CTAC executive director Shelina Karmali, award winner Francisco Ibanez-Carrasco and board chair Terry Pigeon
The three-day CTAC (formerly known as Canadian Treatment Action Council) 2017 Treatment Access Conference held in Toronto last week was particularly strong on PrEP and Hepatitis C (Hep C) treatment advocacy, What struck me most though was its well-defined activist roots and embracing of community mobilizing, community engagement and grass roots advocacy. Both presentations and discussions from the floor had a more radical, "challenging of the status quo" feel than is common at most HIV conferences. And the crowd present was the right one to run within that framework.
That's to be expected. We are at a time in both the HIV and Hep C epidemics where solutions are out there – PrEP and Hep C treatments are great examples - but where access is inexcusably mired in red tape, regulatory and pricing issues. The system is hurting us and people are suffering.
Not that grassroots activism on the treatment front isn’t happening – and working. The recent success, notably in Canada, scored by people living with HIV, community members embracing the Prevention Access Campaign’s Undetectable = Untransmittable (#UequalsU) message is remarkable. And that didn’t go unnoticed at the CTAC conference. A personal highlight, in fact, was the well-received endorsement of U = U from executive director Shelina Karmali, another organizational voice confirming that people living with HIV who have a sustained undetectable viral load don't pass on HIV to their sexual partners.
Keynote speaker Louise Binder, as a founding member of CTAC, exemplified the role of grass roots activism. She spoke eloquently of our movement’s early leaders. And Francisco Ibanez-Carrasco, presented at the opening dinner with CTAC's prestigious Glen Hillson award by CTAC chair Terry Pigeon, is another example of someone who works within the system but make waves from outside it.
My own interest was, surprisingly, peaked most not so much by the HIV-focused first full day but the second day, largely devoted to Hep C issues. I say surprisingly because while from an administrative standpoint – i.e. by government dictate – the response to HIV in Canada is now officially lumped in with Hep C, STI’s and other blood-borne infections – the marriage has been an uneasy one in anything but name and funding decisions. PositiveLite.com, for better or worse, is HIV all the time, seldom acknowledging Hep C, despite the high rates of coinfection between the two. (Coinfection rates are variously described as between 25-60%.) The Canadian AIDS Society has been torn by debates amongst its members in the past as to whether their mandate should include Hep C. As far as our large organizations go, only CATIE, labelling itself Canada’s source for HIV and Hepatitis C information, is clearly dual-focused. Look south of the border and the confluence of an approach to HIV and Hep C is even less apparent.
The result is that people like myself who have worked in the HIV field for over twenty years don’t always know very much about Hepatitis C. The CTAC Treatment Access Conference helped change that.
Unlike HIV, Hep C is a curable disease but, like HIV, still associated with much stigma and human cost. Advocacy, we are told, is hindered by the fact that the Hepatitis C infected tend to be socio-economically disadvantaged people, often associated with injection drug use, and thus seldom listened to. And while there is now effective treatment available, it's hugely expensive so is typically delayed until the patient shows deteriorating liver function. That delay in treatment access is wrapped up in a bundle of regulatory and drug pricing issues which the conference explored in some depth.
The official view is that we can’t treat everyone infected at current pricing, hence the “wait until you are sicker” approach. That is drawing community ire. One panelist expressed the view that “it sends our most vulnerable the message that they aren’t worth spending money on”. That message plays out against an array of early symptoms, emotional cost and loss of productivity and quality of life.
Dr. Lisa Barrett, an eloquent infectious disease specialist said politicians only act to right inequities like this when there is pressure – collective activism - from people. Activist Zoe Dodd (left) pointed fingers at big pharma as the culprit, citing the need to put the drug industry back in the hands of the people if drugs are to be made affordable. CTAC's Adam Cook was a fountain of knowledge of drug pricing and regulatory issues throughout.
I learned a lot. Clearly there is a lot of work to be done on the Hepatitis C treatment advocacy front. It’s encouraging that the CTAC conference raised awareness of its extent and that the work continues under their umbrella. Let’s hope that the federal government and PHAC in particilar sees its way to extending CTAC funding for this and other important and related work.