[Editor’s Note: This is a transcript of the video above, which was posted to YouTube on May 16, 2017.]
Nelson Vergel: Hello everybody. Nelson Vergel here with Program for Wellness Restoration, a non-profit that educates HIV positive patients and clinicians about side effect management, cure research and now the new messaging on Undetectable = Untransmittable. Today, we’re honored to have Bruce Richman. I saw him a few years ago on Facebook and he caught my attention right away. He was doing live streaming from the streets of New York and I said, “I want to meet this guy. He’s obviously unafraid to say something that we all need to know.” I invited him today. He’s been going around the world, so it’s been very hard to catch him. You’re going to see all the messaging he’s been basically saying around the world in different countries.
Bruce Richman is the founder and executive director of Prevention Access Campaign and Undetectable = Untransmittable, U= U, a global community of HIV advocates, researchers and organizations, uniting to clarify and disseminate a groundbreaking, but largely unknown fact that people living with HIV on effective treatment cannot transmit HIV. He received a masters in administration planning and social policy from Harvard Graduate School of Education and he is J.D. from Harvard Law School, so very smart, very well prepared. We are very honored Bruce to finally catch you from all the worldwide travels that you’re doing lately, so welcome.
Bruce Richman: Thank you Nelson. Thanks so much for inviting me to be here and to present on the campaign. This is the first time that I’ll be doing a taped webinar, so it’s great that we’ll have a record of the campaign and how it was founded and how it’s progressed. I appreciate that.
NV: Before we actually go on with your PowerPoint presentation that is just amazing, a lot of graphics. I think people are going to love it. Can you tell us just very briefly why did you start doing this work back when you did?
BR: Well, I was diagnosed with HIV in 2003 and I learned in 2012 from my doctor that I couldn’t transmit HIV because I was undetectable. I found out shortly after that that most people didn’t know. None of the [HIV] information websites were saying this. Doctors were selectively telling patients who they felt were responsible, meaning the marginalized groups were being left out of this life-changing information. I really approach this from a health equity and social justice perspective that everyone living with HIV deserves to know this information. Whether we have access to treatment or not, this information is extremely valuable to our lives and to the epidemic. That’s why I started this.
NV: When was this, when do you start the campaign?
BR: Well, I started collecting research in 2012. Then, about a year and a half ago, I left my previous career and started to do this full-time and started organizing and finding, building alliances and contacting the researchers. Really, it was about a year and a half ago of concerted full-time effort.
NV: If somebody wanted to help your cause or your mission, where can they go?
BR: To preventionaccess.org or uequalsu.org and we’re very small sort of core team that’s working on this, a very large group of volunteers worldwide, but in terms of the lot of the heavy lifting, we could definitely use a lot of help in kind of all areas in marketing, fundraising, communications, volunteer coordination, governance issues. There’s lots of fun ways to get involved and of course grassroots advocacy.
NV: Good, so why don’t we start now then?
BR: Sounds good. Oops, sorry, so we already know what undetectable is untransmittable means, but I’d like to start with these two slides because the slide on the left … Well, both of these are incredibly important. The slide on the left is from the International AIDS Society. You can’t get higher than that in the research world for associations of HIV researchers. They have endorsed the message U=U, undetectable = untransmittable. That was really a major, major, major, major win for people living with HIV and the field. Similarly, NAM Aidsmap is a gold standard source for HIV information, a global gold standard. I know when I was diagnosed, I went to Aidsmap. And they have also endorsed that when someone whose HIV is undetectable, they are not sexually infectious to their partners. This is exciting, kind of puts it to bed that this is real if you have these extremely credible sources behind it.
We’re at a defining moment. I think this is hard sometimes for people to comprehend because we’re not yet celebrating this, except in a few countries and in New York City. This is huge. This message is huge. In 1996, we learned that treatment would save our lives. That was a defining moment. Now, we know that treatment also means we cannot pass HIV on to others. It’s monumental. And that’s what we call undetectable = untransmittable.
Why is this important? Specifically, why it is this important? Well, first and foremost, it improves the lives of people living with HIV. That’s why I got involved with this. I didn’t actually realize the other reasons, except for how this dismantles HIV stigma. In terms of improving the lives of people living with HIV, we can have sex with our partners, we can be intimate with our partners without the fear and the shame of transmission of HIV now. We also can conceive children without alternative means of insemination. In terms of improving our lives, that’s huge and dramatic. Then in terms of the stigma, stigma is often called the biggest challenge to ending the epidemic. This tears apart HIV stigma at every level, on the clinical level, on the community level, on the personal level. Stigma affects everything. It affects how decisions are made, policy decisions are made, it affects HIV criminalization, it affects how we feel about ourselves and how others feel about us so.
That would be enough, like for me that’s enough, enough reason to sing this from the rooftops and dance in the streets. But there’s more.
This also is a way of incentivizing people to start treatment and stay on treatment. Someone like me, I didn’t go on treatment for seven years because my health hadn’t started to deteriorate. I only went on treatment when I had to. But had I known that treatment would prevent the spread of HIV to my partners, I would have gone on treatment earlier and stayed on treatment. We’ve heard that same kind of conversation from many different people. That will lead to improved health outcomes for us and also lead to fewer infections, fewer transmissions in the field. And the fewer transmissions that you have in the field, the closer we get to ending the epidemic.
Also, this is really important that we can’t forget to when we’re doing advocacy for treatment and diagnostics and care, we need to use this because the health and the preventative benefits are the best strategy we’ve ever had to advocate for access, to demand access. What I found in my discussions in public health and within HIV prevention is that policy makers and prevention specialists are looking at preventing HIV. They’re not really looking at improving our lives. When you say, “We need treatment and we need the support services and we need to address the social determinants of health that are preventing us from getting treatment,” that doesn’t work as much when you say, “Save our lives,” as it does when you say, “Save our lives and prevent new infections, we’ll get closer to ending the epidemic.”That’s a broad way of looking at it and we find that a lot of people are having trouble understanding that part of it.
Really when you look at, it’s mind-blowing. It’s the most effective strategy to not only to improve our lives, which should be enough, but also to end the epidemic. This is really important. We need to be focusing on this.
Why isn’t this getting out? We’ve been collecting data over the last 18 months and there are a lot of reasons. On the left here, there are all these studies. I’m not going to go into the science today unless you want to in the Q&As. I have another slide show for that. There are studies like Partner, which you might have heard … Something’s falling [inaudible 00:09:37], Partner which you might have heard about, HPTN 052. There’s a study in Australia, Opposites Attract. These are clinical trials that were showing there were no transmissions between people living with HIV who had undetectable viral loads and their negative partners.
Plus, there were statements, like the Canadian Consensus Statement. There was the European AIDS Treatment Group, in 2015, they issued a very clear statement saying that people living with HIV with undetectable viral loads are not infectious and that we needed to address this immediately, get this information out through public health education campaigns to fight stigma. Then, there is the Swiss Statement for 2008, which was widely discredited by the world. The Swiss Statement was the Holy Grail, widely discredited, but it was right. It was correct. When I found the Swiss Statement in 2012, it was the document that I held on to and I showed it to people, to say, “Look, I’m not infectious, I’m not infectious and my doctor says I’m not infectious.” We had very little else to go by.
Here are the reasons. There are many, many reasons that we could go into hours and hours of discussions of all the different aspects and the barriers to getting this information. Some of the things were sex negativity, people can’t stand the idea, thinking about gay men having sex, let alone sex without condoms or people who inject drugs or trans women or all the people that are associated with HIV, the thought of us as a community having sex is terrifying. Also, we saw a lot of sort of institutional racism and ego. And the paternalism, the concept in medicine that doctors and other health care workers have the license to control our bodies that they have a license to social engineer what we find out, what we don’t find out. Some of this was being blocked by health care workers. But then some people just didn’t know. There’s sort of a whole combination of things.
There’s also still going, what we’re still seeing now is the status quo, fear of change. People are very afraid to shake the 35 years of dogma and structure of fear of HIV and fear of people with HIV. It’s this fear of change that we’re also seeing, even within our own poz community, people are pushing back on it.
But the main reason is because science doesn’t have a publicist. You have all this science on, see on the left side, all these different studies and people were interpreting them in different ways. You go to one magazine, you go to one journal and they’re saying, “Well, there’s still a risk,” and they pull one quote from an editorial of Partner or they would pull a piece of HPTN or they criticized it. There was nothing that was looking at the whole body of evidence and not just the clinical evidence, but also the non-observation of any event occurring since the beginning of ART. We needed to have a bold, big statement. [inaudible 00:13:05] interview [inaudible 00:13:05], there were interviews with the researchers on these obscure government websites of the researchers saying, even as far back as 2011, saying that people who are undetectable are not contagious. That’s a quote from principal investigator of HPTN 052. He said that his patients were coming to him to go on treatment in order to no longer be infectious to their partners. That was from 2011. We needed someone to organize this and act as the publicist.
Some people were finding out though, like me. Why did I find out in 2012 and why did some of my peers also find out? Well, again this is what’s called the responsible consumer versus the unsophisticated consumer. I don’t like that word consumer, but I’m using public health language. The responsible consumers were folks like me, who had access to treatment and stable care, stable employment and housing and food security. But those unsophisticated consumers, this isn’t going to do them any good, so let’s just not tell them. That was the perspective and that’s the perspective we’ve heard even up until a week ago. I heard that this is not appropriate for people who are struggling with basic needs. There’s a lack of big-picture thinking and a lack of actually even asking those people if they would like to know this. We found that these folks are just deciding for them what people of color and marginalized groups need to know. This [message] actually has offered people hope. When we were dancing in the streets with the Housing Works Community, and many of them are from those backgrounds where they are struggling with social determinants of health, people were celebrating with joy.
To withhold this information from anyone is unethical. As of about a year and a half ago, a recent study showed less than 10% of people living with HIV know this. The rest overestimate our own infectiousness. We think that we’re at risk, but we’re not. We needed to change that.
Author: Nelson Vergel