This article first appeared on PositiveLite.com, Canada's Online HIV Magazine.
The HIV landscape is ever changing. Rooted in tragedy, the plot twist introduced in 1996 with the advent of antiretroviral therapy is still playing out, with fresh twists coming thick and fast. The future is uncertain but targeting the end of the epidemic has never been more focused.
It's like a huge three-part drama, with HIV prevention in all its forms -- once there was just one -- taking center stage.
The plot has never been quite this complicated. At one time, prevention messaging was simpler and, short of abstinence, centered on using condoms. It was that simple. But things became more complicated when the ability of antiretroviral therapy to substantially reduce the risk of transmission became evident. Not only did people have more choices, but these choices became more -- well, complicated. Frequently they involved knowing more about risk than ever before, more about the science of transmission and more about the comparative effectiveness of various prevention alternatives. Throw in controversy, mixed messages, a little bit of moralizing and proselytizing and HIV prevention choices became a bit of a minefield to navigate for the average Joe or Jill.
That has become particularly true for people living with HIV with undetectable viral loads.
Not convinced? Ask yourself this question. You are a gay poz man with an undetectable viral load. You want to know the risk of anal sex without a condom with a partner who is HIV-negative. So you go to your local AIDS Service Organization and ask them to tell it to you straight up -- "low, medium, high risk -- or non-existent? What's the deal?"
The answers you get will be as varied as there are stars in the sky. And chances are many of them will be wrong. Simply put, many of those working in the field don't know or don't agree.
This can be frustrating, indeed infuriating, as the recent chatter in social media illustrates. A good example is Dave R.'s recent post, "I'm Positive, I'm on Treatment, I'm Undetectable, So Get Off My Case!" In it the clearly exasperated Dave, in what one commenter called "Best Rant Ever!," points the finger at the source of the problem of why his inability to transmit the virus -- or very slim likelihood of same -- is not taken seriously.
Says Dave "I rile at the inherent cowardice of HIV organizations and the LGBT media, who are reluctant to publish any findings that may damage the safe sex message ..." He goes on: "The problem is that the word, 'undetectable' means very little to so many. The word hasn't got out that it means an almost impossible chance of infection. The word isn't being put out there and I want to know why."
Why, Dave? The answer is as complicated as the science behind it. But first let's hear more of what people living with HIV are saying on social media about being undetectable. There's lots to choose from but a good place to start is Mark S. King's article which came out shortly after the interim PARTNER results were released at CROI 2014 this past March in Boston. Mark, in a widely read article "Will HIV Ever Be Safe Enough for You?" aimed his barbs at fellow LGBTers for pooh-poohing PARTNER findings that indicated the risk of transmission from one act of condomless sex where one partner is undetectable was close to zero.
Says Mark: "The willful ignorance isn't coming from uneducated residents of a southern town you can barely find on a map. It's coming from gay men. And they are just as threatened, frightened, and dismissive of science as the townsfolk of Williamson were thirty years ago. ... The PARTNER study also threatens the view that positive men are nothing more than risks that must be managed. The study kills the HIV positive boogeyman. It means positive gay men who know their status might actually care enough about their health to seek out care, get on treatment, and become undetectable. And, once the positive partner is no longer a particular danger, both partners would bear responsibility for their actions. What an enormous psychic change that would require in our community."
He goes on to say "I have some 'what if?' questions of my own. What if these unrealistic fears were meant to stigmatize and isolate HIV positive people?"
Mark perhaps, in his frustration, goes too far here -- I don't see willful stigmatization lurking in the bushes -- but his basic tenet that one of the major benefits of being undetectable has been neutered by fear and ignorance and that this neutering is unnecessarily perpetuating HIV stigma for many of us is genuine.
Those many people subject to unnecessary stigma include me. And I resent it as much as Dave and Mark do.
As Mark points out, the arguments used in the PrEP wars are similar in that they unreasonably challenge the ability of antiretrovirals to do the job they have been very good at doing. Says Mark: "Resistance to the PARTNER study corresponds with stubborn doubts about PrEP (pre-exposure prophylaxis, or HIV negative people taking the drug Truvada to prevent infection). Although virtually every nervous argument against PrEP has been overruled by the facts, naysayers continue to either reject the evidence outright or make moral judgments about the sex lives of HIV negative gay men on PrEP."
To put it bluntly, there is no telling in the eyes of a few detractors what unbridled licentiousness, what unchecked promiscuity undetectable people (or PrEP users) will engage in if they are told they are capable of risk-free sex. Or so it seems.
Be that as it may, resistance to the PARTNER study and in fact all prior research which pointed to reduced infectivity through viral suppression might be said to be part of a continued thread of prevention messaging which has continued to stress the superiority of condoms, even when some are arguing condoms don't work for some/many people and even where the evidence suggests to some people that condoms may be a second-choice solution with very variable efficacy. Have dogma and denial prevailed over science and sense, some are asking? And are the victims people living with HIV?
The answers may depend on where you live. Numerous jurisdictions have belief in the science and revised their messages about the reduced risk of transmission. It's not hard, for instance, to find condomless anal sex where one partner is undetectable defined as -- horrors -- "low risk." But other less progressive authorities insist that condoms provide a better level of protection. (That's pushing it. It's likely that no brand of condom, even where properly and regularly used, affords quite the level of protection that we have seen that ART is capable of.)
The situation is challenging in Ontario, where I happen to live and work, and where some still call all barebacking "unprotected anal intercourse." (Even the CDC won't use that term) Problem is that terminology downplays the good news -- yes it IS good news -- coming down the research pipeline about the ability of ART to reduce the risk of transmission. (The situation has similarities with the much criticized AIDS Healthcare Foundation (AHF) and their rearguard defense of condom use for negative men by trying to discredit the efficacy of Truvada when used as PrEP.)
Anyway, back to the history. Call it "The Defense of Condoms," a Play in Three Acts.
Oh the Drama!
Act One, set in 2008. The Swiss release a report on a cohort study which indicates that HIV-positive people who are taking antiretroviral drugs cannot transmit the virus during sex provided a) they have adhered to their treatment regimes and have had suppressed HIV viral loads for at least six months and b) are otherwise free of sexually transmitted infections. Sample prevention response: the ASO warns that the study population is heterosexual, that there is danger of virus in the semen even though it may be absent or not measurable in the blood and that viral load can vary over time. The bottom line? "There is always a level of risk associated with condomless sex." And the organization "stresses that all people should continue to practice safer sex, including those who are in a serodiscordant relationship or have multiple sexual partners."
ACT Two, set in 2011. A large scale study, HPTN 052, shows a 96% reduction in transmission when the HIV-positive partner starts treatment early. (Note that neither this nor the Swiss Study pertained to undetectable viral load but rather the impact of treatment, period.) Predictably, the objections from detractors were the same as for the Swiss study. Sample prevention response: "Although the results from trial 052 are greatly encouraging, as the proportion of MSM (men who have sex with men) couples in this trial was relatively small, firm conclusions cannot yet be drawn about the impact of ART on HIV transmission via unprotected anal sex among MSM."
Act Three, set in 2014. PARTNER interim results tell us that in a study that covered 44,000 condomless sex acts, one quarter of them homosexual, where one partner was poz but undetectable, not one HIV transmission occurred between any of the couples enrolled in the study. Estimating transmission risk based on these numbers, the theoretical risk per act was pegged between 0.5% and zero, with more time required to be more definitive. Sample prevention response "(We) maintain that condoms are the most effective way of preventing HIV transmission and encourage the use of latex or non-latex condoms . . . Having an undetectable viral load does not prevent the transmission of HIV or STIs. . . More evidence is needed to quantify the level of protection from HIV treatment."
The argument that more time is needed -- PARTNER results were indeed interim -- is used often here in agreeing with researchers that they need much more refinement than the indicated risk of somewhere between 0.5% and zero per act, But concurrently that same risk was characterized by numerous bodies, including our legal and medical representatives, as "negligible." Meanwhile people living with HIV began voicing the view that they had heard enough and a risk of between 0.5% and 0% needed little refinement. (In fairness, it must be mentioned that the researchers' quite valid warnings that multiple sex acts over a period of time increased the risk to the negative individual did not gain much traction.)
Supporting cast: There have also been introduced over the years what some characterize as a series of red herrings seen as an attempt to convince that while no infections may be occurring between serodiscordant couples where one is undetectable there are nevertheless dangers lurking in every shadow. Think virus in the semen, think virus in rectal fluids even as we are told "it is unclear how significant it is in terms of HIV transmission." (My take, given no transmissions occurring in PARTNER, is that these factors have no real significance. But like the danger of superinfection (remember that?) and the "'superiority" of condoms over other prevention techniques, we need to be careful not to allow dogma to triumph over science in what some characterize as a rearguard defense of all things condom. (But how well is that defense working, when we see continuing high HIV incidence, year after year, in gay and bisexual men?)
STIs? That's another story. There is no doubt that STIs pose a risk for condomless sex enthusiasts whether you are undetectable or not. If there is any evidence that the implications of STI infection are greater for poz folks with undetectable viral load than they are for a negative individual I have yet to see it. (The research to date does expose the damaging impact of STIs on HIV-positive people in general but makes no distinction between those who may be virally suppressed and those who are not, a common feature of much research on poz men and women.)
Given that perhaps up to 60% of those diagnosed with HIV have undetectable viral loads in Ontario, according to soon-to-be-released data, prevention authorities probably need to be more explicit about what the risks arising from STI infection represent for the majority of us who are undetectable.)
The Reviews Come In
We'd be facetious in saying that downplaying the power of ART as an effective prevention tool is a boost for condom manufacturers and little else. But in truth it does have consequences. The downside -- collateral damage if you will -- could be any or all of the following:
- An unnecessary perpetuation of the stigma surrounding being poz, when much of that stigma stems from a) our perceived infectiousness and b) our perceived difference to everyone else, thus a threat. That could easily be remedied if the message got out that we were likely no threat at all. (In some limited quarters, where undetectable is sometimes known as "the new negative," it has.)
- Downplaying the impact of ART may dissuade some from seeking treatment, thus maintaining their infectiousness AND denying them the benefits of ART to improve their mental and physical health. Said one person living with HIV from Montreal who is enthusiastic about the impact of ART, "(The Swiss Study) transformed my relationship not only with the medication (by helping me see it as a positive part of my life) but also with my body. Finally there was room to think of something other than the virus." Let's not dissuade people from enjoying this. (See also the PositiveLite.com story "Fuck Poz Guys" from Marc-André LeBlanc.)
- Downplaying the impact of undetectable viral load and encouraging condom use for those who have reached that status, as we have seen examples of here, may radically conflict with pleasure and sex-positive approaches that AIDS Inc. will say are central to their work. In other words there are opportunities for people with HIV to improve their sex lives after suppressing their viral loads, but these are dampened if AIDS Inc warns them the proof isn't in and "we need more time to see more results from PARTNER" and such.
- A conservative interpretation of risk of transmission arguably jeopardizes our community's efforts to convince the Supreme Court of Canada that either condoms or viral load protect against risk, but both are not needed. That may result in ASOs effectively siding with the Supreme Court of Canada in suggesting undetectable viral load is not enough. That looks very much like working against those who oppose criminalization.
- In the eyes of some people living with HIV who question the messages coming from AIDS Inc. there could be -- and we have seen some of this -- a potentially dangerous loss of credibility of the prevention community. That credibility may not easily be won back which would not bode well for any future prevention initiatives.
Fortunately -- or in some cases not -- people get their information from many sources, not all from AIDS Inc. Some community members are suggesting that it is the informed poz community itself who have the most accurate, dogma-free handle on transmission risk. But there's danger here too as misinformation is rampant. Truth is we need to understand more about what poz folks know and where they get it from, and to its credit, Ontario is conducting such research as we speak. But it would be foolish to dismiss the knowledge and expertise of positive men and women who look at the science with a view that's probably less steeped in conservatism than the prevention community at large.
The "collateral damage" referred to here is really the consequence of what is no more than a desire to be cautious, a desire to avoid giving advice that could lead to even one transmission through undermining the use of condoms. Prevention experts are not ogres after all; they have our best interests at heart, are often dedicated and informed individuals who want to do what's best for the community -- our community.
In any event, conservatism has its place in prevention work, but too often it arguably rules the day without assessing the consequences. Which is why the views of community members like Dave R. and Mark S. King and a host of others too numerous to mention here need to be heeded.
One additional note and it's about GIPA -- the Greater Involvement of People with HIV/AIDS. GIPA principles should, of course, be pervasive throughout all aspects of HIV work, including prevention. That means the voices of people living with HIV -- what they know, what they don't know, what they think they know, what they hear but distrust -- should hugely guide the work.
Let's be clear. I am not anti-condom. Myself and PositiveLite.com support the use of condoms -- HIV-negative men, for example, need to wear them in a large variety of circumstances. And their use is appropriate for poz guys also who see this as a viable means of reducing risk But there are also many situations when you're poz, and having a consistently undetectable viral load is one of them, where condoms may do little more than contain the spread of STIs, while fitting awkwardly with pro-pleasure messaging.
Dave R., in the column I referred to where he asserted he was less of a risk than most negative people because of his suppressed viral load, asked to be contradicted if anything he said was inaccurate. He repeated the challenge over and over. Nobody took the bait but many readers left supportive comments and his article quickly became one of PositiveLite.com's most popular posts ever.
Important background to when we talk about risk is that risk is a highly individualized concept. We all have different views of what is acceptable risk. Prevention experts must somehow accommodate that wide range of values that exist in our community. That's challenging and we need to acknowledge that. It's also not surprising that prevention messages often err in favor of conservative assessments of risk. But that course is not without -- ermm -- risk and seldom recognizes that dealing with risk, once we understand it, is a way of life that we are quite adept at. Zero risk, the Holy Grail, it seems, of the research and prevention communities, is seldom sought after by real-life people or we would never cross the street, never fly in a plane, never even marry, arguably the greatest risk of all. :-)
The solution may just be that we as a community need to be real, to be authentic as we can at all times -- as do those who guide us through the murky waters of HIV prevention. Easy-peasy, no?
No. Or we would be there already. Still, let's keep trying until the curtain comes down on HIV for good. And with absolutely no encores, please.
Follow Bob on Twitter @ruraltweeter.
Read Bob's blog, Northern Lights.