We’re in an HIV prevention revolution. Where is the excitement?
We’re in the midst of an HIV prevention revolution. Over the past few years, we have gained new tools and knowledge to prevent HIV, from pre-exposure prophylaxis (PrEP) to the knowledge that an undetectable viral load dramatically reduces the risk of transmission.
So where is the excitement, especially in communities hardest hit by HIV? In Canada, gay and bisexual men are 71 times more likely to become infected with HIV than other men. Why aren’t these new prevention strategies being shouted from the rooftops of more organizations that serve gay men?
Well, part of the reason is that service providers are grappling with the rapidly changing HIV prevention landscape. They are trying to convey increasingly complex sexual health information in a way that resonates with gay men and the context of their lives.
I learned this through a series of focus groups and telephone interviews I conducted with 30 gay men’s service providers in Vancouver, Toronto and Montreal between December 2013 and July 2014. An initiative of the Resonance Project, we wanted to find out how service providers are succeeding and struggling to meet the challenges of new HIV prevention knowledge.
“I need to understand it first before I can actually say it”
Service providers told us they need guidance around the range of new prevention options that are now available. They specifically mentioned the lack of consensus around the prevention messages related to undetectable viral load and PrEP, and the complexity of the information they are attempting to absorb and convey.
Viral load and even CD4 count or undetectable. Those are the terms that clinical people use and they haven’t translated well down to community level… When I first heard it, it’s just like, “what is this mumbo-jumbo term?” So I need to understand it first before I can actually say it… (Toronto service provider)
The basics, HIV transmission, I’m able to respond to that. I’ve been working in the field for a long time… On the level of PEP, PrEP and that which is new, I have to think before being able to respond, to be consistent in messaging. (Montreal service provider)
We’re not all on the same page sometimes. So that’s an issue. If we had more chance as a team just to sit down and share all the information we have… (Toronto service provider)
So many of us are still squabbling, fighting over things that should have been figured out years and years and years ago. We have some cleaning house to do as a community, as people who work in HIV prevention in gay men’s health. (Vancouver service provider)
In general there’s just a real lack of consensus on a lot of new biomedical reasoning. A lot of the research in the last five to 10 years has thrown a lot of different, potentially innovative and interesting ideas about HIV prevention, but very diffused and uneven uptake of those things by public health, which is traditionally a very conservative institution. And in community, there’s just such a diverse set of perspectives and attitudes around these things that we can’t really make up our minds how we feel about PrEP, how we feel about treatment as prevention. (Vancouver service provider)
I really like having very clear and simple directives. So knowledge translation for me is key; capacity building is key. (Vancouver service provider)
Service providers were quick to describe the challenges they face and to raise a number of critical questions. But in any qualitative research project, it is just as interesting to note what people don’t raise as a topic as it is to analyze what they say. This left me with a number of critical questions, which build on the ones brought up by service providers themselves:
- Where is the advocacy call to create the guidance, training and tools that would facilitate the work of service providers?
- Who do we think will advocate for and develop these tools, if not those of us working in gay men’s sexual health and HIV prevention?
- Why are organizations not only encouraging an approach that’s rooted in science, but also facilitating discussions that address the personal values and mistrust of new prevention technologies that exist within HIV organizations?
- What are we afraid of when it comes to talking about these new prevention options within our communities?
- Why are we not more focused on the exciting opportunities that come from having more effective prevention options than we’ve ever had at our disposal?
- Where is the excitement at the possibility of designing and implementing innovative new program models that are grounded in the context of gay men’s lives, that support the sexual health of gay men and that allow them to have the type of sex they desire?
As they are struggling to figure out how to incorporate new knowledge into their prevention work, service providers expressed a need for capacity building, strategies and tools to support their work. But clearly, the responsibility for leveraging the power of the HIV prevention tools we have at our disposal today doesn’t rest solely on the shoulders of service providers working in HIV and gay men’s health.
We could just as easily raise questions about the leadership of public health and healthcare institutions. For example, why aren’t health authorities and professional associations not actively engaged in endorsing, promoting, adopting and scaling up access to today’s range of powerful HIV prevention tools? Indeed, many of the challenges raised by service providers are directly related to—and created by—the lack of action from these stakeholders.
However, as people working on the front lines of HIV and gay men’s health, we also have some self-reflection to do. We have to ask ourselves some difficult questions.
Whether you’re involved in HIV prevention, gay men’s health, or are a gay man yourself, what do you think explains the lack of excitement for this HIV prevention revolution? What can we do about it? Share your thoughts with us in the comments below.
Marc-André LeBlanc has worked in the community-based HIV movement for over 20 years at local, national and international levels. Much of this time has been spent advocating for the development of new HIV prevention options. Marc-André enjoys movies, ice cream, popcorn, and taking full advantage of the range of available prevention options. Ideally, all in the same evening.
Malgré les succès des ARV rendant les personnes connaissant leur statut au VIH rapidement avec une charge virale indétectable dans un temps relativement court, le nombre de nouveaux cas ne diminue pas dans le milieu ou je travaille.
L’accessibilité à la PPE pourrait être plus facile ( pourquoi pas par les pharmaciens ).
Nous constatons aussi dans notre service, une augmentation significative des autres ITSS depuis une meilleure promotion et une meilleure accessibilité a la PPrE (PReP) et aussi du nombre grandissant de personnes déclarant être indétectables.
Dans ma pratique, je constate que les nouveaux arrivants et les étudiants étrangers sont particulièrement plus vulnérables. Ça pourrait peut-être expliqué mon manque d’enthousiasme.
Jean Boulanger, infirmier. Montréal.
I think a lot has changed since those interviews took place. Certainly at ACT we have been promoting PEP, PrEP and undetectable viral load to gay men through outreach (online and in person in gay bars and bath houses) and for Pride 2015 developed a campaign called HIV Now that touches on the dramatic changes in prevention. See: http://www.HIVnow.ca
Also, with the lead from HIM in Vancouver, many organisations – including ACT – raised awareness of the lack of approval of PrEP in Canada and thanks to an online petition and the work of many many individuals and organisations, Gilead Canada has applied to Health Canada for the approval of Truvada as PrEP in Canada. The tide is turning and it’s about time.
I think what comes through in this article is a lack of available time / resources devoted to keeping up with a changing field. Service providers want to be good at their jobs, that goes without saying, yet we are increasingly asked to do more with less, and that’s a problem. With the levels of nuance needed to grasp the complex and changing field of prevention, it’s no wonder there’s a lag. Easy to lay blame on people but I see this is a function of the field / movement’s current structure.
Depuis le début de l’épidémie ce que l’on appelle lutte contre le sida a été un instrument dédié aux idéologies de tous ordres :
lutte anticapitaliste avec la critique des labos
lutte moraliste avec la promotion de la chasteté , puis aujourd’hui avec le tout capote ( la capote étant assez désagréable pour rendre l’amour hors du couple bien moins demandé ou surtout plus mal vécu )
Où est l’enthousiasme ?
eh bien il n’y en a pas bien au contraire : c’est la fin du sida et l’angoisse devant le retour de la liberté sexuelle, et le triomphe de la science capitalistique.
Les demandeurs de liberté n’ont eu pour l’instant aucun accès véritable relatif aux révolutions préventives, délibéremment entravées, en particulier par les actuels responsables de la prévention sida dans la plupart des pays.
Based on personal as well as professional interactions with other gay/bi/queer men, some of the challenges I see are:
– lack of access (especially for PrEP); and
– fears/anxieties/lack of knowledge around biomedical technologies (including PrEP).
When these realities exist, it’s difficult for service providers to promote specific strategies, which may not be available to everyone and may even be resisted by some individuals.
et une très belle concertation de tous les militants traditionnels pour organiser l’impossibilité d’accéder à ses nouvelles connaissances, aussi bien tues que faussement présentées.
Les principaux éléments qui entravent la mise en place de la nouvelle prévention sont tout simplement les acteurs traditionnels de l’ancienne prévention, qui controlent et censurent tous les media parlant du sida.
I think the lack of excitement for this HIV prevention revolution is the fact that some gay folks are concerned PrEP only protect them from contracting HIV but questions other STDs, and taking PrEP which has side effects in some cases to prevent them only for contracting HIV automatically reduces the excitement.. I recently had a conversation with a peer online who recognize PrEP as an alternative to condom use & remedy to HIV prevention. This peer still have worries regarding other curable and treatable diseases out there. Thanks to Motivational Interviewing skills that helped rolled out a smooth chat ugh..!
Accessibility around the cost, approval of PrEP in Canada, stigma and discrimination, acceptance and more will help facilitate discussions at the community level lead by service providers working in gay men’s health and HIV prevention in order to support and encourage folks towards accessing a life changing revolution.
I will also echo John Maxwell’s statement ”The tide is turning and it’s about time” yes right about time!