This is the first installment of a series looking at new and emerging HIV-prevention options and the barriers that are slowing down the beginning of what could be a sexual revolution for queer men
There is a pill you can take that will prevent you from contracting HIV, even when you do not use condoms. Just hearing about this now? You are not alone. There are barriers that are preventing folks at risk for HIV from accessing this prevention option, and many people who could most benefit from PrEP haven’t even heard of it. Lets talk about how we got here.
In 2012, the US Food and Drug Administration approved an HIV-treatment drug for a new use. Truvada, an HIV treatment pharmaceutical developed by Gilead Sciences and popular with doctors and people living with HIV due to its greatly lessened side effects, had been unquestionably proven in a number of clinical trials across several countries to prevent new sexually-acquired HIV infections when it was being taken daily by a person who was HIV-negative. This prevention strategy where HIV-negative people who are at high risk for acquiring sexually transmitted HIV (such as gay men) is in its most conservative estimation upward of 80% effectiveness, and likely much higher than that. These results showed a level of effectiveness that rivaled condom use by a substantial margin. To be clear, the science said that an HIV-negative person who was taking daily Truvada and not using condoms during sex was at less risk of seroconverting (having your HIV status change from negative to positive) than a person who was not taking the drug and was using condoms. This was Pre Exposure Prophylaxis, or the far more jaunty ‘PrEP‘ as it now popularly known.
I say ‘popularly’, but that, tragically is an overstatement. Now, five years after this piece of our sexual health revolution was supposed to begin, there are still a great deal of misconceptions, misinformation and stigma around PrEP. It has even been a challenge to make people aware of this prevention option, let alone how they can go about getting themselves on the treatment. Once you have gotten the word out, there is another barrier to overcome, gay men’s mental health around their sex lives is all-to-often troubled. Shame, internalized homophobia, fear and discomfort around sexual identity all contribute to a state of affairs where guys are likely to have incorrectly assessed what level of HIV risk they are realistically at. For the first time in the 30-odd years of the HIV epidemic, there are options that stand a chance of making a difference for people at the greatest risk, and yet there remains an unacceptably large number of people who have not even heard of PrEP, have no idea how to access it, or perhaps worst of all – who have heard things about it that misrepresent its effectiveness or that stigmatize people who may want to use it. Just as homophobia once fueled the HIV epidemic, slut shaming and irresponsible, ignorant pseudoscience now creates totally unnecessary barriers to taking the fear out of our sex lives and making a meaningful difference in our HIV burden.
Gay, bisexual and other men who have sex with men continue to bear a disproportionate HIV burden in today’s epidemic. In Ontario, we account for upwards of 60% of new cases every year, and as other at-risk populations numbers go down the percentage of cases we represent, though numerically stagnant, increases steadily every year. For more than ten years gay men have been contracting HIV at an unchanging rate, as we see people who use drugs, the (straight) African/Caribbean/Black community, and women at risk making great strides in reducing their numbers. There is also unsettling evidence suggesting that as many as one in five folks who are currently living with HIV do not know it.
There are too many factors at play here to place blame squarely on any one of them, but there are a few we need to address immediately if we want our sexual revolution to get out of the gates.
Firstly, HIV stigma continues to be a driving force that helps perpetuate this epidemic. We need to be real about how we are talking about HIV. HIV is not a death sentence and has not been for quite some time. It is entirely possible to have a long and healthy life while also managing HIV. Treatment has come a long way, and many people living with HIV are taking one pill a day to manage their condition. We do not have data on how much these new drugs limit a lifespan because they are not really limiting peoples lifespan in a measurable way anymore. People living with this chronic condition are living well into old age. People living with HIV can also have robust and pleasurable sex lives without fear of transmitting HIV to sexual partners (in an upcoming installment of this series we will be looking at that more closely). Contracting HIV is something to be avoided, surely. Nobody wants to live with a preventable chronic condition if it can at all be avoided. But it is not something to be FEARED anymore, and that is a very meaningful distinction. HIV anxiety can cause needless and damaging stress to at-risk populations, and this emotional and mental toll can cause us to behave in irrational ways, actually leading to higher-risk behaviour, avoiding HIV testing, and living in denial, forming inaccurate assessment of our risk.
Secondly, gay men need to understand that we are still very much at a high risk. In the 90s there were efforts and campaigns designed to put distance between gay men and HIV as a well-meaning but ultimately foolish attempt to reduce cultural homophobia. While homophobia has certainly lessened in the last several decades, there are now gay, bisexual and other men who have sex with men who don’t understand that it is a realistic possibility that we could come into contact with HIV, let alone our chances of contracting HIV. Bluntly, if you have had sex with more than ten guys, you have almost certainly already had sex with someone who is living with HIV. If they didn’t mention it to you than they probably didn’t know it at the time. It can take up to ten years for there to be symptoms you would notice.
Thirdly, the slut shaming needs to stop now. So many of us are at a higher risk than we think we are, because we don’t feel like we are at risk, we are not the ‘kind of person’ that could get HIV. Without putting too fine a point on it, if you are a human being in possession of a human body and living on the planet Earth anytime after 1970, you are the kind of person who could get HIV. It is a virus, not a supernatural consequence for being a certain kind of person. If you are a human being who has sex in a smaller sexual community where HIV is present (such as among men who have sex with men), you statistically have a higher chance of coming into contact with HIV, which is logical if not comforting. If you are a human being who belongs to a smaller sexual community who also has kinds of sex that easily facilitate the transmission of HIV (such as anal sex), you have a higher chance of coming into contact with HIV AND a higher chance that HIV will find its way into your bloodstream and start replicating, making you now HIV-positive. None of these facts change because you are in love, because you are only fucking other married guys, because you only hook up with people who say they are HIV-negative (and probably believe it but could be wrong about that), because you use a condom when you remember to but sometimes don’t because almost nobody does 100% of the time, or because you don’t self-identify as promiscuous. None of these facts make you a good or a bad person. None of these facts have anything to do with anything other than straight-up biology.
I wish I could say that this communication piece was the only barrier, that once you are convinced that PrEP may be right for you that will be the end of it. While it is a big piece, it is unfortunately not the only thing standing in the way of this option being viable for folks who stand to benefit the most from this HIV prevention option.
As mentioned, the US FDA approved the drug Truvada for use as PrEP in 2012. Health Canada followed suit in 2016, four years later. People were still able to access Truvada for use as PrEP in that time, but it required finding a doctor willing to prescribe the drug ‘off-label’, for use other than its intended use (in this case for HIV prevention, rather than its regulated use as an HIV treatment). Among other things, this way of getting PrEP was not ideal because Truvada is an expensive drug (out-of-pocket daily Truvada sets you back around $1,300/month) and private insurance almost never covers off-label prescriptions. While the drug is now regulated in Canada for use as PrEP, it continues to be challenging to find insurance coverage for it. Efforts are underway to have the drug added to Ontario’s provincial formulary which would mean that it was at least covered by disability or trillium benefits, and there are substantial lobbying efforts underway to have the drug added to private insurance benefits. You might consider signing the petition at https://prepontario.org/
Educating GP doctors about PrEP is also of paramount importance – at the time of this writing I am aware of only one doctor who is prescribing PrEP and accepting new patients in Hamilton. It is complicated by the fact that PrEP is a commitment – its not simply getting a script written but requires substantial follow-up care. A person who is taking PrEP needs to see their doctor every 3 months for a variety of follow-up tests, to ensure the drug is not producing side-effects and to test for HIV and other STIs. Right now, most doctors who are prescribing PrEP are HIV specialists, which is not sustainable (they after-all likely have a full caseload of managing the care for people living with HIV), but unfortunately where the knowledge is. In an ideal world, PrEP would be accessed through your family doctor, but we are not there yet.
And the conspiracy theories and irresponsible pseudoscience can also stop anytime now. PrEP is not a ‘party drug‘, it is not something that is going to cause a sudden surge in other STIs, and it is absolutely effective. Yes there are strains of HIV that are resistant to Truvada and can cause PrEP to fail, but they are rare and do not seem to have increased since PrEP has been available. Paternalistic pearl-clutching in the medical establishments also needs to end. Every time I hear someone frantically concerned about the rise in syphilis, chlamydia or gonorrhoea they imagine is inevitable because of PrEP I want to scream into a pillow. Aside from the fact that the other more prevalent STIs are all curable with antibiotics, it’s not like the people who could benefit from PrEP are not already at risk for these other things as well, and a part of PrEP care is frequent STI tests, meaning a person taking PrEP is more likely to get diagnosed and treated than someone who isn’t too concerned about these things. So many times I hear people worrying that PrEP is going to give gay men permission to have bareback sex.
Well guess what? We haven’t been waiting for your permission, which is irrefutably clear in the fact that our rate of sexual HIV transmissions has not changed since the early naughts. Condoms are a good idea and highly recommended, just like seat-belts, bicycle helmets and not having more than three drinks in an evening out are all good ideas. And just like those things, not always following the guideline does not make you a bad person, and just like all of those things very few of us can honestly say we have followed that guideline 100% of the time. We need to get over the fact that gay men sometimes don’t use condoms and instead of shaming, pleading or threatening us about it, adapt. We have the technology.
For more information about how you can get on PrEP, contact the Men4Men program of The AIDS Network at firstname.lastname@example.org or 905-528-0854 x 231