Nine reasons why I don’t give a damn

…about your ill-informed ‘personal opinion’ about PrEP.

Writer and lecturer Conner Habib, author of this great piece about sex-phobic reactions to his work in gay porn, today posted a link on his twitter feed to this sex-phobic piece about PrEP.

In August 2009, I went to the National LGBTI Health Summit in Chicago and took part in a panel on HIV stigma with Erik Libey and Tony Valenzuela, talking through some work I did on behalf of the Australian Federation of AIDS Organisations.

The summit included another great panel on bareback porn, recorded by Feast of Fun at the Center on Halsted. It was great to be there and talk with my North American colleagues about HIV risk reduction strategies, rectal microbicides, the Swiss Statement, and a new application of HIV treatments just entering clinical trials, called PrEP.

I had the great privilege of spending some time in conversation with Tony, subject of the Rolling Stone article “They Shoot Barebackers, Don’t They?”, and Amber Hollibaugh of Queers for Economic Justice.

We talked about the emotional sustainability of working in HIV prevention for AIDS service organisations (ASOs). The puritan, sex-phobic culture of North American public health practice makes too many things unspeakable and leads to a performance of evidence-based practice that chokes off funding to community-building strategies that actually work.

The result is pent-up frustration and, every few years, it is unleashed in a community-, sector-, and nation-wide cataclysm centring on some issue that, by a process of metonymy, is made to stand trial for everything that’s wrong with HIV prevention.

Tony had been the touchpoint for an earlier firestorm around the first public acknowledgment of bareback cultures in the mainstream media and his efforts to single-handedly establish the now-unremarkable category of the HIV-positive porn star.

There was concern at the time that a similar process might start up around non-condom strategies for HIV prevention. Sure enough, five years on, moral entrepreneurs like Michael Weinstein from the AIDS Healthcare Foundation are engaged in a concerted effort to spark off a national panic about PrEP, and there’s an emerging divide among gay men that threatens to crystallise into stigma.

This is staggeringly unhelpful, as the case of barebacking will demonstrate: even as behavioural surveys showed unprotected sex with casual partners increasing, gradually but steadily, in every developed country that collects the data, ASOs struggled to promote messages about how to reduce the risk during non-condom sex, because the moral panic about barebacking in the gay community and mainstream media made even the most cautious messages controversial.

Note that I’m not taking a position on casual non-condom sex: just saying that if it’s happening, ASOs should be able to respond honestly and effectively, and the strongest response is a strategic combination of messages. The drum beat is condom reinforcement (and promoting negotiated safety) for those who only do it occasionally with casual partners (or more regularly in relationships). The melody is a cultural narrative around the changing nature of HIV. The instrumental solo is reliable information about non-condom risk reduction strategies for people who, as a matter of disposition or personal difficulty with condoms, prefer exclusively non-condom sex.

In a short and altogether predictable exchange of views on twitter, I was challenged to engage more fully with the nine reasons given in the article Conner tweeted. So here goes: why I don’t give a damn if one person says he will never, ever use PrEP. (His reasons in bold.)

  1. Money. Just because your health insurance doesn’t cover it now, Zach, doesn’t meant it never will. If you have trouble using condoms, it’s a lot cheaper to pay for you to take PrEP than for full HIV treatment after you seroconvert. In particular, it will be a lot cheaper in 5 years when the patent monopoly on the key drug Tenofovir expires.
  2. Trust in pharmaceutical companies. Zach says he’s skeptical because Gilead makes HIV prevention and treatment drugs. There’s a missing premise here, explaining why that’s a problem. But in fact it’s the same drug used for both purposes.
  3. Zach likes condoms. Good for you, Zach. Not everyone does. The hidden premise here is that Zach thinks gay men are going to be choosing between condoms and PrEP, when in fact PrEP is likely to be used by men who either cannot or choose not to use condoms.
  4. Zach is forgetful. This is a pretty good reason for Zach not to use PrEP. In the iPrEx study, although 93% of respondents said they took the drug everyday on time, monitoring drug levels in their blood suggested only 51% actually did. [reference] There are now trials underway exploring alternative dosing strategies for PrEP agents, such as monthly injections and slow-release implantables.  There is actually a huge amount of knowledge about how to solve this problem, if we only looked at research into hormonal birth control practices among women.
  5. Side effects. Everything from joint pain to kidney problems have been reported. Also: Nausea, diarrhea, and skin discoloration.” Truvada has been studied for PrEP because it has the fewest side effects of any combination treatment. Its side effects include bone mineral density loss leading to increased risk of bone fractures, and kidney problems, both of which can be monitored.  The other side effects Zach mentions are from different drugs not used in PrEP.
  6. Truvada makes it harder to find somebody to fuck. A drug most people take in order to have safer bareback sex “limits me to only having sex with men willing to go bareback.” Well, in practice, yes — but there’s no reason someone taking PrEP could not also use a condom.
  7. The difference between condoms and bareback sex is negligible to Zach. Zach did something rather slimy in this piece: he frames it as “personal reasons why I will never, ever use PrEP”. That’s just a pretext to write a bunch of stuff about how PrEP sucks. Why bother doing that if you’re already determined never to use it? The use of the second person voice in the point gives the game away: this is really about what Zach thinks other gay men should do. He writes: “If wearing a thin layer of latex is that difficult for you, maybe your problem is psychological, not physical.” (Emphasis added.) The question I’d pose in return is: so what if it is psychological? Or cultural? Or emotional? Or even just that you prefer raw sex? 
  8. The science is still out. Zach imagines a scenario where, out of the 2499 gay men who took part in the iPrEx trial, only the half who were not receiving the placebo somehow figured that out and only had sex with negative men, and that’s why they had fewer HIV infections than those who received the placebo. This betrays ignorance about how clinical trials work but also gay men’s sexual cultures. Most of the men in the trial and control group would have sought out self-declared HIV negative men for bareback sex; it’s called serosorting and it’s not new. If serosorting worked as perfectly as Zach imagines, however, we wouldn’t need PrEP.  We need it because some proportion of the men who think they’re negative are not — they’ve been recently infected and their viral load is sky high.
  9. The risk of other STIsZach lists a bunch of STIs, including syphilis, herpes and HPV — which are, newsflash, not prevented by condoms, since they can be spread by skin contact with a lesion not covered by a condom. Many people wrongly assume that condoms prevent any STI transmission. In fact, they mainly prevent HIV transmission.  Bacterial STIs like chlamydia and gonorrhea can also be passed on via oral-anal contact during rimming and oral sex without a condom. That’s why we recommend testing for HIV and other STIs at least once a year and every 6 or even 3 months if you’re a really busy boy.

Ironically, one of the things Zach counts against ‘the science’ on PrEP (at point 8) is the prevention effect of HIV treatment among known-positive partners, which is another one of the risk reduction strategies we were talking about at that conference in Chicago.

Neither one is new, exactly. We’ve known since the late 90s that HIV treatment in positive people probably reduces transmission efficiency. Negative people have been prescribed a month-long course of HIV treatments as post-exposure prophylaxis (PEP) since the early 90s, and PrEP is just ongoing PEP. So why did it take so long to consider studying and formalising them as HIV prevention strategies?

Two main reasons. The ‘bareback wars’ made non-condom risk reduction strategies unspeakable. The bareback wars were due, in turn, to people, both gay men and public health practitioners, forgetting that the goal of HIV prevention is to prevent HIV infections using all the means available, not to promote a religion of consistent condom use and demonise those who don’t adhere to it.

Self-care strategies for social media users

A friend in her early twenties announces she’s joining twitter to debate feminist issues.

A leader in my field contacts me by e-mail to ask about my tactic of staged withdrawal from my twitter account, @onekind.

I tell my therapist about my battles on twitter and she laughs and calls it ‘Angry Birds’.*

We need to talk about the emotional sustainability of social media.

Continue reading

A big pharma gaffe

A recent article in Bloomberg Businessweek is sympathetic to the perspective of research pharmaceutical (RP) companies, who face the prospect of India deciding to compulsorily license their patents on three of their blockbuster drugs, for diabetes, HIV and arthritis. It fails to even mention that India is allowed to do so, under WTO rules established by the Doha Declaration, as a developing country in cases of public health emergency.

India is certainly taking an expansive view of what counts as a ‘public health emergency’, but one consistent with the values expressed in the Alma-Ata Declaration on Health for All (WHO, 1978) (PDF) and the growing recognition of non-communicable diseases (NCDs) such as breast cancer, diabetes and arthritis in developing countries as an emerging global health crisis.

In characteristically blunt language the Dutch-born CEO of Bayer AG denounced the Indian proposal:

Bayer Chief Executive Officer Marijn Dekkers called the compulsory license “essentially theft.”

“We did not develop this medicine for Indians,” Dekkers said Dec. 3. “We developed it for western patients who can afford it.”

This is an exceedingly callous remark from the leader of an organisation that claims to be “committed to operating sustainably and addressing our social and ethical responsibilities as a corporate citizen.” (source)

However, it can also be understood as a Kinsley gaffe revealing the essential correctness of the balance struck in the Doha Declaration. This refers to the situation when “a political gaffe reveals some truth that a politician didn’t intend to admit” (Wiki) — in other words, the accidental release of too much truth.

The truth accidentally revealed in Dekkers’ remarks is that Bayer AG has very little to lose by compulsory licensing in India, because it never anticipated much profit there in the first place.

What’s actually going on is less about protecting the revenue from blockbuster drugs in countries where most can’t afford them anyway, and more about protecting and extending the length of patent coverage in developed countries.

Christopher Scott Harrison, in The Politics of the International Pricing of Prescription Drugs, describes lobbying by the Pharmaceutical Research and Manufacturers Association (PhRMA) to use global trade law and negotiations to export, and therefore, crucially, re-import, regulations that are tougher than the US Congress would be willing to vote for domestically.

This strategy follows on from the extraordinary success of book, film and music publishing industries in copyright term extension, twenty years at a time, so that profitable properties like Disney films and To Kill a Mockingbird never revert to the public domain.

When patent laws were first enacted, their framers sought to strike a compromise between the interests of developing industrial societies — which at the time included the United Kingdom and United States — in widespread access to new technologies, and allowing sufficient monopoly period with windfall profits as an incentive to inventors.

This calculation should always be kept in mind; it clearly supports the case-by-case breaking of patents to provide enormous benefits to people in countries which offered little prospect of windfall profits in the first place.

What we’re seeing now is the use of international trade agreements to strengthen a regime that seeks to revise this balance in favour of research pharmaceutical companies. It is accomplished by means of the original WTO agreement on Trade Related Intellectual Property Rights (TRIPS), unilateral trade sanctions of questionable legality applied via the US Trade Representative’s watch list procedure, and more recently, a variety of bi- and multi-lateral trade agreements, potentially including the Trans-Pacific Partnership Agreement.

Although progressive activists have long viewed the WTO through a lens of ‘bigger is not better’, the shift towards a patchwork of bi- and multi-lateral investment agreements probably reflects a feeling in the US that WTO processes affords too much bargaining power to developing countries.

I have some sympathy myself for research pharmaceutical developers — they have to gamble big money on very uncertain outcomes, although perhaps not as much as some have claimed, and drug research and development is getting harder and more complex, because the easy discoveries may have all been made: the ‘low-hanging fruit’ has been picked. 

But some are in such tricky corporate terrain because they pursued a decades-long spree of ill-advised mergers and acquisitions, and seeking ever-longer patent terms looks, in this light, like a clear-cut case of rent-seeking.

Rape law doesn’t work—by design.

In something like my sixth year in law school I took a two-unit subject, Advanced Legal Research, to write about options for reforming the criminal law against rape.  I failed it, not once, but twice. I got so depressed I couldn’t write. Not only does the law against rape not work, from a history written by Barbara Hanawalt I discovered it was more or less designed not to work.

Rape was first made a crime in the first Statute of Westminster — kind of the first codified criminal law — out of concerns that too many women were making appeals against rape.  An ‘appeal to the reeve’ was a form of private prosecution, although there was nothing private about it — ‘reeve’ was a hundred or so local worthies, all men, to whom she had to proclaim (announce) her rape pretty much as soon as it happened, evidenced by ‘torn clothes and effusion of blood’, and then to bring it before the next county court.

The crime was enacted into the Statute of Westminster in order to reduce the ability of women to appeal it.  Although rape is often described as a property crime — since marriage was one of the ways to make a rape complaint go away, there was concern that rape could be falsely appealed to secure a marriage — in this light it makes sense to view the criminalisation of rape as a strategy for maintaining public order.  The crime gave a woman forty days to appeal her rape, otherwise only the Crown could prosecute it, and then the sentence was up to two years’ imprisonment.

Clearly there was some kind of outcry, for ten years later, in 1285, the Statute of Westminster II prescribed a sentence of punishment in life and member — execution and/or punitive amputation (possibly castration).  But in response, Hanawalt suggests, court procedure seems to have developed to make it more or less impossible for a woman to secure a conviction.  She had to tell and retell her story at each point from the reeve to final appeal in exactly the same words, else she would be deemed a liar and subject to punishment herself.

And yet somehow by the seventeenth century we have the Lord Chief Justice Sir Matthew Hale pronouncing “rape…is an accusation easily to be made and hard to be proved, and harder to be defended by the party accused, tho never so innocent”, and then that becoming part of the standard jury directions for rape trials in Australia.  This is a guy who believed in witchcraft but not the possibility of marital rape, and is yet esteemed one of the leading lights in the development of common law.

This is about as far as I’d got before I was unable to write for the rage I was feeling.  Didn’t even make it to the eighteenth century.  We have seven hundred years of a crime that was written expressly to restrict the ability of women to prosecute rape.  My home state, Victoria, is known as an innovator in rape law reform because it introduced jury directions that defined sexual consent as ‘free agreement’.  This was seen as some huge innovation, even though it left intact the elements of the crime, which said that what mattered was what the defendant believed about consent, not whether consent was actually present.

There has been some more recent fuckery in other jurisdictions about whether the belief was reasonable or not, i.e. did the defendant have evidence of consent or make enquiries.  But again, that simply invites the jury to substitute its own judgment for the defendant’s, when the judgment that matters is the victim’s.

One of the most depressing things was an article by two lifelong advocates for rape law reform who said frankly, if a friend or family member asked if it was worth making a rape complaint in their state (South Australia), they would have to say no.  Another author looked at the appalling conviction rate and concluded that certain juries seemed to be agreeing with the victim that she experienced rape, but feeling unable to find that, on the elements of the offence, the defendant was a rapist.

After I failed those two times I permanently gave up on wanting to become a practicing lawyer, and returned to working as a health educator in sexual and reproductive health, where there isn’t the need to bind up a sensible message in all the accumulated bullshit of seven hundred years of dysfunctional statute and common law.

But I remember wishing there was an intermediate offence of sexual assault, an alternative charge that could be pled along with rape, so that if a jury found itself in that situation — the impossibility-by-design of proving a rape charge — it would have some serious alternative to convict on.  That’s now one of the options under consideration in the recently announced rape law reform consultation being undertaken by the Department of Justice in Victoria.

Attack of the killer stats assignment

Tonight I finally submitted my first stats assignment — ten days overdue. The ‘easiest’ of three, they tell me. Univariate exploratory data analysis. Choose about ten variables from a cut-down data set drawn from the Health Survey for England. Calculate the mean and median. Make bar charts and histograms and box-and-whisker plots. Assess normality via skew and kurtosis. And here’s the hard part, for me anyway: develop hypotheses that can be tested using these methods. Wait, what?

For most of those ten days I was grinding my gears over the sheer pointlessness of the task.  I don’t care if the distribution of data is ‘normal’ (i.e. Gaussian).  If it isn’t, I’ll use a non-parametric test in my next assignment, or I’ll apply an arithmetic transformation, or I’ll consult the literature to identify sensible cut-points to turn interval data into categorical data, or, fuck it, I’ll quote central limit theorem and use a parametric test anyway.

I chose variables to do with social class, material deprivation (independent variables) and smoking uptake, heaviness, and cessation (dependent variables). In my lit review, study after study reported that there’s no difference in uptake by class or education. In many there was no difference in number of quit attempts either, but poor and working class people are much less likely to succeed in quitting.

From a stats point of view, what I’m supposed to care about (in this assignment) was that ‘age of smoking uptake’ had massive kurtosis, i.e. the curve was peaked like a Saturn 5 rocket.  I’m supposed to care about that because it affects what tests I can later apply and whether the results they give me, from the limited sample I had at hand, can be taken as a meaningful reflection on reality, i.e. smoking in the population at large.

As Howard Becker puts it, it’s a logic of synecdoche: can we reliably take this sample to stand in for and represent the population?

What I actually cared about was the fact the peak on the graph was around 13 years of age.  Forget the stats for a moment and apply some practical intelligence.  That, right there, tells you why higher education doesn’t affect rates of smoking uptake — because most people in my sample started smoking in early high school.

Here’s why I don’t care if my data is normal: no matter what test I eventually use, it’s still just a signal. I’m not taking it as gospel even if p<0.000 .. 001. It’s another bit of information I’ll add to the pile along with all the studies I read and my life experience and practical judgment as a practitioner. Bent Flyvbjerg calls this phronesis, i.e. (to simplify quite a bit) good judgment in practice.

This is also why the hypothesis testing pissed me off so badly. I’m supposed to propose hypotheses that can be tested by univariate analysis.  ‘That the median number of cigarettes smoked in a week will be equivalent to a pack a day’. That’s a univariate hypothesis. It doesn’t compare anything. It’s not ‘that the median cigarettes per week is higher among working class people’ — sorry Dan, that’s bivariate.

Who cares if the first hypothesis is rejected or not? It was totally fucking arbitrary to begin with. I picked an arbitrary value out of the air based on a cultural stereotype, ‘the pack-a-day-smoker.’ But to some people, devotees of null hypothesis significance testing, i.e. the dominant paradigm in quantitative social science, it really, really matters that I pick a hypotheses before I do any tests.

On this view, I’m to perform a pantomime of a scientific experiment, defining my hypothesis ahead of time and then using an appropriate statistical test to falsify it. Of course, falsifying my pack-a-day hypothesis wouldn’t give you any information about what the median was — it just tells you what it wasn’t. So we oh so cleverly phrase the hypothesis in the negative, then we reject it, and Karl Popper doesn’t spin in his grave. YAY!

In practice, nobody but nobody does this kind of testing on univariate data, but as students we’re being drilled in it as a matter of disciplinary socialisation. Because public health has to be Scientific, yo.

Honestly, fuck that. Public health should work. That’s what matters. Who cares if your brother-in-law who’s a research chemist thinks your degree is hard science or not?

If this didn’t scare you off, you might like this great post by Peter Freed: When Central Tendency Junkies Attack, which was inspired by the vitriolic response to this, now rather prescient-seeming post, Jonah Lehrer Is Not A Neuroscientist.  TL;DR: Freed argues that statistics should be understood as metaphysics, not a science.  This is the philosophy equivalent of a 19th Century gauntlet, thrown down with a cold sneer.

Wrap post for @WeMelbourne

I’m writing this with a powerful sense of tweetus interruptus, as I’ve hit the daily tweet limit for the @WeMelbourne account HALFWAY THROUGH A CHAT ABOUT HIV-POSITIVE AND NEGATIVE OBLIGATIONS AROUND STATUS DISCLOSURE.

Lot of people now tweeting at me ‘condoms aren’t 100% effective you know, it would be irresponsible not to disclose’ or variations on that, implying that a positive person who keeps their status private is being dishonest.  And I can’t reply and boy it’s killing me…

READ THIS, please:  HIV scandal on Jack’d: Boy, that escalated quickly!

This is why I don’t believe positive people have an obligation to disclose to random strangers if they’re only talking about having safe casual sex.  There is just no way to predict how someone is going to react, and some people react in vindictive, over-the-top ways that can result in a total loss of control about who knows your status.

Positive people themselves talk about feeling an obligation to tell their partner in an intimate, ongoing relationship, but there are different schools of thought on when to do it.  Some will do it on the first date, so that rejection hurts less if it happens, but that’s going to make first dates even more nerve-wracking than usual.  Others will wait until trust has developed and then disclose, but some negative partners react very badly to this, feeling they have been ‘deceived’.

Australia’s National HIV Strategy makes it clear that both HIV negative and positive people have a responsibility for prevention.  That means we can’t just talk about what the HIV positive person’s obligations are.  We need to do more for negative people to help them overcome fear of HIV and learn how to manage HIV disclosure when it happens.

Bio for @WeMelbourne

For the next seven days I’m guest hosting the @WeMelbourne Twitter profile curated by Sarah Stokely (@stokely). This week also marks the one-year anniversary of the first guest, so I’m feeling the pressure to live up to its full potential. I’m looking forward to showing my appreciation for Melbourne life as I live it.

Rather than clog up your timelines with tweets introducing myself, here are five quick facts about me. I’m borrowing these questions from The Guardian Australia’s weekly profiles of the guest hosts of my other favourite guest account, @IndigenousX, curated by Luke Pearson. This week’s guest is Summer May Finlay so please, hop on over and follow @IndigenousX quick smart.

Where are you from?

I was born at Emily Jessie Mac and grew up in Box Hill. I moved out of home when I was 18 — gay kid, Catholic single mum, you know how the story goes. I lived in the ‘South side’ gay enclave for eight years and the cafe lifestyle just felt soo cosmopolitan, but the drunks on the street every night, not so much. In 2008 I moved to Footscray and I’ve never looked back. Yes, there’s visible drug trade but the users are just another group weaving through the crowds and trying to get by.

On a longer timescale, Dad’s family came to Australia from the Netherlands after some years in Indonesia post-WWII. Mum’s family are Irish Catholic Australians going way back, but I was brought up thinking they were Danish — the nationality or family background of my grandfather’s adoptive father, who may or may not have also been his biological father. Complicated.

What do you do?

I’m a writer by disposition. I work in public and community health, planning ad campaigns and writing funding submissions. I also do community consultation and write policy and strategy documents.

I’ve worked on health issues like HIV, viral hepatitis, and cancer screening, and social issues like racism, social exclusion and stigma. I have worked with communities including gay men, people living with HIV and hep B/C, people who inject drugs, international students, refugees and asylum seekers.

I’m always pushing for projects that work with, rather than against the grain of the community in our priority groups — piggy-backing on the ways in which people swap stories and advice about health and social problems as a way of building community and a shared culture.

What do you plan to talk about on @WeMelbourne this week?

I’m hoping to be led by the @WeMelbourne community on what you’d like to hear about. But I’d love to talk about how the HIV epidemic has changed, how it does nobody any good to cling to old ideas about safe sex, and why it doesn’t help when opinion writers and politicians react with outrage to the idea of prevention strategies beyond condom use.

Why don’t we use condoms for oral sex? What are the alternatives to condoms? Are young gay men ‘reckless’ and older gay men ‘complacent’? Go on, ask me about it.

What issue in your community life do you think is most pressing?

I’m waiting for an Australian leader to stand up and say, 12,000 boat arrivals is nothing – so relax everybody, we got this.

I’ve done a lot of focus groups in my time and I know their limitations. People are not good at accounting for their feelings. The second you ask someone to explain why they feel X about Y, they start thinking too much and coming up with reasons that sound plausible. And what’s plausible is judged in terms of the social environment, so if it’s about politics, they’ll regurgitate what they heard from the public debate. ‘Queue jumpers!’ ‘Illegals!’

If you don’t know this, then focus group findings amplify talkback radio amplifies newspaper coverage amplifies electoral strategy amplifies focus group findings.

I’m willing to bet no political party has ever gone to a focus group in Western Sydney and said ‘would you feel better about boat arrivals if we spent enough on humanitarian settlement in your area so that refugees get a good start on life in Australia?’

People in Western Sydney know that social services are starving for funding; they know that inadequate support leads to school dropouts and crime; they’ve a hidden potential for generosity that any genuine leader would have the moral imagination to call on.

Who are your role models and why?

It will astonish her to read this, but I see my Mum as a powerful social activist. In my teens she edited the newsletter of Women and the Australian Church Victoria and railed against the he/him wording of the new liturgy in our Catholic parish, St Dominic’s, where, despite her activism, they still got her to do the readings every Easter and Christmas.

It takes a particular strength of personality to stand up to 2,000 years of misogynist dogma in your own community, and to speak out against it you have to first crash through all those inner walls of doubt and shame and politeness and self-restraint.

So you build up a head of rage and momentum and when you crash through it can look to the outside world like you’ve exploded out of nowhere… and that can make you look crazy and easy to dismiss.

In my adult life I’m still learning how to slow down and engage more gently and strategically. It’s tough going but I’m grateful for my role models on Twitter and in my community of practice, people who I trust and admire to give me guidance on keeping that trajectory controlled.

What are your hopes for the future?

I’m hoping to write up some of the lessons we’ve learned in the Australian response to the HIV epidemic and export them to the world.