Still need more people to get tested by reducing stigma.
Increasing life expectancy helps in this but there needs to be a change in culture and attitudes too
Is the cure for HIV possible in our lifetime?
Please watch the following video all the way through and then pass the link on to as many of your friends, negative or positive, male and female, as you can.
This is gd news, although a 20 year old just getting diagnosed now, will still have a signifficantly reduced life expectancy as things stand. People also need to still realise that HIV is a serious virus and side affects from the medications are terrible. So people need to keep getting the message across about using a condom.
Absolutely need to get more people to get tested and be aware of their status and act responsibily by engaging in safer sex
That said, we need to be honest about ARVs and the side effects – some people (but not most) have some serious side effects, many have only minor if any side effects …
De-stigmatisation must be a priority so that more people can accept the need to be tested
We need to put the effects of the side effects of medication into perspective. We are now into a second generation of HIV meds and much more is understood about how they work, and the doses they are used in are much less than when HIV meds were first introduced. Someone starting treatment today may expect to have some inital short terms side effects, and if these do not do away then it is very easy to change to a different regimen (assuming there is no drug resistance or other underlying health conditions). I think it is very much over stating the side effects to be “terrible” and with some research it is possible to arrive at a combination that best suits the individuals set of circumstances. There will always sadly be some individuals that have a difficult time with side effects, but the numbers are these days very few.
Just saying that HIV meds are terrible is really not helpful to encourage people to test and get the necessary treatment they may need.
Good news but stigma still exists and confidentiality not guaranteed if you don’t want your Gp to know. You ask them (The Lawson Unit) not to let your Gp know and mysteriously through the post you receive a letter inviting you for a health check at your Gp for your condition as you are a patient at The Lawson Unit. Seems your right to confidentiality is just dismissed.
Whislt it is completely wrong for your HIV centre to notify your GP about your HIV without your approval, we are now in 2011 and as more care will be provided by GP’s I really do not see the problem with your GP knowing that you are HIV positive. Obviously this is a very personal choice, but I for one am very happy to have my GP kept in the loop as to me it makes sense in terms of a joined up appraoch to my overall wellbeing.
You are lucky if your doctor is prepared to extend real care to you as, firstly, a gay man, and secondly, as an HIV person. But not all doctors are happy about having to consider the HIV status of a patient. There are some surgeries who have only one or two patients who have HIV, and so they consider that learning about HIV and ARVs and side-effects and HIV problems is not just justified. There are some surgeries which are run by doctors who prefer to think that this condition does not exist in their area, or who immediately associate HIV with sexual misbehaviour and so do not consider it as yet another human illness. And, finally, there are GPs who believe that all of the HIV-related problems of their patients ought to be handled by the patients’ HIV specialists at the HIV clinic. Unfortunately, however, the HIV specialists at the clinics will only deal with the viral load and the CD4 count, i.e. dish out the drugs and monitor the blood levels.
For example, if your HIV and medications have reduced your bone density, as they can do, so much that you have developed problems in your joints, then your HIV specialist is likely to advise you that they do not have the financial resources to refer you for scanning or x-rays. Your HIV specialist will tell you to go to your GP. That’s all right if your GP is sympathetic. If your GP is not sympathetic, it is difficult going to them to ask for such problems to be attended to. You have a right to do it, yes, and they have no right not to provide care, but if your GP has an attitude to HIV or to people who are infected with HIV, then you have a difficulty.
If, however, you are one of the people who has a GP who is deeply concerned to know about and learn about HIV and its problems, then you are mos fortunate.
I take your point about GP’s and that not all want to get involved with caring for HIV +ve patients. This comes down to education and discrimination within the health care system. As HIV positive individuals we should not put up with poor primary care from our GP’s, and we need to be more vocal about these problems. I have been registered with 3 different GP’s in 3 years, and again I can honestly say I have not had a problem – I must be a very lucky individual.
I think you have painted a somewhat jaded and unusual scenario Chris H, and I would refer you to my comment further down in this thread about beting optimisitc and upbeat – there seems to be an undertone that +ve individuals are not allowed to be ok with thier diagnosis and we should all be miserable – I don’t get it at all personally. We are where we are, and we adapt and get on with life. It has taken me 3 years to be this positive but I am not ashamed of my outlook.
I am not sure if you are quoting a personal experiance here, or trying to develop a worst case scenario situation with regard to the bone density example. In the situation you describe it would have to be a pretty helpless individual who would accept the argument of their HIV consultant about finance and also to put up with a crap GP. Now I am sure there may be examples of where this has happened, but I cannot imagine the scenario you describe is widespread.
We need much more joined up thinking, but unless HIV +ve people shape the services for the future then we have to take what we are given. I wonder when you last wrote to your MP or the minsiter for the disabled to voice your opinions?
Doesn’t all this rather conflict with the statements the HIV charities constantly put out that HIV is no longer a chronic disease but a manageable condition, and that HIV-positive people now enjoy normal lifespans? Regardless of the effectiveness of the drugs, while HIV continues to curtail people’s lifespans it remains a terminal illness, no ifs or buts about it, and this is the message that needs to be conveyed in today’s HIV campaigns:
Contract HIV And Meet An Early Grave!
Also, am I the only one who thinks that the almost complete shift to emphasizing HIV testing over hard-hitting HIV prevention campaigns serves to further the interests of corporate interests – ie. the pharmaceutical industry – over the rights of HIV-negative men to be properly informed in order to remain negative? Yes, testing is important, but campaigns encouraging testing should not be at the expense of prevention campaigns that tell it like it really is, which have been all but absent since the nineties.
Well I stated this in a post not long back and got shot down for it.
HIV is still proven to shorten one’s lifespan. As to the amount, this is unknown and I suspect it will take many years before that fact is known. The bottom line is, it is better to be HIV- than positive, and people should be very concious of avoiding infection as it still remains a serious health issue. Those that are infected should not have to suffer the stigma, but unfortunately if it is a choice between protecting those that have not got it, versus those that have, then I’m afraid the majority has to get the vote.
Because of how the life span is calculated in this study ie at the time of ARVs starting it is impossible to determine from this study a definitive life expectancy due to the variable timing of when meds start in each patient.
What is promising is the extension of life expectancy reported. Other reports do consistently give an expectation of no significant different to life expectancy for well managed HIV patients
HIV itself is not a killer.
If this report is accurate then, in 10 year there has been a 15 year increase then there may be 15year (or more) increase bringing full parity of expectancy. That said other reports do show no significant variance from the general population.
Yes, we do need to encourage testing. To do so we need to reduce stigma.
We need to protect everyone from health HIV negative (whatever that means) or positive people, but people need to have both a realistic appraisal of the virus and take personal health responsibility
One important point this report neglects to mention is the fact that HIV-positive people will have their lives cut short mainly as a result of complications arising from the drugs rather than full-blown AIDS itself. Antiretrovirals are essentially toxins that over time wreak havoc with the body’s defense system. Perhaps the report should also have mentioned the fact that a 2009 40,000+ case study in America found that someone contracting HIV at age 21 will have a body that functions like an 85 year old by the time they are age 50.
But of course the HIV charities won’t produce shock campaigns that tell you this because in their insane PC mindsets it is anathema to suggest being HIV-negative is preferable to being HIV-positive. What deterrent do negative men have today to stay negative when PC zealots like these are running the HIV prevention asylum and trolling discussions like these on other gay/HIV-themed web sites and hijacking them with their PC gibberish and downright lies?
As someone who is HIV negative, my motivation for staying negative comes from me and I take responsibility for protecting myself. Whether or not people with HIV are living longer or whether or not HV is a manageable disease is irrelevant. I still don’t want to be infected with HIV. I feel the same way about most things. I don’t want food poisoning so I make sure I don’t eat food that is out of date, but I know it won’t kill me and that it’s manageable. I don’t want or need someone to shock me. I just want real information and I‘ll make my decisions based on that. In fact I don’t know what someone could do to shock me. I would have thought that the majority of people (of which gay men are a part) are the same.
Samuel, if one day medications get better and the statement you made about people having a body that functions like an 85 year old is no longer true, I assume you still wouldn’t want to become infected by HIV. It’s not isolated shock tactics that drive either you or me.
Firstly, I cant fault you for wanting to remain negative – thats a good position (in my view) and demonstrates taking personal responsibility for your own health.
Whether or not HIV is manageable or not, clearly it is preferable not to have it (in most peoples views), as is the case with most health problems.
Its important that we all have real and honest information on HIV partly to reduce stigma and to promote others to take responsibility for their health.
JB, you thankfully are someone who appears to be fully aware of the extent of the risks inherent in acquiring HIV and make your choices around health and wellbeing from an informed perspective. In that respect you are fortunate; many other gay men, particularly those under 30, are less so. Study after study reveals the alarming ignorance around HIV, what it is, the dangers to health and the consequences of a lifetime on toxic meds, which is why so many are prepared to bareback.
I recall a survey of gay men a couple of years ago found that most under 21′s see HIV as being no more serious than any other STI, and some are even incentivised into barebacking by the glamorous, sexed-up HIV campaigns of recent years that have promoted pulling out before coming and essentially emphasized the inevitability of acquiring HIV instead of promoting safe sex as the healthiest, non-negotiable option. Just because you’re allright (Jack?) doesn’t mean others wouldn’t benefit from some shock and awe…
Far from failing to disclose the issues of side effects, the monitoring of people on ARVs and noting their life spans takes into account all issues connected to those patients.
As for side effects on ARVs whilst they are well publicised, the vast majority of people have relatively minor side effects – although some do still have significant impact on some patients
Samuel it seems you belong to the Status brigade that spout the stuff that you have written here. The SMART study concluded that HIV meds are not responsible for many of the underlying HIV associated difficulties that have been seen in the past 15 years. It is well known that uncontrolled HIV replication damages the body much more than the meds do. This is why it is important to get people tested & where appropriate get them on treatment – an undetectable viral load is the main aim of HIV treatment today.
I cannot agree the ARV’s are basically toxins, yes the likes of ddI, D4t and AZT which were used in high doses did produce very unpleasant side effects, & in some cases caused many health problems. These drugs are no longer used, so why on earth would you suggest ARV’s are just toxins – they are not.
Prevention is a difficult issue, & if it was as simple to get Gay men to wear a condom every time then we couldnt have the problem we do!
Larry Kramer put it this way, a few years ago: taking anti-retrovirals day in and day out is liking taking chemotherapy till the day you die.
There are a great many HIV+ people who look well and therefore prefer not to know that inside their bodies the powerful HIV medications are damaging their bodies.
And what all this means is that we all, whether negative or positive, ought to be getting very angry that governments are simply not doing enough to fund and encourage research into THE CURE for HIV infection, how to rid the body of HIV infection.
Ummmmmmmmmm HIV is not a “plague” and to refer to it like that as Larry Kramer does is just ridiculous – end of in my book! What is he likely to know about modern HIV treatment????
And you, W6_bloke, sound like an HI zealot whose priority is to get as many gay men hooked up on these drugs rather than working to prevent the spread of the very virus that such drugs keep in check. But then, when THT has a revolving door into GSK and is happy to take funding from Glaxo year in year out, it isn’t hard to see whose interests it really serves. I mean, to even suggest that pharma drugs are not toxic is outrageous! Pharma drugs are synthetic compounds that by their very nature produce all manner of side effects, and very often additional drugs have to be prescribed to counter the effects of other drugs, and so on. It just strikes me as supremely ironic that after years of HIV prevention campaigns that seem more than anything else to have fueled the spread of HIV, orgs like THT are now imploring gay men everywhere to get tested. Yes, they have helped create a problem to which they are now flogging the solution in today’s HIV campaigns on behalf of their pharma paymasters!
When I last checked, GSK only produce one fixed dose drug Kivexa that is often used in the UK today……………so if THT are trying to influence GSK or vice versa, then they are doing a pretty poor job of it. The other drugs that GSK produce are as follows; Lamivudine (3TC), Abacavir, AZT, Combivir (fixed dose tablet) and Trizivir (fixed dose tablet). None of these drugs are currently used for standard HIV treatment in the UK. Kivexa is the preferred NRTI backbone used in London, but many other areas still prefer Truvada (Gilead Science). Combivir is sometimes used for preganant women as there is a lot of experience with AZT at preventing vertical transmission.
Gilead Sciences produces many of the popular treatments used today (Truvada, Atripla, FTC, Edurant and Complera) Only the first 3 in this list are currently used in the UK/EU. I suggest you read up so you are able to back up your wild libelous statements.
Treatment is crucial to reduce the overal population viral load – this is a well documented epidemiological method – try and reduce the infection at source. I would also remind you that HIV has no boundaries and that gay men are not the only people who get HIV. I know you want to make HIV a “gay disease” and that you like to pit +ve gay men against neg gay men, but the truth is the gay community (if it really does exist) need to take far more responsibility for their actions.
The gay community need to unite to help tackle the HIV problem, yet people of your thinking and Peter Scott (Status Prevention) don’t beleive that postive gay men should to comment on prevention strategies. If this is the case why are you engaging in a debate that only affects HIV +ve people with regard to life expectancy – double standards and pure arrogance is what it boils down to. If anyone is a zealot I think it is you!
I think Samuel you will find that chronic means long term illness, which by the very nature is manageable by the use of highly effective and tolerable meds. I agree that HIV is an infection that can be very difficult to live with – BUT using hard core messages do not work. How do we persuade the 22,000 people in the UK that have HIV but are undiagnosed to go and get tested?? Scaring them will not work, they will then go on to possibly infect more people, and eventually present with a very damaged immune system, which can be fatal. There were 500 HIV related deaths last year in the UK, most of these were because individuals tested too late and were very unwell. How is scaring people going to address the issue of undiagnosed HIV.
When you say “tell it like it really is” as an HIV positive man how can you know how it really is? You simply cannot. The prevention message has been around for 30 years, use a condom every time – its as basic as that, why don’t gay men in particular get that?
*read psitive as negative*
“Scaring them will not work”, you say.
But centuries of education has proven beyond all doubt that scaring people out of certain dangerous behaviours and practices DOES work.
You live near a cliff and you have a wandering child. “Scaring him will not work”, you say. Nonsense. You WILL scare the hell out of your child so that he will FEAR going anywhere NEAR the edge of that cliff.
Wow you seem to be gunning for me Chris H. When it comes to health related stuff scare tactics do not work, especially when you are dealing with a highly stigmatised condition like HIV. Whilst some may respond, many become overly anxious and are too affraid to test, they would rather not know (as you seem to agree with in your comments about the supposed detrimental effects of meds inside the body). How do you propose to get more people to test on a regular basis if they are so anxious about HIV and then really worried about the meds.
As I have said many times prevention is a very difficult balance to get right, and much more needs to be done and mors money spent on effective campaigns. I and others share the view that scarmongering HIV is not helpful and only leads to more infections and possible HIV related death.
Why have we got 22,000 undiagnosed HIV +ve people in the UK? Would be great to hear your thoughts on that one Chris
W6_bloke, you are talking out of your PC backside and you know it. If there were shock campaigns that highlighted the true consequences and downsides of HIV infection, OF COURSE MORE PEOPLE WOULD THEN WANT TO BE TESTED!! Are you seriously suggesting that their anxiety would deter them from wanting to be tested in order to then have access to life-prolonging drugs? The reason gay men today are NOT getting tested is because the emphasis has long since turned away from truthful, hard-hitting prevention campaigns to sexed-up campaigns that make HIV look glamorous and even desirable, and which do not distinguish the seriousness of HIV infection from acquiring any other STI like syphilis or even crabs!!!! And because there is no distinction, many young men today see HIV as just another STI – another reason they do not perceive an urgency to get tested. It is not HIV that is the real killer here – that is the PC lunatic fringe currently in charge of prevention!!!
Shock tactics tend not to work in health promotion – you are quite right
If we look at a respected academic study by an Australian psychologist:
In this study we can see that emotive or shocking health promotion campaigns may initially be effective but longer term they have the impact of building resistance in their audiences.
As I have previously noted Samuel – if you have a problem with THT and any other HIV charities – take it up with them. I will never be persuaded by the argument that you make, and as you are clearly a big fan of Status Prevention then please spend your time engaging with their joke of a campaign that is meant to be helping negative gay men to stay that way – they cant even produce an up to date website let alone any kind of credible campaign.
I wonder how many newly diagnosed individuals you talk to on a daily basis – you obviously have no idea of the effect fear, stigma and poor information has on these people (and please don’t use your usual crap that I am being PC) – I am having some compasion and understanding, something you evidently to not have. Read the house of Lords report with regard to the effect stigma and fear has on testing rates, or are you above the number of experts that submitted evidence. Your aruments lead to HIV phobia and more and more infections!
With regard to anxiety in relation to HIV Samuel, you obviously do not have much practical knowledge in this area – Any HIV helpline will take many calls a day from people who are highly anxious that they may have contracted HIV and that they are going to die, that they will be disowned by friends and family, and that they have no future. Also many of these people create elaborate “what if stories” where HIV transmission could never ever scientifically take place. Where do these anxieties come from I have to ask? What is your answer to this?
I have had conversations with several individuals who have an irrational fear of HIV & prefer NOT to know thier status. Surely this is a dangerous situation on so many levels, on a personal level for the individual who may go on to become very unwell or end up infecting someone they love because of their ignorance and fear, but also in terms of public health, as undiagnosed people are much more likely to be highly infectious.
OK, so let’s examine the evidence about the effectiveness of hardhitting campaigns in reducing HIV infection, and the lies and myths being perpetuated by HIV charity sector zealots who push HIV drugs far harder than they strive to keep the safe sex message alive, funded in part as they are by the drug manufacturers. It is a statistical fact that between 2001 and 2006 HIV infection rates FELL by 20 per cent, a success rate that was accredited to a ballsy, graphic HIV campaign that ran during that period under the umbrella name HIV IS NO PICNIC. In the same period in London, during which the likes of THT and GMFA ran sexed-up PC HIV campaigns including one under the banner PULL OUT LIKE A PORN STAR AND CUM OUTSIDE, new HIV cases exploded by 58 per cent. Explain that one, W6, and also explain why Governments consistently use hardhitting campaigns to successfully cut smoking rates, reduce reckless driving, etc if they don’t work? Or are you scared of having your pharma funding cut off?
Sorry, in my last post I neglected to point out that HIV rates fell by 20 per cent between 2001-2006 in San Francisco.
Your obsession with pharma companies is clouding the issue here. I do not work for any HIV charity so funding is not an issue for me personally. Can you explain to me what are the lies and myths about ARV’s, or are you also at odds with the clinicians up & down the country that prescribe them to HIV positive individuals? I am unable to comment on the two examples you give, as I am not familiar with the particular campaigns.
However having looked at the HPA figures for the period you quote the incidence of undiagnosed HIV reduced from 62% in 2001 to 48% in 2006, and obviously during this period diagnosed infection rates would naturally increase. In terms of the numbers of infections these remained relatively steady during the period year on year with 2005 showing the biggest % increase. New infections remained flat at 2650 for the next 2 years. By my calculations using the HPA figures the increase between 2001 and 2006 was 46%. ……….
…….and not 58% as you claim.
As I DO NOT WORK IN THE HIV CHARITY SECTOR – I have my own view on prevention which is this: Undiagnosed individuals pose the greatest problem for HIV transmissions and low life expectancy (lets try and keep to topic). The House of Lords Report clearly states that stigma is a barrier to testing rates. So in my book lets get people educated IN A BALANCED way not by your SENSATIONALIST way and present the medical facts as they stand TODAY. This in my view will improve testing rates which reduces forward transmissions and gets more people hte care they need – ergo life expectancy goes up! Also the population viral load reduces therefore we see less infections.
If someone has early stage cancer they get it diagnosed and treated, why is this not happening with HIV – it is beceause of fear, stigma and irrational anxiety about HIV. Condom use must be maintained, but at the end of the day individuals will make thier own choice, regardless of best advice.
You seem very selective in terms of which campaigns that THT and GMFA run … there have been campaigns such as those you mention which I also find questionable in terms of integrity – but there have been numerous others which have been responsible (albeit not the hard hitting campaign you seem to seek, although research shows them to lack anything other than short term effectiveness).
I find your comment that HIV rates fell because of one advertisement, unintelligent
Prevention is important, crucial and necessary. However, it needs to be effective methodology that aids long term prevention – and shock tactics rarely work. Thats not to say some shock campaigns may not be a good thing (as there will be an audience that may respond) but we need to be sophisticated and intelligent in how we approach health promotion and not be blinkered in a particular direction.
Offhand Stu, no, I can’t locate the surveys online but I am sure others recall them as there were big headlines at the time. People like Dr Chris Jesson and Paul Burston commented on them and there were heated discussion boards much like this one.
Before you continue twisting what I have clearly said, for the last time I am mostly certainly NOT against gay men testing and share the view of the HIV sector that testing should be encouraged – but NOT at the total exclusion of upfront HIV campaigns.
I also maintain that through their indifference, intransigence, failed polices and hidden agendas, at least where HIV prevention is concerned, the HIV charity sector created the pretext whereby this call to testing is required because they have allowed themselves to be so influenced and co-opted by Big Pharma that the onus now is on locking the door AFTER the horse has bolted; ie pushing PEP and HIV treatments at the virtual exclusion of all else. How on earth did HIV prevention come to this?
This is an interesting article – most of which has washed up in the arguments used by one or two individuals
It is a co-incidence that much of the information has either been stolen from the original article or that Gary Leigh is under cover posing as someone else………………………or planted here by the likes of Status Prevention, who also include Karl Riley, who is also mentioned in the above article as being the then eidtor of Boyz…………interesting the David Brindle was also in the original Status Prevention set up, but I am now told that he has severed his ties with them.
To me all this seems very odd and I cannot help being very suspicious of many of the postings being identical to the article I have cited above!
Here is the link to Gary Leigh’s website Life or Meth
Again the similarities in arguments are amazing……………………..
Also the Pink News survey was run in 2008, but there is little information about the sample size or how the questions were structured. 82% said that harder hitting campaigns were needed, or a guess 8% error isnt bad!
And we see very similar arguments here as well, the very same phrases and tired information – come out Gary Leigh where ever you are!
You really take the biscuit W6. You totally ignore or bluff your way our of the accusations leveled at your type of mindset and keep entering the delusional paranoia zone where you accuse anyone who says something similarly as being one and the same person! As I said before when you were busy accusing me of being everyone else, the arguments against your dangerous approach to HIV prevention remain the same, no matter whose mouth(s) they came out of.
Your ilk’s resistance to hardhitting campaigns is bordering on the pathological. How on earth can you and Stu maintain they do not work where HIV prevention is concerned when there hasn’t been a decent HIV sector campaign in 20+ years, and the last government-funded one was applauded universally for its deterrent effect, ice bergs and all?
Wouldn’t it be sensible, humane even, to give a modern, appropriately pitched harder hitting campaign a go to see what happens? Or will your budget only stretch to egg shells and cotton wool?
At least all the information I write here is my own – I have not copied and pasted from other writers. I have taken time to research and review many many ideas with regard to prevention strategies. I am authentic in my views on this, and despite your insistance that I am closely affiliated to THT et al, I am quite capable of forming an informed opinion. The information you have placed on this particular thread is identical in parts, as are all the examples you have given – there is no new infomration in your arguments that you were using back in 2009.
As other contributors have commented on this and other threads it is you who is delusional and paranoid, and suspcious of anyone that dares to question your motivation, tactics and entrenched agenda. It seems that in 2009 a group of like minded individuals who share your twisted philosophy were targetting GMFA in the hope that it would fail. Most people have posted information based on their own experiences or views on this particular..
….topic, and whilst I may not agree with some of these views at least they are genuine and authentic. Samuel (whoever you are) you have once again hijacked a subject which sadly does not fit your agenda – improved life expectancies for HIV +ve people is not helpful to you, so you have regurgitated information that isn’t your own and this has provided a conveniant distraction from the real headline here.
Individuals today want to be educated not scared – this was one of the comments I noted from the atricle that PN ran on the attitudes young gay guys have on HIV prevention. I have no problem telling it like it is, but this is not what you and your ilk are advocating, you want to use the very worst case scenario when it comes to HIV infection. I regularly talk to people who having buried thier head in the sand have eventually become unwell with CD4 cell counts of below 50, sometimes lower than 10. Once these people have got over the PCP or other OI, and the meds do their work………
…..and these people then go on to flourish and eventually get on with thier lives. Why in 2011 are we seeing so many people testing very late? You say that harder hitting campaigns encourage people not to engage in unsafe sex but I would suggest that this could work in the opposite way in that when harder hitting campaigns have been run (the example of San Fran) may just reduce testing rates, which then washes up as a lowered rate on diagnosed HIV…………………this is only saving up the problem for later on and then we see people presenting with very very damaged immune systems, and this leads to death.
How can you really be sure that on a population level shock tactics or harder hitting campaigns just switch people off the issue completely. I was talking to a friend who was infected in the early 80′s – he knew he was positive for many years before he eventually got the care he needed.
In the PN article entitled “HIV charity answers back” and the resulting comments it is very obvious that there is multiple entries from the same person using a different posting ID, this was picked up by many of the contributors, so this is not just my perception. The same has happened in other similar articles. People are entitled to thier views BUT when the viiews are so extreme and bear resemblance to current thinking then they have to be challenged.
I think one of the posters in the comments to the above ranted on citing many many cherry picked comments from Thebody.com………..this site is based in the states and much of the information describes people who have been HIV positive for 25+ and because of the problems have suffered with bad side effects, drug resistance etc. This just does not happen today – so how are these comments relevant to any purposful debate today…………..
………………. It seems that the extremists like yourself want to magnify every possible side effect of meds and label them as truths, when the reality is that this is not the case. Even in 2009 many PN commentators clearly dimissed your thinking as out of touch and just scarmongering – this obviously has not changed. I have only in the past 12 months entered the debate on HIV prevention, having taken time to research and take qualifications to back up my knowledge of HIV / ADIS.
It is very disengenuous to make multiple names and try to control the debate in your favour – this tactic has been done time and time again – I am not paranoid, but it is very clear that you and a small group of individuals have an agenda that is dressed up as wanting to keep negative gay men negative – yet you do not understand the very basics and complexities of HIV natural history and how this has played out over the past 30 years. Your arguments to not stack up and they are based in the distant past!
@ W6_Bloke – do calm down or you’ll blow a gasket!!!!!
I don’t think you do yourself any favours printing the links you do to past PN HIV articles and not least the very interesting exploration of political correctness’s negative impact on the quality of AIDS campaigns on the crystal meth site you also link in to.
All damning and incriminating stuff against the HIV establishment fromk where I’m sitting, that’s for sure, and I hope the Powers That Be are aware of the near criminal behaviour that exists by those guiding gay men’s health.
I for one have had a very enlightening couple of hours skimming through it all (the PN forums attached to the artricles in question frankly take the breath away and have to be read to be believed).
It frighetens me to think such a closed ranks lynch mob mentality exists among people like you who refuse to accept any idea that has not been PC micromanaged.
I would strongly urge everyone to follow these links as kindly provided by W6_Bloke and prepare to be horrified at the by the mentality and audacity of people that run AIDS UK Plc today.
Well, I shall continue trying to find the studies you mention or hope you find them (or someone else recalls them) as, it would be unfair to form a final view on them without reading them (at the very least) …
I have not twisted what you have said, merely interpreted the words you have used. If thats a wrong interpretation then you should seek to clarify – isn’t that what debate is about.
Oddly, when I clarify how you misrepresent my words you seem to not like this either.
I am categorically saying that the priority currently for tackling HIV should be a combined approach that reduces stigma to encourage testing, promotes safer sex and other risk reduction methods and considers appropriate and well thought out campaigns that are robust in their message (but ideally do not stigmatise as this is damaging to another factor in the strategy for dealing with HIV).
I am a bit confused about your last posting – first of all you say “I don’t think you do yourself any favours printing the links you do to past PN HIV articles ” and then you say ” I would strongly urge everyone to follow these links as kindly provided by W6_Bloke”. Moving on this particular article, and lets not try and foget the original article focuses on improved life expectancy – so to my mind being PC just does not come into it. I would agree that going back to past for information is not helpful, but there are some that constantly do this.
You mistake my “blowing a gasket” for my passion on this subject – if you have read the postings closely you wil realise that much of the stuff written has been regurgitated from a 2009 article. HIV prevention is always going to generate alot of debate, but I have no agenda for being PC, I have just been accused of this – all my postings are based on scientific principles and studies, yet even then the entrenched minds still…….
…refuse to even acknowledge this scientific appraoch, preferring to make wild accusations about me personally & hijacking the debate here. To repeat I AM NOT AFFILIATED TO ANY HIV CHARITY, I HAVE NEVER WORKED FOR AN HIV CHARITY, I AM NOT PAID AS A SHILL BY THE PHARMA COMPANIES, AND I DO NOT PERSWONALLY KNOW ANYONE WHO WORKS FOR AN HIV CHARITY……………..I am my own person and I am entitled to my opinion just like everyone else is. My opinions on HIV have been shaped by my studies, reading, conversations with clinicians, involvement in HIV forums (in the UK) & attending various seminars run by clinics and experts in the field. I have no political agenda here other than to scrutinise what has been said and to comment where I beleive the information provided is incorrect and does not match current expert thinking. Surely you are not suggesting that I agree with regurgitated, cut & paste information in favour of HIV experts? I don’t think so. I say leave politics out of this debate!
“Samuel (whoever you are) you have once again hijacked a subject which sadly does not fit your agenda – improved life expectancies for HIV +ve people is not helpful to you”
“This, in a nutshell, exemplifies how the HIV sector twists and subverts all criticism of their corrupt approach to safeguarding the health of our community. I rejoice in the fact that young men diagnosed with HIV today can live 15 years longer than they would have done diagnosed a few years ago. But that is NOT the point I have been highlighting and which the likes of W6 and Stu defiantly continue to ignore; namely that many men being diagnosed HIV today might otherwise have had ANOTHER 15 YEARS on top – 30 years in total – had HIV prevention not fallen into the hands of an unelected bunch of PC disciples who turned HIV prevention completely upside down, allowing said men to become infected in the first place. It is clear now that their agenda all along has been about HIV enabling, not prevention.
I have not ignored the point that you make and again, you misrepresent my views – disappointing
Samuel how many times do I have to say that I am not part of the HIV sector as you call it – this is something you have continued to assume, and I am not sure why! This is your perception of me, so if you will not believe that there are very well informed HIV positive people who are empowered to take control of their HIV then I am at a loss to convince you, and to be honest you either take it or leave it!
Also Samuel the individuals who sadly have become +ive have contracted the condition because of the choices they have made with regard to their sexual behaviour so it is said men themselves that have allowed this to happen. This may not apply to all newly acquired infections but please do not expect me to believe that al these young gay men do not know that condoms are the best protection from HIV / STI’s. If you believe this you are making out that gay men to not know their own minds and need supervision to make the correct choices. I await to be shouted down – again!
W6 and Stu, I would not be so crass to suggest that everyone who contracted HIV in the last few years would not have done had there been harder-hitting campaigns in that time. But I contend that a good number of them would not have done had such campaigns made clear, for example, that having HIV knocks X number of years of your lifespan.
I’m not old enough to remember the shock 1980s campaigns but I know guys who were around then and who are grateful today that they instilled fright because they penetrated the psyche and made a lasting impression in a way today’s campaigns don’t. And yes, they are HIV- some 25 years later.
Harder-hitting campaigns don’t necessarily need to be about instilling fear; just stating the realities of what living with HIV is for many gay men today. What could be so objectionable if it helped change behaviour amid the rampant culture of barebacking that’s been allowed to fester in recent years? Only someone lacking empathy and feeling could possibly object.
Thanks also for the links. If I were you I’d re-read “Killing Us Softly” which is a lesson in how to put your point across eloquently and concisely. But like Blofield (above) says, this is an own goal as the links reinforce the very points all those like myself have been making!
Because I share the opinions of the author and anyone else who sees things clearly and not through PC-tinted specs we are all supposed to be the same person? That is a PC control freak’s way of trying to make the opposition seem smaller than it really is, yet you have also dug up the Pink News statistics – are the 85% of gay men who voted for harder-hitting campaigns really a minority?!
For your information I researched a few past HIV articles in Attitude magazine – which has been very on the ball in its rallying call against the PC policies of the HIV sector – before I came on here. So now I guess that makes me Attitude’s editor, Paul Burston, Gary Leigh and Status all rolled into one!!!!!!!!!!!!!!!!!!!!!!!
All I can say Samuel if you think the “killing us softly” was well written and provides a balanced approach then you are entitled to that opinion. However reading many of the comments to the article it is very clear that many of the PN readers felt that the writer was scaremongering and adding to problems of stigma, and had a clear agenda to try to discredit both THT and GMFA. In 2009 I was dealing with my own difficulties (not HIV related) so it is only recently I have engaged in prevention issues. The reason I question your multiple identities is that this was also noted in said comments in 2009.
The same sentences and examples that appeared in 2009 are written here, with no attempt to put any sort of personal interpretation on them. This makes me very suspicious (not paranoid ) just questioning why someone would do that?
Samuel I very much agree that campaigns should give an accurate picture of what it is like to be HIV positive in 2011. I have never suggested anything to the contrary. I am not a political person, I am very much a scientist in nature, and I seek research and practical examples of what a person being diagnosed today can expect to encounter. I prefer to take the middle ground which I believe gives a very good prognosis for HIV positive people today. We will continue to see things improve and I am optimistic.
You have labelled me a PC HIV zealot because of my point of view. There have been constant undertones that because I am +ve then I am pro HIV as a virus and am happy for all gay men to seroconvert. This is a totally incorrect assumption, I have gained qualifications so that I can confidently discuss HIV, if you don’t know the subject matter then how can you form an opinion is my point of view.
I suspect that my hard hitting ideas would be too optimistic for you and again I would…
… To use the example of life expectancy I would say that individuals who are diagnosed early have much better outcomes than those diagnosed late, and with continued improvements in technology they can expect to have a near normal life expectancy.
It is my view that to say that being HIV +ve WILL knock x years off your life expectancy is not factually correct, and that is the difference between us. HIV is a complex individualised illness and to make such black & white statements I believe is just not helpful.
Today I learned of a young man who is seriously ill because of his HIV, he has a serious complication, but he was the first to say ” that’s life”. It would be wrong to say that because complications occur then many HIV + guys can expect the same, this is my problem with your point of view – it is for me too extreme and is not proven in anecdotal & expert opinions. When I described my own situation I was shouted down, yet in 2 years of meds my CD4 count has never gone over…
You continue to be disingenuous in saying that I have said certain things which I have not. You seem to regard me as arguing an identical viewpoint to W6_bloke. This is not the case – and I am sure that W6_bloke from other discussions will agree that whilst we both seek destigmatisation and increased testing linked to effective messages on safer sex etc – there are other issues on which we would disagree.
Please do not distort my views or try to pretend I have said something which I have not.
Read what I have said. I agree some hard hitting campaigns may be useful in a limited manner (even the iceberg campaign had other facets to it and was targetted with safer sex messages, and an encouragement to seek testing (at the time in certain circumstances)). In order to promote safety and protect those who are not positive (and those who are too!), then safer sex, reducing the impact of the number of unknown positives and good honest HIV awareness are crucial. …
… That said, in terms of effectiveness of shock campaigns the evidence is that they are largely ineffective in reducing infection rates or changing behaviour. There may be (I havent seen it but I do not deny it may exist) evidence that there is a desire for more shocking campaigns. I can see the theory as to why they might be useful – but in times when the public purse is restricted, I would prefer public health and health promotion spending to be on effective campaigns rather than those desired. If there are limited wisely drawn up campaigns that have some shock elements to them – I have no objection but it needs to be balanced against a need to destigmatise.
You seem to infer that because I do not see the value (due to prior evidence of lack of effectiveness of shock regimes) of such advertising etc that I must support the growth in bareback sex – well, thats not true – I do not encourage bareback sex, and your inference in such a euphemistic link lacks logic.
I would agree with you Stu, in broad terms we share the same views with regard to improving testing rates, reducing stigma, and providing better well informed balanced education – it would be foolish to think that there are not a range of views in the centre ground on HIV prevention.
I have previously admitted that my views on prevention and how HIV is perceived are sometimes at odds, but I believe that the positive gay community should work more closely with the gay community as a whole to help reduce HIV infection.
I have never stated that things are perfect in HIV prevention, and I have in the past been critical of so called “Netreach projects” where I believe there is a huge opportunity to improve HIV understanding, as this is an area where substantial gains can be made.
Stu: “shock tactics rarely work.”
Here we go again, the same old same old. Now tell me Stu, where is the evidence that you PC oiks always demand that shock campaigns don’t work? That’s right, THERE ISN’T ANY!!! The only evidence that exists around such campaigns is that they serve as a deterrent to more people indulging n a particular behaviour than they would absent of such campaigns, which have been all but absent in the UK for two decades where HIV concerned. And guess what? 3000 new HIV diagnoses last year – a terrible, no, deplorable indictment of the approach our HIV PC zealots have taken with regards to HIV prevention, and still you cling to the same old myths and outright lies about the supposed ineffectiveness of hard-hitting campaigns when they are known to impact upon and deter more people than campaigns around egg shells and sponges, which I believe was the last HIV campaign THT ran, when was it, 3 years ago now? Since then it has all been about PEP and HIV testing!!!!!!!!
First a piece of advice, if you are going to ask for evidence – try and have open eyes to the possibility that the view that you have in your mind as being accurate and factual may be wrong, otherwise you will be viewed as unintelligent and biased. The fact you ask for evidence and then immediately say there is none (particularly when I have given an academic article reinforcing my position already on this thread and can provide many more) suggests strongly that you do not have an open mind and thus miss out on fully understanding the situation.
Secondly, I am not PC – I am passionate about HIV prevention and that means increasing testing and that means reducing stigma.
Thirdly, you claim I stick to old myths – yours are prehistoric if thats the case. The iceberg campaign and the HIV is no picnic campaign both led to short term reductions in diagnoses (not necessarily a good indicator as it may be more of a sign of people being reluctant to be tested) but longer term….
… reductions were reversed.
In terms of THT, GMFA campaigns being purely about PEP etc. Try this 2009 campaign which I would regard as both encouraging testing (a good thing) and awareness – there is a lack of awareness regarding seroconversion illness:
There have also been ads with images of various STIs – hardly sexy and quite hard hitting images …
Your biased view is clear
Samuel – your comments are not wanted here as you are totally unhinged, you are not in a position to make valid points because you know nothing about health promotion campaigns, HIV or the medications used to treat HIV. You are a discrace as a person, and you have hijacked this particular topic, which is about seeing an increase in the life expectancy of HIV positive individuals – WHICH IS VERY GOOD NEWS, but sadly for you makes your arguments totally irrelevant. You are stuck in the past by using totally out of date information citing outdated “shock campaigns” that didnt even reflect what was happening in terms fo HIV care & treatment in the early 2000′s.
Your views are dangerous & on the day that I read that some African people have been persuaded to stop taking their meds by their pastor – and have since died your input is not welcome. People like you with limited knowledge but a political agenda are causing a personal and public health problem – now leave it you total idiot.
Well, Stu, like a master contortionist of mind manipulation you certainly managed to wriggle your way out of that one, didn’t you? As well you know there is zero evidence to support your absurd hypothesis that hard-hitting campaigns have no impact or deterrent effect that serves to tangibly lower the participation rate of the compromising behaviour being targeted, so what on earth are you wittering on about instead? Either there is or there isn’t, and if there is then jolly well present the evidence.
In your outrageous rebuttals and obfuscation, however you are revealing the same transparent HIV sector colours as those being displayed on here by W6, almost to the PC rulebook. And there was I thinking they only had one full-time disinformation shill at work on these boards. Maybe you will be for the chop in the next round of cutbacks being aimed at your sector. Boo hoo, you won’t be missed.
I know very well that there is clear proof that hard hitting campaigns only have limited success.
Please do not tell me what I do or do not know. For your education (given your apparent ignorance to the facts) here are various academic studies that demonstrate the lack of effectiveness or doubt connected to hard hitting campaigns in health promotion:
These are just some examples.
As I said, there may be an audience for whom scare tactics work and thus must be addressed but overall more testing, more safer sex and thus reducing stigma must be the priority.
As for my profession, I am an advanced emergency medical practitioner – no specific involvement in HIV practice, although that does not prevent me for having a passionate and inquisitive interest in the issues surrounding HIV.
I have no connection with any HIV camapigning organisation nor with any HIV clinic, so your rhetoric and accusations are without merit or substance, and sound borderline paranoia.
If anyone is providing disinformation on this site – then (although you are too blinkered to see it) unfortunately sunshine, its you …
So we are supposed to take academia’s word for it that hard-hitting campaigns do not work when they examine evidence only theoretically? Oh please don’t make me laugh!!!! The day humanity follows everything academia spouts to the letter is the day we all end up tits up. Isn’t it also academia that theorizes that needles should be given to drug addicts under the guise of “harm reduction” instead of looking at the problem from a holistic angle and addressing the underlying causes of the problem? Exactly.
So who is right here? 90+% of gay men who whenever surveyed say that hard-hitting campaigns should be used where chronic infections like HIV are concerned, or a bunch of liberal academics luvvies theorizing from a biased, politically correct perspective that effectively determines what they will say before their studies are even published? I think I will continue to trust the instincts 90+% of my gay brotherhood on this one, thanks all the same.
Well clearly you know nothing about academic research – its not necessarily about spouting forth on theories, but testing quantitatively and qualitatively the outcome of events etc.
As a clinician, I prefer to base my work on good sound evidence rather than eminence. The only way to establish evidence is to carry out research – rather than guess.
I tend to look at the academic research and evaluate it myself for accuracy, bias, and flaws and then reach reasonable conclusions.
In terms of academia, the giving out clean needles is not the sole part of the solution that academics propose – but part of the solution. You need to be pragmatic and whilst dealing with the issue of drug use and abuse, minimise the risk to those who continue to use. Its an honest appraisal of the situation.
Where do you get your 90% figure from?
It seems that despite well thought out arguments, scientific & academic evidence being provided, some individuals are so entrenched in their thinking that their distorted view will never ever be changed. I really do not understand why they engage in discussions of this nature as there is no point as nothing that can be said is likely to be taken on board. Deflection tactics and making wild assumptions seems to be the order of the day.
This particular topic has been hijacked by a few individuals – we should be agreeing that the increase in life expectancy is very very good news, rather than defending well thought out and reasoned debate arguments, judging from the comment icons most people seem to understand that this entrenched view is not valid.
Good luck with any future comments, out of frustration I resorted to a personal attack, which was deserved!
“Where do you get your 90% figure from?”
There was a survey on this very site, as NTSC says, a few years ago which asked a straightforward question: “Do you want to see the return of hardhitting campaigns, yes or no?” and the yes vote achieved over 90% of the vote.
A couple of years back Boyz magazine and several other places reported the findings of a survey commissioned by the Soho Pride organisers, which set out to establish once and for all where the gay community stood on the very issues we are discussing here. I don’t recall the exact figures, but again the vast majority wanted the return of harder-hitting campaigns (I remember it was 5% who said they didn’t), and many of the younger voters had no idea of the seriousness of HIV due to sexualized campaigns that, a considerable number said, had incentivized them into unsafe sex.
Now, THAT is what I call hard evidence because it is from the ground level – from the mouths of the very people such campaigns are supposed to target…
BTW boys, I couldn’t possibly let this discussion continue without mentioning the headline of the front page of today’s Times:
CLAMP ON LOBBYISTS WILL HIT CHARITIES AND UNIONS
Well about bl@&dy time too, though how rich this news is as it brings us full circle and to exactly the point I was originally making about how the HIV sector has been co-opted by the pharmaceutical industry and is, today, in the business primarily of getting as many gay men tested as possible and onto meds after years of willfully running half-baked HIV campaigns that were NEVER designed to make an impact or have a deterrent factor; to where we are today where the rights of gay men to be properly informed of the consequences of HIV infection have been thrown out of the window altogether.
No surprise, then, that Big Pharma’s profit line is directly proportional to the rise in HIV infections among gay men over the same period. Ho bl@&dy hum…
“judging from the comment icons most people seem to understand that this entrenched view is not valid.”
LOL, I can picture W6 as I write in the local internet cafe logging onto several computers at once to manipulate the hands up/down facility, as always occurs on such discussions where idiots and charlatans try to hijack the debate. They want us to believe the PC lunatic asylum holds the consensus viewpoint where HIV is concerned when the aforementioned surveys most categorically confirm they do not. Yet they will do anything and stop at nothing – as this discussion has shown – to maintain the many lies and myths that have been used over the years to send those HIV conversion rates soaring and keep their pharma paymasters happy. Those like W6 won’t be truly happy, it seems, until a poz diagnosis is the predominant status among gay men, who can then all join him having a wonderful life dependent on taking regular doses of toxic drugs. This is truly a sick, twisted world we live in…
Can you provide me a link to the research which provides these 90% figures? I have been reasonable and provided you with links to the research that I have quoted.
I won’t form a final judgement on it until I see what was asked and the integrity of the research but on first listening to your comments I would say there is a huge difference between what people want to see in campaigns and what is necessarily effective.
On another issue you raise, you seem to think that getting people tested is a bad idea? So having an underlying significant number of people who do not know they are positive is a good thing? – Says a hell of a lot about the lack of integrity in your argument
The survey you refer to Samuel was commissioned by Garry Leigh, and many of the questions on the survey were leading questions. The sample size was 500 and was not necessarily a sample that would be seen as scientifically balanced, given that it was conducted at a pride event.
Garry Leigh obviously has a particular political agenda which has failed to gain traction because of the outdated information and views he has in relation to HIV.
..he just didnt want to know as for him the acknowledgment of his condition would have meant that he was just waiting to die. How can you be sure that this is not the case with harder hitting campaigns – the mindset may be that of “if I have HIV then I don’t want to know because I don’t want to be the sujbect of stigma & I don’t want my life ruled by meds that will mean I cannot do the things I used to do – I would rather not know”
Because mis-information is being peddled as “fact” newly diagnosed or people starting meds feel that their lives are over. ” can I go drinking with my m8′s, is it safe for me to exercise, I want to keep my energy levels as they are, meds will stop this, I don’t want to get skin problems and loose my looks, can I still have an enjoyable sex life, I have a cold do I need to see my HIV consultant etc etc etc”
If we are going to debate important issues with regard to HIV then lets do it in a balanced way and provide the education that is desperatley needed.
“GSK only produce one fixed dose drug Kivexa that is often used in the UK today…”
You say it yourself W6; Glaxo produces one of the most regularly prescribed HIV drugs, so of course they have an interest in selling as many as possible. They are a business with shareholders to satisfy! Do you think they spend millions researching, producing and promoting Kivexa for the purpose of NOT wanting to sell as many treatments as possible? It is for this reason they have inveigled their way into HIV charities across the world, well, those who sacrifice their principles and allow themselves to be taken in by pharma’s lobbyists in much the same way as Members of Parliament – the Senate in the US – do, passing laws that favour pharma’s interests to the detriment of us all. Libel is only libel if it isn’t true. Prove what I have described is not true. BTW, Glaxo also makes one of the PEP drug treatments that THT advertises in gay media like soap powder. Not serving pharma’s interests. Oh come on!
If you read my posting carefully then you will realise I was talking about the UK market – Kivexa is one drug out of a possible 6 to 10 drugs currently used in the UK. If you can provide proof that Kivexa is prescribed more often than Truvada, I will bow to your superior knowledge. I would also be interested to know which drugs THT are adverising for PEP, as the standard treatment is Kaletra & Truvada.
So as far as you are concerned prevention should just look exclusivley at the HIV negative group of the gay population? And to get this straight you do not advocate any sort of risk reduction strategy at all, and should a person have a possible exposure then PEP should not be available to help prevent possible transmission? What are your views on treatment as prevention? And how do we reduce the population viral load whichout increased testing and treatment? Answers would be appreciated as this adds to informed debate!
Samuel I notice you have not attempted to answer any of the points I have raised with regard to anxiety around HIV……….you clearly have a very fixed agenda, which is not helpful to anyone. As I have said many many many times condoms are the most effective way of preventing the spread of HIV and other STI’s, and treatment as prevention comes a very close second for HIV prevention. If it was really as easy to get every person to wear a condom every time we would not have the problem we have. A one answer solution does not and will not work, and are you saying that people should not have a choice in their sexual behaviour?
People take “calculated risks” all the time it is human nature – you seem to not understand this, and you choose to ignore the more detailed evidence regarding HIV transmission in favour of one single misguided message – you are just paying lip service to the problem, and politicising the debate for your own ends.
Of course I could also point out how the pharma industry, like others, employs spin doctors to target the media and pays disinformation shills and to troll the internet looking for forums like these to ambush with lies and mind manipulation techniques to distort the reality of what is really going on to paint them in a favourable light. Only today there was an expose on how the pharma industry manipulated the media just this past week with what basically amounts to a hoax – that vitamins might kill you (http://www.naturalnews.com/033883_vitamins_mortality_risk.html). Total balderdash of course but it suits the pharmas to demonise natural therapies that cannot be patented or monopolised. Similarly, when W6 spouts garbage like “Any HIV helpline will take many calls a day from people who are highly anxious that they may have contracted HIV and that they are going to die” I have to ask are you stuck in a time warp? The very reason people are acquiring HIV today is because they believe…
…the HIV charity sector lies that you can live a normal, happy lifespan because HIV drugs are so wonderful. It is factors like these that lead gay men to take calculated risks with their health. The truth is today there is no real fear attached to acquiring HIV, so quite how you imagine we still inhabit a mid-1980s mindset where genuine fear prevailed – I know, I was there! – is both absurd and an insult to those who know what genuine fear around contracting HIV is, and it is horrible. Horrible enough to serve as a deterrent to acquiring HIV in the first place.
W6, I am not for one minute saying you’re a paid shill of the pharma lobby, but there is always one resident PC HIV sector troll on boards like these lurking to ambush and subvert the discussion by decrying/shouting down naysayers who refuse to be manipulated with inverted word play and subterfuge that seeks to keep the public in ignorance of what is happening in plain view, if only they would wake up and smell the coffee.
Samuel you are full of hot air and you provide no substance to your arguments – at least I am able to back up what I say with the basic information with regard to current scientific thinking – its not rocket science.
I have no idea why you have engaged in this debate as you are constantly having a go at THT, GSK and other big pharma companies – what this has to do with the life expectancy issue is beyond me. Oh yer, shock, horror,
life expectancy has increased because of ARV’s – how do you square that one.
It is pointless trying to engage you in factual debate, you are just here to troll……..
The HIV charity sector do not lie that +ve people can live happy normal lifespan – this is borne out in the many individuals I speak to on a regular basis, and the discussions I have with clinicians. I am not sure that you really know what is really happening in the here and now. Gay men should make their decisions based on the fact that it is better not to have any STI. They should not require fear to persuade them to try and avoid HIV & other STI’s. There is another angle to this which is borne out of poor self esteem, and the image that gay men must conform to a “perfect preened body”. Younger guys out on the gay scene see HIV positive guys having fun, taking drugs, with great bodies covered in tattoos, and enjoying life, these images are much more powerful to a younger guy than any health promotion campaign. Fear should never be the driver for behavioural change – we are talking about grown up men who need to take personal responsibility.
You actually seem to be the one that is completely out of step with many of the posters on this subject – this topic should not be of any interest to you because, like the rest of Status Prevention (and we are not sure who they are, other than Peter Scott) are only interested in HIV negative gay men, and not the gay community in general – it is quite obvious you are here to promote your own political agenda.
You fail to answer any reasonable questions only to use tactics to deflect from the real issues that HIV positive people will want to read about – it is great news that life expectancy is catching up with the HIV negative peer group – and it is obvious that in the next 10 years there is likely to be no difference in expected lifespan. Yet another nail in the fear coffin – this news must be a real disaster for you – but I guess you will resort to other sensationalist tactics!
W6: “Fear should never be the driver for behavioural change – we are talking about grown up men who need to take personal responsibility.”
You talk about grown men needing to take responsibility when all the HIV sector ever does is encourage people who contract HIV to be regarded as victims when they should be being encouraged to take responsibility for the fact that, through whichever transmission route, they were unfortunate to contract the disease. The PC charity sector is all about turning people into victims. The last thing it wants is empowered individuals who take control of their status when they have myriad services to sell and need HIVers to be dependent on them.
And what do you say to weaker-willed gay men who don’t now how to take personal responsibility, and who contracted HIV when a harder hitting approach might, in some cases, have deterred them from unsafe behaviours? Fear is a proven deterrent, but clearly not where the HIV sector’s balance sheet is concerned…
Samuel B (who is sounding more and more like Peter Scott AKA Status Prevention, in the rants he posts up here) you seem to be implying that I work for one of the HIV charities – I DO NOT! However as an HIV positive individual I take total ownership of my condition and I am very involved in trying to reduce stigma, fear and all the other crap that you spout about HIV. I am very empowered and Iwant as many other HIV +ve to become empowered. Sounds to me like you (whoever you are) wants a big slice of the HIV budget so that you can create some kind of horror campaign around HIV and HIV meds.
From my dealings with gay men using dating sites (where I always challenge poor information, like the words clean and disease free) many of the younger guys do not want to be educated, and already have incorrect fixed views on HIV. All I get is abuse when I try to correct them when they suggest that an HIV +ve individual is someohw unclean, dirty or diseased. Thats what we are contending with here…
.many young gay men need to take more responsibility, they are all internet savvy and there is plenty of information out there for them, but many choose not to because they do not wish to engage in sexual health slogans as it really is not sexy to think about disease and mortaility when you are horny and drugged up. AS I have said previously your one size fits all appraoch WILL NOT WORK, and it seems to me that you have one agenda here & that is to further your own situation be trying to HIV funding for your own personal gain. I suggest you put together a well rounded proposal and bid for some of the very small pot of cash that is available to the HIV charity Sector.
If you are a supporter of Status Prevention then can we have an updated website with at least some valuable information, and also as we have only seen 2 half hearted campaigns with year, as we to expect something spectacular for 1st Dec. Now on that note I will leave you to your rants, and your abusive tone.
“AS I have said previously your one size fits all appraoch WILL NOT WORK”
Well Well, W6, if you really are not affiliated with the HIV charity sector then you give a damn good impression of one (I mean, quotes like the above are copy and pasted from the media-trained PC HIV charity sector’s hymn book!), and if you really are not “one of them” then throughout this discussion you have been given what amounts to your own personal opinion, which is no more valid or informed than anyone else’s on here who clings to a PC agenda.
Myself? I just subscribe to a common sense approach that puts lives before corporate profits, which is what the entire agenda pushing for gay men to be tested after 15 years of deliberately softening up and cotton-wooling HIV prevention campaigning is all about. You hang yourself by mentioning the House of Lords in your argument against this theory – on the very day that mainstream newspapers are headlining the fact that political lobbying and the “well-oiled…
…revolving door between Whitehall and the corporations” (quoted from today’s Independent) is running rampant and out of control. Voices like yours grow ever weaker and harder to believe as “the 99%” wake up en masse and realize the scale of the greed and corruption that has long gone on as politicians and heads of certain organisations and, yes, HIV charities sold out the rest of us to line their pockets while cosying up to and serving the interests of the 1%.
And where something as serious as HIV is concerned, a one-size-fits-all approach is the ONLY sensible option: an unswerving message advocating safe sex at all times while warning of the potential health risks, shortened life span and social stigma that comes with an HIV diagnosis. It’s BECAUSE THT et al have targeted different sub-groups of gay men in the same media that the messages have become mixed and confusing, leading many to contract the virus. Or was that the plan all along?
Oh yes, who the hell is Peter Scott???
..it may suprise you to learn that there are many HIV positive people like myself that are very well informed & keep up with the latest research & voice our opinions when poor information is peddled as “fact”.
I have an opinion that is based on engaging with both positive and negative individuals, clinicans, activists and plenty of reading and understanding of both HIV, genetics, pharmacology etc. I make the decisions about my HIV care with clinican advice, and this is the way it should be.
If you are familiar with Status Prevention you will know Peter Scott. He has spent a lifetime working in all the major HIV charities, but now spouts the very same language that you do – this leads me to think that you are one and the same, if not go join him in his self serving outfit now that no one else will work with him!
I really am not sure what your agenda here is because as the debate has developed you have become obsessed with corporate issues, and money.
Whatever your politcal affiliations are Samuel they do not belong here in this particular topic, or any topic related to HIV. You either have an axe to grind because you feel you have been somehow failed by the HIVcharity sector, or you have a wider problem with large corporate organisations (its probably both). I am spending time writing here because I want to make a difference and hyave no political agenda.
Your views are not matched by many of the readers and contributors on this thread, and they certainly are not based in reasoned common sense – they are fanatical and quite frankly out of step with all current thinking – you have been unable to answer simpled questions, instead when cornered you have ranted and used deflection tactics – no doubt we will have to endure the same slogans from you such as “PEP being peddled like soap powder” – I have read than in many posts under different names (one and the same I think Rob, or Samual B or William).
“If you are familiar with Status Prevention you will know Peter Scott. He has spent a lifetime working in all the major HIV charities, but now spouts the very same language that you do – this leads me to think that you are one and the same…”
W6, your impudence – or is it just plain ignorance – is almost impossible to fathom. Are you really aware that the general consensus of opinion of gay men is AGAINST the PC policies of the HIV charities? Hell, even most poz men I know are sick to the back teeth of their status being used as a stick to beat those demanding hard-hitting campaigns, based on the well-worn fabrication – LIE – that their feelings would be hurt, when most poz men not be so selfish as to want their sensibilities to be used to prevent gay men getting the graphic messages they need. Only a sick, sociopathic, PC-riddled mindset would keep pushing such a destructive, costly agenda.
Thanks for the background to Peter Scott, someone with a conscience who clearly put his…
…convictions before his career and left the rotten HIV sector and set out to do things the right way. W6, you are living in cloud cuckoo land. The HIV sector was recently condemned for its failings all over the gay press when it was announced that HIV rates had passed the 3000 a year mark for the first time (PN shamefully ignored this story). It even (almost) elicited an apology from Nick Partridge, who (sort of) acknowledged the sector’s failings.
Attitude, Boyz Magazine, Time Out… the weight of the gay press is against the practices and policies of the HIV sector and has been more than vocal in its condemnation, yet you continue to spin lies to the contrary. W6, whoever you are, when the illness and deaths of gay men result from such lies, you revealed as the traitor and disgrace to our community – like others of your ilk – you really are. I guess that more or less confirms what I was saying earlier about sociopathic mindsets making sure their voices are heard above all others.
Oh come on, W6. How many OTHER people am I supposed to be. Peter? Rob? William? Doris? Does it really matter when what is important, surely, is the message, which you do not seem to be hearing, or choosing not to hear. Instead your only way of responding is to ridiculously accuse me of not answering some lame questions which have little validity in this debate and which I am not – get this – required to waste my time in responding to.
Clearly you are running out of places to hide and so resort to the old mind manipulation technique of throwing the reader off course with accusations of Johaan Hari-like skullduggery which you yourself are plainly guilty off (claiming to be someone you are not in order to lurk on forums and shout down all opposing viewpoints. The soap powder analogy I have read in several places – yes, here included – and is so close to the truth it hits home and tends to stick. Accuse me of plagiarism by all means, but stop using that as a distraction from the debate.
Samuel B – thanks for yet more rants, at least you make me laugh with your totally unhinged ideology – you go and be best buddies with Peter Scott, I wish you all the best. As I have said before when placed in a corner all you can do is just be personal and attack with your twisted political agenda – now P**s of and shut the f*** up – enough from you and your vicious crap – there thats my rant and its personal to you because you are just a complete idiot…………………end of!
I just did some research on the campaign you mentioned Samuel – it makes interesting reading but the line that really got my attention was this “Volunteers from the program assisted in developing the campaign and served as models for the ads, which highlighted physical challenges faced by men with HIV from the virus and from side effects of antiviral medications. Four ads were produced, focusing on Facial Wasting, “Crix Belly,” Diarrhea and Night Sweats.
Lets put this into some perspective – Indinavir (Crixivan) is a very old protease inhibitor, that has been rarely used in the UK, as it was very soon superceeded by Kaletra and Atazanavir – these ads were quite frankly taking the p*** out of the individuals that had the dreadful side effects of the early drugs such as DDI, D4T, Indinavir and AZT, that were prescribed in huge doses. Anyone being diagnosed in the UK during the period of 2001 to 2006 WOULD NOT HAVE BEEN GIVEN THESE DRUGS…………….
Mistakes were made, but these poor indivuidals that were used as models for the ad campaign would have been on huge doses of drugs taken several times a day – the side effects and mechanisms were not known at the time, perhaps this is your problem Samuel B – but it was a stark choice between taking the drugs and dying. Efavirenz and Lopinavir were introduced in the late ’90′s and early 2000′s and these drugs did not produce the side effects of facial wasting and other body fat changes.
Diahorrea and night sweats are classis symptoms that are attributable to uncontrolled HIV replication. Even in the period 2001 to 2006 these ads had no bearing on what was actually hasppening with HIV meds and HIV care in the UK. You really are out of touch Samuel but the really dangerous thing is that sadly it is more likely that your twisted message will get through than a measured appraoch – the only difference being that being measured reduces HIV infection rate – sensationalism does not………
I guess by todays standards you would like to see crumbling bone structures, furred up arteries, cancers, stroke victims etc………….these are not only associated with HIV & some meds but also diseases associated with lifestyle – yes if you are HIV positive then this becomes an additional risk factor. I recently did a cadio vascular risk assessment & because I do not smoke then my risk is considered low, yes HIV adds to that risk but no where near as great as smoking does – it doesnt come close.
Reading about the campaign you mention has made me feel quite disgusted that the suffering and dis-figurement was inappropriately used to somehow make the HIV negative population feel better about themselves – it is a complete disgrace – this has nothing to do with being PC as you put it, but all about compassion and showing respect to those people who had no choice but to take the drugs or die – you Samuel are a sick individual for even suggesting such a campaign should be applauded
………….all the metabolic changes including body fat changes are very well understood today, and the second and third generation drugs that are used today are used in much smaller doses and therefore do not have the same effects on the body. Rilpivirine the newest NNRTI recently given FDA approval in the states is doesed at 25mg twice daily. Indinavir was taken at 800mg three times a day no wonder there were dreadful side effects.
Scratch the surface and we get to the truth about these things – I am really angry that someone like you is CONSTANTLY LIVING IN THE PAST & SPOUTING RUBBISH and really putting lives at risk – you should be truely ashamed of yourself – total idiot!!!!!
I have been knocked back at the lack of compassion eminating from people like W6. Does it really matter if a hard hitting hiv campain that depicted images of guys with crix bellys was not representitive of most pos guys in San Francisco during 2001 and 2006? Isn;t the fact that hiv rates plummeted during that time the most important consideration here? Unbelievable!!
Btw Samuel, don;t criticise Pink News for lack of hiv coverage because I have read various articles on this site that have been equally as vocal and comdeming of the hiv sectors’ inadequacies. Wasnt it Pink News that ran an online survey a few years back that found out that over 90 percent of its readers wanted the return of hard hitting hiv campaigns?
Why can;t we have a campain that says HIV will knock 15 years of your life? Such campain don’t have be like the San Francisco one, or do those like W6 point to those as the only example to bolster their argument against when other approaches can be just as effective?
@ NTCFS If you care to read my posting again you will note that I did not say “..not representitive of most pos guys in San Francisco during 2001 and 2006?” I have no idea about HIV in the States, & would not comment on such things. I do not understand why you think I am lacking compassion for the people who appeared in these ads – again perhaps you would like to read the posting more carefully.
It is not correct to say that being HIV positive in the UK today “will knock 15 years off your life” – this is just totally incorrect and many clinicians are now saying that anyone diagnosed early today can expect to live a full life expectancy. I really do not understand why improvements in life expectancy, the management of HIV and medications are talked down by people, surely this is all to the good? I can only conclude that as things improve for the +ve population the scaremongers will have less & less to use in their “hard hitting ads”. This article must be very disapointing for you!
W6, you are proven to be someone with a selective filter who hears only what they want to hear. This story spells out in black and white: men with HIV who contract the virus at age 20 can expect to live on average 45 years, to age 65. The average lifespan of non-HIV-infected men today is 80. Do the math and stop your endless spinning about normal lifespans and how wonderful these toxic drugs are – the same drugs that over time cause liver disease, dementia, heart problems… – or just read the pages of small, dense text that follows HIV drug ads in US magazines.
And NTBFS is clearly referring to your lack of compassion with regard to the fact that it matters not a damn to you that the San Fran ad saw a 20% fall in conversion rates during its run. To you it is more important not to stigmatize HIV, even when ads that depict crix bellies – which WERE commonplace in US gay city ghettos in 2001 – yield such amazing results, which only a sociopath could so coldly and callously dismiss.
Unhinged and irrational Samuel, this sums you up – thats all I have to say to you – now shut the f*** up you idiot. You are nothing more than a waste of time and effort – I will not feed you anything more to troll on dickhead!
‘The only recourse for he who is beaten is to resort to vitriolic abuse and squeals of “You’re not wanted here!”‘
How absolutely pathetic, W6, when the person ranting and raving like a deranged politically correct nutter here has revealed himself to be delusional, paranoid, irrational, insane and a first-rate fantasist. In fact, all the qualifications necessary for landing your ars@ in a plumb, well-paid seat in the HIV sector.
Congratulations, it’s fait accompli for you and good night from me!
Don;t let these hiv evangelists bring you down Sam. The poiint of this Pink News story is that while pos men on average are living 15 years longer on meds there life spans are still 15 less than men who don;t have hiv. Now i don;t claim to be the brightest spark plug in the box but even i know that that means that for everyu pos man that makes it to age 75 (10 more years than average pos lifespan) another will die at age 55 and for every pos man who does get to 80 another will die at 50 and so on. Everyone is different and will react to hiv meds in different ways which is why pos men don;t all pass away at the same age.
With hiv being such a lottery as this then no one in there right mind would risk catching hiv not if they knew they could be dead anywhere between 20 and 50 years time. I read that if a hard hitting campain prevented even just one hiv convertion the money saved on a life time of drugs for that person would pay for that same campain. It is a crazy world we live in.
I am certainly not an HIV activist, and throwing those sort of meaningless dogmatic phrases around is a clear demonstration of the blinkers that you have on when assessing these issues.
I am passionate about HIV prevention, reducing stigma and honesty.
Shame we can’t say the same about you.
With such concentration on HIV, people are forgetting the myriad other loathsome diseased prevalent amongst the immoral community such Hepatitis, HPV (extremely prevalent in the scat community) and oral cancer (prevalent in the lesbian community).
Of course, the only sure way to avoid infection is abstinence until mutually monogamous heterosexual marriage. If this righteous standard were universally applied. Loathsome STDs sauch as AIDs which kills even innocent babies, would disappear.
oh 4 chrissake Keith.
Are u n a crusade 2 ban xmas nxt?
ALL STI’s are n epidemic proportions in young straight society 2! Ppl are just shagging a whole lot more and 2 hell with the consequences. If u get any illness u just gotta takit easy and take care of urself and u have a good opportunity to live a quality life. You musnt let ‘EXPERT’ medics believe ur at theyre mercy. If u become positive find any way u can to live well, be happy and be positive in outlook. It counts for an awful lot with ANY medical condition.
Sorry. I don’t do chav speak. Care to translate?
No, you just bitter without a personailty who makes every effect to bend forward to be on a Gay web site.
Keith – AIDS is not an STI, perhaps you explain to me what the difference between AIDS and HIV is – thats your starter for 10!
Get lost creep.
These are the people who say gays are their enemy, http://www.youtube.com/watch?v=di04_vKfqNw
Stu: You are at it again with your Pro-AIDS-Activist bull. When I say HIV neg, I mean HIV negative in real medical terms, not what the person thinks they might be. HIV does not kill, but it’s presence without medication *will* kill. Not if, but when.
Using semantics and spin to gloss up a disease that has wiped out millions does not become you.
It is well known that ARV’s have side effects, and we simply do not know at this stage how effective they are simply because they haven’t been around long enough, so your guess is as good as anybody else’s as to how efficacious or harmful they may be in the long term. Sure, we are better off than we were 30 years back, but I very much doubt we will see an effective treatment, let alone a cure in at least the next 50 years.
Spanner why do you seem so obsessed about the fact that HIV can lead to advanced infection & therefore possible death. We are lucky in the Western world to have meds to prevent this happening, so all this scarmongering is not helpful. There needs to be a concerted effort to get the 26% of gay men that have HIV & are not aware of it. Most new infections come from undiagnosed +ve individuals. Why not actually discuss what is happening in the here and now, rather than the past.
If you are going to engage in this sort of debate do not use slogans like “pro AIDS activist” – I am no tsure what you mean by this but I find it offensive as an HIV positive person. HIV meds have been around for 25 years and the second generation meds together with the new integrase inhibitors and cell entry inhibitors offer much safer options, and are very tolerable. It simply is not correct to make a sweeping statement that “it is well known that ARV’s have side effects”. I have not suffered any side effects…
… and all my blood results, liver function, cardio-vascular risk, kidney function are all fine. All newly developed modern ARV’s are more tolerable, easier to take and are much less toxic. We know so much more than we did 30 years ago, and things are only set to improve as new drugs and techniques for delivering that drug are developed.
Scaremongering about HIV itself or about meds is not going to encourage more people to get tested – how do we get around that? The earlier people test then the higher their chances of living a very full and long life. Yes as it stands at the moment a 20 year old may only have a life expectancy of reaching 66 BUT as technology develops this will again change. Most people on meds have undetectable viral loads and CD4 cell counts above 400, which is considered within the normal range for someone without HIV. These smaller details are important to consider, but are sadly over looked by those that do not keep up with science and HIV medicine.
Dear WB Bloke, I know it’s much more comfortable putting one’s head in the sand and believing that “It simply is not correct to make a sweeping statement that “it is well known that ARV’s have side effects”. I have not suffered any side effects…”, but saying such things does not MAKE them true. You are very lucky not to have suffered any side effects whatsoever, but do try to consider that you can only speak about side-effects which are discernible to yourself. You can only monitor how you feel and how you look. You are not able to monitor the negative effects of the ingestion of extremely powerful drugs, which are indeed toxins.
Surely, you know that as a person taking HIV meds you need to drink a great deal of water every day to flush your system as much as you are able?
………….I do not consider the meds I take as toxins – that description could be applied to any medication, or indeed illicit drugs, tobacco or alcohol. I really do not understand why anything related to HIV has to be given a negative slant by some individuals. As well as my own experience I have many conversations with other people who are on a variety of meds & apart from some short term side effects, in the main they get on with their lives & HIV does not restrict them.
HIV positive people are probably the most monitored patients going, so any problems are picked up very early and dealt with. Yes I am lucky, but I think it is important to be hopeful about the situation and upbeat as opposed to being miserable and woe is me. There are approx 66,000 people receiving HIV treatment and care in the UK – most of these people get on with thier lives and can expect to live to a good age.
We need to be optimistic about the future in my book! Tell it as it is today not years ago…….
I have never been advised to drink more water by my HIV consultant or my HIV pharmacist – The liver and kidneys break down any foreign substance in the body – from bacterial toxins to paracetamol etc. All HIV positive patients are very well monitored, so I really do not understand the statement you make in relation meds.
If we are talking about meds as they were 25 years ago then this is a very different matter, they were given at high toxic levels, and some people died because of this…………we are not in 2011, and technology has moved on big time. Much more is understood about HIV and meds. We now have many more options of treatment where funding allows, and it is up to the +ve community to fight for the right meds to match personal circumstances. I researched heavily before I started meds because I wanted to get a good combo with few side effects – more people should do this and challenge the paternalistic consultants that still exist.
Like I said before, either you have a potentially life-threatening illness, and people need to be aware of how dangerous it can be, or you have something akin to herpes, in which case shut up about it. You can’t have it both ways and run around screaming “I have an ingrowing toenail, pity me!”
And as I have said before nothing in life is black or white. Instead of being personal and engaging in point scoring enter the debate and consider the statements I have made.
How do you propose we encourage the 22,000 undiagnosed people with HIV to get tested? It’s a straight forward question so a straight forward answer is needed.
I certainly don’t need your pity I am very ok with my situation!
The increase in life expectancy is good news and it is reasonable to think that this trend will continue. I really don’t see the need to discuss irrational anxiety of HIV negative people in the same debate. This news does not have an impact on the negative population but may just may increase testings levels.
I guess the cynics will just say that with increased life expectancy there are bound to be lots more risky behaviour and infections. HIV organisations will never win against such closed and fixed minds!
I have told you already, but you are either too stupid or unwilling to accept my approach.
You scare the living crap out of people and say:
“Be safe, get tested regularly, and if you do turn out to be positive after all that, there is hope. Ignore it and you will almost certainly die.”
It really is as simple and as black and white as that.
No ifs, no buts, no more pussyfooting about.
The research into shock tactics in health promotion show that there may be short term gain but longer term it garners resistance …
Your plan won’t work
Well how do you account for the 22,000 people that have HIV and are undiagnosed -why are these people not taking your advice and getting tested regularly? Please do share your pealrs of wisdom on this one – you could make a lot of money if you can crack this one!
Why is it you have to get personal and call me “stupid”, or make rude remarks about my efforts to help HIV +ve people, as you have dome in other threads. Your thinking and opinions are not based on current scientific evidence – so they are not based in fact – end of. Just recently you were suggesting that “safe” was the wrong word to use and made it clear that the word to use is “safer” – which one is it I wonder, guess it depends on which way the wind is blowing. At least I am consistent in my arguments, and that is because I am cealr about the science of HIV – you are not so please go else where with your HIVphobic undertones and anxieties………………..or keep them to yourself, which shouldnt be too difficult
Life threatening illness if you choose not to take your medication (if it is determined as necessary) and why would you not take it?????
W6_bloke: You are at it again splitting hairs. I said “be safe”, not “have safer sex”.
Being safe can include no penetrative sex or even complete abstinence.
As I said blows in the wind – and whilst the options you suggest may suit you it is rediculous to suggest that others will not have penetrative sex or complely abstain. I am being accurate and consistant in my thinking and approach – and it is very boring actually because I may as well cut and paste because the same drivel comes up all the time. I have now engaged in several HIV related topics and the same anxieties, fears and stigma are dressed up as “facts”.
A good place to start your education on HIV would be Aidsmap.com or even i-base.info/home. I would have expected someone like you who also lives with a chronic illness that is controlled by synthetically made insulin, together with the pain relief you may take for neuropathy, to have a more reasoned approach. At the end of the day HIV is a piece of genetic code, which damages the CD4 cell DNA – rather like the faulty genes that cause the auto immune response in the pancreatic cells which results in lack of insulin production.
First of all, I find your choice of label offensive. AIDS has been chosen by you for particularly emotive reasons or out of sheer ignorance. If you had good up to date knowledge of HIV, then you would never use the label “pro-AIDS-activist bull”. In fact, the simple use of this label is indicative of the bull you are speaking on this issue.
The importance is not so much the snap shot in time when someone may be determined through testing to be HIV negative – because thats all it is a snap shot in time. In the same way, if a diabetic took their blood sugars as 4.5 at 4pm, that does not mean that by 5pm they will still be the same. That 4.5 is only a snap shot in time. Lots of things can impact on that blood sugar and there can be reasons why HIV status can also be affected regardless of the myriad of efforts one might make to prevent HIV (although of course safer sex etc should be practiced). HIV negative is only reliable at the time the test was taken. So, …
… what the person thinks they are is entirely relevant. You may not behave like this (but then we have already established that you choose not to have sex – and this is not a choice many would wish to make) but some will assume that as they are negative if they are also with another negative partner it matters less if there is condom failure … it doesnt … but there are lots of documented cases of people who feel this way. Thus it matters what status people perceive themselves as having.
As I have said to you many times before, if a person is diagnosed as HIV+ and requiring ARVs why the hell would they not take them? Suggesting that the condition would kill them if they did not is about as reasonable as suggesting diabetes is a fatal illness (if the person does not manage their food and insulin intake effectively). Your argument that HIV is therefore a fatal illness in THIS country is virtually redundant.
You can doubt all you like about effective treatment and/or vaccines.
As a matter of fact, I am Type I diabetic and I have hell’s own job managing it.
and you would be dead if you didnt take your insulin
in the same way HIV would kill you if you dont take ARVs
In the same way I suspect you try and maintain control of your diabetes by following a regime, so it is important that an HIV patient follows a regime with their ARVs …
I have a mate who has type one diabetes and also +ve……………………..his diabetes problems far outweigh any HIV related issues, in fact his diabetes has had a huge impact on the meds he is able to take because of kidney problems. He openly says that it will be his diabetes that will be the death of him not his HIV. From what you say I would agree that badly controlled diabetes is much more life threatening than HIV as it has an impact on many systems including Kidney damage, diabetic neuropathy, cardio vascular risk, amputation risk, and severe optical problems. I hypoglyceamic attack is much more life threatening than HIV.
Botrh are controlled by life long medication, and both are fatal, yet you insist that HIV is fatal if you dont take meds – I think your argument has a fatal floor in it as you require insulin several times a day.
The facts are that ARVs can have side effects. Many patients either have none, or very very mild ones. Patients taking insulin, anti hypertensives, asthma medication etc etc all also have chronic conditions some with worse side effects than some on ARVs experience … Yes, in the past there were horrendous side effects. Yes some people have difficult side effects but no where near to the scale that is implied by some of the commentary on side effects.
As with all medications we need to be careful in the management and review of them. But for most people, ARVs are not similar to being on chemotherapy for life. The outcomes of research are currently suggestive of a possible vaccine being ready for testing in the next few years and that treatments can continue to be refined to reduce the side effects (even though the impact is not as severe as it once was in most cases).
Make the cure for HIV possible in our lifetime!
A great video and I would agree that no one way will be an effective cure, it will take a combination of approaches, and I beleive we are at least 10 years away from a possible vaccine. HIV is a very complex virus, and because of its high replication rate and no proff reading mechanism wild type virus will undergo all the mathematical mutations in a 24 hour period – this is a hige challenge, not to mention the difficulty of HIV DNA being embedded in resting CD4 cells that can rest for up to 70 years. It only takes one infected CD4 cell to become activated & it them becomes an HIV factory.
I am always rather cautious about information from the States, having read the Aidsmed forums they seem to have a very different and somewhat sensationalised viewpoint in my opinion (just an opinion). The UK tends to have a more measured approach to research and this is certainly borne out with the information I get from my HIV consultant – again I question and I get answers at every opportunity.
“The primary component of licorice root is glycyrrhizin, and the product may be sold under this name. This herb has antiviral properties and may be active against HIV. It’s also thought to slow the activation of dormant immune cells, preventing the production of more virus. It’s not fully understood how licorice might accomplish this. But several small studies done in the early 1990s on an injectable form of glycyrrhizin seemed to show slower disease development and improved T-cell counts in subjects who were HIV-positive but showed no symptoms. In addition to its immune and antiviral effects, licorice is used to detoxify the liver.
It may also counteract the effects of the long-term use of many of the current antiretroviral drugs, which can do significant damage to the cells of the liver and interfere with the liver’s function.”
The above is a professional medical opinion.
As you say Steve it is just a professional medical opinion – just one opinion. CD4 cell results can only be improved by viral supression which requires ARV’s, this is a very well understood mechanism.
Which antivirals was glycyrrhizin compared to in terms of effacacy?
Can’t believe you don’t know anything about the effects of ARVs, as life-lengthening as they undoubtedly are.
For example, last year the FDA warned that Videx (didanosine) is associated with liver problems. There have been 42 reports linking Videx to a rare liver disorder known as non-cirrotic portal hypertension. In four cases, patients died from liver failure or severe bleeding. Only three patients recovered from the condition, all needing a liver transplant.
You are factually incorrect.
I refer you to this document:
Whilst there were some very difficult effects encountered in a small number of people, the number dying is not as you suggest.
Didanosine is a relatively rarely prescribed form of ARV on the NHS. Any side effects occurring or interactions with other medications occurring should lead a clinical team to review the appropriateness of that particular ARV.
The discussion in this thread has predominantly been about HIV and in the UK. I would be extremely suprised if there is anyone now taking ddI (videx) in the uk today. There is no reason to keep anyone on this NRTI, and any HIV consultant worth his salt would never prescribe ddI today and will have switched ddI for another NRTI. The standard NRTI bakbone used in HIV treamtment today is either Truvada, Kivexa, or possibly Combivir for women who are wishing to get pregant or are pregant.
Why do commentators have to go back to the past – I have clearly stated previously that drugs like ddI, D4T, AZT and Indinavir were very early drugs that were dosed several times a day at very high doses (this dose not apply to Videx). Videx was the 2nd NRTI to be approved by the FDA in 1989 – I would be very suprised if it is wudely used in the states. Incidently the 43 cases you quote are post marketing – which is over a period of 22 years…….can we not be upto date and not look backwards to suit…
……..individuals that have irrational fears of both HIV and the meds. HIV care has moved on tremendously, and are you seriously telling me that you would use Videx as an example of the type of drug newly diagnosed individuals would be expected to take today in 2011 in the UK – I hope the answer is no, but I am having my doubts, I really am! It is a no brainer to think that a drug that was first launched 22 years ago would still be widely used in the Western world. Using outdated examples of the dreadful side effects of early HIV meds is just irresponsible and only serves the individuals that want to talk down the advances in HIV medicine. I look forward to the time when life expectancy is without doubt the same as any other individual.
The real scandel here is that only the few informed are interested in the undiagnosed +ve indeividuals in the UK, these people will present late and will be very unwell – using examples such as Videx will not help this, why don’t people get it?
Just taken this paragraph from an i-base Q&A and this is the quote:
“Having HIV is never easy but it is important for you to know that with today’s drugs, HIV is a treatable and manageable infection. HIV treatment can give you a near normal life expectancy and a good quality of life. Nobody can say what the exact life expectancy in a situation like this are, as there are too many factors that can play a role. How long anyone lives depends on things you can change (smoking, exercise, medication) and thing you can’t (genetics and bad luck). A study in Denmark (2005) has estimated that the survival is more than 35 years for a young person diagnosed with HIV infection and another study in Canada (2003) has shown that in the US, life expectancy at age 20 years was 58.3 years.”
I would add that as the health care system in the US is very different to that of the UK, it is reasonable to expect life expectancy to be somewhat reduced, as not everyone in the US has access to good meds!
There is no doubt that in the next 10 years we will see similar improvments in life expectancy, which will mean there will be no difference between HIV +ve / -ve individuals……this is very good news and shows how far HIV medicine has developed in the 25 years since the first AVY Zidovudine (AZT) was given FDA approval in the states.
The next step forward will be to reduce the undiagnosed population which is approximately 22,000 in the UK (25 % of all infections). This is a key plank of reducing forward transmissions and also improving life expectancy – early diagnosis = much better outcomes. Also the population viral load will be reduced and this will also help contain more new infections.
Condoms & treatment as prevention will when combined also help stem the level of new infections – we must do more on stigma to increase testing rates, and also counter the myths about HIV treatment as it stands today………This is a balanced and reasonable approach.
W6_bloke, read up on inflammation of internal organs and HIV, and study results of autopsies of the brains of HIV+ persons who have died regardless of ARVs.
Charles – I do not need to read up on the areas you mention as I am very aware of the systemic effects viral replication has on the body in general – the point I am trying to get across here is that we should try and keep things in perspective and not sensationalise every possible problem that could be connected with HIV infection. Individuals taking modern ARV’s with an undetectable viral load are much less likely to encounter serious health related problems – this was very well demonstarted in the SMART study.
I make no appology for not being optimistic about the long term prognosis of people with HIV. Yes some people will not fair so well, but this is true of any illness. Are you really saying that everyone with HIV should just be waiting for the next problem to come along? Are we not allowed to be in good health? I really do not understand this perception that people with HIV are very unwell – we are not!………………………..
…….is it not feasible that this trend in life expectancy will continue over the next ten years? Cancer outcomes are much better than they used to be, this is applauded – why can we not do the same for HIV I ask myself?
It is almost like there is an undertone that people with HIV do not deserve to be healthy and live to a good age – I really really don’t get it. The problem seems to be that because I am optimistic about the future this somehow makes me unconcerned about infection rates – anyone reading my posts can see that this is not the case, but by demonising HIV there is nothing to be gained. That is my view and it would take some very good consistant evidence to change this!
…….I would also add Charles, that HIV positive individuals are very closely monitored for any systemic problems, liver function, kidney function, cholesterol, triglycerides, full blood counts, cardio cascular risk, bone profile etc etc – these are very much standard tests these days and are at least completed every year, and more frequently when people start taking meds. I now only go to my clinic twice a year, and that is to get my home delivery prescription renewed. I arrange my blood checks and get my results and if I need to see my consultant then I do – if not I see a nurse practitioner. Many many of my friends and people I know do exactly the same, to me this is good progress and also suggests that HIV infection when well managed is and will continue to be a treatable chonic condition. What is your experience of living wuth HIV Charles?
And don’r say I’m lucky because luck dosent often come into it in my experience!
And things can only get better…..