What people said?
Some said that history was made at IAS2017 in Paris last week. I’m too close to the campaign to be objective – I lead the Canadian arm of the Prevention Access Campaign's work – but certainly it was a big week. It was also one where the U=U campaign repeatedly made the news. Important things were said by important people, including by us and about us – people living with HIV.
Here are some of the things people said about U=U last week
“Scientists never like to use the word “Never” of a possible risk. But I think in this case we can say that the risk of transmission from an HIV-positive person who takes treatment and has an undetectable viral load may be so low as to be unmeasurable, and that’s equivalent to saying they are uninfectious. It’s an unusual situation when the overwhelming evidence base in science allows us to be confident that what we are saying is fact.” Dr Anthony Fauci, director of the US National Institute for Allergies and Infectious Diseases.
UNAIDS “fully and unequivocally supports the message " Dr Luiz Loures, Deputy Executive Director of UNAIDS.
"In addition to the positive impact upon the health of people living with HIV, there is increasing consensus among scientists that people with undetectable HIV in their blood do not transmit HIV sexually. This knowledge can be empowering for people living with HIV. The awareness that they are no longer transmitting HIV sexually can provide people living with HIV with a stronger sense of being agents of prevention in their approach to new or existing relationships” UNAIDS update - Public health and HIV viral load suppression
Ce matin @Paris soutenait la campagne #UequalsU. Une personne séropositive sous traitement ne transmet plus le virus! Association AIDES/twitter
“The evidence from Opposites Attract adds to the evidence from the PARTNER study that HIV-positive people on effective HIV treatment that fully suppresses their virus cannot transmit their infection through sex. Taken together, the two studies have not found a single case of HIV transmission in nearly 40,000 acts of condomless anal sex between gay men. This adds further strength to the “U=U” (Undetectable equals Untransmittable) tagline of the Prevention Access Campaign, whose consensus statement has been signed by NAM and also by the International AIDS Society (IAS), organizers of this week’s Conference on HIV Science in Paris.” Gus Cairns, NAM/aidsmap
"HIV experts emphasized this aspect of prevention, highlighting the "Undetectable equals Untransmissible" campaign, during a press conference at the international meeting. The campaign works to encourage people worldwide to stay on treatment by ensuring they understand that doing so could mean they cannot infect others. This message is not aligned with the status quo in terms of the care people infected with HIV receive today, believes Bruce Richman, founder and executive director of Prevention Access Campaign and the "Undetectable = Untransmittable" initiative. "This is transmission-stopping information," he said." CNN.com
“Excellent press conference today talking about #UequalsU and providing people living with HIV with hope and eliminating HIV stigma! Dazon Dixon Diallo, Bruce Richman, Charles King knocked it out of the park, and Dr. Anthony Fauci, Ambassador Birx, and Dr. Luiz Loures also provided resounding confirmation that the science of having an undetectable viral load means that you cannot sexually transmit HIV (untransmittable) is sound and evidence-based” Krista Heitzman Martel, The Well Project
"The study (Opposites Attracts)’s findings complement findings from similar studies with heterosexual people, bolster momentum generated by the Undetectable = Untransmittable (U=U) campaign, and demonstrate that HIV treatment prevents HIV transmission even in the presence of sexually transmitted infections." Beta/San Francisco AIDS Foundation
"#UequalsU supporters bring #celebration to #IAS2017 with the serious msg of undetectable=untransmittable" #HIV ViiV Healhtcare/twitter
“Just happened at the International AIDS Society Conference: dancing in the aisles, chanting "U=U, Celebrate Sex!" And "U=U, Treatment for All!" And demanding that physicians talk to their clients about the real science of HIV and also, how undetectable viral loads can allow people to enjoy sex and have families.” Heather Boerner, science writer/twitter
“We just did something so tremendous it is hard to fathom!!” Bruce Richman Executive Director, Prevention Access Campaign
Off to a shaky start.
Pre-opening day. Those close to the U=U team were worried; a glance at the IAS official program revealed very little, it seemed, directly related to U=U. How could the organizers ignore such breakthrough news that a person living with HIV who is virally suppressed can’t transmit the virus sexually? True, a press conference organized not by IAS but by the U=U team featuring UNAIDS head honcho Michel Sidibe and a blue label panel was scheduled for Day One. There had been much speculation that he would announce UNAIDS’ endorsement of U=U. But just days before, Sidibe cancelled and there was consternation. The question loomed: would his deputy whom UNAIDS fielded in his place say the words the team wanted to hear. The mood was tense as the first day of the conference loomed.
Things took a turn for the better quickly though. The Sunday night opening ceremony saw at least one favourable mention of U=U. The opening plenary session the next day included several more.
The first major win
And then that same morning came cause for real celebration. The French group AIDES and Sidaction had arranged for the Mayor of Paris to meet with them at the France booth in the exhibition hall. I got there as cameras were flashing as the Mayor held a U=U t-shirt in front of her, smiling. Brice Richman stood next to her, beaming. Paris had just signed on to U=U. Wow. Wow. Wow. Our first big moment.
Next stop, an IAS-arranged interview with Bruce in conversation with Pietro Vernazza, the brilliant mind behind the originally much maligned Swiss Statement. He is now a hero of the movement. I got to know him over the course of the conference as a quiet, intensely intelligent and likable man who is still struggling to understand why the world took almost ten years to validate the science he revealed in The Swiss Statement. I watched and photographed as the two men spoke. The interview was a good one.
But the press conference loomed over the rest of that day. Would UNAIDS say what we wanted them to say? There were furious behind-the-scenes meetings, but as attendees filed into the press room at 4pm that day there still remained uncertainty.
The press conference
We had allies on the panel that assembled on the dais, none more so than the remarkable Charles King as moderator, head of New York City’s Housing Works side by side with Dazon Dixon Diallo, a major figure in HIV and racial justice in the U.S. King had already impressed as a brilliant activist, a mover and shaker of the highest caliber – and an all round nice guy. He opened the proceedings expertly, saying all the right things. Then spoke U.S. Global AIDS Ambassador Deborah Birx. Nice lady, arguably the most powerful woman in global AIDS policy. Supportive. Then Dr. Anthony Fauci, director of the US National Institute for Allergies and Infectious Diseases, an industry heavyweight. Very supportive. “I think in this case we can say that the risk of transmission from an HIV-positive person who takes treatment and has an undetectable viral load may be so low as to be unmeasurable, and that’s equivalent to saying they are uninfectious” he later said.
Then we all take a deep breath and it’s the turn of Dr Luiz Loures, Deputy Executive Director of UNAIDS, filling in for Sidibe. He looks serious, unsmiling.
He takes his allotted three minutes to say encouraging words, like he sees a place for U=U in UNAIDS programming – or something. It’s OK BUT he didn’t say “UNAIDS endorses U=U” or anything all that close. This is not good. We feel deflated.
Bruce Richman is up next and he looks tense. He launches into his prepared speech with polished conviction though. “‘When I was diagnosed with HIV in 2003” he says ”I felt like I was a walking infection. I was terrified about passing HIV on to someone that I love. I didn’t start treatment because taking a pill every day would remind me that I was infectious, every day. After I started treatment in 2012, when my health started to deteriorate, I learned from my doctor that because I was undetectable, I couldn’t transmit HIV. I couldn’t pass it on. I was elated.”
He continues. “But very soon I became outraged. Because every HIV treatment site, every media outlet, every ASO, every federal health department, every state health department, everywhere, was saying that I was still a risk. And millions of people with HIV were still a risk. It was clear, for many reasons, that the breakthrough science wasn’t, and still isn’t, breaking through to the people it was intended to benefit. It wasn’t accepted or understood outside of well-informed medical and public health communities.” He talks about how the campaign was formed, how it needs the world’s support. It’s a powerful three-minute speech. But the question hangs in the air. Was the UNAIDS statement strong enough? Probably not.
Now it’s question period. I’m not shy so I spring to the microphone. ”I’d like to address this to the UN representative”. In the excitement I’d forgotten his name. “You have said you see a place for U=U in programming but could you clarify where the UN stands in terms of support? Where do you stand on the spectrum of accepting the message that U=-U?”
He looks at me. “We fully and unequivocally support the message” he said. It was the quote, the kind of affirmation, the nugget we were hoping for, one we had promised the community they would hear.
Next Vernazza in affable mood takes the mike to ask his “what took the world so long” question. He makes a point that makes me sit up. “We should be done arguing that people with HIV who are undetectable can’t transmit. It’s the other side’s turn to prove otherwise. Prove to us that people who are virally suppressed CAN transmit” he argues. It’s a powerful idea. I take note of it for future use.
(That same day the online resource UNAIDS explainer amended their information thus: “In addition to the positive impact upon the health of people living with HIV, there is increasing consensus among scientists that people with undetectable HIV in their blood do not transmit HIV sexually.”) This is good.
We had been streaming the press conference on Facebook Live. It was to be a big deal, to let the sizeable U=U global community share the moment. It turned out the feed wasn’t very good. People were texting in that it was unintelligible. We should have checked the strength of our wifi connection and we didn’t. But we knew what had happened was powerful, a key piece of the U=U dialogue had fallen into place. (In the week that followed 35 more new community partners came forward to sign up.)
Later that same day, U=U supporters were invited to the conference centre’s Positive Lounge for a celebratory gathering. I took photos while people congratulated each other. Charles took charge – he’s a born organizer - and helped float the idea of a novel demo, a celebratory interruption of a plenary session. We would storm the conference main stage Wednesday morning. There would be music and dancing and speeches, not angry but fun. We would hold a dance party on stage. People liked the idea.
We were all a bit fragile. At dinner that night with a group of my U=U comrades, I could not keep the emotion of the day hidden any longer. It came bubbling up; I cried openly over my French onion soup.
More good news
Next day, it was already on the cards that more good news was on the way. The results of the Opposites Attract study were to be announced. At that day’s press conference I heard what I hoped we would hear. No transmissions in 17,000 condomless sex acts, in a multi-national study group consisting entirely of homosexual serodiscordant couples,. In other words, another win for U-=U. Even the panel said that. Brilliant! We were clearly on a roll.
Wednesday was the day of our planned demo. Charles King hadn’t let us down; we were organized. We had the big U=U banner, we had our (reasonably clean) U=U t-shirts on, we had the speakers lined up and a boom box. “Celebration” by Kool and the Gang was to be our theme music piped in to the conference sound system by holding up the boom box to any available mike.
I should explain that demos now are usually planned in advance, working with one of the conference’s community liaisons who ensure safety and handle logistics. Canadian Ron Rosenes was our liaison and smoothed the way for us to enter the auditorium mid-session via the rear back doors and stream down the aisle. And that’s what happened. At precisely the planned time - 10.15am local time - we were given the word “go” and in we swooped – a long conga line of black and white U=U shirts. And we shouted. We shouted “U=U, celebrate sex”. Then “U=U science not stigma”, then” U=U Treatment for all”. I forget what else.
It seemed like forever to get there but eventually we reached the stage; press photos show us jubilant. The group gathered behind the banner while I took photos and video. Then Jeff Berry cranked up the music and “Celebrate” filled the auditorium. Arms raised, we danced. Christian Hui, my Canadian colleague was beaming; it was a magic moment.
The three speeches which followed, all personal testimonies to the power of U-U, were powerful and electric. The audience applauded each warmly, then it was time to leave the stage; our five minutes were up. Jeff cranked up the music. We danced back though the auditorium as the audience turned their heads to us to applaud as we left.
Next up a giddy, chanting parade through the corridors of the conference centre and the busy exhibition area. We were having fun. People stopped to take photos.
We were all on a high, tired but adrenalin fueled.
Later that day I rubbed shoulders with industry heavyweights Myron Cohen, lead investigator of the landmark HPTN052 study and Dr. Carl Dieffenbach, Director of the Division of AIDS at NIH, famous for saying this: "If you are durably virologically suppressed you will not transmit to your partner... I'll say this again, for somebody who is in a discordant couple, if the person [with HIV] is virologically suppressed, 'durably' --means there is no virus in your system, hasn't been for several months -- your chance of acquiring HIV from that person is ZERO, let's be clear about that: ZERO." Nice guys. Both gave an affable interview with Bruce I filmed, rather clumsily as it turned out, for Facebook Live
Facebook Live had fast become an important medium we used to share our experiences. Poke around on my Facebook and you will find me interviewing Bruce on day one, then progress reports from Bruce, Charles and me on days two and three. They serve as reminders of how giddy with the excitement, how tired and sweaty we were, how overjoyed with what had happened in those three emotional, action-packed days in Paris.
Above all they were three days where the community of people living with HIV came through. Three days where we were listened to. Three days that made a difference, that some called historic. Three days that none of us will ever forget.
I was privileged in the extreme to be part of all this. I wish you could all have been there.