Kudos to us for keeping the lid on the epidemic. But is this good enough, when we should have learned much from thirty years of fighting, when health care is generally good, albeit uneven, and when antiretrovirals have the potential to all but eliminate the risk of transmission? And are we progressive enough or are our neighbours to the south outstripping us in embracing innovation to curb new infections?
A report card for Canada in 2014 will inevitably record a mix of the good and the bad with many “must try harders” thrown in for good measure.
Here’s what’s good . .
1. Our people who work in the community based response to HIV – and I include funders, national and local organizations, and those who work or volunteer in this field, are amazing. They are without doubt some of the most committed, intelligent and talented people I have ever had the pleasure to meet. They are the strength of our movement, the asset that seldom gets enough recognition. Without them we are nothing.
2. We have a health care system that is the envy of many nations. Not perfect it’s true, and there are gaps in access to care that often mirror our marginalized makeup, but the HIV community is well served in comparison to many other countries. True, access is uneven – some jurisdictions provide HIV drugs for free, some don’t for instance – but the ability to pay for drugs is a relatively rare barrier to treatment. Despite heavy caseloads, the standard of care we receive in clinics and doctors’ offices is good too. And engagement in care, while still showing a ways to go, is high and getting higher, as is the number of those with an undetectable viral load and living healthy and long lives.
3. We’ve started to recognize the treatment cascade as an important surrogate measure of how well we are doing. True, as a country we have some work to do in gathering the required data, but recognizing this powerful tool as a way of measuring progress and identifying areas which need work is a very good step.
3. As people living with HIV we do not experience the same level of human rights violations as do those in other countries. It’s true our country’s record on criminalization is pretty dismal – we are in fact a world leader in prosecuting people for non-disclosure – but in many other areas, we legislate against discrimination and our rights and liberties are relatively well protected. This shows up in important areas, despite the Conservative government’s best efforts, like a relatively liberal attitude towards harm reduction.
And here’s where we fall down. Unfortunately the list is longer . . .
1. The prevalence of HIV in some communities, notably the gay communities in our larger urban centres, is shockingly high – as high as HIV rates in South Africa in fact. Given the time and money we have poured in to prevention over almost three decades, that’s an indictment not of the gay community itself, but of the strategies we’ve tried – and failed – to turn things around. (If we had done nothing, the numbers would be worse, of course. My take is that as a measure of success, that’s a fail. But others will disagree.)
2. Our nationally coordinated response to HIV is a shambles. True, the fact that heath care is a provincial responsibility can be a hindrance to consistent messaging and uniform practices (if indeed they are applicable), but the absence of a national HIV strategy, combined with interprovincial wrangling on things like treatment as prevention (TasP) means that we have an infrastructure that guarantees unequal access to treatment, a lack of treatment guidelines and inconsistency in prevention approaches or even ideology. This isn’t just frustrating; it’s often detrimental to HIV-negative and -positive people alike.
3. Funding is a persistent distraction. Our provincial and national organizations argue we don’t have enough money from the Public Health Agency of Canada (PHAC) but having lost that fight quite resoundingly, the argument is now about how that money is distributed. PHAC wants to spread the AIDS community-based funding pot between HIV, Hep C and other blood borne infections (BBI’s) and include other non-traditional HIV/BBI service providers in the mix, all drawing on the same limited pool of money. With ineptitude to spare they have not attained agreement on how to do this, and will be spending your tax dollars for yet another three years deciding just how to do so. Meanwhile community consultations have been notable for infighting, jockeying for position and a marked lack of anything approaching vision. There are no winners here and it’s hard not to give this process a resounding F.
4. At a time when innovative approaches are essential, there is far too much clinging to old and failed strategies. We’d argue strongly with those ASOs, for instance, who still maintain condoms are the most effective form of HIV prevention for people living with HIV. The science strongly supports adding to the arsenal things like using ART to reduce transmission risk and, PrEP and PEP for those still negative, supported by innovative approaches like home testing,These approaches, though, are either not available in Canada or not well supported by the prevention community. Biomedical solutions, regarded elsewhere as a key component of an enhanced and more effective approach to HIV prevention, are so frowned on in some quarters that TasP does not even figure in some provincial strategies. That is despite Canada having world leaders in TasP in its midst, globally respected but met with disdain and distrust in many parts of Canada.
5. Many who work in the field have failed to keep up with the science that should be driving HIV prevention and support. Blame heavy workloads (although many case loads are in fact down) but AIDS Service Organization staffers are often lost in a sea of essential-to-know but admittedly complicated new evidence on risk of transmission in particular. While national organizations like CATIE do a stellar job in trying to address their needs, the inconsistency in messaging at the client level and painfully obvious knowledge gaps across the system ensure service shortfalls for people living with HIV while new infection rates continue largely unabated.
6. Inroads are being made, but the role of people living with HIV in the response to HIV is muted at best. We have no national organization for people living with HIV, and collectively no one advocates for us except in specific areas like the legal (kudos to the work done by theCanadian HIV/AIDS Legal Network), or for specific marginalized groups (excluding the largest of these – gay men, who go largely unrepresented). The reality is that many (most) people living with HIV are dealing with their HIV infection in ways that they see require neither support nor advocacy. Having said that, given issues like criminalization of non-disclosure, governmental opposition to harm reduction, ongoing stigma and the required role of people living with HIV in prevention issues, the need for advocacy/activism is ongoing, but sadly is not being met.
It’s tempting to go on with this list of issues but the message is probably clear. Our successes are outweighed, despite our best efforts, by challenges after all this time we have not succeeding in meeting.
Solutions? It’s tempting to say just stop doing the wrong things. If only it were that easy, but here’s a mix of attitudinal and practical changes that have the potential to lift us a little from the mire.
1. Let’s be a little more self-critical and end the "group think", prevalent throughout our community that is the antitheses of progressive thought. Progressive thought has instead become an underground phenomenon, whispered between confidants but seldom seeing the light of day for fear of censure. The result is a game if not ruled by dinosaurs, although they are often called that by progressives, but by those who require absolute proof of everything and take more comfort in the status quo than is healthy. Let’s rip away the veils, not be afraid to say what we think, and watch the wheels of progress start to move.
2. Nowhere will the results be more evident than in the overdue uptake of new technologies for HIV prevention. Where they are not available in Canada – Truvada licenced for PrEP and home testing come to mind – the voices of progress should be pressing for them. And let’s stop the suspicions about TasP. The evidence is in that TasP works, despite what you hear from the naysayers, despite the challenges in implementation in specific communities like the MSM community where prevalence is so high that extraordinary efforts are required to achieve success. No more “it doesn’t work for gay men” please.
3.Controversial I know, but let’s acknowledge that the fight to maintain HIV‘s special status is unlikely to be won. One could argue the issue of the exceptionality of HIV until one is blue in the face (some of us already have) but the fact is that HIV is now a chronic manageable condition. True it’s criminalized, true it’s incurable, true it’s stigmatized like no other but – and here’s the rub – it’s 180 degree changed from two decades ago when people were dying. Failing to acknowledge that makes us look like spoiled brats – and we’re not. But who in conscience can argue it’s as serious as it was back then. That means we need to face the prospect of a diminished response – and perhaps recognize too that in our getting to this point, we have become overly fragmented, bogged down in administration rather than service delivery and, sadly, not always effective. That means a radical examination and realignment of how we do the work emphasizing efficiency, effectiveness and results, making the same money (or even less if we are faced with that) work harder, in other words.
4. Competency to do work that has become a highly specialized, science and research-driven profession – this is no longer just “social work” – has become a huge issue which can no longer go ignored. Instead, learning must be ramped up so that those who work directly in prevention and support are equipped with the knowledge to do their job. There is a huge investment in training to be made here – one could argue we should be moving towards professional accreditation to do this work – but be that as it may, and recognizing that new funding is scarce to non-existent, it’s inevitable that we reinvest somehow, or face a continued ineffective response.
5. Let’s start working together rather than fighting together. The interprovincial name-calling, considering that we are all fighting the same fight, must stop. There are areas – not all, for there are regional differences to be accommodated – where common pan-Canadian approaches to prevention, testing and access to care, for instance, make abundant sense. We need to respect the work of those we do not agree with, learn from each other and fight back our prejudices to acknowledge which approaches work. (If you detect a subtext of getting our act together and collectively aligning with the multitude of nations/jurisdictions who along with UNAIDS have endorsed TasP and are successfully implementing it, you are correct.)
What’s the likelihood of much of the above happening? Not all that great, but here’s the bright spark in an otherwise rather dark picture of where we stand. Progress is being made. And dialogue is occurring. More so outside Canada perhaps– social media is alive with talk of PrEP, for instance, right now, that has overflowed even into staid institutions like The New York Times. Some of that discourse, which PositiveLite.com regularly publishes, influences what we talk about here in Canada and hopefully ultimately act upon.
Minds are changing too. Where once TasP had few backers outside the province of British Columbia, it’s hard not to see the firming up of the evidence for it (think PARTNERfor instance) also reflected in the number of people who support it, however tentatively.
And the funding realignment that is happening in Canada, which essentially means less money for ASOs who may well also be called upon to cover more ground, may result in a shakeup and realignment of services that ultimately may (and I stress may) be for the best. The optimist in me hopes for this anyway.
And ultimately it is optimism that is required here. True the “getting to zero” rhetoric may have to be scaled down a notch – it’s already been labelled a “necessary fiction" by some – in favour of more realistic expectations. And that’s OK. But having an eye on the prize, however we define it, is essential. So having a very keen focus on ending the epidemic, or at least bringing it to its knees, is a must for all. Let’s see that kind of goal reflected in the missions of all our organizations – currently it exists only in a few – because with a mission that challenges the status quo comes programs, interventions and services that are more likely to make a difference.
Overall, it’s hard not to give Canada a disappointing grade right now – something like a C—perhaps – and given the talent in our community we can do so much better. Pulling together, thinking progressively and strategically and harbouring a determination to leave the status quo behind will go a long way.
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