How I Would Put an End to HIV
Panellist Alex McClelland is an advocate, educator, community organizer and researcher. Since his HIV-positive diagnosis in 1998, Alex has been involved in many Canadian and international civil society organizations working toward addressing the social drivers of the HIV epidemic including stigma, discrimination, poverty and other forms of inequality. Alex sits on the Steering Committee of AIDS ACTION NOW! a direct action activist organization working to realize the human rights of people living with HIV and Hepatitis C. Alex is currently completing his Master’s degree in Environmental Studies at York University.
“How I would put an end to HIV” was originally published on the Positive Lite blog in 2011, and is reproduced here by permission of the author.
How I Would Put an End to HIV
by Alex McClelland
I was recently asked to present at the 20th Canadian Association of HIV Research (CAHR) Conference for the session “Ending HIV by 2020: Mission Possible?” along with Dr. Rupert Kaul, Dr. Ahmed Bayoumi, Dr. Patty Daly and Dr. Michael O’Shaughnessy. The awesome folks at PositiveLite have asked me to turn my presentation into a blog post. So I have reworked my thoughts to present them here. I’m very happy to finally be posting on this site, as I read it all the time and love it!
CAHR asked each presenter to present our thoughts on how we would end HIV. I want to first acknowledge that this task was intimidating to undertake and was very humbling for me.
I’ll discuss how we can stop HIV incidence by the year 2020 from a community perspective – a rather daunting task, especially for a white guy when there is so much diversity in our response. However, gay men like me continually make up a disproportionate portion of this epidemic, so it is appropriate that I was tasked with this exercise.
Speaking from a community perspective is challenging. While “community” does imply that we are working together, which I like, it is a highly complex term, which is often imposed by outsiders onto groups of divergent people who may only have one thing in common (like being HIV-positive for example). So one of the consequences is that the term community conceals more than it reveals. I needed to acknowledge this before moving on to the fun stuff.
Preparing for this, I conducted a mini research survey and sent it out to my colleagues, allies and friends. In the end I had 62 respondents and 30 some pages of input from my “community,” half of whom are living with HIV.
So in this piece, I acknowledge that I am the one who wrote it, but it draws widely on the collective knowledge of those who completed the survey.
One other caveat before beginning: I am not going to discuss what is needed to end HIV by 2020. But I am going to address where we are going astray and where we need to go.
After almost 30 years we know a hell of a lot about how to end HIV incidence, about what we need to do to turn this epidemic around in Canada. We have many effective tools and strategies, frameworks and a huge number of assets, leaders and resources.
Activists have known what we need to do to end HIV for a long time. Ugandan activist Beatrice Were once wrote:
…as a woman living with HIV, I am often asked whether there will ever be a cure for HIV/AIDS, and my answer is that there is already a cure. It lies in the strength of women, families and communities who support and empower each other to break the silence around AIDS and take control of their sexual lives.
Were is speaking from a context where the primary mode of transmission is through heterosexual sex and where women are most vulnerable. But her sentiment is applicable in Canada where we also know what we need to do to end HIV. But just because we know doesn’t mean it’s happening.
To have the greatest impact our response should look like a balance of research, services and social change. But in fact our Canadian response today is focused primarily on research and service provision. As a result we are failing on a whole bunch of levels. Let me explain by using the education sector and drug policy as case studies to highlight this gap in knowledge and action.
The Education Sector
We have known for a long time that we need a comprehensive sexuality curriculum in our schools that includes a focus on sexual diversity and which addresses homophobia. But we have widely failed at implementing this consistently or effectively in Canada. HIV transmission knowledge among our students is lower today than it was in the ’90s. In a 2003 study (yes it’s old, but Canadian research is slim in this area) “approximately 66% of Grade 7 students and 50% of Grade 9 students did not know that there is no cure for HIV,” and “some students have the misconception that there is a vaccine available to prevent HIV” (Council of Ministers of Education in Canada, 2003).
Action to address this gap would require advocating the Council of Ministers of Education for policy change to mandate consistent curriculum on comprehensive sexuality education across Canada. This hasn’t happened and we are failing to ensure this human right is realized.
Drug Policy
We know that ending the war on drugs, viewing drug use through a public health, not a criminal lens and ensuring the provision of harm reduction interventions to people who use drugs leads to decreased HIV and Hep C transmission rates. For example InSite, the safe injection site in Vancouver, has been shown to reduce HIV and Hep C infections, support health-seeking behaviour and reduce deaths from overdose, but has failed to get government support on ideological grounds.
What we have learned is that there are limits to where science can take us as our Federal leaders and institutions are not supporting or carrying out this work. As a result, we are losing ground. An example of this failure is the Public Health Agency of Canada. While at a community level we understand harm reduction as a staple public health program, our national Public Health institution is not allowed to acknowledge or practice this most basic tenet of public health.
The Vienna Declaration is inconsistent with Canada’s National Anti-Drug Strategy… Canada will not support the document… The government of Canada believes that the best way to address the public health consequences of injection drug-use is to prevent people from using illicit drugs in the first place. (Charlene Wiles, Public Health Agency of Canada, 2005)
Politics has prevailed despite how much science we promote.
Props to all those working to produce this great data, but without a systemic advocacy force to push back against ideologically driven policy-makers the right to health for people who use drugs is still not realized. Another fail.
That was my cursory overview of the gaps in our response. Why are we failing in these areas and why is there this gap around addressing social change?
Well, our range of options, our possibilities and our imaginations are limited because of a number of factors constraining our efforts:
Neo-liberalism and the bio-medicalization of everything.
HIV is the first global epidemic to come about under neo-liberalism. As a result, our response efforts have been continually constrained to fit within this ideology. One that favours individualism, competition, efficiency, corporate rationalities, privatization, decreased spending on social services such as health and education. An ideology opposed to addressing social and structural issues that drive HIV. This kind of thinking doesn’t value human rights, because human rights are not a commodity that can be traded in the market. Neo-liberalism views people as rational agents who live in a vacuum, a view that simplifies HIV risk and responsibility. Which is why approaches trying to change individual behaviour have prevailed. If they would only just use condoms, right?
As you may have noticed, I was the only person asked by CAHR to present during this session who doesn’t have a Dr. in front of their name. The reason I point this out is because for me it nicely illustrates what forms of knowledge are privileged in the response to HIV. In Dennis Altman’s book from 1994 Community and Power, he stated:
What has become a regular division of discussion at both international and national conferences into four tracks – Basic Science, Clinical Care, Epi, Social Response – has come to suggest that this is the natural way of conceptualizing the epidemic… which has the effect of making other topics, particularly with political or cultural content, appear peripheral… (Dennis Altman, Power and Community, 1994)
This quote is still relevant today; our conferences are still structured in this hierarchy of knowledge. So I propose that at the next CAHR conference we throw this hierarchy out and integrate all the tracks together based on topics not disciplines.
During the CAHR conference, American social scientist and policy-maker Judy Auerbach said that when looking at how to undertake research we should let the questions drive the method and not the other way around.
But with the HIV response our methods are predetermined as defined by neo-liberalism and bio-medicine and do not challenge these world orders.
In Canada, we have around 120 community-based organizations that work on HIV. Most of these are AIDS Service Organizations (ASOs). Have you ever questioned why we have so many organizations that only provide services or conduct research?
Imagine for a minute that we had this many AIDS Social Change Organizations. Imagine if our efforts were dedicated upstream at the root causes of social inequality, at challenging harmful public policy and government inaction. This is not meant in disrespect to the many amazing people who do vital work in these organizations.
I’m sure all the ASO Executive Directors will say: “Well Alex, we can’t do advocacy work – we are not allowed to.” And yes this is true; a majority of our organizations can’t even say the word “advocacy” let alone do it.
Organizations with charitable status can only use 10% of their budgets on advocacy work. But if the 10% rule isn’t working for us then we should work to change it. Or we should develop a new mechanism to systematically fund advocacy and social change work. We can do better and we can be more creative.
An example of successful activism is Ontario’s drug coverage program, Trillium. This program covers the cost of my $1,700 a month HIV meds. And today we take this for granted, but why does this program exist? Because of AIDS ACTION NOW! who fought our government in Ontario to make this happen in the 1990s. Just imagine how much the quality of life has improved for people in our province as a result of this piece of social change work?
So wrapping up, to turn around HIV we need to acknowledge the constraints we are under and reflect on how they can create greater inequities and limit what is possible in our work. We also need to reflect on how through the regimes of neo-liberalism and bio- medicine we can end up reproducing harmful practices, which are counter to the goals of this response.
I am envisioning a better world in which equity and rights are our goals as opposed to maintaining our funding and not wanting to offend anyone, a world where our response values and supports sustainable social change work. When I talk about social change, I am talking about working to challenge harmful policies, laws, and practices that those in power are inflicting on our communities. I’m talking about working to end poverty, challenging homophobia, and doing antiracist and decolonizing work. I’m talking about realizing basic human rights, rights which are still out of reach for lots of Canadians.
Social change work is hard, scary for some, and not always popular. But it is a vital component of what we need to do if we want to honestly and appropriately change how we respond to HIV. We need to be brave. We need to reorganize our resources and we need to slowly chip away at the systems constraining our work. This is what we need to do to end HIV incidence by 2020.
Pretty easy, right? Let’s get to work.
Thank you to Nicole Greenspan and Adrian Guta who were great supports in the development of this presentation.
Alex will be participating in our first post-show panel discussion related to The Normal Heart – “HIV/AIDS in Toronto: Past, Present & Future” – on SUNDAY, OCTOBER 23, at 5PM. Please join Alex and other leading activists, doctors and educators for this multi-generational dialogue moderated by artist, educator and Toronto People With AIDS Foundation Poz Prevention Coordinator Mikiki. Read more about the panel discussions.
