depressive episode from December to about February, and another in August.

Last year I went on holiday in December, but I didn’t really escape it.  When I am depressed I am quite a different person — more stereotypically male, actually: my emotional range is limited to numbness/detachment and shades of anger from peeved to enraged.

I came back in January needing to pack up my stuff and find a place to live in Canberra, but instead, I froze.  Eventually I got moving again, booked a trip up to check out places with a friend of a friend, but it fell through.

Finally I did what I should have done to begin with — put a call out through my aunty network — and pretty quickly found somewhere lovely.

Then I needed to pack up my apartment, where I’d been living for eight years, one cat, two long relationships, one lovely flatmate and three terrible ones. I was still feeling pretty numb but now I really needed to get shit done, so I pushed through it.

Stephanie Convery had put me onto The Life-Changing Joy of Tidying Up.  Reader, I Marie Kondo’d my house move. There’s a great line of Brené Brown’s — “some people say ‘life’s messy — love it’, I say, ‘life’s messy, clean it up, organise it, and put it into a bento box.'”

I did that.  I wound up moving thirteen boxes, of which five were kitchen stuff, and I went from a whole apartment down to a room (and an office).  And I haven’t missed anything.

But I’d also decided I didn’t want to bring any of my emotional to-do list items with me.

Some items were pretty funny.  I shipped my ex minus one’s leather gear, which he’d been too embarrassed to bring home on the plane in case his luggage got x-rayed at customs.

I filleted an incredible personal archive of notes and working documents from five jobs.  I know people experience me as hypercritical but that’s nothing compared to how I view my own work, so that felt like a fifteen year retrospective of professional failure.  At one point I was thinking about doing my PhD on my own practice as represented in that archive — thankfully, my unconscious apparently recognised that as a stupid idea and I designed a project that looks forward and seeks to understand what’s happening now.  Much easier!

I took 14 years of tax returns into H&R Block.  My delay in sorting them out had made my last partner so uncomfortable he’d started talking about ending our relationship.  Having grown up with a parent who constantly narrated our income insecurity, dealing with money ratchets my anxiety levels up to eleven.  I don’t even claim expenses back.

I bought about five different kinds of hard disk interface to move all my files off about four different computers so I wasn’t lugging around old hardware.

People scoff at Kondo’s advice to keep nothing that doesn’t spark joy when you handle it. But the body knows.  You may not be able to reason or recall why, but your emotional brain remembers and you feel it as emotion, or prickling skin, or a cold pit in your stomach.

The danger is getting overwhelmed, though.  That’s certainly what happened to me.  I had about ten days to get myself packed up before the move.  I had to keep moving, keep packing, drop a Codral Original and a strong cup of coffee, 20 hours a day for 10 days.

In March and April there was a fair bit of numbness and in May it all came unstuck.  All that unprocessed excavation in my emotional archaeology had caught up with me.

There was some physical issue as well — I’d been to the doctor and I was very anaemic.  I thought this was the return of a blood disorder I’d lived with in my twenties and early thirties and I completely froze up.  (It has turned out to be a gallbladder issue.)

Getting unstuck again took about two months.  Apart from getting every pathology test under the sun, I got a mental health care plan from my GP to access counselling via the Better Access program.  That turned out to be a waste of time; the gap fee I was quoted for assessment, in line with the Australian Psychological Society’s recommended fee schedule, amounts to a quarter of my fortnightly income.

Things that helped:  my supervisor being supportive and super-chill about it;  lots of movies with Zoe and Owy;  finding a new meditation group at, ironically, the temple just across the road from my house;  learning how to get protein without eating meat;  applying for funding for field work got me excited again about the project I’d designed;  blogging here about fairly simple stuff helped to get the words flowing again.

I’m writing this because I talk all the time with friends living with the same and more serious issues and I want you/us to know: we’re not uncommon, unusual, or alone.

‘Pissed’ at Grindr

Mathew Rodriguez from Mic.com has written an excellent piece on the concerns I and others have raised about Grindr considering an ‘HIV filter’ on its app.

grindr people are pissed

I love Mic because they write about crunchy social justice issues with rigour and verve.  Also, because their house style permits a headline describing me as ‘pissed’. ^_^

What’s so great about this piece is that Mathew understands and demonstrates that stigma is not just about hurt feelings — it directly affects the success of prevention.

Racialising disease: new syphilis resource in Victoria

Photos have surfaced of a new syphilis resource in Victoria and it is ~problematique.~

Update: activist and TIM co-founder Nic Holas followed up with MSHC and they advised the resource was produced in 2013 and ‘pulled’ after complaints.  Copies of the resource pictured below were picked up this morning, so it seems they are still distributing it.

Syphilis resource from Victoria via Bryan Andy pers comm 12 July 2016

Hat tip and thanks to Bryan Andy for posting this and sharing his critique.

Let me describe the image: there is a phone displaying what looks like a dating app with tiled face pictures. Five of the tiles display smiling Anglo, Latino or Mediterranean faces. All of the remaining tiles are taken up by a photo of a Black or Asian man, tinted deep red, with the username ‘SYPHILIS’.

Beside the phone is a speech bubble saying ‘OMG he’s everywhere! SYPHILIS.’ Below it there’s some text providing facts about syphilis transmission and a fine print warning ‘Brochure contains explicit photographs of male genitalia’.

I have so many questions. Who produced this?  Was there a reference group? Which community organisations were consulted? Was it focus tested?

The explicit photos of STI infection make me think that it’s probably from the Melbourne Sexual Health Centre, because they love that shit.  If you’re doing their electronic admission questionnaire and you say you’re not sure if you have symptoms, they will show you page after page of diseased genitalia.  I took a friend there for his first ever HIV test and he nearly walked out of the clinic in horror.

The other give-away is the creative concept is so hackneyed: iPhones and app screens and ‘OMG’ are so last decade.  It reads like a Boomer attempting to be ‘hip ‘n’ happenin’.

I asked about a reference group and focus testing because these are both opportunities to challenge groupthink.  You might have a clinician who’s also a gay man, but a community educator has a much better understanding of how other gay men are different from him. 

Similarly, when we focus test, we’re inviting a discussion among a sample of participants as diverse as we’re able to recruit, in order to get a sense of the range of different possible interpretations of the stimulus material.

But this wouldn’t have made it to focus testing on any reference group I was part of.

It’s always good to invite a marketer or designer or photographer or illustrator or cultural studies researcher onto your reference group.  That’s because we understand that images have plural connotations.  They don’t always signify in the way we might intend them to.

We draw on a mental library of these connotations — a symbolic history of the culture that informs how audience members might interpret the images and therefore the message.

Accordingly, I ‘read’ the images above and their accidental references in these ways:

  • If audience members view the man pictured as Asian and we’ve overlaid his face with a red tint, the unconscious associations that might be triggered include the visual imagery used in propaganda stoking WWII fears of Asian invasion of Australia.
  • If the man pictured is viewed as black, then we’ve got an accidental reference to Tuskegee, where clinicians left African American men with syphilis untreated for decades in order to study the natural progression of the illness. We’re also then referring to racial stereotypes of black men as hypersexual spreaders of disease, as seen in the moral panic about bisexual black men ‘on the down low’ last decade.

As an American colleague recently explained to me, American social science maintains a distinction between two competing systems of differentiation: race and ethnicity.  I mention America because I’m pretty confident this image was constructed using stock photography or a photo-composite taken from America.

In the image, the uninfected people are shown as Anglo or light-skinned ‘ethnic’ while the guy who poses a threat to them — and by extension the audience member — is depicted as ‘racially other’.

Racist discourse often draws analogies between immigration and plague, subjugated and racialised others as pestilence, and this imagery unwittingly reproduces that analogy.

I understand stigma, with Parker & Aggleton (2003), as the production of difference in the service of power — in ways that normalise unjust social orderings.

The pictured resource exemplifies this.  It visualises an association between disease, contagion and non-white race. In other words, it marks out non-white people as differing from white people by having increased prevalence of disease.

It would have been trivially easy to use the highlight colour to symbolise the disease and overlay it on multiple, racially diverse faces.  In other words, either the problem was not spotted or a choice was made to ignore it.  (See update at the top of this post.)

The end of AIDS?

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.

lazarus

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.

Screenshot 2016-07-11 08.05.47

Source: Kirby Institute, Annual Surveillance Report 2015 p51 (pdf)

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.

Digital quarantine? Grindr considers HIV filter

A colleague from UMontréal, David Myles, posted these Grindr screencaps in a group for researchers interested in hook-up apps.  Turns out Grindr is surveying at least some of its members to find out how they feel about filtering other members by HIV status.

For a long time it has been possible on sites like BarebackRT and Manhunt to search by HIV status — for example, to facilitate serosorting as a way of partially reducing the risk of HIV transmission during unprotected sex, before PrEP came along.  Users could also save searches, so if they ticked every box except HIV-positive, they could construct their own de facto anti-HIV filters.

But it is a completely different ballgame for the makers of an app to build in a feature that effectively facilitates digital quarantine of people living with HIV.

It signals that HIV stigma is normal and rational.

Now, it could be said that people who use the filter are effectively isolating themselves from people living with HIV — reducing the likelihood of encounters where stigma is enacted in the form of verbal abuse and discrimination.  (Here’s one I prepared earlier.)

But Grindr filters, to the best of my knowledge, only stop matching profiles from appearing on the ‘grid’ — the display cabinet or catalogue of other users.

Would the HIV filter work differently, making that user invisible to others whose HIV status didn’t match their preferences — more like an automatic block function?

If it did, and enough HIV-negative people used it, it really would constitute a form of digital quarantine that leaves people with HIV outcast and invisible.

If it didn’t, it might set the scene for even more stigmatising encounters, fuelled by filter users’ surprise (and probably anger) that someone with HIV had contacted them.

Alternatively, they might assume that everyone who contacted them was HIV-negative, and the problematic implications of that assumption are well-known.

Grindr needs to cut this out.  Right now.  We are living in an era of effective prevention medication.  We should not be reinforcing categories that are used in less effective strategies for prevention.

‘Ending AIDS in a generation’

I’ve been openly critical of the rhetoric in global HIV/AIDS policy around ‘ending HIV’.  For instance, at the MSM Global Forum pre-conference in Melbourne before AIDS2014, when US global AIDS ambassador Debbie Birx exhorted queer and trans people to ‘run a little harder’ towards the goal of ending AIDS in a generation.  This would be a little easier if so many queer and trans people around the world weren’t also running for their lives.

For many AIDS activists, the timing of the Orlando massacre was particularly painful, coming hard on the heels of the UN High Level Meeting on AIDS, where ‘key populations’ of queer and trans people, people who inject drugs and sex workers were actively excluded from deliberations and barely mentioned in the final document.

Laurel Sprague noted one paragraph in particular as a masterpiece of international policy double-speak.  I’ve highlighted the competing voices in different colours:

Reaffirm the sovereign rights of Member States, as enshrined in the Charter of the United Nations, and the need for all countries to implement the commitments and pledges in the present Declaration consistent with national laws, national development priorities and international human rights;

So the ‘run a little bit harder’ rhetoric shifts responsibility away from states and onto communities, making it sound like they’re not working hard enough to end HIV.

There is another problem with the ‘ending HIV’ rhetoric, as seen in this quote from an interview with Bill Gates, one of the largest funders of global HIV prevention:

There’s a few things where you get a slogan like “AIDS-free generation.” … I wish that were more likely. Truthfully, because we don’t have a vaccine, and the prophylactic tools, the compliance of those things has been very poor. We actually run a risk that the next generation will have more AIDS than previous generations.

It’s a story with mostly positive elements, but if you say simplistically we are on the path toward an AIDS-free generation, no, we’re not. We need more R&D, more tools. And if you’re not careful, if you overpromise, you do get this fatigue, and then, even when you still need the resources, people don’t come in.

The experience of the global effort to eradicate polio tells us that even if a preventative vaccine for HIV were discovered tomorrow, it would still take a multi-generation effort to eradicate HIV.  Consistent with Bruce Link and Jo Phelan’s fundamental causes of disease (FCD) model, we’d expect to see rich countries achieve pretty high vaccine coverage early on, and poorer countries (and disadvantaged social groups) taking a lot longer.  The crux of the FCD model is lack of access to what Link and Phelan call flexible resources like money, knowledge, literacy, and social status.

But I want to acknowledge that – at least in Australia – the ‘ending HIV’ rhetoric was in large part an intervention by canny policy entrepreneurs who sensed the winds of change in the early days of the global financial crisis, and knew to anticipate the damage that could be caused by social conservatives having a ‘good crisis’, using austerity discourse to justify huge cuts to social services and welfare.  The extended election campaign we’re having in Australia has created space for unions and social policy researchers and social services peak bodies to tell the story of the billion dollars in cuts under Abbott.

Although the HIV sector is by no means unscathed, with genuinely community-based peaks like Anwernekenhe National HIV Alliance for Aboriginal and Torres Strait Islander peoples getting completely de-funded, and the Australian Federation of AIDS Organisations losing funding for its education program to two of its own member orgs (!), my sense is that things could have been so much worse.

This is a hard one to prove — the counterfactual is a hypothetical what could have been.  But having Australia’s largest state, New South Wales, commit to an Ending HIV strategy, campaign, and program of rapid testing services and early treatment, helped keep HIV prevention on the policy agenda.  So while the science of the ‘ending HIV’ claim is questionable, that was never really the point.

YEAH, nah.

There’s a campaign doing the rounds on twitter to #SaveYEAH, referring to an organisation in my field called Youth Empowerment Against HIV/AIDS.

This weekend, Jill Stark wrote about the campaign in The Sunday Age, and the paper also ran an editorial on it, both linking the ‘defunding’ of YEAH to attacks by the Christian right wing of the Liberal-National government on the Safe Schools Coalition Australia.

In fact, as a member of the Ministerial Advisory Committee on BBV and Sexually Transmitted Infections, YEAH CEO Alischa Ross most likely knew in advance that the entire funding stream was being replaced.  An ‘Invitation to Apply for Funding H1516G007’ for a new stream was released in November 2015, which included $1.3m for web, app and social media resources targeted people under 30 about sexual health.

Although it knew about the new funding arrangements from November 2015, the #SaveYEAH campaign did not begin until an initial tweet on 14 April 2016.  Rather than a ‘defunding’ it seems more likely that YEAH was unsuccessful in applying for funding under the new stream.

The article quotes Anne Mitchell and Michael Carr-Gregg (who is not, to my knowledge, an expert on sexual health promotion) claiming the funding decision is ideological:

They claim YEAH (Youth Empowerment Against HIV/AIDS) is the latest victim of an ideological agenda pushed by conservatives who believe teaching students about sex and sexuality from an early age is dangerous.

“There’s a lot of kowtowing to right-wing activists at the moment and you’d have to say that defunding of YEAH is part of that agenda too,” Anne Mitchell, emeritus professor at La Trobe University and one of Australia’s leading authorities on sexual health and education, said. (source)

This does not stand up to factual scrutiny.  The decision to replace YEAH’s face-to-face approach with one based on social media was clearly taken months before George Christensen MP began attacking the Safe Schools Coalition in February 2016.

The Age editorial went further:

The Coalition plans to slash the program’s $450,000 annual budget and instead make information available online.

How sadly ironic. The way modern digital technology has increased pressure on young people especially to engage in unwanted sexual behaviour is an important part of the reason the community needs to have more open discussion about sex and directly confront any misapprehension.

(…)

Given the recent furore over slashing the Safe Schools Coalition – an initiative to stamp out discrimination against LGBTI students – it is hard to escape the conclusion the government is deliberately pandering to the conservative wing of Liberal party in this raid on funds. (source)

Apart from the timing being wrong, spending $900K more funding on sexual health promotion via apps, the web and social media is not consistent with the picture being painted here of a government afraid of talking to young people about sex.

Typical of The Age, it can’t see the contradiction in arguing ‘modern digital technology has increased pressure on young people especially to engage in unwanted sexual behaviour’ while dismissing interventions that engage in the same spaces to address those problems.

For advice on the value of digital technologies in promoting young people’s health, The Age could have asked one Michael Carr-Gregg, who is Managing Director of the Young and Well CRC and developed its Certificate in Young People’s Mental Health and Digital Technology.

We should not fund YEAH

It’s a matter of numbers and reach.


How many young people aged 15-30 are there in Australia?
2,464,966 (ABS estimate 30 June 2013, table 7)

How many new young people enter that cohort every year?
144,617 (ABS estimate 30 June 2013, table 7)

Young people reached by YEAH in 2015
10,000 ‘face-to-face’ (Jill Stark, The Age 23 April 2016)


These figures from their 2015 Annual Report show the cost-effectiveness of this program:

Screenshot 2016-04-25 12.55.47Screenshot 2016-04-25 12.55.27Screenshot 2016-04-25 12.55.00

Unless the 62 workshops had 161 participants each, it seems like the 10,000 ‘face-to-face’ contacts — the number quoted in Jill Stark’s article — includes young people reached via Facebook, Instagram, e-newsletters etc.  If so, the majority of YEAH’s outreach to young people was via online social media.  If not, we paid $456K for YEAH to conduct 62 workshops, at a cost of $7,358 each.

Sidebar:  I am absolutely mystified by the claim in YEAH’s annual report that it spoke to ‘50,000’ and ‘82,000’ young people in 2014 to ascertain their views about its participation in the Triple J regional music festival, Groovin’ the Moo.

Screenshot 2016-04-25 16.52.39

Is this an argument for funding YEAH to reach more people?  No.  The problem isn’t a lack of resources, it’s that their service model is misguided to begin with. The problem is partly how the organisation was historically focussed and partly the failure of its CEO, Alischa Ross, to step down from hands-on management of the organisation when she was no longer a young person.

First, the history of YEAH. As HIV/AIDS infection rates increased in the early 2000s, a number of different ‘moral entrepreneurs’ saw their opportunity.  In November 2007 the ABC reported:

MARK COLVIN: In the last few years especially, it appears the issue of AIDS has gradually dropped down the agenda, both for politicians and the community.

Infection rates in Australia are rising and there are concerns that the young generation is ignorant or complacent about the dangers of HIV.

Youth affairs reporter, Michael Turtle.

MICHARL TURTLE: This year, it’s estimated about a thousand Australians will be diagnosed with HIV for the first time. That’s an increase of about 30 per cent from the year 2000, when 763 people were found to have been infected.

After almost two decades of containment, HIV has begun to get the better of the community again. (source)

Ross framed YEAH as a pre-emptive response to a forthcoming epidemic of HIV/AIDS among young people:

MICHARL TURTLE: Alischa Ross is the CEO of the group Youth Empowerment Against HIV/AIDS.

She also sees the prevention of the virus as a priority for all ages and all sexualities. And she’s warning that it may not be long before it becomes a big problem amongst the new generation.

ALISCHA ROSS: We know that Sexually Transmitted Infections amongst the young people are spreading like wildfire. This is the same behaviour that results in spread of HIV, so it is a matter of time until we see HIV spreading amongst young sexually-active teenagers.

MICHARL TURTLE: Ms Ross is calling for a renewed focus from governments on education and awareness. She thinks HIV needs to be talked about more in schools and in the community.

ALISCHA ROSS: If we’re talking about this as a preventable disease, which it is, and we’re meaning prevention in true sense of the word, which is to stop something from happening in the first place, then I don’t think our response to prevention, when it comes to young people, should mean that we wait to see a problem emerge. (source)

By that point — 26 years into the AIDS crisis — it was pretty clear that Australia was not going to see what’s known as a generalised epidemic where more than 1% of the heterosexual population are living with HIV.  Instead we have what’s known as concentrated epidemics — predominantly among gay men;  due to prompt and proactive work by sex workers and people who inject drugs, HIV prevalence in those two groups in Australia is incredibly low compared to other countries.

In that interview, Ross argues we should respond to something of which there was zero evidence — a mainstream HIV epidemic ‘in the new generation’.  The heterosexual focus here is subtle, but distinctive:  if you are targeting gay men, it’s pretty inefficient to go through ‘schools and the community’.

In this early phase of YEAH’s development one particular phrase got a workout:

Through the development of YEAH (Youth Empowerment Against HIV/AIDS) Alischa’s focus has been educating young people from across diverse communities, advocating the message, ‘HIV/AIDS is an issues that affects everyone‘. (source)

Alischa Ross had no educational training and this is apparent from the incredibly dense ‘student fact sheets‘ and teaching materials YEAH was promoting at the time.  I remember being concerned that the information provided was confused:

A retrovirus moves in the reverse direction to the natural cycle of the body’s own cells enabling this type of virus to bypass check points that would usually prevent the integration of foreign materials entering human cells.

The body relies upon these check points in the cell cycle to regulate disease control. HIV’s ability to bypass this allows it to integrate into the body’s own system and take over white cells by inserting its own genetic material into the body’s T cells and the new DNA re-programs the cell to destroy the immune system. (source)

In the late 2000s the Australian Government launched an ‘STIs are spreading fast’ campaign and YEAH obtained funding to promote STI awareness among young people.  This led to a shift in its messaging to emphasise a sense of crisis around STI.  In a presentation to the 2012 CSRH conference, Ross and Felix Scholtz argued:

In the past 3 years Australia has seen a 20% increase in the rate of STIs diagnosed amongst people aged 15–29 years. With more than three quarters of nationally reported STIs occurring amongst young people we must find new ways to effectively communicate and articulate in a meaningful way with young people, many of whom have limited or inaccurate knowledge of sexual health risks and how to prevent poor sexual health outcomes.

This project investigates the effectiveness of people aged 17–29 trained in HIV/STI peer-education, to deliver sexual health promotion activities at a national regional music festival to determine if there is an evidence base for scaling-up youth-led sexual health promotion.

Using peer education and social marketing activities, the project facilitated the promotion of positive sexual health messages to 85,000 young people in five regional centres. Using qualitative analysis of the perceptions and experiences of participants, it’s argued that methods involving young people are more likely to be effective in directly impacting young people’s behaviour.

The analysis contributes to understanding best practices to empower young people to take control of their sexual health. The findings support increased investment in policy and peer-based programs that put young people’s leadership at the centre of national responses to youth sexual health. (source

The abstract uses relative percentages (‘a 20% increase’) and proportions (‘three quarters’) to suggest a sense of crisis around STIs in young people.

However, diagnosing more STIs doesn’t automatically indicate an increase in transmission of STIs: it can mean more people getting tested, either seeking it out because of awareness or being proactively offered testing by doctors.  It can also mean the same base rate of infection multiplied by an increased rate of sexual encounters and partner change (or concurrency).  My point here is that it’s an incredibly crude figure and careful analysis and further research are required before drawing conclusions from it.

Secondly, there’s an implicit claim that STI diagnoses among young people are disproportionate. This in fact reflects patterns of sexual and romantic partnerships in Australian culture: many people see their twenties as a time for exploration and form longer-term partnerships in later life.

There are other problems here.  Like the way a funded project is presented as a research initiative (‘investigates the effectiveness of’).  Or the weasel words used around its absurd estimation of its claimed reach (‘facilitated the promotion of … messages to 85,000 young people’).  Or the mismatch of constructivist research methods and data type (‘qualitative analysis of the perceptions and experiences of participants’) to assess a probabilistic question (‘likely to be effective in directly impacting young people’s behaviour’).

But most of all it conflates policy participation with service delivery.  I agree with its call for ‘increased investment in policy and peer-based programs that put young people’s leadership at the centre of national responses to youth sexual health’.  And that’s why I don’t support the #SaveYEAH campaign — because YEAH, as an organisation, is not configured in a way that reflects best practice in youth leadership and engagement.

Achieving effective representation of young people doesn’t require a model where young people deliver all the services.  It requires an engagement structure and practices that reaches a diverse array of young people, listens to them on an ongoing basis (this rules out focus groups and online surveys), and then translates their feedback into influence on policy-making and service delivery by other agencies, so that young people have better experiences of more sensitive and relevant education, clinical service provision, etc.

Effective policy advocacy achieves a multiplier effect: by targeting policy and the establishment of best practices, it influences a wider array of services and actors who in turn influence the daily lives of a much, much wider audience than direct service provision can ever hope to reach.

Even if you ‘promote messages’ about sexual health to young people, if they can’t get condoms, or see a trans-friendly psychologist, or get sexual health care which includes a rectal swab, then the message isn’t helping anyone.

Of course, YEAH would argue that it does this advocacy work as well.  But when its CEO Alischa Ross turns up at a policy forum instead of an actual young person and gets called out for speaking for Youth Empowerment Against HIV/AIDS (Inc) instead of empowering actual young people to participate in making policy, that doesn’t work.

Ross was born in 1980 and in a 2009 book chapter she wrote:

Screenshot 2016-04-25 17.07.50.png

(source, p207)

There is a norm among youth-led organisations of CEOs ‘stepping up and stepping back’, or in the case of Oaktree Foundation, requiring their CEO to resign at age 26. Organisations that don’t take this approach need to be transparent about their adherence to best practices in youth participation, engagement and leadership. That is a governance issue, because it profoundly affects the organisation’s credibility in funding and advocacy.  YEAH needs to have a good hard think about those issues as it casts around for new funding.