“As always, it takes time for scientific results to diffuse from the scientific community to the public, and when it does, one can be sure it will trigger all kind of debates and arguments more than often entrenched in beliefs and prejudices as facts.” Incidence.org
Odd, isn’t it, that eight months after preliminary results were announced, reference to the ground-breaking PARTNER study is missing in action from any AIDS Service Organization (ASO) website or gay men’s sexual health website in Ontario, Canada most populous province. Are they just slow to react, or is something else going on?
Or is this just a symptom of the malaise which seems to have overtaken HIV work in Canada, which, with a few exceptions, (notably in British Columbia and Quebec) has seen Canada's record of innovative HIV work slip behind that of many other nations, including the USA, the UK, Australia and even China.
But back to PARTNER. Given that these results, published at CROI in March 2014 are what CATIE described as “very important” and “can help serodiscordant couples assess their HIV risk and make informed decisions” the ensuing silence from those who work in HIV prevention, particularly in Ontario, is puzzling.
Some community members are downright suspicious. There is talk amongst some poz guys of “a conspiracy of silence”, grounded in a belief that ASOs don’t want gay men to know what PARTNER is apparently telling us – that the risk of HIV transmission during serodiscordant anal sex where one partner has an undetectable viral load is extremely small. (It’s less than 1 in 2,000 per act.) Prior to PARTNER we had no reliable data applicable to gay men, but PARTNER, which has encompassed 7,700 acts of same sex anal intercourse where there was not a single transmission, hugely increased our knowledge.
Proceed with caution?
What’s more likely at work here is caution rather than conspiracy. Be that as it may, no Ontario website providing information for gay men has chosen to publicize PARTNER, or revise its prevention messaging to reflect what we have learned since HPTN O52 in 2011, which only applied to heterosexual couples.
Twice last week I heard from those who work in the gay mens HIV prevention field who told me that it is too early to draw conclusions from PARTNER, that’s these are interim results only.
From this distance, though, it seems like this ”too early” reaction comes from a misinterpretation, or perhaps misapplication, of PARTNER research findings and what they are intended to inform (i.e. academia or gay men and related HIV programming?)
While things get complicated here very quickly and require some understanding of what researchers call ”confidence limits”, it IS true that what has NOT yet been established by PARTNER is the exact risk of HIV transmission (or as clear to exact as we would like) during one act of condomless anal sex in same-sex serodiscordant couples where one partner is undetectable. The researchers have rightly stated they need more time to pinpoint that risk and are thus enrolling over 400 more gay couples with an end date of 2017 to produce more definitive results.
But what is clearly NOT too early to determine is that interim results are pretty impressive; in fact the risk from this same act is “extremely likely” to be within a range of 0.5% and zero. Time will narrow that gap further.
Crisis of confidence
CATIE's James Wilton explains “The main purpose of this (extended) study is to collect more data on receptive anal sex in order to drive that upper confidence limit down.” In other words, it is NOT, as prevention workers seem to be implying by their "wait and see" attitude, to prove or disapprove that a range of between 0.5 and zero is accurate, but rather to narrow that range. The distinction is hugely important.
Need to know more about that range? Says Wilton "given the number of receptive anal sex acts that occurred and the fact that no HIV infections were observed, it is extremely likely that the “true” risk is somewhere between 0% and 0.05%, and extremely unlikely that it is above 0.05%. Although it is still possible that the “true” risk is zero, or only slightly higher than zero, the researchers could not rule out the possibility that the risk is as high as 0.05%".
Know too that more time will never result in a risk calculation of zero. Simply put, zero risk doesn’t exist in any statistically verifiable scenario.
Given all this, it’s hard to sumise, aside from attributing it to an excess of caution, why prevention people think a risk of 0.5% maximum is not definitive enough to react. It makes less sense still, given that we have never applied such rigorous proof of efficacy of, say, condoms or even, latterly PrEP. Unless of course “arguments more than often entrenched in beliefs and prejudices than facts” are at play here.
All this frustrates the hell out of some observers. Said Mark S, King in a widely read article “Will HIV Ever Be Safe Enough for You?” “Yes, there are unknowns. There always are when scientific studies meet the real world. And every strategy will not work for every person. But the vehement rejection of such profound breakthroughs suggests there is something more, something deeper, going on. .”
If ideological issues are at play, here, could it be because “the PARTNER results bolster the prevention strategy known as “Treatment as Prevention” a strategy that has historically won little support in parts of Canada, although widely adopted elsewhere.
Meanwhile, many remain suspicious. PositiveLite.com’s Dave R said recently "Lucky for us that the treatment is so effective that the virus almost controls itself but that has led to a stunning complacency on the part of some of our own health educators and a refusal to release information that will help lift the guilt and stigma that still represses poz guys across the world."
Some are concerned that in not taking actions based on interim PARTNER results we are missing out on opportunities to reduce stigma, and to present people living with HIV in a new light. PositiveLite.com publisher John McCullagh recently said, for instance, "we need to explore messages like "The 'safest' guy to have sex with is probably a positive guy on meds with an undetectable viral load"".
The bottom line
Maybe the reticence to move forward is a function of the fact that those engaged in HIV prevention believe that a considered response, consensus building developed over time, is more effective than hastily produced conclusions. But that entails absenting themselves from community discussions that started the day after PARTNER results were released in March – a high price to pay for choosing to play the caution card.
Not all is bad news though. Eight months after PARTNER the wheels are turning. Ontario's Gay Mens Sexual Health Alliance (GMSH), which provides sexual health information to Ontario service providers for onward transmission to gay men is in the process of revising its thesexyouwant.ca website (currently down) which is likely to tackle PARTNER in one way or other. And the AIDS Committee of Toronto (ACT), the largest ASO in the province, has had PARTNER expert James Wilton present to its constituents with good results, as well as featuring the study in a sumer newsletter. But others need to step up to the plate.
The bottom line, after all, is that people living with HIV, particularly poz guys for whom PARTNER should have been a revelation, need all the information that is out there in order to make informed decisions regarding their own sexual health and those they interface with. The mechanisms for providing them with that information seem not to be working as well as they should – and that hurts everyone.