Bob Leahy: Bruce, you have been in this right from the beginning. What are your thoughts on the highlights of the last two years, things that have felt the best?
Bruce Richman: The highlight of the work and what feels best is this community. I love working with our partners from various parts of the world. When I come back to Canada it feels like home. I really need that. The AIDS organizations in Canada and the activists we work with are very proactive and communicative and engage in dialogue with each other. I have really strong, warm feelings about our partnerships in Canada, especially as it’s where the campaign grew up, took off and went international, thanks to CATIE and PositiveLite.com and CPPN and many other groups. Now we’re connected to groups from all over the world and that kind of solidarity is so moving, especially with those struggling like in Eastern Europe and from Central Asian countries – and speaking with them directly about how this information can be helpful to them. Being with my colleagues, my friends, like you both, is so important, and it’s so hopeful to see the international reach of this campaign. All these people have been standing up before others were saying it (that U=U). So this courage that we’re seeing, the solidarity is a really important. Also working with the U.S. Federal Health Department earlier this year was inspiring – and huge. I consider many of those folks part of the U=U community, and we wouldn’t be here without them.
Bob: I would agree with you. We have really built a community around U=U; we have made connections. You only have to look at the U=U Facebook page, with 2,500 or so people, many living with HIV, strangers brought together for a common cause and that feels really good. For me that feels as good as the fact that we have managed to get the science across to so many. But Maria, let me ask you too, what’s been the best thing about the campaign for you?
Maria Mejia: For me personally, as Bruce knows, I came in a little bit late. It took me approximately a year - I wanted to analyze everything, I’m that type of person to not jump into something until I’ve analyzed it well. I think this is the most important anti-stigma campaign that exists globally. I want to thank Canada and Bob for embracing Bruce and being early pioneers, also all the other countries that joined. In the States I work on the Well Project with Krista Martel; they immediately embraced it and we saw Housing Works join in and we saw so many activists who were just relentless in getting this work across. And in my personal life, it has set me free, But this is why I can’t understand why a person living with HIV, even long term survivors, would have resistance to the campaign. I don’t understand why they would reject it.
Bob: Well let me ask you about that. My sense is that in the early days we spent a lot of time convincing people about the science. We had to talk about the studies. We had to talk about what negligible really meant. We had to talk about blips in viral load, etc. I was sensing we had got past that, that we had convinced people on the science. But it’s clear from social media that those conversations are ongoing.
Bruce: I see those conversations and get tagged in them a lot still but I’m over them, I just refer them to our website. There’s more than enough backup there in 15 languages. But it’s often not really an argument about the science, it’s about fear, stigma, trauma. What we are seeing now is a different kind of resistance. People are (mostly) OK with the science but now we are starting to see people minimize the campaign itself and the message. Part of this is territorial and part of it is resistance to change and so it’s hard for folks to articulate why they have a problem now. It’s like they just want the campaign to go away so they can get back to the way it was. But we’re not going away, we’re getting stronger.
Bob: That’s interesting; when I talked to (Swiss Statement author) Pietro Vernazza last week he said something which goes right back to his experience on this topic in 2008. He said he was challenged a lot then and asked many questions, but he had never been presented with an argument he couldn’t refute. It wasn’t called U=U at the time but he was always confident he had answered every challenge. Do you feel the same way? I know I do.
Bruce: Yes, I feel comfortable addressing any argument. I’ve had to deal with rejection of the message for almost two years now. And personally I’ve been arguing about it long before we started the campaign.
Bob: I can only speak for myself but it sometimes kind of wears you down - and I want to talk about that in a minute. But Maria you have been on the front lines of social media discussion. You have to admit, it can be tough work; it can be draining, it can make you angry, right?
Bob Leahy with Bruce Richman and CATIE’s John McCullagh
Maria: Yes, my work on social media is sometimes hard. I am a strong woman, but it sometimes makes me cry, sometimes makes me angry. It affects me very deeply. It’s like cannibalism. If we continue to do that to one another were are going to lose people to the fight, but we have to be united. I’m going to give you an example of how U=U has affected my life. I’m separated as you know, so I got serious about being on a dating app and I tell people about The Well Project and U=U. If you tell women you are living with HIV either they are educated or they need to be. I post a link to the Prevention Access Campaign website and that works, and immediately people feel like there is no threat to them. But I can tell you this: I have never had one rejection. A lot of people have disclosed to me too and say “I didn’t know being undetectable equals untransmittable. I’m going to start medication.” So I see this as something that is going to promote adherence and promote disclosure. Even people who don’t have access to treatment still want accurate information. Who are we to deny them the facts?
Bob: Let me jump in there Maria because one of the things you said probably resonates with all three of us, and that’s about setting people free. All of us who do this work have seen some very powerful real life examples of that happening. For me, the transformation of people, in front of your eyes, from someone who feels trapped and guilt-ridden from HIV to someone who realizes there is a better life for them is pretty remarkable. It’s made me cry, it’s been so powerful sometimes. But realistically we see research about who knows that undetectable = untransmittable, it’s clear that even all doctors aren’t on the same page yet, nor are many HIV-negative people. There are lots of people we still have to reach. My question is, is it our job to do that? We can’t be at this game for ever. Isn’t there a point at which we hand it over to people who have the money and resources to do the job?
Bruce: Absolutely. We are necessary to keep pushing to get this on the agenda. We are necessary to be there to push government agencies, AIDS organization, providers, policymakers, all the information providers as well as the conferences that set the tone for the field. There are so many stakeholders from vastly different backgrounds that need to know U=U. That’s why our community partners are so important to get the information out to their communities in ways that work for them. So, we are doing this together. We need to keep moving forward, moving people through this massive shift. It’s up to us. But ultimately, we will be working our way out of a job because the information will be integrated into clinical care, communications and the policy work of our partners throughout the world. We are not there yet. But we are on our way.
Bob: This is just phase one. But I want to raise an issue that also came out of the Vernazza interview. We are hearing the same arguments against U=U – it encourages condomless sex, it will result in a rise in STI’s - that we heard in 2008. It feels like history repeating itself.
Bruce: Yes, there’s a widespread tendency in this field to control people living with HIV rather than to trust people living with HIV - the idea that it’s OK to withhold information from us about our bodies, in order to over-protect HIV-negative people from us. But people are challenging their doctors now, like “why didn’t you tell us (that U=U)?’ It’s a movement now where people are educating their doctors.
Maria: This is something that angers me to the core. Number one: there is a big difference between 2008 and now - and that is that UNAIDS and the CDC and other big names are supporting our message. There is no reason not to be supporting it. Number two: I have been extremely adherent for nineteen years. I am very careful about my health. I was with my partner and my other partner for nineteen years. Why wasn’t I told the truth, rather than me being stressed out, worried and concerned about the potential risk to my partner? There was no risk!
Bob: I know what you mean. It’s worth noting that CATIE came out with a World AIDS Day message this past week with an article with a headline “Patients can handle the Truth” which explores the very thing we are talking about – it was about paternalism and I was encouraged that CATIE named it. But I want to move on and talk, if we can, about funding, because funding for the campaign, which clearly already had a huge impact and the potential to do even more, has been a constant struggle. (POZ Magazine calls it “perhaps the most discussed and rapidly shared message to hit the HIV arena in years”.) Tell me why, Bruce you have had such a hard time securing the kind of funding other organizations get that have much less impact?
Maria Mejia with Bruce Richman and fellow activists Arin Mac, Angel Luis Hernández and Raul Robles
Bruce: (laughs). Great question. I think any time there is radical challenge to the status quo people are going to push back. U=U is a revolution in what it means to live with HIV, and a threat to parts of the power structure in the United States and internationally that thrives off the status quo. We were a new entity with a lot of new people coming in and we stirred things up. This was not welcomed by some, especially by people who have held position of power in the HIV positive community. I have many outrageous examples but the most damaging in terms of funding was when someone started a rumor that donors could be sued if they support us, and another person scared away a major donor by telling him this campaign was about sex without condoms for the small group of white cis-gender gay men who have access to treatment. We were taking two steps forward and three back all through the first year of the campaign because folks did not want this campaign to succeed and were not recognizing the importance of the message for all of us. Eventually I just stepped back and said that we can’t waste our time on (funding applications) any more. Stigma is killing people. We were hearing that stigma is the greatest challenge to ending the epidemic and yet these same people were exaggerating risk and creating stigma. I essentially stopped fundraising and put my own funds into it and then I had to borrow money to pay my rent. It really hurt. We just stepped out again to fundraise this summer. But I think there is this misperception that our community has accomplished so much in a short period of time that we must be well funded. But we may be turning a corner with some new partners. I think I’m still kind of traumatized by how the campaign was attacked, so I’m not counting on anything to come through. Long story short, the funding situation has been disappointing.
Bob: Yes, I understand. But let’s talk about our coping mechanisms. Clearly Bruce this has been challenging for you, financially and otherwise. And also to you, Maria, in that you have had to fend off social media attacks. How do you maintain personal wellness? What do you do as a person living with HIV to handle the stressors involved in working on a campaign like this?
Maria: Well, I definitely feel like the world is on my shoulders sometimes. It’s very important to cry; even though I'm a strong woman, I feel sometimes that crying cleanses your soul. Another thing that helps me immensely is that I work out. I eat healthy. I try to be a good person. Self-care is very important but so is finding that common ground with others.
Bob: I think you are good at that. You try to calm people down when they get angry. Bruce, what about you? What is your technique for dealing with stressful situations?
Bruce: I have to agree with Maria that crying helps.
Bob: We can all identify with that.
Bruce: I take a deep breath and visualize four or five people I think about – I remember their names and stories, Bob - you were there for some of them - when people stood up and shared in our workshops how they had just heard about U=U, and how it changed their lives. I borrow strength to keep going because I know how this changed their lives, and i know there are millions of people who still need to know, and who lives will forever be changed.
Maria: I want to thank you Bruce for setting me free – I’ve been living with a burden for so long and now I’m not . . .
Bob: You are not crying again are you, Bruce?
Bob: We have talked about how much we have cried on this campaign, but often it’s tears of joy, right? I remember at dinner in Paris one night when I thought about what we had just achieved at IAS 2017 after that demonstration we staged. It was too much emotion to handle, I just broke down sobbing, but that’s not always a bad thing. A closing remark Bruce?
Bruce: I feel we’ve formed a powerful and inspiring community. I feel so protective and so appreciative of the people who are stepping up and making it happen all over the world. We keep seeing more and more courageous compassionate activism and advocacy to share this truth. It’s wonderful. We all need to keep saying it in ways that make sense for our communities.