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One-third of HIV sufferers ‘face discrimination’

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  1. Why is this story trundled out ad nauseum on a regular basis? It tells us nothing new, except where the priorities of our sexual health agencies lie. They care not one jot about the far more pressing need to keep HIV-negative men negative as their industry today is all about providing services to those with the virus, because that is what the majority of their funding depends on. Now, if THT were to announce that they were finally to do a gritty, truthful, hard-hitting campaign around HIV prevention, then that would be news, but of course it ain’t ever going to happen because, sadly, it just is not in there interest or business plan to stem the virus’ spread. As a business – for that is what they essentially are – it just doesn’t make economic sense. Furthermore, one can’t help but feel that THT et al’s zeal to implore all gay men to be screened for HIV has as much to do with the co-funding they receive from the pharmaceuticals as it has to do with the genuine welfare of gay men. Witness also the aggressive publicity around PEP. When has an effective safe sex campaign ever been so promoted with such vigour? And why is HIV prevention funding being lavished on a campaign urging gay men to take AIDS drugs in case they think they may have contracted the virus when PEP has no proven efficacy (despite the ads proclaiming that PEP “can” prevent the onset of HIV), and whose highly toxic effect on the body makes any future use of AIDS drugs less effective? Research proves that a large proportion of PEP prescribers are the same men who are attempting to manage their sexual status, and who are effectively using PEP as a morning after pill. Of course, if these agencies were doing their jobs and educating properly about HIV and how it is caught then the need for PEP would not be there in the first place. But then of course there would be less HIV meds to sell, and at £600 per prescription we can’t have that now, can we? Indeed, approaching £30,000 per year per patient, it is clear that cost of keeping someone with HIV alive is big business indeed, but one also has to ask are we not in danger of becoming complacent that these drugs will always be issued so freely? Cancer drugs and Alzheimer’s drugs have already been controversially rationed. Britain is one of the most debt-ridden countries in the world; what will happen if/when the money finally runs out? Who will be looking out for those with HIV when everyone will be looking out for their own? These are questions that should be being asked but are being conveniently ignored in favour of the easy option of dishing out HIV drugs, even to newly-diagnosed and otherwise healthy gay men who should not be starting their treatments until they are showing signs of the virus impacting, such as lower T-cell count, but who cares so long as there is another prescription signed in order to hot targets. It is time we took a hard, critical look at how those who profess to be at the helm of HIV prevention have actually enabled the spread of HIV through their obsession over the need to prevent HIV stigma over the need to prevent the disease spreading among negative gay men, and in so doing have steadily eroded the health and welfare of a significant sub-section of our community. Any negative gay man will tell you that HIV prejudice today is virtually non-existent to how it was 20 years ago when fear and ignorance of the virus was epidemic. The likes of THT and Stigma are using HIV stigma merely as a ruse to divert people’s attention away from the real scandal of record rates of HIV transmission that have taken place under their watch as a result of their misuse and abuse of prevention funds (if anyone is in any doubt that HIV prevention funds have been abused, take a look at Hardcell.org.uk launched by THT a year ago, and which now falls foul under the recent passing of the Criminal Justice and Immigration Act of 2008 due to its use of perceived extreme imagery). Today, gay men’s sexual health in the UK is a betrayal the memory of Terry Higgins, the first AIDS victim, and his friends and family who bandied together 27 years ago to set up the THT, which today resembles a blind man with a white stick stumbling in the dark. Unless something radical happens quite soon or a pioneering group of compassionate gay men emerge who are dedicated to tackling the spread of HIV head-on, then the same out of touch practices and policies that have got us into this mess can only mean more of the same old same old, while the community looks on as complicit bystanders to the social genocide that is occurring before our very eyes.

  2. Sorry, in my fervour I typed that negative men themselves would tell you that stigma today is nothing as compared to 20+ years ago. I should of course have typed veteran HIV positive men. Also, I could perhaps have made my point about PEP clearer. I was attempting to point out the simple fact that the PEP overkill means that HIV prevention today assumes the virus has already entered the body, and that there have been no effective prevention ads aimed at the virus entering the body in the first place. And with PEP not being proven in its efficacy (i.e. there is no way of proving a negative outcome), this just goes to prove how the likes of THT have lost their way, despite being awarded the NHS pan London HIV prevention budget for the next three years! HIV is simply not an option, and for many reasons (i.e. the decimating impact of AIDS drugs on the body, the fact that there is no guarantee the NHS will always be financially able to afford the meds, the fact that if the virus doesn’t eventually kill you then complications arising from use of AIDS meds likely will, etc. etc.), and it is these reasons that should form the basis of a hard-hitting campaign. The last thing anyone wants to see are a return to icebergs and tombstones; just graphic, truthful campaigns that hit home about the realities of living – and dying – with HIV…

  3. And one final, obvious point: the only people who want to convince you that HIV discrimination and stigma are rife are the likes of THT, GMFA et al, because HIV stigma is the very excuse they use for NOT running the kind of HIV campaigns that would work to bring down rates of transmission. How many times have you read or heard the cop-out excuse from these agencies, such as, “Oh, we don’t do hard-hitting HIV campaigns because we do not believe in fear-mongering or demonizing positive men, and we must protect the feelings and sensitivities of those with HIV.” They want us to believe that HIV stigma today is as serious as it was 25 years ago because it suits their politically driven agenda. The fact is that most HIV-positive men I know are as fed up with the deceptive spin that spews forth from the likes of THT as all level-headed people are, and they don’t like being used as the excuse not to protect the health and well-being of negative men. The need to prevent further spread of HIV to the next generation of gay men must rise head and shoulders above the perceived need to protect the sensibilities of those with the virus, and we must once again start speaking the graphic truth about the life-threatening consequences of HIV infection, and the fact that contracting the virus can no longer be the option it has become in this insane age of political correctness.

  4. Simon Murphy 22 Mar 2009, 1:45am

    Hmm Rob. I agree with some of your points but I don’t really relate to all of them. I’m quite a negative person (both in terms of HIV status and general personality). Which may explain my curiosity about your essays.

    My question to you would be why are you writing long articles which are only vaguely related to the story in question? You have an agenda. What makes your agenda special?

  5. Sister Mary Clarence 22 Mar 2009, 3:55pm

    I’m not sure what Rob has written is actually ‘vaguely related’, although I also don’t 100% agree with everything that has been written either. Nevertheless whilst THT no doubt apply for funding for all sorts of different HIV related issues, we the public perceive them rattling tins in pubs, clubs and on street corners and raising money through sponsored walks etc. to help improve the lives of people living with HIV/AIDS and also to help reduce further spread of the disease.

    I’ve actually now read their mission statement and that isn’t quite what their goals are but I think they have lost their way a little bit of late.

    There are fairly major issues in this country in relation to the number of people becoming newly infected with HIV. That to me, were I running THT, would be my primary focus. We are hearing more and more, especially amongst younger people that HIV isn’t a death sentence. Certainly my experience of people with HIV is that this is something they are well aware of, despite the current fashion to refer to it as a ‘chronic’ condition.

    I have to then question why we are not seeing the same genre of ads that I grew up with, icebergs and gravestones, to frighten your average happy go lucky teenager into doing everything humanly possibly to ensure that he or she does not contract HIV. Research shows it was quite effective. We are quite happy to show some down right gruesome ads about not smoking – I have never actually smoke, but Jesus they still put the fear of God into be. I start looking at people around me that smoke, thinking if I get cancer I’ll f**kng have you.

    And yet instead we have THT telling us that that over half the people with HIV are unhappy with their sex life. According to the Telegraph 8 out of 10 menopausal women are unhappy with their sex life. What relevance has this information got to anything? There may be relevance if were told that this compares to x per cent of HIV negative men who are so happy with theirs that they are doing back flips. Even if we were though, it is surely not the biggest issue.

    Moving to that bigger issue, the ongoing spread of the disease. The morning after pill is not the most publicly endorsed method of reducing unwanted pregnancies and yet it appears to me (and I would guess Rob) that an inordinate amount of resource is being expended on promoting PEP, and I would say in the absence of publicity on other interventions there is a danger that it will move away from being a safety net if all else has failed to becoming a recognised and expensive way of dealing with any incident of unprotected sex.

    I think that THT needs to strip away all the excess baggage that is has picked up over the years and get back to then fundamental values it started from. Top me is has lost its way.

  6. If my being appalled at the alarming rate of HIV-seroconversions and AIDS related deaths in our community – many of which would not have occurred had educating our community effectively about the severe and life-threatening consequences of contracting HIV remained at the forefront of THT’s activities (i.e. before it realised there were big funding bucks to be made in marketing HIV as a lifestyle choice) – is interpreted as somebody with an agenda, then God help us. Compassion, empathy and concern may be virtually non-existent for those who are sero-converting in ignorance and in record numbers because sexual health charities are now likening HIV to chronic diseases like diabetes, but these were my only motivations for posting. HIV is not and can never be an option, simply because no one can guarantee that the billions in funding spent by the NHS to acquire the seemingly limitless supply of AIDS meds will always be there. Our government has been spending like there is no tomorrow, and it is blindingly obvious that severe public spending cuts will have to be made somewhere down the line, with the distinct possibility that the UK may even go belly up (i.e. bankrupt). The fact is that those with HIV are dependent on the state to supply the drugs they need to keep them healthy and alive, yet nothing is a given any more. The NHS recently attempted to withhold life-saving drugs from cancer patients seeking outside treatment, and won’t fund drugs that are known to stem the onset of Alzheimers even though they cost only £2.50 per patient. The way the economy is going, quite simply it is not inconceivable that other severe NHS cuts may have to be made one day. This could simply be the switching to cheaper, generic AIDS drugs, but it could also mean the cutting back of life-saving drugs across the board, including for AIDS. Who knows? The only sure fire thing we do know, however, is that prevention is always infinitely better than cure.

  7. Simon Murphy 23 Mar 2009, 1:16am

    Still confused.

    HIV is a chronic illness like diabetes. People don’t like it being pointed out but it’s true. Yes there are side effects from the treatment and it’s unpleasant but monitored properly it’s a serious but dealable illness – like diabetes.

    I hate the way people get shocked by comparing HIV to diabetes as if diabetes is easier to live with. It is not. It is an endless, time consuming disease that generally involves dying younger than you should. The thing with HIV is that there is more stigma but the practical realities of living with it are no worse than any other chronic, longterm illness. I’ve been Type 1 diabetic for 30 years and it is not easy or pleasant.

    I agree that HIV prevention is vital, and that the treatment drugs be as free and available as insulin is. I just don’t like this self-pitying attitude to HIV that is not allowed for other treatable (but also ultimately fatal) chronic illnesses.

  8. Sister Mary Clarence 23 Mar 2009, 1:58am

    The difference between HIV and diabetes is that you do not ‘catch’ diabetes from intimate contact with another human being. The point being that once aware of how you can catch HIV from other people, and given a little advice on how you can share intimacy with other human beings safely, you can continue to live your life safely and hopefully happily.

    Without that information being imparted you lay yourself open to daily doses (nearly always) toxic substances, causing all manner of life threatening side effects from long term use, ultimately leading to a most likely painful and premature death.

    To make glib remarks likening disease that is killing millions of people in Africa to diabetes is to say the least distasteful. HIV is a terminal illness that can be managed to extend lifespan in some parts of the world. Referring to it as a chronic illness is part of the continuing desensitising of the illness we are seeing. People need to remain focussed on the idea that it is a fatal disease that should be avoided, and risks minimised at all costs.

    People’s perceptions of the disease have become flawed and this leads to risk taking. The gay community with all of the health promotion information targeted at it should be more attuned than most to the consequences, and yet we see silly and inflammatory little postings like yours trivialising the issue.

    I’m sure it isn’t pleasant having diabetes, and I’m sure you have the sympathy of many but, you’ve managed that condition for 30 years and at a fraction of the cost of managing HIV for thirty years I would guess. This isn’t about one illness trumping another. Its about the fact that an organisation is a prime position to provide life saving advice is squandering that opportunity and focusing on trivial shite.

  9. Brian Burton 25 Mar 2009, 2:36pm

    I was having promisquious sex before the 1980s epademic became apparent. I quit that life along with a lot of friends when we realised where it could lead. I still advise younger friends when they frequent places like ‘Heaven’ etc. to be careful. Horrible deseases of many kinds have persisted since I was a small boy in our communities and throughout the world. Treatments have got better in that time and no matter how much protest is taking place, HIV is certainly being contained after the hold it took on Gays and Populations. Millions of vital, young men uslessly died in the 1914-18 war. Just after the War ended, even more people died in a world Influenza eperdemic. I have been vaxinated against Flu for the year 2008, 2009 later in the year. So, will they come up with a HIV vaxination one day? Maybe!

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