“It was the best of times; it was the worst of times: said Charles Dickens. “It was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity." That was about Paris in 1869. It could have been written about Canada in 2017 and the state of our response to HIV.
The best of times?
Many feel we are approaching the end of the epidemic with 2030 set as the target date by UNAIDS. We are closing in on 90-90-90 targets which means more people living with HIV are engaged in care, on treatment and virally suppressed. Canada has not, but a string of countries have already achieved that goal. And with new prevention technologies being more and more talked up and accessible, the oft-repeated adage “we have the tools to end the epidemic, we just have to use them” has never felt more believable.
The worst of times?
Those same tools, like PrEP and treatment as prevention (TasP), have been under-utilized, at least in Canada, and we are paying for it. Meanwhile government funding is problematic. For now, we’ve seen no real reductions but the same pool of dollars is being stretched further and wider. Big pharma is also less generous to HIV than it has been in the past. That’s not good for AIDS Service Organizations and NGO’s. It’s not good for our national partners like CAS CATIE and CTAC... It’s not good for people living with HIV. In Ontario, my home province, many feel provincial funding is at risk too. The reason? AIDS is becoming officially more “normalized”. It’s likely the end of “AIDS exceptionalism”. Meanwhile the epidemic is not under control in my own country: numbers of new infection are increasing. The number of people living with HIV grows every year too.
The impact on people living with HIV.
It’s already much harder for people living with HIV to gather, to learn from each other, to provide input into directions and programming decisions, to advocate against injustice, to organize. It can look like GIPA (The Greater Involvement of People with HIV/AIDS) is under attack.
Nothing about us without us? Well not exactly. Here are some examples:
The federal; government is increasingly funding HIV prevention rather than support for people living with HIV. The Toronto Star highlighted the impact of just that this week (“B.C. HIV support centre for women closes due to lack of funding”). More agency closings are inevitable.
Scholarships for people living with HIV who wish to attend conferences ABOUT THEM are more difficult to come by than ever. The federal government is no longer funding gatherings, including of people living with HIV, except in limited circumstances. So events like the CATIE Forum are now a bigger challenge for people living with HIV to attend, and may in fact disappear altogether. That picture is global. Try getting a community scholarship to attend one of the big International AIDS Society conferences, packed with thousands of people who work in the industry. If you are a community member not working in the field it’s very, very hard.
In Ontario, the Gay Men’s Sexual Health Alliance, which brought us the excellent thesexyouwant.ca campaign that was informed and improved by community including those like myself who don’t work for an AIDS Service Agency, is now shutting down its various community advisory groups. These include one specifically for poz gay men. Community members who work on sexual health matters, people living with HIV who don t work for agencies, are no longer eligible to attend their annual summit. Protests have gone unheeded.
The good news
When push gets to shove, we people living with HIV tend to push back. In fact we excel at it. For example...
The entire U=U movement was constructed because community, people living with HIV, was not satisfied with the way AIDS Inc. (the name given to the funded sector) was doing its job. They found those paid to do this work were routinely overstating risk, not keeping up with the science and unnecessarily stigmatizing people with HIV in the process. Enter the community-led Prevention Access Campaign (PAC), which, through exceptional leadership and savvy social media skills, reinvented messaging around undetectable viral load – and got it right. Globally. More importantly it created and fostered community, not only of people living with HIV but of the organizations which support them. To date almost 400 organizations in over 50 countries count themselves community partners. In a show of strength seldom seen since the early days of the epidemic, the U=U effort is still led by people living with HIV.
Getting PreP into the hands of those who need it is a task largely taken on not by AIDS organizations or governmental bodies but by community. In Ontario for instance, the move to get Truvada approved for use as a preventative tool and then to get it listed on the provincial formulary has been led by community advocates. A similar trend has been seen in the UK.
Criminalization of HIV non disclosure is unjust, most agree. It would be uinfair to downplay the leadership of organizations like the Canadian HIV/AIDS Legal Network or HALCO in moves to get our federal government to review the law. At the same time, people living with HIV have played a very significant role. In the US, we have seen the rise of HIV Is Not a Crime and its training academy. In Canada, we saw anti-criminalization community activists take to the stage to interrupt CAHR earler this year. In either case, people living with HIV have been front and centre.
For years, people living with HIV have not had a voice of their own on the national stage. The Canadian Positive Poeple Network (CPPN), formed two years ago, has yet to make a real impact but it has secured federal fuinding to change that. Thus it’s likely that late 2017 will see a national gathering of people living with HIV convened under the CPPN umbrella. That speaks well for future GIPA-driven initiatives.
The bottom line.
It may feel that groups and organizations support GIPA outwardly, but only if they have the money to do so. In fact empowerment and engagement mechanisms are often the first to go when money is tight.
The same is true of engagement with other marginalized groups. GMSH, for example, defunded not only the poz working group, but also working groups for trans men, for rural-based people, and of racialized and aboriginal men. The accompanying talk is often of “restructuring” and “refocusing” but don’t be fooled, underneath all this you will find money is too short to fund more inclusive levels of community engagement.
In an era where accountability to the community is an abstract concept rather than enshrined in procedures and practices, it’s easy for GIPA infractions to go unheeded, to slip under the radar and thus be unchallenged. But to every action there is, or should be, a reaction and we have seen how community action can indeed make a difference.
So if you feel that GIPA isn’t being observed, speak up. Fight back. Organize.
Protest has worked wonders elsewhere and can work wonders in your corner of the ring too.