[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.
NV: Wow, really?
BR: Yeah that was a UCLA study, the cite is on the bottom.
BR: It's really sad and it's something that we found during our trainings and our webinars around the US and Canada that people don't know, they're just finding out. It's so rewarding to share this with people, it's rewarding.
NV: What I see is the only prevention message we're getting out there is [inaudible 00:15:52], the use of TRUVADA once a day to prevent HIV. Obviously, there's a lot of funding from the pharmaceutical sponsor for those programs. This is not U=U for me. It's almost like an orphan messaging that is probably the most important messaging and yet, we have no funding to get the word out like the PrEP information, the PrEP messages. We need to change that and hopefully this webinar today will help. I'm very surprised 10% of people with HIV and there's 1.4 million of us, here in the States.
BR: Yeah, thank you for saying that. I like that concept that it's like the orphan message and it is. I mean we're the only organization that's working on changing the narrative and focusing and pushing that except for Housing Works as our main partner now and doing a phenomenal job in New York State. The funding and the air time and the focus on PrEP is interesting. I mean it's an important tool, but according to the CDC if in five years, I believe, it's 80% of people living with HIV were virally suppressed, we would save 168,000 new infections and if those most at risk were on PrEP, we would save about 17,000 new infections. [inaudible 00:17:20] got those exact percentage right, but the bang for your buck is tremendously higher with getting people tested and on treatment.
NV: They also call this treatment as prevention, right? In some online apps that people frequent for dating.
BR: That was the very first description of this method, how treatment can prevent HIV. That was a phrase that was developed in 2006 by Julio Montaner in Canada. I think the phrase undetectable is untransmittable is more explicit, where treatment as prevention [inaudible 00:18:06] well how much does it prevent? [inaudible 00:18:09]. To me, it implies that we are prevention tools in a way, where U=U is more empowering. At least I feel that way and from the ...
NV: I think so too. It's more catchy, it will spread faster [inaudible 00:18:26].
BR: Yeah, I think so and I hope so and the community seems to really respond to it well.
NV: [inaudible 00:18:31].
BR: What do we do? How are you going to get to U=U? The field, even after the final results [of the major studies] this summer, even up until January, this field was pushing back hard on saying this message. We couldn't get any funding in the summer. We had groups fighting us, undermining the campaign, a lot of nasty stuff going on.
So, what did we do? We had to get a global consensus. We had to get a document in writing, something that was in writing that confirmed the clinical and empirical evidence. Then, our goal was to disseminate to everyone and work through the organizations that serve those communities. We don't create messaging for each socio-cultural group and sexual orientation and race and class and gender identity and immigration status. We don't create a campaign for each [community]. This is the core message that goes to those organizations. We market mostly to advocates. We do market to people living with HIV, but it's really those networks to people with HIV, like with Positive Women's Network. The women from Positive Women's Network are creating the messaging that works for their communities. They've really taking it on. Or we're working with groups in Macedonia or in Turkey or in Italy. They've created the campaigns that work for their community. We're a hub for the message. That's the dissemination route.
Anyway, just to get back to that, now how did we create the consensus statement? We went to the researchers from the main studies, the principal investigators from HPTN 052, Partner Study and also Opposites Attract. We also went to the author of the Swiss Statement, who I really consider to be the godfather of this field. The four of them were surprised that their message wasn't getting out to the public. They thought that people knew, people living with HIV knew that if you go on treatment, you stay on treatment, you won't transmit HIV. They thought clinicians knew this and we're sharing it with their patients. They were enthusiastic about joining the Consensus Statement. We negotiated that Consensus Statement from February through July of 2016. Here it is.
The main parts of the Consensus Statement are that person living with HIV has to be on treatment. This doesn't apply to long-term nonprogressors or elite controllers. They need to have an undetectable viral load. The language used in the Consensus Statement was negligible risk, and it has to be sexual transmission. It's not through breast feeding or injection drug use. And that excellent adherence is required. Those are the main components of it.
What does negligible mean? A lot of people have had trouble with negligible. I feel like we made a bit of a mistake in focusing on negligible, at least I did for a while. I think we're turning the corner on negligible. Initially, the researchers agreed on uninfectious, on the word uninfectious instead of negligible, but for various reasons we went back to negligible. Negligible is the same [risk category] as spitting, biting, throwing bodily fluids and sharing sex toys. You would never say to someone, "There's an extremely low risk that if you spit on that person, you will get HIV." You do not say that. You can't get HIV from spitting. We know that and negligible in science means it's so low, it's not worth taking into consideration. It's insignificant, but what we've had is some folks saying, "Well, negligible is still a risk."
I'll explain how we dealt with that a little bit later. Okay so we've got these scientists, but then we needed early adopters. We needed prominent people in the United States to put their name on this and confirm that this is true because scientists, it's great for us to have scientists, but they're talking about their studies, so someone without any kind of vested interest. We went to heads of the HIV clinics and medical associations. We went to prominent HIV doctors and everyone agreed with the science. No one agreed the science wasn't a problem. They were worried about being the first. They also felt that it was really important to control who gets this information. They were worried about condom-less sex and STIs, so all those sort of things. There was no problem with the science.
Then, we went to Demetre Daskalakis in New York City, who heads up everything related to AIDS. I think he's now expanded to, actually just was promoted in his position in New York City. When we sat down with him, said, "Do you believe this is true, this is a negligible risk?" He said, "Yes, you've got to tell people [the truth]." Within two weeks Dr. Daskalakis and New York City Department of Health and Mental Hygiene signed on to the campaign.
Then, once New York City signed on, this is sort of how the progression and I'll move through this pretty quickly. New York City signed on, we were also working with an organization closely in London, Terrence Higgins Trust. They had developed social marketing materials and made a statement around this time. It wasn't as influential in the United States as New York City. Terrence Higgins Trust is a world leader on this issue and a wonderful partner. At that time we found a video from NIH of Dr. Carl Dieffenbach, who's head of the division of AIDS at NIAID, saying that someone who is undetectable is not infectious. We used that video. This is lovely Anne Rancourt, who is the chief of communications next to him. We used that video as well as the endorsement of New York City to start going to other leaders in the United States.
NASTAD was a huge, huge win for the campaign when they signed on just after New York City. National Alliance of State and Territorial AIDS Directors. Those are all the state, public health departments in the country, this is their association. Then when Housing Works came on that was the first AIDS service organization in the country to sign on and endorse the campaign and integrate into their clinical and communications work. Then San Francisco came on, so this is very exciting. This was around in January of 2017. From July through January, it was really tough.
Then, I think things really took a turn when CATIE came on, which is globally recognized HIV research association and Canada's number one source for HIV research information. CATIE came on, explicitly endorsing it. Then when IAS came on and NAM and Aidsmap, things took off on an international scale. All of a sudden, there's explosion in the United States with groups like you'll see Getting to Zero San Francisco, Latino Commission on AIDS. Association of Nurses in AIDS care was ahead of the curve on this as well. I mean, all these groups, I could go through all of them. These are the early adopters. I feel like these are the groups, like GHMC that were onboard with this. They're still ahead of the curve. Positive Women's Network was with us from the very beginning. Then, you see it went global, Desmond Tutu HIV Foundation, there are programs in Scotland and Ireland and Nigeria and South Africa. ICASO was also a major turning point for us. Their statement was one of the best that we've seen about how this is important on a global scale. AIDES in France. Each of these partners is so wonderful, [inaudible 00:26:48] someday we have to write-up what all of them are doing because they're all doing such phenomenal work. I mean, Red Ribbon, I mean all of these different groups.
NV: It is amazing.
NV: It amazes me how busy an organization of very few people, I guess you're the main one has been able to spread this around the world, look at all these logos and it blows my mind. I've been the HIV research advocacy and activism field for 30 years and I've never seen anything like this and I'm very happy because I'm an HIV positive man, 34 years of infection and I've had enough of stigma. I've seen the past few years, the stigma is decreasing fast, so wow. Anyways, keep going. I'm just very happy to see you spreading the message everywhere.
BR: Thanks for saying that. Well, it's the truth that I think people just needed encouragement. These are groups that are very honest about it with us. They said, "We've known this for a while, we just didn't prioritize it." Groups have apologized and we would sort of say, "No need to apologize now, you're doing it, you're spreading the message". But soon people will have to apologize, like the folks that aren't joining fairly soon, especially in the developed world, especially in the United States. We have more problems here than in other countries. But it's amazing, people just needed encouragement. They needed a bit of a nudge and they needed to see the early adopters and the leaders come out and say this because it's uncomfortable, it's very uncomfortable and it's a scary thing to say.
It's very exciting. Now, we're at 250 organizations and they grow every day, 24 countries. The Consensus Statement has been translated in full or part into 11 languages.
This is just a bit of the science, but I don't know ... Let's go through this really quickly. Just in terms of the narrative, back in 2008, the Swiss Statement was saying, "Not sexually infectious, cannot transmit." So, they were right in 2008 and, now we're in 2017 and now everybody is saying it. It's happening. Not everybody, but now the organizations that matter are saying it and along the way, you see these little clues that we found, "very much not contagious" in 2011. Actually Sally Davies, the chief medical officer of England, in 2013 said that people on effective treatment are "not infectious". I found that and I held on to that, again, like it was another clue. All of the studies showed zero transmissions.
NV: Before we move on, let's go back there. You've probably have this in [inaudible 00:29:51] PowerPoint presentation but the total number of people, positive and negative, HIV positive and that have been followed up to generate this data or the certainty of viral load under 50 [inaudible 00:30:09] for at least, I'm sure over a year, two years that person cannot infect others. How many people in total from [inaudible 00:30:18]?
BR: I think there's about 1000 couples in Partner. There were 1800 couples in HPTN 052. I think the thing to look at is also the sexual acts too. There are 58,000 condom-less sex acts in Partner study and 6,000 condom-less sex acts in Opposites Attract study. That's a lot of condom-less sex.
NV: Explain to people couples of what, discordant couples, one negative and one positive?
BR: Right exactly and the negative partner was not on PrEP and the positive partner was undetectable. And there were no transmissions between.
NV: These are straight women, men, gay men, everybody?
BR: Yeah, there was mix of men who have sex with men and heterosexual couples. Partner is continuing to get even more research on this and to confirm and they expect they'll confirm the same kind of data.
The messaging, this is fun. I've actually, as you know, I cut this down a bit because there're so many great examples of this messaging around the world. This is important because this was the first graphic that we were able to use pretty much that we could find anywhere. It was created by NIH, by Carl Dieffenbach and Anne Rancourt at NIH. It wasn't the official statement of NIH at that time, but it was coming from an official at NIH. This was very valuable to us to get this message out that there was zero risk when someone was virally suppressed. This was from about September that we were able to do this. Terrence Higgins Trust, as I was telling you is a global leader in the message, this was just recently in their subways or in the tube ... what's it called in England. If someone's doing well on HIV medication, they can't pass it on. They also had a great campaign in September.
Housing Works is a leader in the United States and also had an impact internationally as well. Housing Works is the first ASO to come on board and they're leading the effort to bring U=U to this entire state. I think their messaging is the best that I've seen. Their website liveundetectable.org is the best that I've seen in terms of comprehensive description of what it means to be undetectable and stay undetectable. This is New York City, this is very exciting. This is from the winter, where treatment equals prevention was actually on billboards in New York City and the social marketing campaign or the Tweets that came out was if your viral load is undetectable, it means you can't pass on HIV to others. Typically, their language is people living with HIV do not pass on HIV to others, sort of slicing [inaudible 00:33:32].
This is from GMFA, Gay Men's Health Charity in England, also way ahead of the curve with the rest of the world. This is also in England, Natural AIDS Trust, also a partner of ours and very explicit, different kind of messaging and different approach to getting message out. This is the Positive People's Network in Netherlands. I love this, N=N. If you flip it around, it's U=U. This is the Czech ... Sorry you can't read this, but this is the Czech group that's using it in criminalization works. They came on early on to use the Consensus Statement in their criminalization reform in Czech Republic. This is the Turkish...
NV: Sorry, let's go back to that one and explain it a bit, I know it's a big topic, criminalization, just explain to the audience what's happening there because I know it's a huge topic, but it's very important.
BR: Well, yes it is and there are some great groups in the US that are working on crim reform. There are 33 states that have specific statutes related to HIV criminalization, so you can be arrested and imprisoned, incarcerated because [inaudible 00:34:51] because if you spit on someone, if you bite somebody, if you have condom less sex and you don't disclose, if you have sex with a condom and you don't disclose. So there's a lot of really unjust laws, not just unjust, but they're ineffective. They don't do anything to help prevent HIV. From a public health perspective, they're a disaster. They're not only unjust, but they're bad for public health. Of course disproportionately affected are going to be people of color and marginalized communities again. Undetectable isn't the answer for decriminalization. It's not the main thrust to say that "Well that person was undetectable, so that person didn't put you at risk." That's a defense, they shouldn't be criminalized. Because what that will do is end up criminalizing and creating a dangerous class of people who are detectable. And leaving them out. Many of the people who are being prosecuted are not undetectable. It's a very fine line in terms of like how to approach your advocacy using that science. And I know that a group that we're meeting with Thursday night is going to be preparing a document on that. So , how can you use this science in your criminalization advocacy because you don't want to put it right out front. That'll end up hurting the people who are detectable and that's not fair. Does that make sense?
NV: Yeah, yeah, I get it. Actually a good point, I never really thought about that.
BR: Yeah, we hadn't thought about it either until July, some of the crim folks brought it up to us. We're happy to have this document coming soon to give people some kind of guidance on how and if this could be helpful in that respect.
So, this is Turkey. This is in Turkish U=U. This is in Macedonian, which I think is really cool. This is the gorgeous French campaign from AIDES, which has also really been a wonderful partner and they're launching an I=I campaign in the summer. This is the largest AIDS organization in Europe, AIDES. This is in Spanish, I=I. This is from Spain. We have many organizations in Spain. This is ACT Up Dublin got involved. There's ACT UP groups outside the US that have been involved and ACT UP Minneapolis has also. This is from Uganda, an individual activist that works with us has been using this for treatment adherence and advocacy. This is the Canadian Positive People's Group. They've been very active.
To sum it up, I love this quote from Sylvia Rivera. This is a moment where we're seeing the world change for people living with HIV and for the field. The only reason this is happening, the only reason this change is happening is because people living with HIV stood up and demanded accurate information about our sexual, social and reproductive health. We demanded this information. And we pushed and we pushed and we pushed. We have to keep doing that. It's not over. The organizations that you saw, the 250 organizations, that's still only a fraction of the organizations that are reaching people living with HIV and their health care providers in the field. We have to keep fighting. I should say let's start moving from fighting to educating. A lot of this started with some fighting. Now I think we can turn to educating, educating locally, educating our public health departments, educating our doctors, holding them accountable to get this information to their other patients. If you're told that you're undetectable and untransmittable, ask your doctor if he or she is telling other people. We've heard experiences where one person walks out and finds out that she's untransmittable, she can't transmit HIV. And another person walks out and he says he thinks he's still a risk.
We've got to work together. You can come to our website. There's ways to get involved. There's resources to advocate in your communities and for organizations to sign on as partners. Once you're a partner, you're part of this network and this very exciting movement that's truly changing the narrative and changing the world for people living with HIV and for the field. That's it. I hope you will join us.
NV: Yeah, do you mind if I ask you a few questions that people have been sending in?
BR: Oh, of course, yeah.
NV: For people with HIV, this means something for people with HIV and without HIV. Obviously, the meaning is a little different for both of those groups, but online especially when people are trying to meet other people and all that and they disclose. They say for instance, "I have undetectable viral load, I may not want to use a condom with that person." How do we approach when somebody judges that statement or stigmatizes that statement by saying basically condom-less sex is forbidden and it's been forbidden for 35 years. I know this is a touchy subject, but it really I think most people with HIV can ask you, it's this question if they had to.
BR: The question is how do we deal with the stigma and the shame and the judgment about condom-less sex in this field and especially in social situations. Is that what you mean like [inaudible 00:41:21]?
NV: Yeah, the judging or well the misinformation because obviously judging comes from lack of information that is why they're doing the judging.
BR: Well, I think one thing to do is if you're on the apps or one of the Grindr or Scruff or Hornet, get to website www.uequalsu.org, it's very easy and just send it to the person. Everything you need is there to basically show that this is true and you're not lying. I remember when I was dating back in 2013, 14, 15, 16, I used to send articles and there'd be one article here and one article there and nothing was very conclusive. But we have everything conclusive in one spot. I think that'll be really helpful because I know what it's like to have to keep defending yourself and trying to prove you're not a danger to people.
Whether you want to have condom-less sex or have sex with condoms, either way people are continually in social situations, where they have to prove that they're not a danger. I hope that our site is helpful for that at least until a better site comes up, I mean hope that better sites come up. Condom-less sex is, we have a right to condom-less sex. I mean condom sex is you know that was created to prevent, at least among men who have sex with men, it was a tool, it was a lifeboat to save us from HIV. Condoms aren't the most effective way to prevent HIV. Actually being on treatment and being adherent to treatment, being undetectable that is the safest way to prevent from transmitting HIV and being with that person is the safest way of preventing acquiring HIV.
It's a lot of unlearning that we need to do about condoms as being the only, as being a life rafts and kind of holding on to them. Did that answer your question?
NV: Yeah and like PrEP, like the use of TRUVADA daily to prevent HIV that's a tool for preventing transmission, treatment as prevention or U=U is also tool. I'm very surprised and I travel a lot to talk to people on PrEP, taking TRUVADA, HIV negative obviously that do not know that U=U. That surprises me. Whoever is watching this video, especially if they come from that world of PrEP education, I suggest that you bring this information up in the educational efforts to HIV negatives that are about to get on PrEP or considering to take PrEP because it's missed opportunity not to do so. That's another one of my pet peeves. I have people asking me other questions are more direct about well what happens if the person that is undetectable and I hear this from HIV negative people are bare backing all over the place and getting sexually transmitted infections, won't that be a cause for concern? I want to talk about that. That's a very good, very touchy subject, but something that I really want to deal heads on with you right now.
BR: I think that's a separate issue whether or not STIs are going to increase if people are informed that when they're on effective treatment they can't transmit HIV. When people are on effective treatment, they can't transmit HIV. That's true. Now, this is an education piece, so we need to make sure that the organizations that are working with their constituencies educate people that an undetectable viral load doesn't prevent STIs or unwanted pregnancy. A condom can help prevent HIV, STIs and unwanted pregnancy, but an undetectable viral load does not. I think it's just a matter of education, I mean we have heard that argument before, "Well, people are going to start having condom-less sex and STIs are going to increase, what about syphilis and gonorrhea and resistant gonorrhea?" That's separate, doesn't mean you can lie to people. Demetre Daskalakis says, "You can't hold one infection hostage because of another ..." I don't think I got it properly, but the fact is that you can't lie to people. You have to tell them the truth.
NV: In the messaging for PrEP, they obviously, their guidelines have people coming back to doctors for testing of their kidney function and STI. In that world, there's a structure set up in which people that choose to have condom-less sex can check themselves for any possibility of an STI. That's something else that we need to discuss obviously, not in this webinar, but maybe in a more of a formal setting on how we ensure that people sometimes don't wait sometimes for symptoms. This is me as a gay man, a sexually active gay man saying this in which we can have the HIV positives that are getting care obviously, they have undetectable viral load, so they are going to a doctor, have some access to not regular, but reasonable STI testing [inaudible 00:47:32] require. Anyways that's another subject that hopefully we can get into in other discussions.
Let's move on and thank you for answering these very difficult questions because we get them a lot out there when we are talking about HIV treatments, go ahead.
BR: Oh wait, what was the question? I'm sorry.
NV: Well, I'm sorry, you don't have any more slides, right?
BR: No that was it. That was the last one.
NV: Okay, so tell us a little bit about what does this is mean to an HIV positive person that just finds out about this information, meaning what kind of things improve? You said this improves the life of people with HIV, it's on the first slide. It's almost like you're making a claim for a treatment that helps in some way somebody's health, what improves in a HIV positive person's life when they find out about this information?
BR: Well, in addition to our own health and saving our lives, which is we've known for a while, now we know that we can't transmit HIV to other people and that lifts an incredible amount of shame and stigma and fear of transmission to others. What we've been hearing from our interactions when we are sharing this information with people for the first time or the feedback we get from social media on our website, on our Facebook page is that people, they don't feel ashamed anymore. They don't feel toxic. They don't feel diseased. They feel like they can be intimate now without fear. One person said that this gave her back her womanhood. Other people are ... We were at a conference in Ontario a week ago and one man stood up and said, "Does this mean I can have a baby?" Another man stood up and said, "I wish I had known this eight years ago." Much of his life was damaged because of the internalized stigma of HIV. Another, a woman in her 60s stood up and was crying and said that she'd always been worried about condom-less sex with her husband. They had been together 23 years, the whole time she'd been living with HIV and she was always saying, "Maybe I should, maybe I shouldn't, maybe I can, maybe I can't." Now she knows they can have that kind of intimacy together.
For some people, it's not even about sex. They're not even thinking about sex without condoms or babies. They're just feeling this lift of being diseased, being dangerous to other people. Across the board, we've been getting really wonderful uplifting feedback. Usually, I think the universe always puts us in our place right after that because when we're at this conference in Ontario, the next day the keynote speaker started telling people that it wasn't true. He wouldn't give us the reason why but he was starting to ...
BR: I told him to argue with AIDSmap and CATIE and IAS. And asked him what he knows. What does he know that these folks don't know, these scientists don't know? So, it's still a struggle. Folks, when they figure it out or when they learn about it, it still takes time to set in and to even just to sort of relearn and undo all the internal shame and stigma . It's transformational, yeah it really is, it keeps going, [inaudible 00:51:38]. The more people I hear back from, the more energy I have to keep going.
NV: Oh yeah, I've been hearing a lot of positive things out there. First thing is that I can now date and not be so afraid to disclose early on, especially now that ... That's a good opportunity to educate a person you're dating about U equal U because sometimes they don't know that they can date you safely. You're not going to be a radioactive bomb that's going to explode anytime in front of them. That's how I used to feel back in the days when I was dating with HIV. Online too, I've been seeing a lot of changes. People are putting their HIV status on their profiles more since the word undetectable means something very different. I'm seeing people feeling less stigma in their lives, less, like you said, shame of something that nobody really deserved. Some people felt like they deserved it. It's changing things rapidly. That's why I wanted to support you by doing today's webinar because this information needs to get out there. People need to get ahold of your website. This is uequalsu.org.
Do you need funds? I'm sure you guys don't get that many funds. Like I said before, it's almost like the most important [inaudible 00:53:15] for us, kind of orphan because it doesn't have a drug company behind it, even though I have to say every pharmaceutical company out there dealing with HIV, treating HIV should be educating patients with this message because their treatments work. Their treatments can prevent HIV transmissions, but I'm not hearing the pharmaceutical industry even bringing this up in conferences or in messaging. That's another request I have for whoever is watching this video and to go on your website and help you, help you financially or help you by bringing you to their cities. I'm bringing you to Houston by the way. I'm going to tell you that right now because you need to speak in front of a lot of people here in Houston, like I supported Damon Jacobs back in the days for PrEP.
BR: Thank you.
NV: Thank you so much. I don't know if you have anything else to add that you may or may not [inaudible 00:54:10] to say.
BR: I just hope people will, when you learn this information, please tell someone, tell someone, tell your friends, tell your partner, tell your family, tell your community, at your church, your doctors because you'll find that people still don't know. The only way that this is getting out is through this community, a very active community of people living with HIV and allies that are speaking out and making their voices heard. Please share the information, it's life changing, it's changing the field. We hope you'll join us.
NV: Yeah, one more thing. Guys, I'm going to be wearing this T-shirt a lot more in my parties. Just got another one, but different designs. You guys don't provide it yet, but ...
BR: Oh no, that T shirt, yeah the T-shirt that you're wearing is on our website under "shop".
NV: I bought it on Amazon, but I want people to buy through you guys. At least, you'll get some funding. We really are walking billboards, okay. This really represents you not being ashamed of your positive status and the fact is that you're educating people when you're walking around in a bar, in a grocery store. This generates conversations. When I wear this, people ask me, "What does that mean?" They don't read the small obviously lettering. It starts a conversation.
NV: Bruce, we'll have you again hopefully in the future to go more in details on your progress with your message. Thanks a lot.
BR: Thank you so much Nelson, appreciate it.
NV: We'll be posting this video as I said on YouTube and thebody.com and with a transcript also for those of you that want to read instead of watch a whole video. Thank you so much everybody for your presence today and stay tuned for the next one.