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Houston, We Have an HIV PR Problem

September 17, 2014

It's no secret that I'm a supporter of better education regarding the safety of people with an undetectable viral load. I've had many reactions to that stance and almost all were supportive. I'm not alone in this; many serious voices have been lobbying for a better understanding of the word "undetectable." However, a significant minority both misunderstand and take offense at the message, claiming selfish motives to justify abandoning condoms for bareback sex. We're being accused of being in some HIV-positive clique, intent on converting others to our perversities.

I would maybe have understood if that significant minority were heterosexual and generally far removed from the HIV sphere -- but they aren't, they are LGBT and negative! Now there will always be people who don't read an article properly, or misconstrue an intention (and maybe the fault there lies with the author for not explaining things properly) and there are always people who enjoy arguing that black is actually white and love trolling on the internet, but I get the impression these objectors don't fall into that category. These are normal, intelligent people who just aren't informed and rely on outdated information and emotional responses from the early days of the epidemic.

Despite that, the number of people who have missed the point and accused us of promoting barebacking has surprised me. My first and perhaps naive reaction was, "How could they say that! That's the last thing on my mind." However, I've suddenly realized that it's not their fault -- we've arrogantly assumed that our fellow LGBT folks will understand everything we're saying and have been following research and scientific progress in detail like we have. Nothing could be further from the truth, and I suspect we've unwittingly overlooked the rest of the LGBT population and made a bee-line for the heterosexuals, when we should have concentrated on talking to and reassuring our own first. By "we," I have to include LGBT and HIV organizations and media, whose responsibility it is to keep people up to date and aware of any new developments.

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However, it's still relatively few, individual voices who have been so desperate to get the message out to the general, non-LGBT public, in order to reduce stigma against people living with HIV but "we" in that sense may have missed the goal completely -- it's not Joe public and his 2.4 kids we need to convince, it's our own constituency -- LGBT people living without HIV! They should hear the facts and understand them first!

One angry reaction to a recent post about the various HIV avoidance options available to us, was that we're just a group who are talking to each other -- navel-gazing -- preaching to the converted if you like -- but not talking to people who are still trying to avoid the virus at all costs.

Painful as that is to hear, I wonder if it's not true. Of course, all new scientific information begins with the findings of a small group or groups of researchers. They then disseminate their findings and information via published papers and those who can be bothered to read such things pick them up and so it goes on until the facts reach the general population.

I still maintain that some time ago, the leaders of certain HIV organizations and their sponsors and backers, noticed the overwhelming evidence that people with an undetectable viral load, a good medication adherence and a healthy immune system are unable to pass the virus on ... and then sat on it and worse, are still sitting on it! The reasons are probably cynical and to do with overturning thirty years of the condom-only message and going against the wishes of their often anonymous, corporate backers plus the fact that there's pressure not to be seen as unleashing another age of depravity (thank you, amongst others, Mr. Weinstein).

That's for their consciences to deal with.

A panicked response to new evidence does not justify suppressing it, when in fact they could easily have said: "This is what we thought through the worst years of the plague but in the light of new evidence!" That would be the sensible and completely reasonable response.

Fortunately enough, objective observers have also read the results of the Swiss study and the Partner project and others and have peered further than the ends of their noses and seen that indeed, nobody is being infected anywhere across the world by someone who is undetectable and healthy. Great news, I would have thought.

However, in trying to spread the news of new advances, people like myself may have assumed that everybody was following developments like they follow the weather and this is patently not true. On hearing of the new findings, many people living with HIV have commented that this is exactly what they'd been thinking for a while, but needed someone to say it but they are viral colleagues and maybe fellow HIVers are not the only group we should be targeting.

I'm beginning to think that the most important group who should hear absolutely everything about treatment as prevention, undetectability, serosorting and all the other non-condom options are those who have successfully avoided HIV thus far and are reluctant to get tested. In other words, the vast majority of the LGBT population -- because they are the ones who are getting the wrong end of the stick when they hear snippets of information about HIV.


Time for HIV 2.0?

There's a strong case for a whole new approach to HIV education, based on the latest scientific evidence and starting again from square one: back to basics teaching about HIV, with moralizing taken out of the equation. We've assumed for years that every LGBT person knows what HIV is and how to avoid it but in fact all they know is that it's something nasty to be avoided at all costs, may even kill you and condoms are the only way to do that. They're hearing information that's at least 20 years old; they've never been helped to expand that and it's being presented to them in a way that they don't even register anymore because the imminent threat seems such a distant one.

So many new cases are emerging from the under 30's age group and say what you will, the fact is many of them are partying, barebacking and not getting tested because they are so far removed from the original panic and the images of death. It's these guys who desperately need all available information presented in a modern and non-patronizing way. They've heard of PEP and PrEP but they often don't know the difference and see Truvada as something to be used when the mood takes them and not in the way that it should. There are some people on social media, websites and on blogs doing great work in trying to educate but they're few and far between; they're not "official" and the question remains, are they reaching their target audience in sufficient numbers to make a difference? Reactions to information about undetectability and TasP suggest not.

The truth is that we need the gay and mainstream media; we need school boards; we need local health authorities and government support and above all, we need HIV organizations to re-evaluate their education and PR approaches -- to get together, sing from one hymn sheet and get to the nub of the problem.

Enlightened sites are doing their best to get the information out there as it happens so to speak but they're dependent on forward-thinking editors and editorial staff to make that a priority. The vast majority of HIV organizations, governmental health authorities, decision makers and mainstream LGBT sites are committee-run and getting decisions made in order to shift a policy in one direction or another takes forever and a day and the process is usually reliant on consensus politics. There's nothing worse than a gay "committee" when it comes to making key decisions -- everybody has their say and then nothing is done for fear of offending the objectors. You know it, you've been there, you've seen it and you've battled with the chairperson to get a Christmas tree for the Christmas party! That's horribly unfair, of course, because the same applies to all other organizations which have to make social policy but the point is, when new information needs to be got out there and fast, it gets caught up in a bureaucratic spider's web almost every time. I'm sorry but every single undetectable HIV positive person who is humiliated, or bullied by his or her peers because he or she tries to present the facts about undetectablity, or TasP, highlights the urgency of presenting the facts as they emerge and not at the next AGM, when it's last on the agenda.

Intelligent viral (forgive the pun) videos, social media, Twitter, Facebook --whatever -- can and do get the message out there; that as an HIV-negative LGBT person with a sex life, you have options to avoid the virus and if you do fall foul of it, get treated, get to undetectable and then you can live an almost normal life. However, sadly they're a tiny minority of voices in a sea of stigma. We need large scale organizations, with a large scale LGBT following to take responsibility and change policy to reflect the truth of the matter.

HIV organizations and some LGBT sites may also mention new developments in passing but -- and it's a big "but" -- the great big elephant in the room is always the moralizing about sexual behavior, either by the author, or the reader/viewer that inevitably comes with it. Don't they get it yet that nothing is guaranteed to turn people off-topic than if you frown at how they live their lives. Take religion, politics and external pressures out of the message and present the facts; it's 2014, not Victorian England!


Just a Western Problem?

That all said, another disturbing number of comments on recent posts about undetectability and TasP came from areas of the world where a much more basic problem is dominating people's lives. They appreciate the message and the information but it's not much use to them if they haven't even passed "Go" on the HIV journey. Time and again, those people have pointed out that actually, this is a first world problem and a first world "luxury" that we're talking about. In many lands, people with HIV have no access to medications and treatment at all. They can't visit doctors and they can't even talk about it with their families. The subject is both taboo and dangerous, or poverty is the deciding factor. Even visiting the internet can be risky (assuming they have access in the first place). This is not just a third world problem, or even a problem in the many war zones. People living in rich Islamic lands, or China, or Russia are faced with this problem daily. These are not third world countries or areas, they are lands with repressive and moralistic governments, backed up by a social pressure that makes being open about having HIV almost impossible.

Needless to say, the western mainstream and LGBT media need to get on to this too. How can we expect the world to systematically reduce HIV to a manageable disease if the virus is regionally denied and the people who have it are stigmatized and punished? Again, a re-evaluation of HIV education is urgently called for. LGBT sites and magazines may be obsessed with who wears what, where and whether Justin Bieber is gay or not but surely it's morally corrupt not to take some print space to point out that the rest of the world is facing life and death issues every day. These people would love to have the chance to be Beliebers but first they need their meds and their freedom to have HIV without punishment or death. Priorities folks; priorities and social responsibility; are they the victims of celebrity ephemera?

I guess what I'm arguing for here is a completely new approach to HIV education. This has to be led by HIV organizations and media who, after all, theoretically, have the most knowledge, closely followed by LGBT media with its largely negative readership and viewers. They then have to accept the reality of LGBT behavior in 2014, educate their constituency (without patronizing them), while at the same time, exerting pressure on the less well informed but financially necessary public health bodies and ultimately law-givers and government and yes, their sponsors too! The most up to date and accurate information should be targeted at the groups that need it most and both the HIV-negative LGBT and the heterosexual population should be shown that there's nothing to fear from HIV except fear itself! Headlines should sound more like: "This is HIV in 2014 -- here's what you need to know" and less like, "Partying bare backers give everybody with HIV a bad name" (yes a real gay magazine headline!) Maybe we all need to play a role in that process too but relying on the same messages that have carried us through 30 years of HIV is an easy but ineffective option and is clearly missing the mark in 2014.

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This article was provided by TheBody.com.
 
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Dave R.

Dave R.

English but living since 1986 in Amsterdam, the Netherlands. HIV+ since 2004 and a neuropathy patient since 2007. I've seen quite a bit, done quite a bit and bought quite a few t-shirts if you know what I mean; but all that baggage makes me what I am today: a better person I believe, despite it all.

Arriving on TheBody.com, originally, was the end result of getting neuropathy as a side effect of the medication, or the virus, or both. I found it such a vague disease and discovered very little information that wasn't commercially tinged, or scientifically impenetrable, so I decided to create a daily Blog and a website where practical information, hints, tips and experiences for patients could be gathered together in one place.

However, I was also given the chance to write about other aspects of living with HIV and have now contributed more articles about those than about neuropathy. That said, neuropathy remains my 'core subject' although one which unfortunately dominates both my life and that of many other HIV-positive people.

I'm not a doctor or qualified medical expert, just someone with neuropathy and HIV who has spent the last few years researching the illness and trying to create information sources for people who want to know more.

I also have my own personal website and write for PositiveLite.com.


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