Bloomsbury Patient Network

Day Two – AIDS Conference Melbourne

Day Two – AIDS Conference Melbourne

Hi All

Now on my third day with only 4 hours sleep, and the irritation is beginning to show! Thankfully, it’s now 9.30pm and I’m so tired I think I may well be able to sleep once I’ve done this, so fingers crossed!

Today was the day for presenting the poster the feedback survey from myHIV members, which some of you may have seen me tweet earlier. I’m attaching the poster for you in this thread, so that you can see how much of a difference the site, support and Forums are making to members. It’s always a tougher job to do poster presentations, as you basically have to stand by the poster for 2 hours, chatting to anyone that walks by and glances at it to try and engage with them on the topic. While I’m naturally a fairly outgoing person, it feels a bit pushy, like being a bit of a salesman, so always a challenge (not to mention just standing there for 2 hours when really all you want is to go to bed!!). Still, there was some interesting discussion and cross-referencing of resources with people from similar HIV organisations in the USA and Australia and a very nice chat with someone who works for the Elizabeth Taylor AIDS Foundation, who is interested in doing some fundraising work for THT in the UK, so that was definitely worth hanging about for!

I attended a session in the Global Village (which is the community space for voluntary sector organisations at the conference – very lively and vibrant with lots of stuff going on at stands and on stages), in the Human Rights Networking Zone, on the subject of HIV criminalisation. It was a follow up meeting for those who weren’t able to attend the weekend’s ‘Beyond Blame’ pre-conferece satellite and consisted of speakers from Australia, America and Uganda talking to Edwin Bernard of the UK (who used to be the editor of NAM’s Treatment Update, but left to put together the HIV Justice Network). The main points of discussion were the many issues facing people who are at risk of being prosecuted for HIV-related offences, whether that be transmitting the virus to someone else, or only having sex with someone else and not disclosing their status first (which can carry a 25 year prison sentence in some US states!).
A Senator from Iowa spoke proudly of their recent Supreme Court ruling which amended the outdated exposure and non-disclosure laws and the work from HIV activists which led to this happening (with one woman speaking to every law maker and member of the Senate, until there was a unanimous vote to change the law). It was an inspiring moment in relation to what is possible when people step forward personally and speak up against injustice.
There was also good news from the local delegate, as their Health Minister announced that they were going to review the HIV specific law that relates to HIV, although there was clearly lots more work to be done, as most prosecutions that happen in the are relate to ‘endangerment’, which is not HIV-specific, but about generally putting someone else at risk of injury.
Laurel Sprague, a US activist from the SEROProject spoke of the findings that came from a national survey which showed that HIV disclosure and transmission laws make people with HIV more anxious and less likely to disclose their status, because of fear of false accusations and prosecutions. The variety of different laws and statutes also mean that people don’t have any real idea of what behaviour is prosecutable or not, which makes things even more worrying. Also, the reporting of prosecutions was widely criticised (unsurprisingly), given the sensationalist and distorted type of news articles that tended to appear. The potential to ruin somebody’s life before they have even been convicted is present in every prosecution, so even if a case is dropped, the person has effectively been outed and charged in public, with no further mention of an acquittal or charges being dropped if this is the case. The Ugandan delegate talked through a case which was widely reported (and misreported) about a nurse who had been alleged to have deliberately tried infected a baby in Uganda and the media witch hunt which followed. You can read more about the case here, which examines the media’s twisting of the truth. It was noted that until 2003 there were no HIV-specific criminalisation laws in Africa, until a USAID-funded human rights agency suggested that they bring in laws to ‘protect’ women and children. The fact that more women have been charged under these laws is clear proof that they do nothing of the sort.
One of the main points about how to improve the current situation was the call to use public health measures rather than prosecute people. There is evidence that this approach is more successful, and more suitable as far as human rights are concerned but the process of lobbying and campaigning for a change in approach will be long and hard in all areas where these laws exist.

My other session for the day explored the extremely hot topic of the search for a cure to HIV. There was lengthy discussion about the one successful actual cure (Timothy Brown, the Berlin patient) and the much-heralded ‘cure’s which proved to be remissions (including the Mississippi baby). The failure of the non-cures was down to the re-emergence of active virus after periods of inactivity and the main focus of the session examined the potential scientific methods for addressing this failing. While the information was too technical to explain in full here, the take home message is that scientists are looking at ways of re-activating the latent (or dormant) HIV that is found in some T-cells, before using new drugs which are currently being researched and developed which would then kill off the virus or at least continue to stop it from replicating, as ART does at the moment. While there has been some success in identifying some drugs that may potential flush latent HIV out, they are not effective enough at the moment to ensure the level of effectiveness to do the whole job. And the other drugs to potentially block HIV are even further back in development. However, there is a huge amount of money going into this area of research and into the related area of gene therapy. The bottom line is that we are closer than ever to a potential combination approach to curing HIV, but it’s still a long way off yet (i.e. it won’t be happening in the next 5-10 years, and hone it does it may be a very challenging treatment to take). In the meantime, we should all be reassured that with ever more effective ARV’s with fewer side effects, living well with HIV is going to be ever more manageable until that elusive cure does arrive!

That’s all for today, but please keep your fingers crossed that I have a good night’s sleep, as otherwise I’m going to be one bad-tempered delegate tomorrow!

All the best

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Richard, London

Thank you for sharing your time, knowledge and experience and courage with us!

Mohammed, Westminster

Thanks for giving me back my life and thanks for giving me hope. From now on I will be seeing my life differently. Thanks for everything over the last three weeks it has been a great course.

Ola, 43, Bow

May I take this opportunity to thank you for your time, support and more importantly faith that we can embrace our HIV status with a degree of confidence and pride

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