unPrEPared

I’ve been slightly unprepared this week, I’m not used to saying “no” to people who want help raising awareness about HIV, but in the past seven days I’ve found myself doing it more times than in the whole five years I’ve been living with HIV. It probably won’t surprise many of you that this is due to a contentious issue… and that issue is PrEP.

 

In the past week a community statement on PrEP has been released with many people and organisations backing the call for the NHS to make it available in the UK asap and asking supporters to sign it.

 

PrEP is a sticky tape solution, a “that’ll do for now” or “for the time being”. And we’re rushing into it without considering the consequences because we’re running scared of the increasing prevalence of HIV in certain demographics, in the UK it’s MSM.

 

I’ve spoken before about a number of concerns I have with it but to quote the statement

 

“Research suggests that PrEP is as effective as condoms in preventing HIV transmission, as long as the pills are taken regularly, as directed

 

They won’t be. How many of us start a vitamin regime, believing we will stick to it, then you miss a day, then another. Before long the bottle is gathering dust. Or those with strong will power you finish it, you say to yourself you’ll pick up some more on the way home, then you forget. It’s all well and good relying on data from a trial, but people are more likely to adhere when “someone’s watching them” and actively reminding them of the process due to the appointments, the surveys, the tests etc. It’s a different ball game when you’re going it alone.

 

PrEP does not prevent other sexually transmitted infections or pregnancy

 

What is the point in creating a prevention tool that only applies to one disease? What’s the use in it being as effective as condoms if it has ZERO effectiveness on combating syphilis, gonorrhoea, chlamydia etc? We all like to think of HIV as the ‘biggy’ but the others are still a danger to our health, how long until we have an antibiotic-resistant strain of one of the other viruses on our hands?

 

Studies of PrEP have consistently reported that being on PrEP did not result in people adopting riskier behaviours

 

As I mentioned above, a study or trial will tell you a wonder of things but that doesn’t necessarily mean that will translate the same in the real world. How many of us are guilty of lying to our doctors, knocking off numbers against alcohol units, numbers of sexual partners or adding them to hours of exercise or the fruit and veg portions we’re eating.

 

We need to know what’s driving the numbers up, we need to know why condom use is declining, why people are now more commonly and openly actively seeking out unprotected sex. I was talking to a HIV positive friend last week, roll back five years ago we could hardly remember anyone actually publically looking for unprotected sex, it was something that happened by accident, or spare of the moment. Granted an odd guy online or on apps would ask for it, but now it’s all too commonly sought out, like a fetish or a kink. It’s a personal choice for those people to make but why are we not asking them WHY? Yes it feels better to a lot of people – but why is this worth the risk to their health? Is it just online fantasy? Is it a lack of education, peer pressure, because it’s ‘wrong/bad/forbidden’ or is it because people think HIV is simply solved with a pill a day?

 

I don’t know. We don’t know. And PrEP isn’t going to provide the answer.

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3 thoughts on “unPrEPared

  1. Roger Kint says:

    Firstly a couple of qualifiers:

    I too have HIV; I don’t think that makes me an expert on this, what follows is just my opinion.
    I was on the PROUD study, in the deferred cell, and contracted HIV in that first year of the study, so I do know a fair bit about how it was conducted.

    I realise that this may sound a little “ranty” as it’s text online rather than a calm conversation in person and I just want to say from the off, please give me the benefit of the doubt that I’m not trying to have a go at you; I’m just trying to point out the faults in your argument and have a sensible debate about a topic I too feel quite passionate about. None of this is a personal attack on you and I greatly applaud your willingness to engage in the debate.

    Now to comment on a few of your points:

    1. “PrEP is a sticky tape solution”. No it isn’t. Prevention through treatment is a sensible and viable way of reducing the rate of infection. Several studies have shown it can reduce infection rates from anywhere from 40% to 80% (see http://link.springer.com/article/10.1007/s11904-014-0234-8 page 2 for four trials that showed significant reductions) and that’s the main aim. A cure would be lovely too, but we’re never going to eradicate HIV. Very few diseases follow a manageable framework that would allow them to be eradicated – smallpox was a great success but the WHO have also tried similar programmes for Cholera, TB, Syphilis, Ebola, to name a few and all are still around. Reducing the transmission rate is a very worthwhile goal.

    2. “And we’re rushing into it without considering the consequences ” Really? You think more than five years of dozens of medical trials is rushing and that they aren’t considering the consequences? I don’t. They are acutely aware of the impact of discovering a cure for chlamydia had on the infection rates for other diseases, and that’s a key component of the studies; to find out what the impact is on other health scenarios. But even if prevalence of gonno and chlamydia go up, is that not still preferable from a Global Health initiative point of view? What’s the cost of treating someone for the clap vs a life time of HAART? Public health has a responsibility to provide the most effective and efficient treatment available. That’s why people go through Chemo, because the horrendous side effects of that treatment are still better than the alternative.

    3. The pills won’t be taken regularly. What evidence do you have of this? I have five medical trials where people DID take them regularly, or at least regularly enough to cause at a minimum a 40% reduction in transmissions. That sounds pretty good to me. These aren’t vitamin pills (which, for the record, have no impact what-so-ever unless you are significantly malnourished already, and even then the evidence is weak that they help at all. Eat some fruit and nuts instead). You can’t compare anecdotes about people thinking of taking a nutritional supplement with a medical intervention than could prevent contagion of a chronic illness; the engagement with the consequences is hugely different.

    4. Trial conditions are not real. “It’s all well and good relying on data from a trial, but people are more likely to adhere when “someone’s watching them” and actively reminding them of the process due to the appointments” The PROUD study had 6-monthly check ups and no reminders about taking pills or filling in surveys. That’s not often enough to significantly impact your behaviour, and even if it made you think twice about who you hooked up with the same implementation bias exists for both tranches and so your point is entirely without validity.

    5. “What is the point in creating a prevention tool that only applies to one disease?” Seriously? This one is just ridiculous. Are you saying antibiotics should be shunned because some of them only cure one infection? All interventions have a primary case; you’re very lucky if they work for something else too.

    6. “What’s the use in it being as effective as condoms if it has ZERO effectiveness on combating syphilis, gonorrhoea, chlamydia etc?” Because it reduces the huge problem of HIV? That isn’t enough for you? You seem to be conflating global health challenges and individual disease control. Just because we have an option that can massively reduce the HIV/AIDS epidemic it doesn’t mean that medical science is accepting all other diseases as “things we will just have to live with”. More than one thing can be tackled using more than one intervention.

    7. “How many of us are guilty of lying to our doctors” See point 4; any impact from this that you see in the test group is also present in the control group. That’s why you have a control group.

    8. “we need to know why condom use is declining” Is it? Again, what evidence do you have? How do you know that people aren’t just being more honest about their sexual preferences now? I’ve certainly had plenty of people message me on Grindr and a plethora of other apps and sites whose profiles have “SAFE SEX ONLY” carved into them but they ask for bareback sex. It could be a cultural shift in acceptance. But even if condom use is declining, why does that make a significant intervention like PrEP or TasP less worthwhile?

    All of your points seem to stem from a lack of understanding of how medical trials are conducted, how research bias is accounted for, and they seem to weight anecdotal evidence that you and a friend have come up with far higher than years of evidence collected from thousands of individuals and subjected to strenuous statistical and methodological rigour by people who dedicate their lives to making the right choice, not the “gut feeling” choice. Please, take a step back and think about that. Accept that your view is highly biased by your personal experience and that maybe, just maybe, the experts are doing their jobs correctly.

    Thanks.

  2. incidence0 says:

    Dear Alex,

    Following our brief exchange on Twitter, I thought it would be better to engage with you on your blog.
    PrEP is a contentious issue. And we must ask ourselves why it is so? From an evidence-based perspective there is little doubt that PrEP work for the prevention of HIV. Even those are opposed to it acknowledge it (see Dr Whitaker’s blog on the BMJ, and my response on my blog).

    You are raising a number of point that I would like to address:
    PrEP is a “that’ll do for now” answer to a bigger problem. True, the rate of HIV infection among the MSM in the UK won’t be solved by PrEP alone. But withholding or delaying PrEP is not going to solve all the problem either.

    PrEP works as long as it is taken regularly as directed. True, adherence is key to PrEP efficacy. Seven trials have demonstrated this. But then you sau pills won’t be taken as directed.
    There are two problem with this:

    First, it is dismissive of gay men willingness to protect themselves against HIV. Remember, the same was said about HIV treatment in Africa: African don’t have watch, they won’t stick to treatment. Actually Africa is doing as well if not better than Europe when it comes to Adherence to Treatment (I refer you to the latest UNAIDS report for this).

    Second: we don’t know yet how adherent people must be to PrEP in order for it to work. It seems that both PROUD, which was testing a daily regimen, and IPERGAY, which was testing an intermittent regimen work. SO though daily PrEP, or peri-coital PrEP are currently efficacious.

    Again to quote Jared Beaten, who was the investigator on many PrEP Study: “You don’t always have to be perfect to be good enough.”
    But more critically, the same apply to the only prevention method we currently have: condoms. Replace PrEP by condoms in your paragraph starting with “They won’t be.” And you would reach the conclusion that condoms should not be provided because people will not use them all the time.

    Then there is the issue of PrEP not being efficacious against other STIs. Again your premise is correct. PrEP does not prevent syphilis, gonorrhoea, chlamydia etc.. but neither does sex without condoms…
    But what PrEP offers is an opportunity to engage with people who struggle using condoms If they chose PrEP (and they may later change their mind) they will be tested regularly for other STIs, which are not life-threatening, and do not require life-long treatment with all the stigma attached to it.

    PrEP is not going to provide an answer to the list of questions (all valid) that you ask at the end of your post, but PrEP will do one thing for those who chose to use it: it will protect them against HIV.

    Rest assures that I respect your right to express your opinion. But you have to be mindful of how it will impact those who may be good candidate for PrEP. Telling them that PrEP will not protect them against other STIs or that it will need to be taken as directed for it to work, will have to be part of the provision or PrEP. As the Act Up statement said:
    “The pill itself is not enough: just as with condoms, PrEP must be provided alongside other ongoing services, including testing, education, and peer support.”

    And THIS, if done properly, will address your concerns.

    Yours sincerely,
    Roger

  3. Roger Pebody says:

    Hi Alex

    I think that one of the unintended consequences of years of prevention messaging has been to focus on the condom as the only solution to a problem. People get worried about whether a condom has been used or not, rather than whether a person contracts a life-changing virus or not.

    Let’s be clear: the thing to avoid is HIV infection. Our efforts should be directed against HIV, not non-condom use.

    There’s an idea that using a condom is ‘responsible’ and that we want people to be responsible. I’d say that if we’re concerned about responsibility, then the responsible thing to do is to find a way, some way, perhaps almost any ethical way to avoid getting this virus.

    Some could do it through condom use, some with serial monogamy and careful HIV testing, some through having very few partners, some by knowing that their partner has an undetectable viral load and no STIs, some with PrEP, some with some other prevention technology that hasn’t been invented yet.

    When people present condoms as the only valid way to prevent HIV, they often imply that 100% use is easily achievable. The truth is that while many people have been able to use condoms consistently, many more have not, and no health promotion or public health programme has found a way to instil consistent use across a population.

    The simple truth is that lots of people have problems using condoms all the time. In other words, ‘adherence’ is not a problem that is unique to PrEP.

    You talk about PrEP being a sticky tape solution. You’re right that it won’t, on its own, deal with the deeper problems of some men’s poor mental health, self-destructive lifestyles and STIs. But neither will condoms.

    It’s worth remembering that plenty of conservative or religious people would argue that the condom is only a sticky tape solution. They would say that gay men should stop having sex with men altogether, or just stick to one partner. They would say that the condom is a technical fix to a problem of promiscuous lifestyles.

    I hate their view of morality and their language, but in some ways they are right. Condoms are a harm reduction measure. They give us a way to continue to have sex with lots of different partners who we don’t necessarily know very well, with a much lower risk of HIV and some STIs.

    In fact condoms and PrEP are very similar in plenty of ways – technical fixes that don’t force someone to make big changes to their sexual lifestyle; things that only work when they are used consistently; things that don’t resolve every problem associated with sex; things that can prevent HIV infection.

    all the best
    Roger

    PS why are the three responses to your blog all from people called Roger? Weird!!

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