Bob Leahy: Hi Noel. If I can paraphrase what I hear the topic of your talk was, I think you felt that the attention being given to promotion and advocacy for PrEP is not being matched by our enthusiasm for treatment as prevention. But tell me how you came to this conclusion.
Noel Gordon Jr: Yes. I’ve been a PrEP user for the past three years and I started PrEP because as a young black gay man living in Washington D.C. which has one of the highest incidence rates of HIV in the country it was important to find out how else I could protect myself and my partners from HIV. PrEP seemed like a great option and after talking to my provider he put me on it and I haven’t looked back since.
So you were an early adopter.
Yes and I have found in my travels across the country that many more people are familiar with PrEP even though treatment as prevention (TasP) is just as powerful, if not more powerful, a prevention strategy, and has the opportunity to offer people living with HIV the same kind of relief and a sense of self-empowerment that PrEP has given me. I think we are missing a great opportunity by not talking more about TasP.
I see the same thing in that many people who are living positive are not aware that they are not infectious. Bruce Richman of the Undetectable = Uninfectious campaign himself got in to this because he was not made aware until relatively recently that we are unable to transmit the virus.
So the point I was making in my speech was that as we begin to bridge the gap between approximately 80,000 Americans on PrEP and the 1.2 million people who are thought to be good candidates for PrEP, talking about PrEP is the prefect hook for talking about TasP. I see them as two sides of the same coin and yet I think we have only focused on one side of the coin.
I think you said that the conversation around PrEP was a little bit more “sexy”?
Yes, I see that.
Certainly we have had a lively conversation here in Canada around TasP largely as a result of the Undetectable = Uninfectious campaign which has upped the ante but I think what you are saying is that we need to ramp up that discussion and bring it further into our messaging.
Yes and I think we need to support organizations like Bruce’s Prevention Access Campaign who are doing this critical work. I can think of only a handful of organizations whose sole purpose is to scale up on all the breakthroughs in prevention like PrEP and TasP. But his organization has very little funding, very little institutional support. It’s not just about putting increased attention and messaging on TasP, although I think that is needed, but also in allocating the resources to do those things.
Right and just talking about the history of TasP, I think it’s fair to say it’s been a little bit rocky here in Canada, in the sense that the concept was treated with a little bit of mistrust because of things like the human rights and consent issue and also the science wasn’t as clear as it has been recently. And there was a case made here that it didn’t work very well in men who have sex with men. So the enthusiasm for TasP was muted. Has it been the same there in the States?
Yes, I think the point you make is valid. It was muted here in the United States too – at least among the general public – and I think that happened in part because we missed the opportunity to lay the groundwork for it. We’ve known about the PARTNER study for a number of years and we have had at least their preliminary findings suggesting that TasP was going to be as powerful, if not more powerful, than we all thought it would be.
I think there was a missed opportunity to educate people that using medicine to combat HIV, whether you are negative of positive, is powerful. Even though we may not have been in a position to say that transmission stops with being undetectable a few years ago, we were in a position to educate our communities that we were moving in this direction.
We seemed to have waited until we had really, really, really good data.
I can certainly appreciate a desire and a responsibility to be cautious, to be truthful and be honest with people about what the science says and does not say. And I think it is our job as advocates to push institutions to move faster, to be more aggressive, and to be more forthcoming in what they share with the community. People’s lives may literally depend on it.
Would you agree that PARTNER, in particular the second release of data this summer. has been a turning point? People who were on the fence about undetectable and the risk of transmission have been able to come out and say “this is really working; we have got enough data now to make quite strong statements that include “uninfectious” and “untransmittable””. It’s been a game changer.
I definitely agree. PrEP has been a game changer for HIV negative men like myself, who for years feared having sex or relationships with other men because HIV loomed over them. I think PrEP allows gay men, particularly younger men, to sort of come in to their sexuality and to take control of their sexual health in self empowering ways. I think TasP has the potential to do the same thing for people living with HIV and yet we have not been as aggressive as I think we can and should be in that respect. That means people living with HIV have to go on day after day dealing with internalized stigma and stigma that’s put upon them based on the misconception that once you have HIV you are always going to be infectious.
Yes, I’ve been doing the same kind of educational work here and although you have successes you frequently encounter people who don’t want to embrace the uninfectious message. Why do you think that is? Where is this coming from?
I think there are two things going on. One is true for everyone, and that’s the simple fact that whether someone is living with HIV or not; it’s hard to change their mind once they have made up their mind about something. So after 35 years of HIV testing, prevention and treatment messaging, people have certain ideas about what HIV is and how it’s transmitted and now we are changing – to some degree – what people have been taught for so long. So it’s going to be hard.
Do you think the fact that the message in this case, specifically from the U=U campaign, is coming not from institutions, not from AIDS Service Organizations, but from people living with HIV is a factor. Some people have said, “I’m not going to believe it until the government tells me or organizations tell me.” They want to hear it from an authority figure so they see this as a credibility issue. They are not used to hearing strong prevention messages coming from within their own community.
Yes, I think there is some truth to that. I know that when I talked to my friends about PrEP three years ago, they wanted information from a provider. But they would still come back to me and say “tell me about your experience” to validate what the provider had said. So in cases like this I think it’s important for public health and government officials to share the message in the most honest and unvarnished way possible because that is where people want clear and credible information they can use in their every day lives. People also look to one another to provide the intangibles that they need to make a decision, so I think there is tremendous power in people living with HIV like Bruce and yourself sharing their stories because that is ultimately what is going to move people emotionally.
Again, bare in mind that we have been messaging in a certain way for 30 to 35 years and now we are making yet another shift. I suspect it’s going to take some time for the new message to resonate, which is why I think we need to be much bolder and more aggressive in talking about these issues.
Yes, and I think we have to acknowledge that organizations create structures like websites and campaigns which by their nature take a while to mobilize or renew. Whereas community voices can be much more nimble and as we are seeing are actually leading this conversation, right?
Definitely and I think that’s why we have seem such tremendous success. I think that people like Bruce and his organization and the community of experts he has assembled have really done a fantastic job of marrying the hard science of TaSP with the moral authority and credibility needed to drive the message home to the average person on the street. It’s one thing to put a ream of research before someone and say “believe me” and another to be able to humanize the issue. In my experience working at the Human Rights Campaign on LGBTQ equality, that combination gets beyond the head to the heart.
Good. Noel, I really admire and appreciate what you are saying here. A big thank you for taking time to talk to PositiveLite.com.
About Noel: (above left) Noël Gordon Jr., 25, is a noted public policy professional with a gift for pragmatism, persuasion, and progressive politics. Noël joined the Human Rights Campaign (HRC) in 2013 and currently serves as Senior Program Specialist for HIV Prevention and Health Equity. In this role, Noël has helped HRC educate more people than ever before about the current realities of HIV, while also leading the organization to take on a much more active and strategic role in the fight for unfettered access to Pre-Exposure Prophylaxis (PrEP), comprehensive sex education, and other common sense, policy solutions. An openly gay, Black man with Afro-Caribbean and Latino roots, Noël holds a Bachelor's degree in Political Science from the University of Michigan, Ann Arbor and completed a law and policy fellowship at the University of California, Berkeley. He currently lives in Washington, D.C., where he has been a PrEP user and advocate since 2013.Follow him on Twitter @noelgordon09.