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Bob Leahy

Bob Leahy

Award-winning blogger Bob Leahy first made his social media mark a decade ago on LiveJournal.com where there are still to this day almost 3,000 entries of his available to be read. He was a featured blogger on Ontario’s HIVStigma.com campaign, along with PositiveLite.com founder Brian Finch.  He joined PositiveLite.com at its inception in 2009 and became it's Editor a year later.

Born in the UK, Bob’s background is in corporate banking, which he gladly left in 1994, after being diagnosed with HIV the previous year.  He has chaired the board of PARN (Peterborough AIDS Resource Network) and has been an executive board member of both the Ontario HIV Treatment Network  (OHTN) and the Canadian AIDS Society (CAS).  He was inducted in to the Ontario AIDS Network’s Honour Roll in 2005.  Bob is currently a member of Ontario’s GMSH (Gay Men’s Sexual Health Alliance). He also writes for TheBody.com.

In 2012, Bob was honoured with the Queen Elizabeth II Diamond Jubilee medal for his work and commitment to HIV/AIDS in Canada.

Bob continues to write for this site while in the Positivelite.Com editor’s seat, with a particular interest  in HIV prevention, theatre and the arts in general. He is accredited media for a number of Toronto theatres. He lives in Warkworth, Ontario with his partner of thirty-two years and three dogs.

Sep02

Undetectable - a drama in three parts

Tuesday, 02 September 2014 Written by // Bob Leahy - Editor Categories // As Prevention , Research, Health, Treatment, Living with HIV, Opinion Pieces, Bob Leahy

Have the benefits of an undetectable viral load been realized or are those who are undetectable still labouring under the burden of being seen as being as infectious as ever. And what’s the potential of that message for causing harm? Bob Leahy reports

Undetectable - a drama in three parts

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 focussed

It’s like a huge three-part drama, with HIV prevention in all its forms - once there was just one -  taking.centre stage.

******

Prologue

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 proselyting 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 latest post for PositiveLite.comI’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 wilful 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 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 condoms don’t work for some/many people and even where the evidence suggests condoms may be a second-tier solution with very variable efficacy. Dogma and denial have arguably prevailed over science and sense. The victims? People living with HIV, for one.

Not everywhere of course. Numerous jurisdictions have heeded 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. (Hardly!. It's highly likely that no brand of condom, even where properly and regularly used, affords the level of protection that we have seen that ART is capable of.)

The situation is particularly extreme in Ontario, where I happen to live and work, and where they still call all barebacking "unprotected anal intercourse" and so I will use that as an example of the furious downplaying of 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 American Health Foundation (AHF) and their rearguard defence of condom use for negative men by attempting to discredit the efficacy of Truvada when used as PrEP.  Except that AHF has been called out on it by almost everyone. )

Anyway, back to Ontario. Call it "The Defence 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 throughout the prevention community who join with researchers in suggesting that they need much more refinement than the indicated risk of somewhere between 0.5% and zero per act,  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 in 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 toldit 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 any other prevention technique known to man, dogma is in danger of trumping science in what has all the signs of a rearguard defence of all things condom. (That defence isn't working well, by the way, if continuing high HIV  incidence, year after year, in MSM is any indication.)

STI’s?  That’s another story. There is no doubt that STI's 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,)

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 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’s much more dangerous. The downside - collateral damage if you will – would seem to be at least fivefold.

1. 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 no threat at all. (In some limited quarters, where undetectable is known as "the new negative" it has.)

2. Downplaying the impact of ART may dissuade some from seeking treatment, thus maintaining their infectiousness AND denying them 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. (Sea also the PositiveLite.com story "Fuck Poz Guys" from Marc-André LeBlanc.)

3. 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, radically conflicts 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 supressing their viral loads, but not if AIDS Inc continualy warns them the proof isn't in and "we need more time to see more results from PARTNER" and such.

4. A conservative interpretation of risk of transmission 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 some ASOs' are effectively siding with the Supreme Court of Canada in suggesting undetectable viral load is not enough are working against the best interests of people living with HIV who oppose criminalization. 

5. In the eyes of many people living with HIV who question the messages coming from AIDS Inc. there has been a potentially dangerous loss of credibility of the prevention community. That credibility will not easily be won back. That does not bode well for any future preventiion 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 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. But whatever they believe, there are often constraints from above – we’re not talking the G guy here – but other levels of authority which preclude ASO employees saying what they think and, indeed what they may practice in real life. And, surprise, surprise, it doesn’t always involve condoms.

Want proof?  Speak to me later.

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. Instead people who dispute the AIDS Inc. messaging are too often viewed as inexpert anarchists, libertines or condom opponents. That’s both unfair and inaccurate – and very un-GIPA like!

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 do little more than contain the spread of STIs, while fitting poorly 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 favour 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.