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Lost generation: Are modern HIV campaigns failing younger gays?

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  1. William Jones 6 Aug 2009, 2:01pm

    I know the THT and other Aids organisations don’t like to be reminded of it but HIV these days is a chronic illness and not a death sentence. The reason the younger generation haven’t seen people dying from Aids is because they are not dying from Aids.

    It is reckoned that if someone is diagnosed HIV+ today then assuming he starts his treatment on time and adheres to it he will have a normal life expectancy. This is the same as Type 1 diabetes which equally is a chronic disease that requires daily treatment for the rest of your life and if you don’t do this you will die young.

    In terms of side effects there would appear to be a lot in common between HIV and Type 1 diabetes.

    The 2 diseases are not the same but in terms of treatment and side effects they are similar. The big difference is to do with the stigma attached.

    I don’t think it does anyone any favours to pretend that the stigma aside that HIV is a worse chronic disease than any other one. That is being extremely disrespectful to the experience of diabetics and others who also live in the knowledge that they need treatment forever and that if they slack off they may go blind; require an amputation and that even if they are diligent in their control they are still far more likely to die of a heart attack and their life expectancy is lower than for non-diabetics

    Young people know that HIV is not a death sentence so I imagine that contributes to laziness in terms of safe sex.

  2. Actually people are still dying of AIDS. Especially because people do not test late. And there is not complete life expectancy with HIV on meds. We now think people will live to 70 but using drugs that can give you Cancers, muscle wasting and premature osteoperosis. I believe we are in complete denial about what HIV means to us all.

  3. HIV is not the same as Diabetes – Diabetes isn’t transmittable. But I am starting to hear a lot of half truths about it being ‘curable’ these days and all of that. Yes, education is needed, desperately.

  4. Diabetes is a very nasty disease which can ruin lives and cause all sorts of problems. If people think HIV is like diabetes and therefore not a serious problem they need to think again. Perhaps the ad campaigns need to focus on letting people know about the drop in the quality of their lives if they were to become HIV+ and what the impact would be on their day-to-day living. All those drugs and all those side effects are not a mere trifle.

  5. Simon Murphy 6 Aug 2009, 2:48pm

    I’m with William on this one.

    People are still dying of Aids of course. But people are also dying of diabetes.

    Diabetes is a very nasty disease which is often not recognised as such. It contributes to really hideous complications and people diagnosed with Type 1 diabetes at aged 25 have a life expectancy about 10 year younger than the standard. This puts it in line with a HIV diagnosis.

    I am not downplaying the seriousness of a HIV infection as it is obviously ver serious. But the reality is that if you get diagnosed with HIV and you follow your treatment programme diligently then there is no point claiming that it is more serious than a diabetes diagnosis.

  6. Stuart Neyton 6 Aug 2009, 3:28pm

    I’m young and gay but I don’t really understand much about HIV at all. But I think comparing it to type 1 diabetes would be wrong. I’ve had type 1 diabetes since I was 8 years old and if someone said that living with HIV would be similar to living with diabetes then I doubt I would take the former as seriously as I ought to.

    I think one of the problems is sex education. I remember this focused heavily on pregnancy and I can’t remember touching HIV or Aids at all. Sex education programmes need to recognise that some pupils will be gay and might not even realise their sexual orientation yet. I know different but still in my head is a warped idea of Aids as a 1980s disease that only affects people in Africa nowadays.

  7. Simon Murphy 6 Aug 2009, 3:50pm

    No 6: Stuart: You say: ” don’t really understand much about HIV at all. But I think comparing it to type 1 diabetes would be wrong”

    Well I suppose they are comparable in that neither are curable and both require daily treatment for the rest of the sufferer’s lives. And if you neglect your treatment you will die. In that sense they are the same. Obviously they are different illnesses with different treatments (diet and 4 times daily injections in the case of diabetes versus tablets in HIV) but the principle is the same.

  8. The reason why THT is running is THIVK campaign is because about 1/3 of gay men who have HIV don’t know it. This is a concern for two reasons: it’s this individuals who are transmitting HIV, and the main reason why people with HIV still die of HIV is late diagnosis.

    As regards the theme of this article, it’s very easy to be nostalgic about the effectiveness of HIV prevention campaigns in earlier years. However, I’d suggest that you look at incidence figures from the late 80s and early 90s – about 1,500 gay men a year were newly infected with HIV even in those ‘golden days’ of prevention. What’s more, large numbers of gay men reported unprotected sex at this time.

    Furthermore, a major factor contributing to the doubling in HIV prevalence amongst gay men in recent years is the fact that there was a massive and sustained fall in mortality rates amongst gay men once effective anti-HIV treatment became available.

    The fact that gay men are no longer dying in large numbers because of HIV is something to celebrate. HIV prevention campaigns for the situation we face today have to take into account the reality of the epidemic and disease the we face today.

    Nostalgia for treatment successes in a mythical golden ages or blame won’t serve anyones best interests.

  9. Yeah, my straight mate said the most shocking thing to me, he only uses a condom when fucking her fanny but when he does her ass he fucks without cos he thinks getting a kid is worse then aids! so its not just gay people who need teaching lmao

  10. David Abrehart 6 Aug 2009, 4:44pm

    Am I missing something here? Since when is Paul Burston an authority on this subject? I can’t see the connection between writing a comedy novel and being consulted for this article.

  11. Brian Burton 6 Aug 2009, 5:37pm

    Major, chronic disease is certainley being debated on this thread an I applaud all of you. The diseases you depict are all life threatening but stablised by the correct treatment. Life threatening disease is not confined to any type of person or group of people. I had never been Ill in my Life till I was told I had Cancer. The correct treatment cured me, subject to a five year follow-up six monthly medical clinics just to make sure it’s really gone. A few people I had treatment at the same time with did die of the complaint because of the cancer’s advanced stage. Life Guys, you will find, just ‘aint fair!

  12. Stuart Neyton 6 Aug 2009, 11:48pm

    @Simon (7) – Okay I recognise the treatment similarities but type 1 diabetes is genetic and not at all preventable. HIV/Aids can be prevented simply by using protection so I think you’re comparing sticks with stones.

  13. Simon Murphy 7 Aug 2009, 12:07am

    I know that Stuart but at the end of the day whether you are born diabetic or get a HIV infection you require treatment forever.

    They are different diseases but once you have one you have it for life and you need to control it. That’s the comparison I’m making.

  14. I have to say I’m with Stuart. I have Systemic lupus (SLE) as well as HIV. The SLE is a chronic illness I have inherited and I have suffered from birth. The condition is managed effectively now – ironically now by my HIV meds which stablise my immune system and therefore stablise the lupus. It is a serious condiiton that needs lifelong management and when managed is only now cosidered life threatening if there is kidney involvment, which unfortunately I have. It is now anticipated that at some point in time I will experience kidney failure.

    Lupus is condition that results in often severe, chronic pain, as my immune system systematically works through my body focussing on one area at a time, attempting to rid my sysyem of what it incorrectly believes are foreign materials that need to be removed, by joints, my eyes, my mouth and throat, my brain, my kidneys.

    There is no stigma to having lupus. There is a morbid interest in the extent to which the disease eats away at me, usually ending with only the sincerest sympathy.

    I feel no shame in telling anyone I have lupus.

    Whilst there is a risk that I would pass the genetic flaw I possess onto any children I cannot pass on Lupus through transmisison of body fluids.

    I do not have to consider how to protect my partner from Lupus when I have sex

    I don’t have to explain awkwardly and uncomfortably to someone I become close to that I have a contagious disease that will ultimately end my life early and could potentially prematurely end theirs if we don’t go to great lengths to protect again it every time we are intimate.

    I am not required to take medications for my Lupus that year on year are discovered to have more and more undesireable side effects, having not had the benefit of rigourous long term testing before use.

    I never cried with shame having to tell my parents I had thrown away the opportunities that they toiled endlessly throughout my childhood to ensure would be open to be as an adult, when I discovered I had lupus.

    I never has to worry about the risk hurting the people I love most because I have lupus.

    No one has ever refused to have sex with me because I have Lupus.

    No one keeps their children a ‘safe’ distance from my because I have Lupus.

    I haven’t broken my mother’s heart because I have Lupus.

    To some people having HIV might be the same as any other chronic illness, speaking as someone with HIV and another chronic illness I can assure you the tow are poles apart.

  15. PP – you raise a valid point. It does seem to be the elephant in the room that HIV carries an unfortunate social stigma with it that most other diseases (such as your lupus) don’t.
    This is why I’m in two minds whether we should go back to the alarmist campaigns of the 80’s, as those infected with HIV are often treated as social pariahs, which is in some part due do those early campaigns.
    Even on these message boards, our regular fundie trolls use it as a stick to beat us with, painting it as divine retribution for being gay. I don’t know of any other terminal condition where bigoted reactionary types get to imply “You deserved it” with seeming impunity. There’s a world of difference between telling your family, friends and workmates you have cancer, let’s say, and telling them you have HIV. One illicits sympathy… the other is a much more taboo subject to broach.
    I think there needs to be a very careful balance between safe sex ads which drive the point home and alarmist propaganda.
    I think over the past 20 years we’ve gone from one extreme to the other. We need to find that middle ground where we care for and respect those who have it and protect those who don’t.

  16. Simon Murphy 7 Aug 2009, 10:49am

    The stigma attached to HIV is obviously far worse than with other potentially fatal chronic illnesses.

    No-one passes a moral judgement on people with lupus or type 1 diabetes (type 2 diabetes has more stigma as more people tend to think ‘ oh you got that because you are fat and unhealty and fat people are stigmatised to a degree).

    I’m not downplaying the damage caused by the stigma attached to HIV but in terms of the practical day to day treatment and control of HIV it is no worse than any other chronic illness.

    Life is tough. For some people more than others.

  17. Sister Mary Clarence 7 Aug 2009, 12:06pm

    I am wholely in favour of scaring the shit out of people to make them aware of the dangers of HIV.

  18. Brian Burton 7 Aug 2009, 3:53pm

    PP.
    I had a very dear Lady friend who had Lupus and she suffered a lot of pain with it (she died of heart attack) She was aged around seventy two.
    HIV on the other hand, is out on its own and cannot be compared with any other chronic illnesses. I was attending Gay parties and having a good time untill suddenly, the splash headlines were Homosexuals are passing on a ‘Gay Disease’ called HIV/AIDS. Those of us Gay-Partying at that time were completley cought un-aweares and felt very vunrable and a bit silly too! As a result of the reports of HIV/Aids hitting Gays who were having Gay sex with different partners; every Gay activity seemed to stop or be put on hold. Medicaly speaking, things have progressed fairly well. There is no need to die now as they did before and so horribly. I sincerly hope you PP. remain stable and happy for the forseable future.

  19. One can’t help but feel that the latest THT THIVK campaign is designed as much to get more men who are found to be HIV signed up to its HIV support services, for which it receives most of its public funding, as it is for their well being. And can someone from THT please explain to the community WHY the £2 million Pan-London HIV Prevention Programme contract it was awarded a year ago has instead been used to pay for adverts for projects like its Drugfucked web site, PEP, as well as advertisements for its HIV support services in Positive Nation magazine? Wasn’t this funding supposed to be targeted at negative gay men, particularly the young, to ensure they stay negative? This represents a blatant abuse of public funds, and whoever at THT is responsible for diverting vital HIV prevention funding to advertising its own support services to HIV-positive people should be held to account.

  20. At school I was taught nothing about HIV, other than it’s an STD and that condoms can help to prevent catching it. It was almost assumed that we had knowledge.

    These HIV campaigns are obviously not advertising in the right area. I still know very little about HIV. What would I type into google to find out the consequences of living with HIV? All I keep hearing is that you can now live a normal life span with it.

    The difference is, diabetes can’t spread. My thoughts are, if I caught AIDs, how would this affect my future? How would I break this to a partner with such a stigma attached? That alone is enough to put me off having unprotected sex.

  21. Unbelievable!! HIV stigma has been used for far too long as an excuse not to run graphic campaigns that provide truthful information about the real consequences of living with HIV. This PC gone mad approach is at the heart of the rapid spread of HIV in our community. Most HIVers themselves would prefer to see such campaigns if a bit of fright prevented others following them into a life of toxic medications and lethal side effects. The only people benefitting from the truth about HIV being distorted into sexed-up, tantalisingly enticing HIV campaigns are the HIV charities who receive more funding for their services the more people who seroconvert, and of course the pharmaceutical companies who help to co-fund them. It is an outrage that profit and greed is being placed above our community’s health and well-being…

  22. THT should be ashamed of themselves. For years now they have taken a “well, it’s your choice if you want to use condoms, it might be a good idea, but we won’t judge you if you don’t…” attitude. The result – more people with HIV. Sack the lot of them and get some people in who aren’t afraid to give the message straight – wear a condom every time. And gay saunas that show bare-backing porn should be prosectued.

  23. Hi Tom, you mean saunas that THT sanctions with its ‘Play Zone’ scheme? Not to mention its explicit learn-all-about-extreme-sex site Hardcell.org? Fancy being shat on or asphyxiated? Look no further for a guide to the thrills and spills, which its PC brainwashed drones insist is what HIV prevention funds should be lavished on – sod hard-hitting ads that actually succeeded back in the early days in reducing the rate of HIV infection to the lowest levels ever recorded!! THT is meant to be a preventor of HIV, but its PC insanity has made it the prime HIV facilitator. It has become the problem, not the solution, because HIV is its lifeblood, without which it would have no reason to exist.

  24. Are youth being let down by today’s HIV campaigns? = Yes!

  25. Jorge Saavedra 12 Aug 2009, 11:54am

    From my point of view, this article:
    1) Generates more doubts than recommendations
    2) It is mostly based on what is happening in the UK and the US; the majority of the comments do not apply for what has happened globally and definitely not to the developing world.
    3) Assuring that HIV prevention messages directed to gays have changed, does not recognize the fact that in the vast majority of the developing countries, they have never had prevention campaigns targeting gay men at all. In fact they have not even addressed the issue of anal sex.
    4) On the other hand saying that current prevention campaigns directed to gay men are not reinforcing the message of condom use; ignores the fact that lately in Latin America, all the countries that have enrolled into prevention messages targeting gay men, mainly Argentina, Mexico, Brazil, Colombia and Peru, the main focus of their campaigns is condom use.
    All the above reminded me one of the last times I was in Los Angeles, I was invited to the GLADD Media Awards Ceremony, and then, a well known person took about 20 minutes to talk about the gay movement history and its evolution. For him, everything started in New York (Stonewall) and finished in California (Gay marriage battle), with some interesting references to Massachusetts, Vermont, Indiana, Texas, and some other US States, including Hawaii. For the Speaker, nothing else happened in the rest of the world in the gay rights movement´s history.
    From my point of view, gay & HIV problems and solutions for the USA and the UK, do not necessarily apply to the rest of the world; many countries are in different stages of development on this issue, some more advanced than the US, some others on the initial stages, some with a quite different approach and some others with no steps taken at all in terms of gays and HIV at all.
    Pink News is read worldwide, I hope a new article with the same topic could come with a more global perspective of the problem.

  26. Micant1812 14 Aug 2009, 2:28am

    ARE WE COMMUNICATING ENOUGH?

    Since the beginning of the epidemic, experience has demonstrated that significant advances in the response to HIV have been achieved when there is strong and committed leadership.

    However, leaders are often not those in the highest offices. Leadership must be demonstrated at every level to get ahead of the disease – in families, in communities, locally, regionally and nationally. Much of the best leadership on HIV/AIDS has been demonstrated within civil society organisations challenging the status quo.

    It’s our mission is to ensure that this government and policy makers meet the targets they have agreed and mobilize the necessary resources required in the fight against HIV and AIDS.

    SO AGAIN, ARE WE COMMUNICATING ENOUGH?

    This is a question that constantly eludes us all, service users, patients, clients (whatever). People in the professional models of Health & Social Care like local authorities and health authorities feel they are doing all that they can with the funds allowed. But some people actually work for nothing in other sectors of our community.

    For example the voluntary sector (now known today as the “Third Sector”). There are even groups of individuals who are trying to ensure that service users and carers are involved in all aspects of health and social care.

    Health and social care affects each and every one of us and often people living with health and social care issues can often be misguided. For many years now (over 25 years) HIV has continually had much positive and negative media coverage and still people living with HIV are continually treated without respect or dignity. People living with HIV are also not only suffering discrimination and stigma in our society, they are often informed wrongly that the services of which they seek are there to protect them – this is not often the case.

    People living with HIV are people that are not allowed – people living with HIV becoming involved in services at the levels they desire from planning to delivery. Many people living with HIV are often portrayed as been vulnerable, well in many cases this could be deemed true, but some people living with HIV need to be involved in planning and service delivery to retain that dignity one often hears in the grapevine of professionalism.

    WE NEED A VOICE – WE NEED TO SPEAK OUT CLEARLY ABOUT OUR NEEDS AND WE NEED TO BE UNITED WHEN WE DO IT. NO SEGREGATION – MORE INTEGRATION – NO TO EXCLUSION – MORE INCLUSION – NO TO ISOLATION –MORE SOCIAL INTERACTION…

    WHO CONSTITUTION, 1946 – “Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.”

    People living with HIV have been the important catalysts for this to happen. We, as people living with HIV, have united from the beginning and fought for our rights. The right to live productive lives free of stigma and discrimination. Many people are not with us anymore to enjoy it, but people living with HIV have revolutionized the world. But there is one struggle standing at the cradle of all of these: the fight for people living with HIV to be involved in decisions that affect their lives.

    And it is a struggle we are losing. People living with HIV have been instrumental in ensuring the amount of attention — and funding — AIDS is getting now. But in many cases, people living with HIV are not included in shaping that response. Increasingly people living with HIV are included in the process only as an afterthought. Evidence shows that the response to HIV is more efficient, less costly and more effective when people living with HIV are included in project development and decision making.

    We, at the Greater Manchester & Beyond Coalition of People living with HIV and AIDS (GMBC), believe that HIV can be slowed down from the prevention perspective. HIV stops with us, therefore messages need to be much clearer with particular reference to “Safer Sex”. The use of condoms if correctly used can protect people living with and affected by HIV from other infections of sexually transmitted diseases including HIV, Hepatitis, Syphilis, etc.

    Everyone is NEGATIVE until tested and we believe that people living with HIV should always ensure that they and other people continue to protect themselves from HIV and all other infections. With reference to treatment this is also about “rights, responsibilities and respect”. People living with HIV and AIDS need to acknowledge those simple rules and professional service providers must adhere to those simple rules. When treatment is required it must not be post-coded – people living with HIV have a right to be treated with dignity and respect.

    Finally, the care of people living with HIV and AIDS is paramount to general health and well being (the whole person and person-centred approach).

    So again:

    No to Segregation – Yes to Integration. No to Social Exclusion – Yes to Social Inclusion. No to Isolation and Yes to More Social Interaction.

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