Being a person living with HIV isn’t always easy but one thing that makes it easier is having information - clear, precise and understandable information - that we can live our lives around. That’s sometimes problematic because HIV is a complex disease with complicated repercussions. Take the criminalization aspect, for instance. The laws governing disclosure of one’s HIV status are becoming so convoluted, so less black and white by the month, that confusion reigns not only amongst many people living with HIV themselves but, Canadian research now reveals, in those professionals required to provide them with appropriate advice on their obligations under the law. That’s not good.
And then there’s that other hot potato which finds us not all on the same page, with even more alarming consequences. Viral load is of course no longer just a number we and our doctors chat about over lab results. It’s what entire debates on population health stem from, what the UN ponders over, what presidents speak of.- the very stuff, in fact, of arguments about how best to end the epidemic. That’s because, for those not following, reducing viral load has proven in many/most individuals a means of reducing the risk of infecting others. How much it reduces transmission risk and in what circumstances isn’t quite so simple. But if having undetectable viral load means the possibility of much lower risk, how do we as people living with HIV adapt to that news? What does low risk really mean? Do we still need condoms? Has high risk sex become low(er) risk sex? Is barebacking, a demon for decades, suddenly OK – or more OK than it was?
Delve in to what is being said about these topics and the mass of contradictions is truly staggering. It depends in part on the agenda of who is speaking. So wading in to the morass can be daunting, but here goes. I’ve provided lots of links for those who want to research the topic more.
Let’s look first at those promoting a “treatment as prevention” agenda. The BC Centre for Excellence whose province’s dedication to reducing viral load has received widespread attention, said this World AIDS Day “HAART treatment . . reduces the level of HIV in the blood to undetectable levels, improving the health of people with HIV, while also decreasing the level of HIV in sexual fluids to undetectable levels, reducing the likelihood of HIV transmission by more than 95 per cent. . . Individuals receiving effective treatment are extremely unlikely to transmit HIV to another person.
BCCE relies in part on studies like the much-quoted HPTN Study 052 which demonstrated that ART “prevents the sexual Transmission of HIV in serodiscordant couples”; most (97%) were heterosexual. HPTN 052 was a large-scale randomized clinical trial to show that treating HIV-infected individuals with ART can reduce the risk of sexual transmission of HIV to their uninfected partners by 96%.
Studies like this, by the way, and the much-quoted Swiss cohort study which preceded it, do not come without their detractors. We’ll get to them later.
There is a buzz too in some poz circles that says undetectable viral load and low risk sex are happy bedfellows. Sean Strub, the respected founder of POZ magazine earlier this year said this. “A person who is undetectable and has been undetectable for some time, there is very little chance of them transmitting the virus sexually . . . We have neglected to recognize the extent to which a person who is on treatment and is undetectable is rendered non-infectious."
These are not radical views; lawyers frequently use them to defend people charged with non disclosure, calling expert witnesses to testify that undetectable viral load often represents exceedingly low risk. The Canadian HIV/AIDS Legal Network, for instance, routinely argues that "disclosure is only required where there is a “significant risk” of HIV transmission and that this clearly excludes certain situations, such as cases of condom use or an undetectable viral load on the part of the HIV-positive person"
Activists too are increasingly adding to the diversity of views on risk and how we approach it as individuals, including the concept that barebacking can be OK. Mikiki, Poz Prevention Coordinator, PWA Foundation, Toronto is saying thus on posters throughout Toronto: “I party, I Bareback, I’m Positive, I’m Responsible . He adds, in an interview with Xtra, “gay men are still forced to piece together the latest facts about HIV, largely due to the reticence of public health messages . ."
Another activist from AIDS Action Now, Alex McLelland says, in the same article “ Public-health messaging never wants to tell people living with HIV that they can have sex without condoms with each other” adding the concept of serosorting to the discourse.
Meanwhile others who work in HIV prevention seem less enthusiastic about suggesting that undetectable viral load might equal low, lower or even negligible risk, Some take the middle road, like GMSH (Gay Mens Sexual Health Alliance) out of Ontario, who say on their new www.thesexyouwant.ca website “It’s up to you what level of risk you are comfortable with“ in a likeably pro-choice way.
The AIDS Committee of Toronto, seems less pro-choice, at least in. their statement on Antiretrovirals, Viral Load, and HIV Transmission posted on their website which ends.“ACT stresses that all people should continue to practice safer sex, including those who are in a serodiscordant relationship or have multiple sexual partners.” (In fairness, this uncomplicated approach to the Swiss Cohort’s findings was echoed by many at the time - 2008.)
CATIE, in The Positive Side Winter 2008 edition, takes a cautious but more nuanced approach. “There is mounting evidence” it says “that reduced viral load can mean reduced risk of HIV transmission for some people. The Swiss commission went so far as to say that PHAs with an undetectable viral load can be “non-infectious” in some circumstances. Recently, however, there have been several anecdotal reports and one published case study of HIV transmission in male couples who meet the criteria set out in the Swiss statement. So there is still a risk of HIV transmission with an undetectable viral load.”
The Canadian AIDS Society’s HIV Transmission Guidelines for Assessing Risk, which for decades have been the starting point for assessing what constitutes risk, make no mention of undetectable viral load. They are a product of simpler times.
So it’s a bit of a mess, a challenge to figure out. It doesn’t help that frequently used “facts” are sometimes questionable if one digs deeper. Take, for instance, the claim that’s commonly made that “there can be detectable amounts of HIV in semen or vaginal fluids even in people who have an undetectable viral load in their blood.” That’s right, of course; the research bears that out. But what they don’t say is that more often than not, and in fact by a large majority, undetectable virus in the blood means undetectable virus in the semen. More importantly, research indicates where a viral load is detected in the semen, more often than not, the viral load is very low indeed. In other words, there is indeed some risk that viral load at a problematic level is in the semen, but the chances are not large. But you’ll never here this labelled anything but high risk.
Some like Sean Strub have stated that, in a mixed status couple, there is greater risk through a condom breaking than the risk of transmission when one (positive) partner has an undetectable viral load. He’s probably right. But we seldom talk about the likelihood of condom breakage, which can suddenly and dramatically turn low risk sex in to surprisingly high risk sex, because of the need to promote condom usage to the max, however safe .
(According to a 2,000 report by the National Institute of Health (NIH), correct and consistent use of latex condoms reduces the risk of HIV/AIDS transmission by just 85%).
Clearly this mess of sometimes contradicting information does not serve us well. I’ve said it before, but too many of us are becoming dazed and confused by the competing arguments and agendas, and that confusion isn't healthy.
It’s a tribute to our persistence though, not to mention our resilience, that people living with HIV and negative folks too can and do sort it out for themselves. One gay man for instance,(Kevin from Toronto) leaving a comment on Xtra’s feature about a recent AIDS Action Now campaign, said this . .
“There is lots of evidence to suggest that for casual sex gay men need to continue to use condoms whether guys with HIV are on treatment or not. Anyone that tells you otherwise is misinformed. And anyone that tells you that fucking bareback without a condom with a low viral load is 'better than' or even equivalent to a condom for casual sex is lying or hasn't done their homework. Don't buy it. Do your homework yourself and get well informed. In the end, you need to use a condom to fuck casually and if you do that you don't need to worry about whether the guys you are with have HIV or not. “
I’m not citing those words as necessarily ones to live by, more an example of how one man figures things out for himself. People construct their own truths, their own relationships to risk because how much risk we are comfortable assuming will always be a personal decision. HIV prevention programming should recognize that. Certainly our decision-making should be informed by fact, and we should be getting more help with that. But help’s only good if it’s free of bias, unclouded by agendas, paternalism or mistrust of what we might do if we really understood risk. Are we there yet? Probably not.
Solutions? Tricky. But we need to talk. Strikes me we need two parallel - and frank - discussions that fully engage people living with HIV, prevention workers and researchers. One is about viral load. The other is about how we process risk - both rationally and in the dark (the two are very different). I'd really love to see that happen. I'd really love to be part of that too.