Saturday, 23 August 2014
This article was first published on TheGayUK a week ago, and I have to say I have been astonished and saddened by some of the negative and downright vitriolic responses I have received. I had not realised till then how polarised the gay community is regarding HIV, and how the disease is still stigmatised and discriminated against within our own community. In the constant battle against HIV and AIDS, how anybody can see the discovery of PrEP as anything but a good thing is completely and utterly beyond me.
So why are so many gay men adamantly opposed to PrEP, the daily dose of the anti-retroviral drug Truvada, which is at least 90% effective at protecting against HIV? Indeed, according to a recent iPrEx open-label extension (iPrEx OLE), to date the largest demonstration project of HIV Pre-Exposure Prophylaxis, daily taking of Truvada could be as much as 99% effective.
This is a question I’ve been asking myself quite a lot recently, especially after reading some negative articles in the press and one, by Joshua Vaughan here in TheGayUK a couple of weeks ago, which was actually inaccurate on several points.
About nine months ago, the GUM clinic I regularly attend (the Working Men’s Project at St Mary’s in Paddington) offered me the chance to be part of the PROUD study, which examines the impact on gay men of using Pre-Exposure Prophylaxis (PrEP), and I jumped at the chance, not only because I wanted to do my bit for the community, but because it offered me an extra level of protection against HIV, regardless of whether I was using condoms or not.
Before moving on to the whys, let me tackle some of the issues and downright inaccuracies in Vaughan’s article. Rather than rely on hearsay and prejudice, I spoke to Professor Sheena McCormack, the lead doctor for the PROUD study, who is also Consultant Physician at 56 Dean Street.
Vaughan states that there has been a significant drop in HIV transmission rates between 2001 and 2012, but though this is true globally, there has been no drop in the rates amongst gay men, and there is evidence to suggest that, on the contrary, they are rising. This may have something to do with an increase in the number of gay men presenting themselves for testing, but it is worrying none the less. Vaughan also enumerates at length the terrible side effects which can accompany the taking of Truvada, but fails to mention that those that suffer these side effects constitute only a small proportion of those taking the drug. A recent large study of over 4000 HIV negative men and women in Kenya and Uganda, found that there were very few significant differences when compared to placebo, and only a minority (less than 10%) of HIV positive people taking it in combination with a third drug discontinue because of side effects due to Truvada . Anyone taking Truvada for PrEP who suffers side effects can simply stop taking it, but so far, according to Professor McCormack, only one person has stopped because of problems with the medication.
Vaughan states “The WHO believe that medicating ALL homosexual men will provide an additional method of preventing infection. Along with condom use and regular testing. But activists have suggested that introducing government mandated antiretroviral would discourage the use of condoms, currently the best method to prevent the transmission of sexually transmitted infections. Resulting in an increase of other sexually transmitted infections such as gonorrhea, chlamydia and hepatitis in the gay community.” First of all, the WHO is not saying that all gay men should be given PrEP, but that they should be offered it, which is slightly different. Nor has any of the data surrounding possible increases in other sexually transmitted diseases been analysed yet, though the Partners PrEP study suggested no significant change in behaviour.
Regarding the cost, I have no idea from where Vaughan plucks his figure of £10,000 per person per year, but Professor McCormack assures me this is far beyond the mark. Though it would be difficult to put an exact figure on it, because of the National Health’s buying power and their ability to get large discounts, the figure is more likely to be in the range of £5,000. Already it is being offered in the private sector for around £500 per month. He says this is a lot of money to spend on a preventable disease, but that is exactly what the medication is for, and, with a 90% (and possibly even a 99%) success rate, it actually makes it more successful than condoms.
To quote from a United States C.D.C. study of 2013, “We are also unclear about to what extent condoms actually prevent HIV transmission in anal sex. This last fact may seem surprising, given that condoms have been recommended since the mid-1980s as the only effective HIV prevention method for gay men who have anal sex. In fact, there is only one large study in gay men, dating from 1989. In this study of 2914 gay men, HIV incidence among those who said they used condoms 100% of the time was 70% lower than in men who did not use them at all. There has been one small study in the era of antiretroviral treatment (ART), which found an efficacy of approximately 75%.”
Vaughan states that introducing the drugs could run the risk of the virus evolving immunity to the drug, but this is in fact only likely in cases where a participant is seroconverting when they start taking the medication. It can also be a problem for HIV positive people who have a gap in their treatment, this being a particular problem in parts of Africa where people have to travel miles to get their medication and end up missing doses.
So, given so many positives, how can offering PrEP be a bad thing, and why is there so much resistance within the gay community? Professor McCormack is mystified. “This is a good thing,” she tells me, adding that most of her colleagues that work in Sub-Saharan Africa (who are friends and mainly female and straight!) queried why WHO did not specifically mention women in the recent consolidated guidance. And indeed we ought not to ignore the needs of other communities that have been shown to benefit from PrEP, including intravenous drug users, and heterosexual men and women.
We can bang on as much as we like about better, more targeted sex education in schools, but there is little to suggest it would have a major impact on the epidemic. It has had little effect on unwanted pregnancies, even though no-one leaves school without knowing where to go for contraception. It may be that the UK’s problems come down to an age-old embarrassment about talking about sex. In countries like the Netherlands and Scandinavia, where they have traditionally been more open and matter of fact about sex, teenage pregnancies and STD infection rates amongst young people are far lower. The problem could be more cultural than anything else.
Coincidentally, I think that most of the resistance to PrEP boils down to shame about admitting to enjoying condom free sex. In the study on condom use cited above that figure of 70% was amongst gay men who said they used condoms 100% of the time. My italics. How many of those were actually lying, or conveniently forgetting that time when the condom broke, or they indulged in dipping, or actually didn’t use a condom at all because they were drunk or high?
Gay sex itself has been about shame for a long time. It wasn’t that long ago that it became decriminalised here and in most Western countries, and in many countries around the world it is still against the law. After it was decriminalised, there was a brief period when gay sex was fun and the only risk it carried was the possibility of picking up an easily treatable STD. Then in the 1980s it became shameful again as we discovered it was one of the transmission routes for a deadly disease. Many people died because of it, and it took a lot of time, and a lot of campaigning, for gay men to take on the safer sex message. Before that time condoms were for preventing babies tout court. No gay man would ever consider using one, but, as our brothers started to die around us, we realised it was either put a rubber on it or become another statistic. Gay sex was shameful again. The advice was cut down on partners, use condoms or die. I remember for a few years I pretty much gave up sex altogether, with or without condoms.
Then the new combination treatments came along and people began to survive, though many of those first drugs had some pretty terrible side effects. But the advances in the last 10 years or so have been immeasurable. People don’t die anymore. Nor do the new treatments have such terrible consequences. People with HIV can now live a normal life. What’s more, whereas once it was deemed better to hold off treatment as long as possible, because of the toxicity of the drugs, now it is better to get people onto therapy as soon as possible as the therapy quickly brings down their viral load to undetectable, which means they cannot pass on the virus.
It is of course quite possible that the fact that we are no longer seeing people suffering or dying around us had made us complacent, and this could be the reason we are seeing higher rates of HIV incidence amongst gay men. I’ll admit it; I was taking the odd risk that I wouldn’t have taken even 5 years ago. It may have been a calculated risk, but it was a risk nonetheless.
Why take the risk at all, you might ask. Well, because I don’t like condoms. For years I have been having sex and not really enjoying it because I have had to use a condom. But even on those occasions I took a calculated risk, enjoyment was difficult because there was always a doubt at the back of my mind. We may have discussed it, but how sure were we? Could I, or the person I was with, actually unknowingly have the virus and pass it on? We may have both tested negative recently, but how sure were we? And so on.
Two years ago I wrote an article condemning the indiscriminate practice of barebacking, but the landscape has changed completely since then. There is still much in that article I agree with, and I have not ditched the condoms altogether. I rarely fuck or get fucked at a sex club, but if I did I would still use a condom. Though, pre-AIDS, I would never have dreamed of using condoms, I would only now go bareback with someone I had a more intimate relationship with. What PrEP does is it removes that lingering anxiety, and how liberating that is.
I’ll give you an example. A couple of days ago I had sex with a guy I have known now for about a year, a fuck buddy rather than a relationship if you want to put a label on it (I don’t). We have always used condoms before, even though we are both sure we are negative. On this occasion we didn’t, and the knowledge that I am on PrEP allowed us to have the kind of joyful, unbridled pleasure in each other that we had both forgotten existed, in the sure knowledge that neither of us could give each other HIV. That is a liberating experience, yet the moral police out there, would prefer that we didn’t have it. After all, gay sex is shameful, isn’t it? And condom free gay sex is even more shameful.
I am convinced that many of those that are condemning the introduction of PrEP are also under the misapprehension that those gay men testing positive are just the dirty gay guys, the ones who go to weekend sex parties and take lots of drugs, and no doubt there is an undercurrent of feeling that they deserve it. (I don’t agree, by the way). Indeed only recently, former gay soldier James Wharton (one of the good gays) recommended closing down gay saunas, with the outrageous claim that they were standing in the way of equality and were breeding grounds for drugs and HIV. Good gay guys subscribe to the hetero-norm, they meet the man of their dreams and settle down in a monogamous relationship. But it would seem that many of these good gays, the ones with boyfriends, the ones who think they are in monogamous relationships, are still testing positive. Maybe some of these good gays are not as good as they like to think they are; maybe we should all stop being so damn judgemental; and maybe we should just welcome the advances in medical science that have brought us PrEP.
There can be little doubt that much of the debate surrounding PrEP has been couched in moral terms. Only recently Michael Weinstein, the CEO and President of the AIDS Healthcare Foundation poured considerable funds into fighting its approval and went as far as calling Truvada a “party drug”, an outrageous comment on a drug that can help prevent transmission of the virus to a wide range of people, including gay men, sex workers and HIV-negative individuals in relationships with people living with HIV. A petition has been started to have him removed from office for trying to block one of the most revolutionary developments in the history of the AIDS epidemic. To quote Eric Paul Leue, Mr Los Angeles Leather 2014, who started the petition,
“This petition is about whether we, the people, should be allowed access to accurate information, free of stigma and discrimination. Since 1980, HIV and its prevention has been framed in moral terms, and the people carrying the virus blamed. The head of our largest AIDS service organization should know that HIV prevention is not “a party.””
PrEP is not widely available in the UK yet, but the PROUD study, of which I am a part, could result in it being offered to gay men more widely; offered to them, not forced on them. Isn’t it always better to have choices? If I am offered the chance of an extra level of protection against HIV, why should I be judged for accepting it? My body, my choice.
Professor McCormack has written a little poem about the benefits of PrEP, and performs it here on this youtube clip.