The U=U campaign (or Undetectable = Untransmittable) has stated clearly that people living with HIV who achieve an undetectable viral load will not transmit (or pass on) HIV through sexual contact with their partners. To better understand the impact of this knowledge – and its recent embrace by scientists, healthcare providers, and community-based organizations –  we sat down with Bob Leahy, the Canadian Lead for the U=U campaign.

When you first got involved with U=U, did you envision that it would become as big as it is?

I don’t think any of us did. Nobody set out to build a global movement that includes thousands of people living with HIV and over 400 community partners in over 50 countries. It kind of happened organically. Why?  People were hungry both for the truth about risk of transmission and a cause they could truly get behind, where people living with HIV were clearly the drivers. That’s an unusual model and people, for reasons sometimes very personal, chose to get behind it in a big way.

The current scientific consensus behind U=U is based upon evidence from multiple studies completed over the past several years, which have now come together to make it clear once and for all that a person living with HIV who has an undetectable viral load WILL NOT transmit HIV to their sexual partners – period. However, some would say that this conclusion was clear much earlier than 2017. Do you believe that scientists, healthcare providers, and AIDS Service Organization were too slow in adopting a hard stance on the impact of an undetectable viral load? If so, why do you think that is and what is its impact?

I do think they were too slow. That became really clear when PARTNER results came out, and despite its game-changing findings, as I think CATIE called them, there was zero change in messaging around risk. Truth is many working in and for our community knew people who were undetectable posed no risk but for a variety of reasons were not sharing the good news. Some organizations still won’t go there. Why? Because they felt poz folks couldn’t handle it responsibly and would be fucking in the streets in no time? Because they felt liability issues could come back to haunt them? Because they came from a position where risk was to be averted at all costs, even the most negligible? All of the above and more. It’s a fascinating phenomenon when people know something is true and beneficial but won’t share it. Some have called it unethical. I don’t use that term. I just think what was happening was wrong.

Conversely, community – particularly those living with HIV and those who belong to populations most at risk of infection – seemed to see the writing on the wall and began to adopt this position earlier and more forcefully. Why do you think that is?

As one community activist who took to the stage in Paris at IAS2017 said “people with HIV are not dumb”. We know our bodies; many of us know the science well too. It was impossible to ignore the Swiss Statement in 2008. It was impossible to ignore poz women were having healthy babies. It was impossible to ignore the lack of transmission amongst serodiscordant couples having condomless sex. We also recognized that health care providers and organizations seemed overly cautious, which some of them later acknowledged. The bottom line is that people living with HIV were right. It was a victory for common sense as much as science, I think.

Some individuals supporting U=U have begun following the principle of “see something, say something,” meaning that if they see information that is out of date, particularly as it relates to the impact of an undetectable viral load or treatment as prevention, they will call it out. Have you had to do this? And why do you feel it’s important to keep organizations accountable in this way?

I have done a lot of this work – drawing attention to inaccuracy –  both before and after U=U. So much information out there was wrong. Let’s face it, one year ago every website around the globe had the risk of transmission associated with an undetectable viral load very wrong. Plus they were full of warnings. Warnings that people always should wear condoms.  Warning about STIs. That even though virus in the blood may be undetectable your semen may be teeming with it.  Sex shouldn’t be about warnings, but sites seemed full of them. Anyway, in Canada we corresponded with the major players like CATIE and ACT. Once U=U came along they were really good about ensuring accuracy and a sex-positive tone.  But even today we encounter pockets of resistance, particularly in the States and at the highest levels too. It can be very frustrating work.

Knowing what we now know, that undetectable equals untransmittable, how do you think that should impact HIV prevention work moving forward?

I’d love it to give credibility to the real worth of listening to and engaging with ordinary people living with HIV. We are a force to be reckoned with – and we can and should be equal partners in prevention initiatives.

U=U really is a great example of people living with HIV leading HIV work, which is not something we always see happen. Why is this so important? And do you think U=U would be as successful if people living with HIV were not at the forefront of the movement?

Let me answer that last question first. I think the answer is a big fat “no”. Even with no money, little infrastructure and no dedicated staff the U=U community pulled this off. Taking out the need to report to funders, for example, freed up those leading the campaign to do things faster and more in tune with the community. I think too that structure fed into dissatisfaction within the community of people living with HIV that GIPA (greater involvement of people with HIV/AIDS) wasn’t really panning out, that we were short of major successes. Then along came U=U, so visibly a product of poz empowerment, that it bred a whole new legion of activists. It’s been remarkable to see my colleagues grow. Was this intended? I think frankly we were focused primarily on getting the truth out – translating the science in a way people could understand. But it quickly became apparent that we had to do this respectfully, inclusively and foster empowerment, knowledge and creativity within our followers. We had to focus too on those not able to achieve undetectability, as U=U became a human rights issue. It’s complex work. People like Bruce Richman who heads the campaign are incredible leaders who bring a lot of skills in that regard to the table – and also engender a lot of loyalty.

U=U is more than a campaign. I’ve seen the Facebook group first-hand where thousands of people living with HIV from around the world are able to build meaningful connections and share their stories, offer knowledge, and provide support. Was this always an intended element of the campaign or did it just happen? And seeing this type of online forum develop, do you feel these types of platforms can help fill some of the gaps some people living with HIV experience as it relates to peer connection and support?

I think people living with HIV are somewhat of an untapped resource. I can’t remember this kind of online mobilization happening before. It’s a tribute to the power of social media, of course, which allows global communities like this to grow, share ideas and stories and be strengthened by common bonds. But did we intend to build community? I don’t think so but it’s worked and has become a powerful element of the campaign. Personally I’ve made friends and connections amongst the strongest in my life. It’s about being united in a common cause, but also having your eyes opened to the talent, determination and support which exists in our community.  I’ve loved that. It’s incredible.

Now that you’ve come so far – with hundreds of partners from all around the world – what is the next step? How do we continue to move U=U forward in a way that has the maximum impact on people living with HIV and those most at risk of infection?

The strategy was first to approach service providers so that as authoritative resources people looked up to we would all be on the same page – that if you are undetectable, you can’t transmit HIV sexually. With a very few exceptions that has happened. As well, we have made good inroads, through social media, in-person presentations and people talking to each other to inform people living with HIV so that they are aware too. Where we clearly have lots of work to do is in making sure that the wider community, people who are NOT HIV-positive, no longer think people living with HIV inevitably present a risk to others. If we want to end HIV stigma, that’s a hugely important step. So I see that as the next big challenge. And to get permanent funding, by the way, so that this work is sustainable. We have done well without much money, but with personal sacrifice. The work is valuable and that needs to be recognized. I think at some point it will be.

 

About Bob Leahy: Bob Leahy is the publisher of PositiveLite.com, Canada’s Onllne HIV Magazine and also Canadian Lead for the U=U campaign.

For more information on the U=U campaign and the related science, visit the Prevention Access Campaign