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A positive test

When someone tells you you’re going to die, it’s normal to have a few questions. Depending on the context, these might include “how?” and “why?”, but most importantly, “when?”

On the day that I got my HIV diagnosis, Chris, my doctor never said I was going to die — but that’s what I heard. He said “This was a positive test.” It’s an odd choice of words, a bit clumsy and scientific, but of course medically precise. The diagnosis had to be confirmed with a second test, and backed up by a T-cell count. There was the possibility that the second test would show the first to be false, but he and I both knew that wasn’t really going to happen. “Don’t get your hopes up,” he said.

The test was positive, and so was I.

In my head, “This was a positive test” became “You’re going to die.” I wanted to know what all people given this news want to know: when?

“How long have I got?” The words came out of my mouth like a line from a bad TV movie. Chris looked at me with sad eyes.

“We don’t know. Some people do better than others, but without treatment I think you would have between one and three years before you were very seriously ill. There is a treatment available — it’s called AZT — and with that you would probably double that, but better treatments are being worked on and new ones could come along in the future.

“You shouldn’t worry: you can expect to have another five to ten years with a bit of luck. And in that time, who knows — treatments might improve. Who knows? You could live for another 20 years.”

I knew he was trying to be upbeat, stretching the story as far as possible to make me feel better. But no-one lived that long with HIV, not in those days. I walked out of the surgery with a prescription for AZT and started taking it the same day.

That was twenty years ago, today. The 6th of August, 1991, when I was 27 years old and going to die.

I posted another story about the day of my diagnosis a few years ago: Hiroshima Day.

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How to trick people into getting an HIV test

Watch this extraordinary “training video” which explains how hospital workers in Texas “encourage” patients to undergo routine HIV testing. I particularly like the part where they stress that written consent isn’t required, and there’s no need for pre-test counselling.

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Silence of the Mice

Yesterday I was on TV. Researchers at the Walter and Eliza Hall institute in Melbourne made a significant breakthrough on HIV, and the media needed someone to be the voice of positive people. In my PLWHA Victoria role, this duty falls to me.

It’s not often that the Australian news media take this much interest in HIV issues at all, and when they do it’s typically bad news, so it was refreshing to see this much interest in a ‘good news’ story. The fact that the news release had the words ‘HIV’ and ‘cure’ in it probably helped (the last time the commercial TV news became interested in HIV science, that news release had the ‘C’ word in it too, so I’m seeing a pattern; from now on all my news releases will have ‘HIV cure’ in the headline).

So I scrubbed up, borrowed a clean shirt (thanks Nathan), and choofed off to WEHI to do my bit for the cause. Here’s the resulting ABC TV News item. Read on over the page for the horrifying truth.

(The Channel 10 version is also available, on YouTube, if you’re really keen.)

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HIV infections aren’t going up, they’re going down

The annual HIV surveillance figures are out today and, as usual, there is lots of reporting of apparently bad figures. “Australians newly diagnosed with HIV totalled 1050 during 2009, the highest number in almost two decades,” according to this AAP story.

Indeed, there was a rise in HIV diagnoses last year, and we’ve crossed the seemingly symbolic 1000-cases barrier, and that is of course significant cause for concern. But HIV diagnoses have been up around the 1000 mark for several years now, and deaths from AIDS are at an all-time low – just nine people were reported to have died from AIDS-related causes in 2009, a piece of good news that the media has pretty much ignored. Because of this, the number of people living with HIV in Australia has risen every year, and so the number of new HIV diagnoses should be read in that context.

The chart below shows what happens when you do. The blue and green lines show the number of HIV diagnoses per year since 2000, and the consequent raw incidence rate per 100,000 population. The pink line shows the raw incidence rate per 100 people living with HIV, and shows a clear downward trend since 2005, as HIV infections have not risen in proportion to the number of positive people living in Australia. (Click the image to see a larger version).

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To my mind, this is a significant piece of good news that the media has ignored. But that’s not surprising as NCHECR’s annual surveillance report doesn’t include this measure, making a ‘bad news’ interpretation of the data almost inevitable.

That falling pink line suggests that positive people are succeeding in preventing onward HIV transmission. With a larger HIV-positive population, you’d naturally expect more HIV transmission to occur, yet this isn’t happening.

If this falling incidence rate were acknowledged, we could begin to ask why it is so. What has changed since 2005 to reduce HIV incidence, and how can we extend that success? Reported rates of unprotected sex among gay men have risen during that period, so how do we explain this apparently contradictory effect? These are important, and potentially valuable, questions.

HIV incidence is falling, not rising, when you take into account the growing positive population. This is something we should be celebrating, and for which positive people should be congratulated, instead of focusing on raw numbers that give a skewed perception of the epidemiology of HIV in Australia.

There are several caveats to the data I used for the chart. Most of the data came from the published NCHECR surveillance reports, which can be found here and from ABS population data. The 2010 report isn’t up yet, so I have taken the figures for 2009 from today’s media reports. And as I say, I’m no statistician, so I will accept criticism of my methods with my usual sanguine humour.

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HIV/AIDS: A new first impression

Myles Helfand, editor of TheBody.com, writing in the Huffington Post on HIV stigma:

Never mind that more than half of all people in the U.S. who get HIV/AIDS are heterosexual, and that most people who get it are not injection-drug users. Or that it whittles away the immune system in the same manner regardless of a person’s sex, gender, race, age, education level, wealth, geographic location or the manner in which they’re infected.

It’s the first impression that matters. And that first impression was that HIV/AIDS was something sinners got for doing things they shouldn’t: Having sex with men. Using drugs. Acts of which God does not approve, as has been made clear by luminaries such as Pope Benedict XVI and Delaware’s masturbation-averse Republican Senate nominee Christine O’Donnell.

Read the full article.

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Time to go home

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The International AIDS Conference is drawing to a close and with it, so is my long overseas journey. Tomorrow I’m off to London, then Singapore, then Melbourne and home. I’m ready.

The conference has been amazing – there is much good work being done out there and I’ve found plenty to be inspired by, challenged by, and occasionally angered by. I’ve met some fantastic people, including this guy, this guy, this guy and lots of others who aren’t so easily linked to. Plus I’ve renewed a lot of friendships built up over previous conferences and events.

The two “big deals” out of this meeting for me are the microbicides breakthrough (of course) and the focus on criminalisation of HIV transmission/exposure, and the complex legal, ethical and public health challenges associated with that. I’ll be writing about those two for an upcoming issue of Positive Living.

As the meeting winds up, it would be easy to be dismissive of the prospects for anything to really change in the course of the HIV epidemic – to judge the event as long on talk and short on action – but I’ll suppress my usual cynicism and say that I do think these events make a difference, if only to remind those of us working in the field of how much remains to be done and how comprehensively the leaders of the world have failed to take decisive and meaningful action to save people’s lives.

We are making progress. We have new prevention technologies coming on line – the successful CAPRISA microbicide trial will be a milestone in the history of the HIV epidemic, and there is every reason to expect that research into pre-exposure prophylaxis (PrEP) and treatment-as-prevention will give us new prevention tools and the hope of a prevention paradigm that goes beyond the “just use condoms” message that I have argued is unsustainable in the long term.

Unfortunately, not a lot of this is getting through to the people who have the power to make decisions, and so often we see public policy driven by prejudice, fear and moralisation rather than evidence of what works. As Gill Greer, Director-General of IPPF, said in a session the other day, “when morality gets in the way of policy, the result is too often morbidity and mortality.”

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March for Human Rights at AIDS 2010

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One of the perennial set-piece events for the International AIDS Conference is the big, colourful march through the centre of the host city demanding universal access/equal rights/new drugs/whatever the focus is on this time round. Last night’s event, marching through Vienna to Heroes’ Square, was no disappointment.

Many thousands of activists, advocates and people living with HIV made a loud, brash and joyous sight as they moved through the city. For me it’s the one moment of jubilation in a long week of scientific data and depressing news about the march of HIV in the developing world. This year we had extra cause to celebrate – the fantastic news this week about the success of a vaginal microbicide trial – and we made the most of that while working to highlight human rights issues. Will (above) decided he’d stand up for the human rights of African men’s foreskins.

Lots more photos on Flickr.

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How to get your press release noticed

If you sit in the media centre at the International AIDS Conference, you are subjected to an unrelenting stream of people coming by and placing a press release or media advisory in front of you, while timidly whispering, “Press conference at 1pm on bal bla bla.” It happens on average avery 5–10 minutes and consequently most of the journos ignore them.

The MOSOTOS people have a better approach.

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Sex workers protest at AIDS 2010

A noisy, colourful protest today at the International AIDS Conference by sex worker activists highlighting the impacts of US government policies and those of the President’s Emergency Fund for AIDS Relief on sex workers in Africa.

From Research for Sex Work, Issue 10 (July 2008):

US funding restrictions applied to anti-trafficking and HIV- prevention monies have cowed many service providers and implementing agencies. Furthermore, the requirement that one-third of US HIV-prevention funding be spent on abstinence programming has directed funding toward faith- based organisations (FBOs), most of which have little if any experience with HIV-prevention, and away from evidence- based, proven-effective HIV-prevention. Sex workers are hard hit by these restrictions, and the effects hurt not just sex workers but everyone in their communities. Sex workers had mixed feelings about the reauthorization of PEPFAR because of these restrictions. While PEPFAR offers life-saving medicines to many who would not otherwise receive it, the PEPFAR reauthorization bill included, at time of going to press, restrictions that prevent sex workers from receiving services. These restrictions promote discrimination against sex workers.

I love the way these guys stand up for themselves.

For more information about the organisers of this action and the issues behind it, visit the Global Network of Sex Work Projects.

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MOSOTOS

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The best conference handout in a long time is the faux “Conference Newsletter” produced by TB activists under the name MOSOTOS (More Of the Same Old Talk, Opinions and Speeches). Clever use of humour and satire to highlight an important issue. Below, and over the fold, are some samples. A PDF version of the whole magazine is available – check it out.

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