CATIE’s Can’t Pass It On campaign rolled out across Canada in fall 2019, and featured 12 serodifferent couples sharing a simple message: People living with HIV on effective treatment can’t pass it on to a partner. Jonathan Valelly talks to three of these couples to hear why they got involved.
Melvin Blackwood didn’t feel like talking to anybody. He was in a bad mood that particular day and was trying to avoid any attention as he approached the bus stop. But Breklyn Bertozzi wasn’t willing to miss her chance to say hello. “I hit on him, brought him home with me and never let him go,” laughs Bertozzi as she recounts the lucky pickup. “I’m a very abrupt and blunt person.” As it turns out, Blackwood was an agreeable target. The pair opted to walk back to Bertozzi’s place. They got to talking along the way.
“She told me that she had HIV,” says Blackwood, who is HIV-negative. ”So I heard her out and managed to accompany her home with the intent of seducing her and making her my wife.” Bertozzi explains that people aren’t always so receptive when she discloses her status, but “he was educated about HIV, so he didn’t need me to say much more.” Eight years later, the pair are now raising their one-year-old daughter (pictured) and Bertozzi’s 15-year-old son in Hamilton, Ontario.
Blackwood and Bertozzi knew what so many couples discover—that a difference in HIV status is no reason to put the brakes on romance. And since that first encounter at the bus stop, even more possibilities have opened for couples like them. With a growing mountain of evidence behind it, the global HIV community has radically changed its messaging on sex. The research is unequivocal: People living with HIV who maintain an undetectable viral load through treatment cannot transmit the virus to their sex partners.
“Undetectable = Untransmittable” or “U=U” has rapidly taken hold as a shorthand within a buoyant HIV sector. But many people living with or affected by HIV aren’t seeing the change in their communities. “There are a lot of ignorant people out there,” says Blackwood, who finds that he and Bertozzi often have to educate people on the subject. “When I talk to certain people, I try to make them see how hard this thing is to pass on.”
Blackwood’s experience reflects how little many people know about U=U. That’s why a video campaign from CATIE called Can’t Pass It On gives people the opportunity to hear this from Bertozzi, Blackwood and 11 other couples who live the reality of U=U every day. Together, these real-life stories are meant to equip every Canadian with a clear and simple message: HIV-positive people on effective treatment Can’t Pass It On to a partner.
“This campaign is an effort to bridge the gap between what we know from the science and what people know in the community,” says CATIE’s Director of Communications, Andrew Brett, who oversaw the project. CATIE’s campaign is adapted from a project of the same name, launched by the U.K.-based charity Terrence Higgins Trust in 2018. Like CATIE’s, the Terrence Higgins campaign highlights real, relatable people living with HIV sharing their stories. Both campaigns seek to challenge stigma by explaining the crucial new science of HIV transmission to folks who might not otherwise encounter it. “It’s so important to make sure this is accessible and understandable to people who don’t know a lot about HIV,” says Brett, citing as an example CATIE’s decision not to use the word “undetectable,” since people may have never heard the term.
CATIE typically works with service providers and agencies, providing them the best and most current information on HIV. Brett says the decision to build a project for the broader public was bolstered by surveys demonstrating that many people were still not aware of the research on HIV transmission. “This is one of the first times in a very long time that we have an opportunity to share good news about living with HIV,” he says. “It’s unconscionable that this knowledge should remain hidden from the people most affected by HIV in Canada.”
Eka Nasution started to cry when he heard the news. The HIV test had come back positive. But he wasn’t the one who was now living with HIV. It was his boyfriend, Rainer Oktovianus. The two had gone for a routine test together but neither had anticipated the result. “It was just like, terrifying, because we lived in a society so far away from open-mindedness,” he recalls. It was 2011, and the couple had met a year earlier while working at a queer film festival in their home city of Jakarta. Nasution was worried for his partner’s future. “How do you overcome that? HIV treatment in Indonesia is still AZT.”
Oktovianus tried to comfort his partner. “I told him it’s fine,” he says, adding that his experience organizing with Indonesian LGBTQ+ communities gave him a different perspective. “I’m OK with it; I’m an activist. I knew a lot about HIV even before I was positive.” While activism provided a starting place for living with HIV, it also opened up new challenges for the two. In the years that followed, life for LGBTQ+ Indonesians went from bad to worse. A government crackdown was coupled with a wave of social media vigilantism, and not only did Oktovianus become a target—so did Nasution.
“We literally had to hide in our apartment,” says Oktovianus. The online harassment included public posts of both men’s identity cards and home address. While Oktovanius was used to confrontation, Nasution had mostly avoided too much attention, aware of how it could affect his career. “I was just afraid for his safety,” says Oktovianus. The couple looked for a way to move away, and Canada seemed like an obvious choice, especially since they had got married on a whim when they visited Ottawa in 2014. The couple successfully moved to Vancouver in March 2016, but the immigration process wasn’t without a few hiccups. Oktovianus was asked to prove that he could afford his HIV medication to get his study permit. As a result, he had to switch his regimen to AZT for a few months during the application process, which he had managed to avoid until then. The treatment is notorious for causing extreme side effects.
“It was just horrible,” recalls Oktovianus. “My skin was dry; I was losing my hair.” “The most important thing was his mood! It was so unpredictable,” Nasution interrupts with a smirk. “Some moments you’re happy and some moments you’re a pain in the ass.” Things did improve overall. Nasution says it’s much easier to be open about HIV and about being gay in Canada, and despite experiencing intense harassment in Indonesia, he didn’t hesitate to take part in the CATIE campaign.
Nasution knows firsthand how important it is to be informed about transmission risk. In fact, throughout so many changes—changes in HIV status, changes in safety, changes in country and changes in medication—the couple continued to use condoms. “I wasn’t sure if undetectable meant that I could do bareback [condomless sex] with him,” he says. With time, trust and increasingly clear evidence, this would eventually change.
The number of people living with HIV in Canada who reach undetectable after beginning treatment is generally very promising. But compared with similar countries like Australia and the U.K., Canada lags behind on getting people tested and diagnosed. An estimated 14% of people living with HIV in Canada don’t know their status, meaning they are not accessing treatment or aware that they could transmit the virus to other people.
The Can’t Pass It On campaign is a celebration of the fact that people on effective treatment can’t transmit HIV through sex. Crucially, it also aims to get that information to folks who are HIV-negative or don’t know their status as well as to folks who aren’t accessing treatment because of fear, secrecy or other effects of stigma.
Brett says that CATIE recognizes that not enough Canadians know their status. “Good health is the best motivation to get tested and get treatment,” he explains. But he adds that sharing the news about U=U can help chip away at the stigma that may prevent people from doing so. “It gives people one more reason to start treatment.” Brett points out that getting this information out is akin to reversing the official story given to the public since the beginning of the epidemic. “We are trying to undo more than 30 years of public health messaging that has said that people living with HIV are a risk,” he says.
This framing also affects HIV-positive folks’ view of themselves. “Some people are struggling to change their attitude towards something they’ve been told ever since their diagnosis, about the possibility of passing HIV to their partners,” says Brett. “It’s hard to unlearn that.” Nasution says that the hesitation about ditching condoms with his husband came from a shared place of caution, even after his partner had reached undetectable status consistently. “I was thinking, let’s just wait two or three years. But even though there were some scientific publications about undetectable people who can’t transmit, I still needed to wait for something more… some direction.”
Oktovianus also wanted his husband to feel sure. He approached their decisions around sexual health much like he did the escalating threats they faced in Indonesia—from a place of care and support. “The burden is also on me,” he says, echoing the risk narrative that has framed sexual transmission for such a long time. “For him, he needs all the scientific facts… I’m safe, I’m fine, but I wanted him to know all the risks before he decided.”
Eventually, once the World Health Organization and CATIE had endorsed the U=U message, Nasution and Oktovianus began having condomless sex. Even so, they still use condoms when it comes to sex with others, to protect against STIs. Online, they find that gay men prefer to eschew condoms because many are using pre-exposure prophylaxis (PrEP), a medication that prevents them getting the virus. But many are still less sure about viral suppression as a way to prevent transmitting HIV. Oktovianus is hardly surprised. “Convincing my own husband was challenging,” he points out. “I don’t know how to convince strangers or say, ‘Hey, undetectable, do you know what that means? Do you still want to have sex with me?’”
Despite the widespread stigma and misunderstanding, the two are cautiously hopeful. They decided to participate in the campaign because it has the potential to reach people in a different way. “There’s a chance that this campaign will get into people’s minds,” says Oktovianus. “But it’s going to be a challenge overall.”
Besides his parents and his partner at the time, Shan Kelley didn’t tell a soul when he got his HIV diagnosis. A multidisciplinary artist based in Montreal, Kelley moved in fairly progressive social circles. But even so, it was hard to know where to begin. At the time, most HIV awareness campaigns remained pretty fear-based and often trafficked in clichés. “There wasn’t generally a positive tone, even in testimonials from poz people,” he recalls. But within a year, Kelley grew more optimistic about his status. Soon, he was making work about HIV and practising what he called “radical disclosure.” That’s around the time he met his now-wife, Samia Hannouni. Hannouni had already informed herself about HIV when they started dating nine years ago.
“She made me feel safe,” says Kelley, adding that he doesn’t remember the two ever using condoms. Kelley and Hannouni continue to hook up and date other people, however, and he says he still commonly encounters “some heavy HIV-phobic shit” when disclosing his status. While frustrating, telling people has also become a kind of filter. “If you aren’t okay with it, I can’t be bothered,” Kelley explains bluntly, adding that it’s especially upsetting to hear discriminatory attitudes from someone he knows or trusts.
One evening in April, Kelley and Hannouni met an acquaintance for dinner. When the conversation turned to the criminal proceedings that faced a mutual friend who allegedly did not disclose their HIV status, their dinner partner said the charges were deserved. Canada has a reputation for aggressively prosecuting positive people for non-disclosure, even when transmission isn’t even possible, and Kelley was shocked to hear this from his friend. “I couldn’t bite my tongue; there was no resolving it,” he remembers. “It was really timely.” It just so happens that earlier in the day he had received an email looking for couples to take part in CATIE’s new campaign. Before dinner, he and Hannouni had agreed they would pass on participating. After dinner, they changed their mind. They are one of the three couples who appear in the French-language video.
Kelley is no stranger to doing testimonials as part of awareness projects (his story and work were also spotlighted in the Winter 2015 issue of The Positive Side). His own art practice often draws on his personal experience with HIV. He sees that kind of repeated sharing as necessary. “It has to fade into the normalcy of daily life, so that people understand,” he explains. “I just wish this messaging had been out earlier.”
Kelley emphasizes that HIV awareness work often drags behind the science, and that people with HIV are also experts on their own health, sex and relationships. In that spirit, Can’t Pass It On puts HIV-positive people and their partners front and centre, ready with backup from the latest research. “It’s one thing when you read something in the literature, and it’s another thing when someone shares their personal experience,” says Brett, from CATIE. “An HIV-negative person who is with an HIV-positive person telling you that there is no risk of transmission—that’s completely different than a scientist telling you that fact.”
Breklyn Bertozzi sees value in both. “Everybody learns differently,” she says. “Some people like to read facts, and other people like to see facts.” Despite being a very outgoing person, Bertozzi has not previously spoken quite this publicly about living with HIV. But she sees the video as a unique opportunity to get the word out. “The fact that I can use my relationship as an example of ‘can’t pass it on’ is really important,” she reflects.
Meanwhile, Eka Nasution still finds it best to read the data for himself. But he recognizes that a video with a personal touch might better reach younger folks and others who prefer digital media. His husband, Rainer Oktovianus, always the activist, sees the project as a call to action. “I can be my own living proof,” says Oktovianus. “My husband is still negative. What are you afraid of?”