“The “fabulousness” of this news cannot be understated. With or without a condom, if you’re undetectable you won’t pass along HIV! This is an absolute game-changer and those who live with HIV can proudly share this information” Laurie Edmiston, CATIE’s executive director.
It was the domino effect. Once CATIE signed on to U = U, others quickly scrambled to do the same. Swamped, the small group of people living with HIV running the U = U campaign – more on them later – could hardly keep up. They were ecstatic. If people living with HIV had made a larger difference in the last twenty years, they said to each other, they couldn’t think of it.
Community members quickly took to social media to express their feelings. Peterborough, Ontario support worker Brittany Cameron talked to me about what many, including CATIE, were calling a game changer. “It’s true” she said. “It’s like an epiphany. And yes. I’ve had a few of those conversations. You actually have to let it sink in.”
The epiphany moment was a long time coming. The science behind it has moved slowly but relentlessly towards this point, starting in 1996 with the advent of antiretroviral therapy. The 2006 International AIDS conference saw BC’s Julio Montaner, and in a related article in the Lancet, first extol the prevention benefits of ART but treatment as prevention (TasP) largely failed to gain traction. The Swiss Statement in 2008 bolstered his case, but again the data was discredited. HPTN 052 was labelled as “the trial that changed everything”, but it didn’t. Nor did the beguiling results of PARTNER in 2014 and its subsequent update in 2016 in Durban change much sexual health messaging. Thus people living with HIV who had an undetectable viral load, or most of them, continued to believe they posed a risk to their negative partners.
If those people had been on ART since the beginning, like I had, that had been untrue for two decades.
An epiphany was long overdue. So some in the community of people living with HIV stepped in. And that’s where the story gets interesting.
One such person experiencing an early epiphany was living in New York City. Bruce Richman, a lawyer diagnosed in 2003, was told by his doctor in 2012 that as a person with a durably suppressed viral load he couldn’t transmit HIV; he told the story in POZ magazine here. That revelation prompted his own rage against the machine, a system still telling him and others about our supposed infectivity. A passionate man, Bruce decided to fight back, to take on the system – and the Prevention Access Campaign was born.
In July 2016 (has it been just that long?) he said in POZ “I’m working with a coalition of community partners, HIV activists and the leading researchers on this issue. We’re called the Prevention Access Campaign, and one of the goals is to help agencies catch up with and communicate the science.”
The campaign’s initial slogan was “Undetectable = Uninfectious”. (It subsequently changed to “Undetectable = Untransmittable” to reflect community preferences, and then to the ubiquitous “U = U” that also appeared as “#UequalsU”). Bruce worked social media aggressively. A consensus statement on the science quickly filled up with leading HIV organizations all over the world including top-drawer names like Terrence Higgins Trust and GMFA in the UK. Leading scientists like HPTN 052’s Dr. Myron Cohen, BC’s Dr. Julio Montaner, Dr. Jens Lundgren of the PARTNER study and Dr. Peitro Vernazza, author of the Swiss Statement, all signed on. It was powerful.
Yet organizations in Canada were staying away in droves. Something was odd. Something needed to be done.
I talked it over with John McCullagh, my publisher, and on August 10, 2016 PositiveLite.com publicly announced its support of the U = U campaign. I approached CPPN chair Christian Hui after that, and Bruce and I spoke to the CPPN board, following which CPPN signed on too. CPPN has been an avid supporter ever since. Shortly after that AIDS Committee of Ottawa (ACO) also signified their support.
Then began a struggle to get others to support U = U. And it was a struggle, always difficult and one which exposed systemic and attitudinal problems in Canada’s response to HIV which seemed almost insurmountable. Add a power imbalance where people living with HIV seldom hold the cards, where our very credibility was an issue and we knew that we had our work cut out.
We were convinced, though, we had a winning plan. We developed a small support group on Facebook messenger to discuss strategy, share our successes and lick our wounds daily. The group of five continues to this day. Bruce Richman, PositiveLite.com’s Rob Olver, RiseUptoHIV’s Kevin Maloney, long time Ottawa activist Denis Leblanc and myself became friends, colleagues and confidantes.
Here is what we did . . .
- we worked to get organizations and experts to come on side
- we were on social media daily, promoting U=U messages, U=U news, U=U everything
- we became “accuracy watchdogs”, encouraging agencies we connected with to correct misinformation
We enjoyed some successes but they were not enough. We were desperately missing endorsements from major players. Some organizations we approached said “no”, others went strangely silent, absenting themselves from the social media conversations that were raging here and in the States. Their absence prompted pointed criticism from activists like Josh Robbins. Meanwhile Megan DePutter and I mused on PositiveLite.com about what was going on.
It sometimes felt like we had pushed too hard and had become pariahs. It was dispiriting. Our small group’s daily – no, hourly - chats became emotional, the ultimate joyride of rebuttals and occasional victories. We debated endlessly why our message was not getting across. We became stressed out – or I did - and occasionally angry.
And then the tide in Canada tuned.
In December 2016, YouthCo, a small but progressive agency in British Columbia, announced on their Facebook page their endorsement of the U = U campaign. They had even produced their own campaign materials embracing the U = U message. Our hearts soared. We now had a Canadian AIDS Service Organization very publicly on side. I arranged to interview their energetic executive director, Sarah Chown, right away.
It was around this time that seasoned activists, some connected with AIDS Action Now! showed their support. Key among these was someone whose name in the community of people living with HIV is particularly well regarded, long-term survivor Darien Taylor, founder of Voices of Positive Womern. Importantly Darien had the ear of CATIE’s well thought of Executive Director, Laurie Edmiston. The two had a heartfelt conversation over dinner. I don’t know what was said but it began a week where everything changed.
Sensing that a change of messaging might be in the offing I wrote a long and impassioned email to Laurie presenting the case for U = U. More significantly, John McCullagh, CATIE board chair and publisher of PositiveLite.com, passionate about the need for a sex-positive, non-risk based approach to sexual health messaging, had a series of important conversations with Laurie. It was a tense week.
John, an experienced and trusted leader, became a key voice for all of us.
And then came THE announcement from CATIE supporting U = U. Laurie wrote a blog post to die for. Our team cried. It felt like a major victory for poz-driven activism, the likes of which we hadn't seen for ages. Social media went crazy.
Within hours I took to Facebook to acknowledge the role of so many who helped us win the day. That list will never be complete - so many more helped than this - but here is what I said:
“The news is out now and HIV will never be the same in Canada again with today's announcement from CATIE of their endorsement of U = U. This will change what service providers will say to us, how we and others view ourselves, change the public messaging we will see - and help reduce stigma. This is what some of us with HIV have been working on for months. Thanks are due in particular to CATIE's Laurie Edmistonon for not just listening but taking leadership. Also major thanks to my colleagues John McCullagh and Darien Taylor; all three of us were deeply involved in the final push but especially John. Thanks too to Christian Hui for his support and bringing CPPN on side. Thanks to Dane Griffiths at GMSH for not giving up. Thanks to Denis LeBlanc and Robert Olver for offering amazing strategic support. Thanks to Kevin Maloney for stellar support in the US and above all to Bruce Richman. Without him none of this would have happened.
This was truly a Herculean effort on the part of many others in the community of people living with HIV to make this happen against formidable odds and opposition from so many quarters. I'm so proud of us today it's not funny.”
I asked Bruce Richman what the progress we have made in Canada in embracing U=U teaches him. "It shows what happens when people living with HIV mobilize and speak truth to power" he said. "We are a diverse, powerful, and outspoken community. For far too long the narrative about us, about the danger from our bodies, was not controlled by us. We share the trauma from having to prove that we are not dangerous and from being treated like disease vectors. We share the outrage that this information was being ignored, and we also share the optimism and conviction along with the researchers that it is profoundly important knowledge for us and to benefit the field."
"CATIE’s leadership has cleared up any doubts in Canada" he said.. "I’m confident that truth will win in the U.S. as well.".
The work continues.