Daily (Or When The Mood Tales Me) Gripe: Has HIV Inc. Run Out of Steam!

This year marks, for me, 34 years of living with HIV/AIDS…though now it is just HIV. I consider it a landmark, as back in 1996 I was admitted to Prince Henry hospital with chronic CMV retinitis, chronic candida, chronic anaemia, wasting syndrome (48 kg and going down), 10 CD 4 cells, and no immune system, and was not supposed to leave…at least not under my own steam. That I did was only due to advances in medications at that particular time, very aggressive treatment, some great doctors and nurses – and a lot of will power. I don’t give a fuck how negative many HIV+ guys are about life with HIV. For me, this was the great singular event of my life, a pivotal point that resulted in life-altering decisions, a mental overhaul, and the knowledge that there was a hell of a lot more to life THAN HIV. It altered the course of my life, and for better or worse I have never looked back.

I was a speaker for the Positive Speakers Bureau for 12 years before realising that when you continually tell a story you start doing it by rote. Time to get out before it became totally meaningless. I have also written for “Talkabout” magazine (the flag ship publication of Positive Life NSW – formally PLWHA NSW Inc) for 15 years, both as a features writer and a columnist. As a writer I see my role to be not just to inform people, but to provoke debate, at times to be opinionated, to raise questions, to address abuses and unfairness and to be, when required, controversial. Unfortunately, my time with “Talkabout” taught me that to get published in a HIV publication you need to walk the safe road. To be controversial is to be tolling your own death knell. Mind you, this censorship has nothing to do with the editors who, in my experience, have been nothing but supportive. Community Health and a certain AIDS council provide funding to the magazine, so to poke your nose into sensitive areas will ensure your censure and non-publication. As a HIV+ person writing about HIV issues I have always found my hands tied. I have written two extremely controversial articles on HIV issues over the years. One, on Options Employment Services using HIV clients as a free work force, in the guise of “work experience”, was so watered down by the editor after threats of suing PLWHA, the editor and myself (I truly wish they had) that by the time of publication it was a mere shadow of its original fiery tirade…despite the fact that I had evidence of this going on. The manager of “Options”even took me aside and “suggested” that I quieten down my opinions as they were providing a service to the HIV community. Shortly after this fiasco, they went broke and disappeared. The second article was amongst the best pieces I have ever written, and covered the controversial area of bug-chasing (HIV- guys who deliberately have unprotected sex with HIV+ guys in the hope of contracting HIV). The magazines working group deemed that by writing about bug-chasing I may have been promoting it amongst a certain sector of the community. Considering that the practice is well documented, is acknowledged and exists, I failed to see how being informative about it was in any way promoting it…oh shit! I forgot that community health and certain HIV organisations wanted to keep their heads buried in the sand about such unpleasant issues…and they held the purse-strings. Censorship is alive and well within the HIV community and always has been. Want to tell the truth about what is going on or want to expose something? Not on their watch!

But despite this I continue to write, though I keep it to the more nondescript these days, and publish them on my blog. I have around 100 followers – not bad for an unknown.. I do enjoy being published! When I moved to Brisbane I began phasing out my writing for “Talkabout” (which after 15 years of being published in pretty well every issue, has gone unacknowledged by the organisation itself, though not by the editors), and had started writing for QPP “Alive”, the magazine of Queensland Positive People. Same story, different place as far as funding goes, I’m afraid. Nothing controversial would be coming out of there either. Nor did I get paid anymore – one advantage of “Talkabout”.

34 years ago at the start of the HIV shit fight, people never questioned anything about treatments, definitions, philosophies, or courses-of-action. We were in crisis mode and anything was better than nothing. We let a lot happen that in more sane, accountable times would never have been allowed to happen. This far down the line it is time to start asking questions, time to demand investigations and redefinition into many aspects of treatment, time to look back at some of the historical record and say “we were wrong”, and set the record straight. I no longer allow my doctor, or the HIV establishment, nor the drug companiesi in particular, to dictate my path to positive health outcomes. I follow my own path, which is dictated to by knowledge and experience. 12 years ago I made a decision to halve my daily medications, and dose myself once a day only. Considering the negative impacts of huge amounts of HIV medication on the body I decided to take a risk. Well, this far down the line my health has never been better (though diet and exercise also contribute to that), my viral load has remained at undetectable, and not only has my CD4 count remained stable, it has in fact risen substantially. Considering the recent emphasis on drug regime “compliance”, and considering my own circumstances, I am forced to ask – controversially, naturally – if the compliance issue is being driven by HIV specialists, or by the drug companies who stand to make a fortune out of HIV drugs. In the same way, I question resistance testing. I will leave that question in the air for you to mull over and answer for yourself. This is a personal opinion, and one I am entitled to.

I started “withdrawing” from the HIV community – in a generalised way – a number of years ago. It was starting to irk me, and was bogged down in academia, and a narrow mind-set. As stated earlier, the fact that something comes from the upper echelons of HIV Inc, doesn’t necessarily mean I believe or accept it. You tend to get a reputation for being obstreperous when you adopt this philosophy, and question everything that is thrown your way. There is little doubt that anyone from HIV Inc…or its sycophants (those who blindly follow and agree with every word from the mouth of) who reads this opinion piece will accuse me of negativity, and not being supportive or a believer in the end of HIV. This is not correct. It is a big step from negativity to a position of voicing reality!

I have written on several occasions about my distrust of drug companies…though it is an area that many are now accepting. These multi-billion dollar corporations are as corrupt as – despite much denial from health practitioners, community groups, and the drug companies themselves. As long as there are stakeholders salivating at the stock price, this will never change. That we are over-dosed – a now acknowledged stand – is all to thebenefit of the drug companies, who are, at the end of the day, just research, manufacturing & distribution companies, with no stakes in public health other than shoveling their massively over-priced medications down our gullible throats. Now that community pharmacies are handling HIV meds, I went to my local, and was probably the first to get my meds through them. They nearly had conniptions when they saw the price of them! Considering how many years some of these drugs gave been on the market for, the price has never come down. HIV was a regular little money spinner for the drug companies!

Our larger HIV community groups have also been very good at wasting money over the years, and still continue to. I have seen so many ineffective campaigns churned out by them over the years that I’ve lost track. Nothing like churning out the same messages year after year, targeting the converted, and the blasé. When you are given advertising targets, you…well…spend it! The community groups themselves will tell you that no campaign is launched without the blessings of a focus group. What they don’t tell you is that it is pretty well a hard core group of people who attend these focys groups and forums, so in actual fact it is the same people – irrespective of the organisation arranging things – castings their blessings on every campaign that is tested. No wonder they all look the same!

And don’t ever think you can rely on the same groups to be able to assist and support you as needs change, despite however much notice is given of situations changing. By the time they catch up with what is happening, hundreds will have fallen through the cracks, and others will have just given up, and end up fighting their own battles. At the time of the introduction of the then-named combination therapies, there were two major issues raised. One was assisting those who were resurrected from a porential death sentence, being cast back into a world ill-prepared for them, or their needs. The second issue was handling the massive volume of drugs being rammed down the throats of basically every HIV+ people at that time. At the height of new treatment regimes, I was shoveling 358 pills per week down my throat – antivirals, prophylactics, and pills for side-effects. Wasn’t that fun, with the added value of time & dietary restrictions! The only group committed to the problem of compliance was “Caleo”, which had its funding withdrawn after 2 years – just when it was needed. HIV Inc. prioritising, .as usual. Bet there was plenty of money for yet ANOTHER wasted campaign on condom use! While they were throwing yet more money away, many like ne were negotiating unprotected sex with like-minded – usually other HIV+ – guys. Money would have been better spent advusing guys on this at that time, not years down the line…then treating it like it was a great revelation from the powers that be.

Likewise when I worked for the Positively Working Project. Sonia Lawless & myself spent 12 months putting together a needs assessment for guys returning to the workforce after being returned to reasonable health via HAART. Nothing truly innovative was actioned after this very important report was released. Guys were basically given no assistance at all to help in the transition from DSP to a form of “work” that was beneficial to them in the long run. I was a speaker for the “Reconstruction” program for quite some time, and the most obvious negative from these programs was that many guys got recycled from one program into another. How many times can you be shown how to write a resume, or how to approach an intervuew before it becomes a lost cause? Considering the recycle rate, one would have thought that it clicked with someone that the approach was wrong, that maybe the guys were looking for inspiration and support to direct their lives in new directions – one of the key outcomes of the Positively Working report was that guys did not want to return to their old professions, but wanted to go off in new directions. No one listened!

HIV Inc. has a bad habit of being dogmatic, of only expressing the narrow, popularist view! You only have to go to any HIV web site, or forum to see how prolific this attitude is. If you want help and support, then ensure you walk in the safe zone, looking neither left nor right. Don’t problem solve yourself, don’t question the status quo! Over the 23 years I have been on DSP, I have – perhaps to my detriment – never used many of the services and financial assistance available. I hate the victim mentality, and have always liked my independence and financial freedom, and have always managed to get by. If I truly needed the help, I would have gone for it. I always remember my anger at guys who used to attend the Luncheon Club. They would be given cheap meals, and access to cheap food through the Larder – yet after the lunch, you would see them in yhe pub drinking till all hours, and all smoking! Seems they weren’t willing to sacrifice anything at all – the more you gave, the more they took. I always thought it was wrong, that their priorities were skewed. I still think that. Add in bill assistance from BGF, and housing subsidies…and these guys had it a lot better than many pensioners in the general community.

Anyway, times moved on. Now we have PrEP, and “Ending HIV”! According to HIV Inc, implementing the former will create the latter. According to a comment on a recent post placed on a FB HIV group page, during a discussion on PrEP, “if you have raw sex and take PrEP, no more HIV transmission, so no more HIV”. As simple as that! I was so angry at the naivety of it all Inever returned to the post. The “Ending HIV” campaign is just ANOTHER example of HIV Inc. wasting precious money. There are several big problems here. One is the emphasis on sexual practice, and the assumption that because testing kits, and PrEP are available, that everyone is going to use them…another assumption being that everyone prepares for sex. Yeah, we all know about that! The only realistic fact I’ve read so far is that guys are sick of using condoms – are, in fact, not using them! I could have told them this 20 years ago! The general discussion seems to be around eradicating HIV in Australia (no man is an island…) but logic decrees that is never going to happen. We have to account for the tyranny of distance often making both kits and PrEP difficult to obtain, people who are heavy drug users, bisexuality, guys who want to remain anonymous, cultural differences, worldwide travel, religious beliefs – these are just some of the obstacles. And as one guy pointed out, why should we be exposing perfectly healthy guys to the toxic effects of HIV drugs! It’s a good point. Most of us who take the drugs regularly are concerned about the long term side effects of same. I wouldn’t be taking them if I didn’t have to! It was also pointed out that new classes and alternate antibiotics are currently geing tested, and that these, along with PrEP will not only eliminate HIV, but STI’s in general. Evidently we are heading towards the perfect world. My immediate thought was…oh, new antibiotics…so, how long until STI’s make us resistant to these as well! Worth thinking about. This seems to be all HIV is about now – at least that’s all I seem to read about, and encounter through HIV groups. There is a lot of philosophising around both issues – good luck with that!

There was a time about 10 years ago when I thought that a changing of the guard from the older to the younger generation would bring about new thinking and ideas. It may have worked, but the old guard hovered in the background, never really wanting to relinquish their hold. The new guard just became copies of the old guard, and nothing seems to have progressed. There is a certain degree of internalised discrimination towards some sectors of the HIV community, and that hasn’t helped things. Also a certain degreebof self-stigmatisation, and being a victim amongst a group of guys fairly recently converted who will, in all probability, never get ill. A current trend to outing their HIV status to employers – who rarely receive the news gratefully – then leads to a string of posts on what to do. I don’t quite get why there is a need to advertise you status to all and sundry. Even in pre-HIV days, if you contracted an STI, the only people you informed were sexual partners. In my 34 years of living with HIV, I have only ever informed one company of my status – and that was for OH&S reasons. It’s not like the 80s & 90s when people with AIDS looked very obviously ill, and there was no hiding it. That doesn’t happen anymore. Maybe I’m just old-fashioned, and don’t believe in making a rod for my own back. I acknowledge that it is their lives to do with as they see fit, but common sense should decree that if you are going to travel that road, you should ask yourself – what can go wrong here! And if the worstcase scenario presents, are you prepared to deal with the backlash.

So, right here and now, I’m an ageing HIV+ man. I see a lot of HIV funding been spent on a lot of things – but nothing that is of any use to me! I don’t see the funding assisting with an actual cure, or giving me a place to go should my current pathway be diverted! As someone with a disability brought about by AIDS, no one has ever asked me…what would you really like? What can we do to assist and support you? There was much to-do about a Long-Term Survivors Day earlier this year. I remember thinking at the time – Why? Nothing will come out of it! As usual, we will be left to fight our own battles! It was a nice bit of tokenism, I guess. We like to think that we are thought about occasionally, even as just a passing thought. You see, we are seen as HIV past, not as HIV present. No one really understands us, as few walk in our shoes. It’s a lonely path at times, and frequently alienating. But we have defied the odds, and will probably continue to. HIV Inc. doesn’t have us in their sights any more…but then…

Maybe that’s just how we want it. It’s a no-bullshit world for most of us!