It was a good conference, more interesting and engaging and approachable than many – but ultimately what impressed just as much came not from the conference program itself but from the actions of the community present.
First a word about how and why I was able to attend. It’s a privilege to earn a community scholarship that gets you there and I’m the first to acknowledge that. The CATIE Learning Institute program that I was fortunate enough to qualify for entails a lot of work as one takes on the role of rapporteur. (Definition: “a person appointed by an organization to report on the proceedings of its meetings”). So we 15 community members appointed to this role are responsible for just that – summarizing the entire conference and presenting the results to the assembled delegates at the conference’s conclusion. And because this includes rapporteur group meetings at the end of each conference day, 12-hour work days are the norm. It’s hard.
All this played out while shepherding New York City’s Bruce Richman, the man behind the Prevention Access Campaign and its ubiquitous U=U message. Prior to CAHR he and I had just come off meetings in Toronto with community leaders at CATIE the day before and later that same day a terrifically received town-hall type meeting at ACT. A taxing schedule saw us train together to Montreal for a similar community forum the next day, this time organized by AIDS Action NOW! at ACCM. So I began CAHR somewhat triumphant in spirit but exhausted and cranky as well.
Rapporteurs at CAHR organize themselves into science streams to cover off the fact that there are concurrent sessions. You essentially cover all sessions under your allocated stream – mine was Social Science. So my report back is inevitably coloured by attending sessions geared to just that. But here are some of the highlights.
Laurel Sprague, newly minted ED to GNP+ impressed with an opening plenary focusing on human rights. “Despite the biomedical advances we have made there is so much to do” she said. “Are we ready for the hard part?” as she identified the human rights and social determinants of health interventions necessary to end the epidemic. HIV-positive herself for twenty-five years, Sprague launched in to the criminalization issue with vigour. “Living with HIV is not safe” she said. “Never before have we had a disease where we punish those with it”. She described how society is controlling and punishing instead of caring for people’s lives. Referencing GIPA and the Denver Principles she said “people with HIV are the ones responsible for driving change.”
She is right of course – it’s happening now more than ever and, in some cases, working spectacularly well. We saw it in Montreal and to observe it happening is very powerful, very moving.
Witness Chad Clarke, (left) an Ontario man and PositiveLite.com interview subject who testified before a packed assembly about his experience being incarcerated, criminalized for his HIV status. Clarke stole the show, choking back tears at the microphone as he addressed a capacity audience that he demanded hear him and his HIV Is Not a Crime-themed address.
Witness too a young man who, after the Montreal Community U=U forum, approached Richman and I and shared he had been quietly crying all through the presentation in reaction to the news, delivered by the panel, he was no longer a danger to anyone.
Back to the program, I really liked a series of presentations on research into various issues of concern to indigenous communities. I liked how it gives us glimpses into indigenous traditions too, Turns out that there is some nice work being done to preserve those traditions and incorporate them in to HIV work. The importance of story-telling, initially in oral form but more lately turned digital and applied to film-making also was really impressive. And it’s not just about preserving indigenous history but in challenging stigma, invisibility and negative stereotypes. Family and youth are at the centre of much of this work and it’s clear that indigenous-informed research design is emerging as a powerful approach.
A lunchtime session on reaching 90-90-90, with a focus on our ability to demonstrate exactly where we are - a continuing national nightmare in our view – revealed the usual mixed bag of provincial data. The fact that there is provincial jurisdiction for health care has turned around to bite us in 2017 as we flounder to produce national statistics that track success in ending the epidemic. We saw none of these here, but instead a hodge-podge of provincial data, some good, some woefully deficient. Manitoba, for instance, showed a treatment cascade with only three bars rather than four because it could not produce the fourth, couldn’t estimate or model the missing data. In 2017, we should be done with hearing the excuses we got from the podium. Producing epidemiological data is difficult work, I know, but some provinces are doing it and the rest must do better – and I said so from the conference floor.
As for the data we saw, it’s clear that most provinces are experiencing difficulty in the early stages of the cascade. In the case of Ontario for example, the final 90 has been reached with 94% of people who are on treatment being virally suppressed. The picture looks less rosy when you look at the percentage of people who are virally suppressed compared to ALL people with HIV – that’s 62%, but I see its climbing.
Not all sessions were winners. For example a dog of a presentation on the impact of “treatment optimism” and the notion that believing you are on treatment will lead to “unprotected sex” should have been solidly booed. It was old-school, pre-PARTNER stuff with scarcely a nod to U=U. even using the term “unprotected anal intercourse” throughout. (It’s largely an outlawed term now that negates the protection afforded by an undetectable viral load or the use of PrEP by negative partners.) Annoying!
I didn’t hear much research about gay and bi men. That was a bit annoying too.
I did hear a lot of good research about the impact of criminalization, particularly on women. We need to know how criminalization influences behaviours in ways that feel punitive and harsh, even to those not charged. We heard, for example, from the CHIWOS study how many HIV-positive women choose abstinence.
The protesting of criminalization had literally taken centre stage earlier that day as a coalition of community activists under the name Sero Syndicat Blood Union organized a protest. It disrupted proceedings, albeit in a planned way as protest do these days, in one capacity-crowd plenary session. The group did well in marshalling a critical mass of community activists calling on the Minister of Justice in Quebec to impose a moratorium on all HIV non-disclosure prosecutions, while law reform options are being explored and sound prosecutorial guidelines are being developed.
Meanwhile the CAHR board had, the evening before, endorsed a new doctors’ consensus statement, an update of the influential 2014 one. "Now that we have data that clearly demonstrates people with HIV with undetectable viral loads are at basically zero risk of infecting their partners, it’s past time for the law to catch up with the science,” said Dr. Mona Loutfy in a press release. Read the full story here.
That was a nice affirmation of the U=U message, of course, that activists like Bruce Richman have been peddling for the last year as some organization looked on and others joined the fight to make the science not only known but of immediate use to people with HIV and organizations alike. In fact U=U had come up frequently throughout the three days, mostly as a common understanding of the science but sometimes as a springboard for noting the need to do more so that the marginalized are not left behind, including in our treatment access and criminalization responses to the epidemic.
So it was fitting that almost at the close of the conference, CATIE chair Laurie Edmiston asked Richman (above right) to say a few words to the assembly. He spoke inspiringly of the uptake of the U=U message by over 150 community partners in 26 countries and invited the assembly to join in the U=U movement.
Then spokespeople for our little group of rapporteurs had the podium and delivered their 30-minite summary of conference highlights. And then it was time to go home.
I was very tired.