I’m fortunate to attend many HIV conferences in Canada and sometimes elsewhere. They educate, they inspire and they allow for lots of networking – in particular the peer-to-peer engagement that so strengthens our response to HIV in Canada. CATIE delivered all of this last week in Toronto. While scholarships, through diminishing dollars continue to be hard to get, a sizeable contingent of people living with HIV were in the house, thanks in part to a financial arrangement with CATIE and the Canadian Positive People Network (CPPN). Not only were we in the house but people living with HIV were also on the dais.
First, possibly THE highlight. The Canadian government’s representative early on day one said U=U. Not directly, it’s true. But this: for people living with HIV on successful treatment regimens “there is effectively no chance of transmitting HIV to sexual partners.” That’s huge to hear it from the head public health officer in Canada, Dr. Theresa Tam, unexpected too. And while the use of the word “effectively” may irk some, it’s what we accept willingly from more conservative voices, including the CDC in the States. So Tam’s words were good and a huge win for the community and the Undetectable = Untransmittable campaign in particular.
Sidebar: of course it would be nice to have those words, or an approximation of them, in writing – a World AIDs Day statement from the Government of Canada would be great, for example. BUT the words were immediately immortalized on social media feeds everywhere. It was good to hear hero of the people, recovering stroke survivor Jeff Potts on the same panel - he is also Executive Director of CPPN - delivering the message that he too is undetectable and his virus untransmittable and asking that the Canadian government stand with the science.
In any event, a second highlight of the conference, I expect for everybody, occurred on day two with New York City’s Bruce Richman delivering on U=U. This followed his appearance on the podium at the ACT Community Forum two days before. That he had returned to the States in the interim is an indication of this leading community advocate’s impressive travel schedule. In any event, his engagingly powerful style of delivery is what many will remember but his words were equally compelling. “The best argument (for treatment) is to save our lives AND we need access to treatment to end the epidemic. What we still face, one of the key challenges of the campaign, is paternalism. CATIE just wrote an article about this. There is a history of controlling people living with HIV rather than trusting people living with HIV. So we have to fight that – and resistance to change. People have been thinking one way for years. On one hand this is what we have been taught and then on the other hand is the new science. We are still fighting that cognitive dissonance. What I say to people is “trust the experts”. The greatest minds in the field are all saying this is true - that undetectable equals untransmittable.”
CATIE scored points for delivering, in fact, a whole U=U related morning, with a panel of community speakers sometimes acknowledging, sometimes challenging Richman’s words and a later break out group designed for the community to react to the messages they had just heard
Also compelling was epidemiologist James Wilton from Vancouver presenting an overview of where Canada is situated in its response to HIV and 90-90-90 in particular. We live in an age where progressive countries are meeting those targets; Canada is not one of them. It’s at 80-76-89. That’s half way down the pack. It’s depressing. Despite the hard work of many, it’s clear, for example, we have major problems in the too narrow reach and intensity of the HIV testing we do. We are not nearly successful enough in identifying those who are positive but don’t know it, (21% of people living with HIV) and there is a worrying drop off in engagement, once testing positive. Existing policies won’t change that, say observers, but where are the new ones in an environment where funders speak out against them? Testing options seem mired in a past of indifference and red tape. In fact as a nation we have very few testing options compared to others and no access to self-testing in particular. We need desperately to follow the best practices not that lie within Canada but in other countries, like the UK which is seeing dramatic reductions in new diagnoses lately.
On this note, B.C.’s Mark Gilbert gave an excellent rundown of testing options that exist around the world. It depressed once more how Canada’s range of options was so tiny in comparison.
What else was good? Right up there was the range and accessibility of Hep C conversations. I must confess that despite funders being determined to focus on HIV Hep C and STI’s in combination, I am not. My focus lies solely on HIV. OId school, blinkered or just stubborn? We people living with HIV need to acknowledge some us live with co-infection, but don’t need to follow the lead of funders nin lumpin g us all togerther. That being said, I turned my attention to Hep C for this Forum and emerged fascinated – by the radical improvement in treatment options and by the similarities we face.
I also enjoyed the opportunity to attend CATIE’s AGM, wedged in between the heavy conference programs for the two consecutive days in Toronto. AGM’s can be all business but ED Laurie Edmiston’s candor in responding in detail to a question from the floor about the continued viability of gatherings like the Forum was impressive. Is this the last Forum, the last deliberative dialogue? Apparently so, reported Edmiston. CATIE is the victim not of reduced funding (it has remained stable where budgets of others were slashed) but of an expanded mandate in other areas. The gate was left open, however, to the possibility of a series of smaller regional forums, although as Edmiston pointed out, the overall budget in that scenario would remain problematic.
(Left to right) PositiveLite.com editor Rob Olver, CATIE’s John McCullagh and Laurie Edmiston, Prevention Access Campaign’s Bruce Richman, Bob Leahy.
The Forum, as ever, while a wildly positive experience, and despite best efforts, provided a challenge for participation of people living with HIV. For those lucky enough to attend, it was not a picnic. Sometimes we are away from home for days. Some of us had back-to-back commitments for other events. My own crazed schedule, for instance, included an ACT Community Forum one evening, then the CATIE Forum, then the CPPN two-day AGM. I returned home exhausted, physically and emotionally drained. I mention this not for sympathy, but to make the point that we work hard. We participate, sometimes in leading roles sometimes not, we learn, we question, and we return to our own communities more powerful than ever before.