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Another week, another HIV ‘cure’ story – but is the focus on a possible cure or vaccine distracting us from focusing on the problem at hand?

pillsEvery week, without fail, there’s a big piece of news about a possible cure for HIV. It doesn’t matter whether it’s a new drug, an existing treatment administered differently or some vegetable root – people get excited about it and then very quickly forget about it once it’s proven wrong or goes off for further scrutiny.

Every week, without fail, I speak to hundreds of people who lack basic knowledge about HIV, how it’s prevented and how it’s treated – worrying stuff. But what worries me further still is the number of people who think that there’s a cure out there that they can take, should they get infected.

It’s not just HIV negative people who believe this to be true either. Through the peer support work I’ve done over the years I’ve met dozens of HIV positive people who’re deliberately putting off starting their life saving HIV treatment because they believe that there’s a cure right around the corner.

Could it be that our fascination with a possible cure, and the media’s need to shout it from the roof top every time there’s a glimmer of hope (no matter how unsubstantiated) is causing the general public to believe we either already have a cure – or that one is just weeks or months away?

Perhaps we should be focusing on what’s going on now, right this minute? The fact is that there is no cure and no vaccine. There are 100,000 people in the UK living with HIV (22,000 of those undiagnosed) – with a whopping 6,360 people diagnosed in 2013 alone.

Even if a cure was discovered today, it would take at least five to ten years of multi-phase clinic trials, randomised studies and approval processes before it go to market. What we need to do is focus on the best possible prevention techniques and information for those who are HIV negative and the best possible care and support for those who are HIV positive.

We need to look to newer, more effective and more tolerable HIV therapies, we need to talk more about Treatment As Prevention (TASP) which can reduce the risk of onwards transmission by up to 96%, we need to talk more about Pre-Exposure Prophylaxis (PrEP)  for at risk people which can reduce the chance of infection by about 50% (study/trial results vary), we need to talk more about refining condoms to make them easier and more enjoyable, and we need to talk about HIV more as a society.

HIV is here, and in a big way. If we lose sight of what’s happening now, if we focus only on a what might possibly perhaps happen ten years down the line we’re going to end up in a place where no cure can help us.

Tom Hayes (@UKPositiveLad on twitter)
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8 COMMENTS

  1. Great post!

    I completely agree with you that we need to talk a lot more about a lot a things. The problem in the UK is that there is very little advocacy and activism when it comes to HIV prevention.

    The nature and greatness of our NHS also make it difficult to talk about new options that are not available because of cost (PrEP) or still in development (Rectal Microbicides).

    Results: we are lagging behind pretty much the rest of the world re-ashing old messages and approaches that barely contain the epidemic.

    We not only need new voices, but also more voices, and a willingness to question and challenges all strata of the society.

  2. In the article it says that PrEP can reduce the risk of infection by 50%. I don’t think this is correct.

    HIV Expert Professor Sheena McCormack was interviewed recently by BASELINE and she said; ‘Taking all the studies together effectiveness [of PrEP] is estimated to be 90% when drug is detected.’

    The interview is available here. http://www.baseline-hiv.co.uk/hiv-articles/2013/11/5/prep-gets-real

    I am not sure that the assertion in the comment that PrEP is not available due to cost is accurate; PrEP is unlicensed in the UK and is still in clinical trials (the PROUD study). Uptake in the US (where it is licensed) has been slow. Again in the interview Prof. McCormack predicts that high volume uptake of PrEP (with the cost implications that brings) is unlikely.

    • We did read this piece, but we’ve also both read pieces from other experts and seen presentations in the EU and UN which peg the efficacy of PrEP much lower than 90% in real life conditions.

      Is it wise to say something is 90% effective at reducing HIV infection when so many studies are still at odds?

      • All these studies need to be looked at very very carefully. Only a few have actually published results so far and the rest (eg UK Proud Study) are ongoing.

        This is from the CDC which I believe includes data from all the studies completed so far:

        http://www.cdc.gov/hiv/prevention/research/prep/

        The iPrEX study did indeed only find a 44% level of protection comparing those taking Truvada and and those in the placebo group. However, among those genuinely taking the real pills and with detectable levels in the blood the protection was 90%. Among those taking them every day the protection level was as high as 99%. The sample was very large – nearly 2500 and comprised of gay and bisexual men and transgender women mainly from South America. More detail on it and other studies here.

        http://i-base.info/htb/16327

        In the Partners Study of heterosexuals in East Africa the overall protection level was higher than iPrEX at 75%. The level of protection was lower among women than men though. However, among those with detectable levels of Truvada in their blood (ie those actually taking them) the protection level was 90% – the same level as found in the IPrex study. Lower levels of protection were found among those using tenofovir only (respectively 67% overall and 86% among those taking the drug).

        There were two studies which did not show any protection FEM-PrEP and VOICE, but both showed that few were actually taking the pills so that is not surprising.

        Finally the Bangkok Study using tenofovir only showed an overall reduction of 49%, similar to iPrEX but among those taking the drug consistently the protection level was 74% – this is not Truvada though which contains both tenofovir and emtricitabine.

        All these studies show similar results in that the level of protection is heavily dependent on the level of compliance which can be poor. Where Truvada is taken consistently the evidence shows that the level of protection is high.

        The Proud Study is not so much concerned with whether the drug works or not if taken properly – they already know that. What they seem mainly interested in trying to find out is if people are more likely to take the drugs more consistently if they know they are getting the real thing (people in other studies did not) and if there is a increase in sex without condoms and an increase in the number of other STIs increasing costs to the NHS.

        There is a lot of hostility to PrEP in some quarters so I am not surprised that some at conferences are throwing cold water over it esp by advocates of a rigid condom code. There are also concerns about cost but in reality there is no rush to take these pills even where available eg the USA. PrEP should not be hyped of course but I do not think that it should be belittled either. Condoms do not give 100% protection either and are rarely used for oral sex anyway and we all know that.

    • PrEp, a misnomer, does not need to be “licensed” in the UK. The drugs used are already licensed (i.e. Truvada). What is different is the prescription, called an off-label use. Some doctors are already prescribing, at a cost, in private settings.

      However should PrEP be made availableon the NHS, it would have to be provided for free, which is not sonething the current commissioner is prepared to do. And this is why the PROUD study is being conducted.

      And I fully agree with Prof McCormack, there will be no queue for PrEP in frint of the clinic, which is all the more a reason to make it available.

      for more info see http://i-base.info/qa/7449

  3. The problem is not talking about such research – which is important – but hype. Such things get hyped especially in the media. Then hey presto the results come out and another failure.

    AZT got hyped and in the end they realised that on its own it did little if any good.

    A cure is not unthinkable. For centuries Syphilis was regarded as intractable. The treatments were awful – first mercury and then an arsenic based compound called Salvarsan. When penicillin started being widely used the death rate dropped rapidly and Tertiary Syphilis which is just as horrific in its effects as AIDS is thankfully now rare.

    About delays I am afraid you are right. Penicillin was actually discovered as far back as 1928 in St Mary’s Paddington at a time when deaths from Syphilis were running at tens of thousands a year. It was not produced on a mass scale until 1944. This was because of the DD landings and the concerns about what soldiers might get up to and catch as they had in the previous World War. Amazing how slowly and how fast they can move at different times when it suits them.

    Of course we are not aware of any such drug in the pipeline that can tackle retroviruses. That is not a reason not to talk about such research but as I said it should not be hyped. People angling for the next Nobel Prize in Physiology or Medicine (which is what Fleming got for the discovery of Penicillin) should not let their egos run away with themselves – not that anyone should begrudge that to them if they succeed. If that does happen it is likely to be some accidental discovery like Fleming’s, not the culmination of some media circus.

    Of course there are other things that need to be talked about. If the din and hype about hypothetical cures and vaccines is drowning out other issues in the mass media then that is a very bad thing.

  4. I agree that talk about cures can be more damaging than helpful.

    I can understand why people might believe a cure already exists, to someone who just reads the odd new article here and there, the frequency of these cure headlines would surely be enough to make them believe that a cure must be really close by now.

    We need another big public awareness campaign in the UK. We’ve a mix of people in this country with some believing HIV is curable, and others still believing it’s death sentence.

  5. Look back at the past ten years’ progress: way more than we expected. I choose ten because it’s a nice round number and coincides with the last time I took ritonavir at its high dose. We’re demanding far more of our drugs that they simply keep us alive: I was warned at the end of the nineties that they were getting reports of metabolic changes and even diabetes taking the dose I was waking. “I’ll worry about that when/if it happens. I expected to be dead long before that was an issue for me: ritonavir’s job was to keep me alive a little longer. Of course, now it’s happened, I’m bloody furious that it has happened (the more so because my clinic chose not to tell me). But hit shappens.

    Where there is disease, there is snake oil. I remember a substance called AL721 making the front page headline of Capital Gay, what was then London’s only free-sheet. Like mega-vitamin C therapy, like so many “alternative” therapies, you were lucky to get away with anything more than a touch of the squits.

    Two lessons from the past thirty odd years: (one) if it looks too good to be true, then it almost certainly is, and
    (two) use what we’ve got here and now, without worrying about what’s going to come along in five or ten years time.

    Condom usage has never been that high, even in the eighties, however much lip-service we’ve paid to it. The answer isn’t condom saturation: the answer is to test and treat. If someone tests positive, they do the best they can to get that viral load undetectable. Better for the PwHIV, better for whoever they’re having sex with.

    The price to be paid is a vanishingly small chance of getting HIV (which is why I believe in both TasP and PrEP: the responsibility is halved/belt and braces), plus a range of goodies in terms on STIs: in the seventies it was simply accepted that if you were sexually active, you had a check-up every three months.

    Concentrate on what we’ve got now: PrEP considered so efficacious that the USA have released it for general prescription. TasP that’s capable of knocking your viral load to literally zero (not a cure, by any means, but it renders you essentially uninfectious). More drugs in the pipeline, with the promise of fewer side effects (not that today’s drugs appear to have much of in the way of side effects to an old drug whore like me)

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