(Not acronym friendly? CAHR stands for Canadian Association for HIV Research. CAS stands for the Canadian AIDS Society.)
In part one of this story I provided a user-friendly guide to what goes on at HIV conferences, why biding advocates should consider going and how to get to them. In this part, I’ll take last week’s two conferences and break their highlights down for you, again in user-friendly terms.
First let’s deal with Winnipeg itself. This was my second visit and I remain not quite won over by its charms. I mention this only because one’s conference experience is inevitably coloured by one’s impressions of the host city, in which you will be spending more than a few hours. I was there for five days and found the city cold (literally – in fact it snowed on our first day); some might also add a bit sterile. The exception was the city’s Canadian Museum for Human Rights, an ultra-modern building stunning in design and content. CAHR was clever to include an evening event at the museum itself. Says the Museum’s website:
“The Museum offers a journey from darkness to light. You enter the Museum at ground level, into a space that has a subterranean feel. You gradually work your way higher on a series of inclined ramps that reveal more and more daylight. There are six levels of exhibits and 11 galleries. The unique architecture parallels a human rights journey – it requires some effort and has a few twists and turns, but can be very rewarding to complete.”
My experience of the CAHR conference itself was coloured by the fact that I was one of several community-based CATIE rapporteurs. (Definition: a person appointed by an organization to report on the proceedings of its meetings.) That means attending a lot of presentations in your chosen research stream – mine was Social Science – taking copious notes, meeting each evening and contributing to a final conference plenary session where the rapporteurs summarize the conference’s most salient take-home points. It’s not easy work, but I have to say our team nailed it, delivering on the final day a concise but fact-packed presentation which drew a lot of favourable comment.
CAHR highlights (a personal view)
Two things to consider in assessing conferences like CAHR2016. First this one was undeniably a success BUT our collective knowledge about HIV is increasing incrementally rather than in leaps and bounds. True, there will be moments in our history when ground-breaking research changes the way we look at things, like when to start treatment (PARTNER for instance in 2015 changed everything in 2015) But CAHR2016 was not one of those conferences about breakthroughs, but was rather about increasing our collective competency in understanding and responding to the epidemic.
Secondly, because there are concurrent sessions, one can’t attend every session, so this list inevitably reflects what I heard and/or peaked my interest. But here is what I liked – my top five take homes, if you like.
PrEP at age five - and growing up fast: The conference reflected a desire to get serious about PrEP implementation. “It doesn’t have to be perfect” was a simple statement which resonated with many and reflected where we should be at. Same also for “the greatest risk is in not doing enough.” Researcher/physician/PrEP expert Darrel Tan commented that the evidence is now compelling, and use of PrEP in the United States is now widespread. The existing evidence shows a clear need to implement PrEP as part of ongoing combination prevention programs, and to ensure that ongoing sexual health monitoring and services are an essential part of PrEP delivery.
HIV, Rehabilitation and Aging: There were two major sessions tackling these related topics, featuring star presenter Stephanie Nixon. It’s clear that rehabilitation is no longer, if it ever was, about positioning people living with HIV to re-enter the workforce. Instead we have moved towards responding to the impact of diagnosis not only on the body but to life in general – and making it better. We were also introduced to “disability theory” – the notion that people with existing disabilities are disproportionally susceptible to HIV infection.
90-90-90 – the tools we presently have (or don’t have) in Canada to measuring progress... This was a key late-in-the day session for me. It told a good news, bad news story. It confirmed the disturbing situation that despite Canada’s 2015 federal commitment to 90-90-90 global targets, we can’t measure if and when we attain them. The good news is that there is work being done in conjunction with the Public Health Agency of Canada (PHAC) to engineer more solid data reporting. With jurisdiction for collection of data a provincial responsibility that’s far from easy (and frankly all over the map) we are at the “working on common definitions” stage as a nation. It’s also clear that some provinces are way ahead of others. Can we get our act together by 2020? My take, based on what I heard, is that it will be tight. (More on this later.)
Inclusion in decision making of people who use drugs: a concurrent session by Lynne Belle-Isle of the Canadian AIDS Society (CAS) drew widespread praise and presented perspectives of people we don’t always hear a lot from “Talk to us, not at us” they say. The similarities with GIPA issues and inclusiveness were very evident. Look for a PositiveLite.com interview with Lynne to explore these issues further shortly.
The role of community members: I’ve already mentioned the final day’s rapporteur session, which turned out be a highlight because it was done so well. It not only informed but made me proud to be a person living with HIV. But then – there is always a “but then” – the number of people living with HIV in attendance at Winnipeg was dismally low. Way too few familiar faces for my liking – so many who could benefit from a conference like this were missing. Thanks nevertheless to CAHR for the community scholarships that were offered and to CATIE for their Learning Institute program which facilitated my way.
I stayed on for the Canadian AIDS Society Forum for People living with HIV, reduced to just one day this year, reflecting I imagine CAS’s difficult year financially. Unfortunately five minutes before the opening session was due to start I got sick and was throwing up. That necessitated retreating to my room where I slept for four hours solid. I emerged mid-afternoon. While the gathering was small it was an active group and less disgruntled than in previous years. It’s clear CAS is trying to recover from a very bad spell that regular PositiveLite.com readers will be very familiar with but I’m afraid my absence from the proceedings prevents me from commenting more.
All in all though, my five days in Winnipeg was a supremely challenging but rewarding experience. I would go back.
Photos of the Canadian Museum of Human Rights, Winnipeg by Bob Leahy