BC’s YouthCO talks to PositiveLite.com about its decision to back U = U
Bob Leahy talks to dynamic YouthCO executive director Sarah Chown about how and why she led her agency to say what few others would then say: that if you are undetectable you can’t transmit the virus.
YouthCO, a Canadian youth-led HIV and Hep C AIDS Service Organization that seeks to reduce stigma related to HIV and Hep C throughout British Columbia through peer education and support, produced this graphic promoting U=U
Bob Leahy: Thank you for talking to PositiveLite.com Sarah. The obvious question I have to ask you is why? What made you decide as an agency to support the Prevention Access Campaign messaging about the impact of an undetectable viral load?
Sarah Chown: Well we have been talking about undetectable viral load and what that means for people living with HIV and those who are negative in our programming, including in an activity we call the Transmission Equation for quite some time now. So for us the U = U campaign was such a fun and exciting way to talk about a lot of scientific information and really boiling it down to an easy to digest focus. It was really an extension of conversations we were already having.
Were you finding that you were getting asked about the risk of transmission? Is this a hot topic in the community of young positive people there?
Definitely. We are hearing from the folks we are working with, folks who are anywhere between the age of six and thirty, questions about what does viral load mean, what does that mean about the sex I am thinking about having, scared of having, want to be having or am having? There are a lot of questions and we have seen throughout the HIV epidemic that people living with HIV have demonstrated a lot of care and concern and caution about trying to prevent passing on HIV to other people. So the conversations we are having are really about how viral load fits in.
So what’s your perception of the knowledge level out there? Was this news to people that they may not be able to transmit the virus?
We have four programming areas at YouthCO, and each program works with different communities. I would say that the knowledge level differs across our programs. From youth at Camp Moomba, that are either living with HIV or have a family member living with HIV, we get questions about whether they can have babies without passing on HIV, and in the same conversations, campers who can school our staff and volunteer team about the ins and outs of viral load. We also see this breadth of knowledge in our work with young gay, bisexual and queer guys, and Indigenous youth across BC. This is just one example of some of the benefits of the peer-based approach we use. However, the work we do with youth who have few, if any, personal connections to HIV, for example in classrooms, there is not a lot of understanding about viral load.
I think with many HIV-positive adults the penny has only just dropped that undetectable means untransmittable. They believed until now that they were infectious, that they could transmit the virus. Because nobody told them otherwise. That tells me there was a need for this kind of campaign, would you agree?
Definitely. There can be so much internalized stigma because of the messaging that has been happening ‘til now. This is such a great campaign where people living with HIV are really saying, “we don’t have to have that fear or anxiety any more.” With this campaign, people don’t have to read seventeen medical journals to know that.
Does it raise the question “so do I have to use condoms?” for your people?
Yes. All of our programs are led by peers so what that allows for are really honest conversations like “what do you think about that” and we are here to provide all the information that youth could want and letting folks interpret and use that information in ways that make sense to them. Some youth are undetectable and using condoms, some are not and what we have noticed is that doctors are providing different messaging to youth about this. Some youth have doctors who are telling them “you are undetectable, you are coming in regularly for care, you don’t need to use condoms with your monogamous partner” because there is not a concern about STIs and some youth are really embracing that. And then some youth are being told “condoms are still an important tool” for reasons of STIs but also that there is no 100% guarantee in any of the prevention work we do. So for youth that have lots of anxiety, the protection of using condoms and being undetectable can really help.
I see. What’s been the reaction to the campaign? Are people telling you that they like it?
Absolutely. We are really in the beginning stages of this work but we have had a really positive reaction from people so far. It’s on Facebook, Instagram, and Twitter but not yet on our website. (At the time this interview was published, YouthCO had posted information on their website at http://www.youthco.org/uequalsu.)
You are I think virtually the only agency in Canada to produce your own U = U messaging. What’s your take on why you are the only one?
One of our values is innovation and that allows us to get excited about innovative work being led by people most directly impacted by people affected by HIV. That’s one of the things that has made us different from other agencies in being able to embrace this message at this point.
But isn’t it the role of all AIDS Service Organizations to watch the science and make sure their programs and services and messaging is current and reflects the science as we know it?
Well in Canada there are lots of agencies we look to that are a little less institutionalized like CPPN, the HIV Disclosure Project. And definitely the work that has been coming out of PositiveLite.com and questions about why this hasn’t been taken up in Canada but has by Terrence Higgins Trust (THT) in the UK in particular. So I would say congratulations to PositiveLite.com for doing this kind of work. At YouthCO, we are all quite young. We are very happy to take our cues from people living with HIV who have been around the movement who are pushing us forward across the country and ask us to be accountable for to up-to-date science, especially when we know science has so often been used to stigmatize communities most impacted by HIV. In this case, there is an opportunity to use science to challenge myths that still persist about how HIV is passed.
I’m glad you mentioned that Sarah. I can’t think of many examples, aside from U = U, where a sexual health campaign has been led by, messaging devised and promoted by independent people living with HIV. It’s a highly unusual model but it seems to be working. But anyway, once you decided that personally you would like to do this was there much of a process to get the rest of your organization on side?
We are a really conversation–based organization. We have youth living with HIV as part of our staff team and on our board of directors and as volunteers. We had been talking about this issue and it was actually reading an article that Megan DePutter wrote for PositiveLite.com (Why some organizations are slow to adopt the undetectable=uninfectious message) that I realized we had informally been doing it but needed to talk through some of the ways we wanted to move that work forward and how some of our values would be informing this campaign. And we chose in particular to use the grammatically incorrect but less stigmatizing word “untransmittable” over “uninfectious”.
Yes we are moving towards using “untransmittable” everywhere now. I get why you saw the need.
The other reality we have in working through this is that youth in British Columbia is the age group with the lowest rates of undetectable viral loads, and Indigenous youth are overrepresented in this group. So for us it’s important for us to use this message in a way that doesn’t create a divide between people who are undetectable and those who are positive but not undetectable, or send a message to HIV-negative people that those who are undetectable are somehow better.
Well said Sarah. So what’s your closing message?
I think whether or not a viral load is undetectable, stigma has no place in conversations in sexual health messaging or services being provided to people living with HIV and at YouthCO we are really lucky because every day we get to work towards our mission of a world without stigma becoming a reality. So we are very excited about this campaign.
Good thoughts. I’m really liking what I’m hearing. OK Sarah. You have been great. Congratulations on the work you are doing. Let’s keep in touch.
About Sarah Chown: Sarah is very grateful to work with an incredible team of youth from 6 to 29 years old in her role as the Executive Director at YouthCO, located on the traditional territory of the Musqueam, Tsleil-Waututh, Squamish peoples. Every day, YouthCO works to reduce the impact of HIV and Hep C stigmas on youth throughout BC through our peer education and peer support programs. Sarah first came to the HIV sector through an internship in 2008, and has been involved in this work in Nunavut, Ontario, and British Columbia. Sarah can often be found reading, baking, or riding her bike.