Michael Brady, Medical Director, Terrence Higgins Trust, UK
Talking U=U
“Undetectable = Untransmissible” is one of the most positive messages people living with HIV can hear. It reduces the stigma associated with HIV and provides motivation to stay on treatment to keep both themselves and their sexual partners healthy. Yet many clinicians still struggle with the best way to deliver this message. This plenary describes the highly successful “Can’t Pass It On” Campaign in the UK and explores the challenges of talking U=U with both people living with HIV and people at risk.
Descriptive Transcript
Thank you very much for the introduction. And thank you to the conference organizers for the invitation to come and speak. It’s a real pleasure to be here to be in Toronto to join your conference. I am going to share some of our experience at the Terrence Higgins Trust in the UK of developing a national campaign to turn the U equals U message into a more digestible form, to share that really important story.
Just in terms of disclosure,s my key ones are that I’ve received honoraria from Gilead for talking about U equals U at a number of meetings, and the second part of the campaign that I’m going to tell you about, the “Can’t pass it on” campaign, was also funded by a grant from Gilead Sciences. Now my talk is going to be relatively data light. It was going to be very data light, but I think it’s important to start by reflecting on the facts of that. The point that we’ve reached at in terms of the messaging around U equals U, is built on a foundation of more than two decades worth of academic research, clinical evidence, and expert opinion. Built fundamentally on our knowledge that viral load is the single biggest determinant of HIV transmission.
So the higher the viral load the more likely a transmission is to occur, and the lower the viral load the less likely a transmission is to occur. And we’ve mentioned already the HPTN052 study, but I think it’s really, and certainly for us in terms of our thinking around this campaign, the PARTNER study which was the tipping point that got us to a point of confidence about being definitive about the language that we use around U equals U with individuals who are living with and at risk of HIV. Both PARTNER 1 which was published in 2016, and PARTNER 2, looking at men who have sex with men which was presented at the IAS conference earlier this year. So just a refresher or a reminder of those two studies PARTNER 1 and PARTNER 2, both a similar design in the sense that they recruited sero different couples, where one partner was positive but on effective treatment with an undetected viarl load defined as a viral load of less than 200 with a negative regular partner, and PARTNER 1 published the data on 888 of those couples all of whom contributed over twelve hundred couple years of follow up to the analysis, reported nearly sixty thousand episodes of condomless anal sex and there was zero transmissions which were linked to the positive partner.
An important fact from from the PARTNER study both ONE and TWO is that there were transmissions in that study in PARTNER 1 there are 11 initially HIV negative individuals who became HIV positive, but all of those were infected from sexual partners outside of that primary relationship, so that study gave a result of zero linked transmissions in the context of a sustained undetectable viral load. Also importantly whilst this wasn’t sort of confirmed sexually transmitted infections, that was in the context of a reasonable amount of reported sexual sexual transmitted infections, there were still zero transmissions, so really solid evidence from PARTNER 1, the caveat around that that just one third of those couples were men who have sex with men, so the data was perhaps less solid for men who have sex with men than it was for heterosexual couples. Which is why PARTNER 2 was continued, looking only at men who have sex with men couples, and that reported, as I said earlier this year data on 1,600 couple years of follow-up, that’s about 782 couples all together reporting 77,000 condomless anal sex acts, and zero linked transmissions to the primary positive partner who had an undetectable viral load. And again in that study we saw 15 infections, but all of which came from sexual partnerships outside of that relationship, and a higher rate of reported sexually transmitted infections, which gave us the confidence for men who have sex with men that we already had for heterosexual couples, both in PARTNER 1 and from HTPN052.
So John’s already touched on this and I don’t think I need to really say to this audience, how hugely significant this message is for individuals living with, or at risk, or affected by HIV. It reduces the shame and the fear around sexual transmission, is a huge, potentially a huge way to tackle stigma against people living with HIV, it simplifies the concept of conception, we don’t have to worry about sperm washing, or prep around the time of conception, or timed conception, and there’s a really strong message, very strong message, to add to our strong message about the benefits of early diagnosis and treatment on the individual and on their ability to achieve a long and healthy life. To encourage people to not only test, but then also to engage in care, and to stay on treatment and adhere well. It’s also a very strong public health and policy argument to continue our campaigns to ensure universal access to testing for all of those groups who are at risk of HIV and in continued investments in high quality treatment and care services.
So our thinking around the current “Can’t Pass It On” campaign started about two years ago now, towards the end of 2016, a few months after the prevention access “U equals U” consensus statement and a few months after PARTNER ONE was published, for us as an organization there are a number of reasons why we felt it was important to step up and start to share this message. Clearly at that point, and I think you could say that most of these still apply now, there was very little awareness or understanding about the “U equals U” message amongst people who were living with HIV, amongst health care professionals, or people working in the sector there was certainly very little consensus about our approach to that messaging, and what the language we should use around “U equals U”. There was very little if any awareness in the general population, and we felt it was really a responsibility for us as a national HIV organization to share this essential message with both with people living with or at risk of HIV, and the general population.
So we did some work to start to design the campaign. There were kind of four aims of the campaign, one was to challenge stigma, two was to amplify and share the messages around the study, 3 was to show as an organization, real leadership and confidence both internally within our organizatio,n where there was still some conflicting views about how we should share this message, but as well outside of the organization, and particularly as I’ll show a little bit later, to ensure that the voices of people living with HIV were front and center to the campaign. Just to put some context, during the course of both before and after, and repeated again this year, we’ve done some national surveys which are undertaken by YouGov, which is a major polling organization in the UK, and this just demonstrates where we’re at, or where we were at, certainly. So this is from 2017 where only 9 percent of the general population we’re aware that people on effective HIV treatment, who can’t pass the virus on. So just to tell you a little bit about the campaign.
So it initially launched in 2017, and our starting point was taking the undetectable equals untranslatable message and turning it into something that was more clear, concise, and easily understood. Because the words undetectable and untransmittable, terminologies that are not particularly accessible probably to most people who were working outside of a clinical setting. Our process was one that started with sort of brainstorming and internal consultation within the organisation, and then online focus group testing of a number of different messages. So we got to “Can’t Pass It On” through a phase, it’s quite interesting reflecting back on some of the things that we suggested using, which are a little bit embarrassing, that must be said, but anyway at the beginning we had phrases like “yes we’re sure”, “this changes everything”, “won’t pass it on” or “can’t be passed”, and they distilled down into two key messages which tested the best. One was “I’m not a risk” which is a very individual approach to the messaging, and the second one which we ended up choosing “Can’t Pass It On” which is a more general message, and “Can’t Pass It On” won. They both scored very highly, but “I’m not a risk” scored much more highly amongst people who are living with HIV, and “Can’t Pass It On” scored much more highly amongst the general population in terms of believability, in terms of reducing stigma, and particularly in terms of people’s likelihood to share the message, and that was really key, because fundamental to the campaign was sharing it predominately through social media.
So that’s why we went with “Can’t Pass It On”. And we distilled the messages into very simple infographics, as what you can see here, which is a summary of the PARTNER study and very simple messaging. People on effective HIV treatment cannot pass on the virus. But we recognized that we needed to provide more information ,and layers of information. So the campaign was designed as a slightly hierarchical way, so there was the very simple way in, hashtag #CantPassItOn, and that was launched with a dedicated website supported by various press and social media pushes. But on the website and certainly in terms of our messaging, there was increasing levels of information that sat behind “Can’t Pass It On”. So the first level was just a general description or explanation of what we meant by that, what we meant by effective treatment, what we meant by an undetectable viral load. And what’s up behind that was more detailed, frequently asked questions, and then what’s that behind that, if people wanted to go all the way through the tiers of information, was a detailed summary written by myself around this of all the scientific data going right back to studies like the rock I study 20 years ago.
So there were different points of entry, and a tear if you like of information that people could get around the campaign. So I said it was launched in summer 2017, and it was launched particularly to coincide with our pride events in London, and supported by a campaign out through media releases through written press, through TV, and through social media, which I’ll show you shortly was a really fundamental component to the campaign. That was in 2017, and then we re launched the campaign with some different imagery and a slightly different approach in 2018, as a result of a grant from Gilead. As I said one of the key aims was to ensure that people living with HIV were front and center of the campaign, and I think this is probably the single biggest reason why it has been as successful as it has. We had 38 individuals living with HIV, who gave their own individual testimonies as a couple of examples here, which were both in terms of little statements that could be used on social media or in press releases, or more longer written testimonials, or are many of these individuals were involved in interviews for that for the press or on television. So those 38 individuals were a real hook for the huge amount of media coverage we got for the campaign, which resulted in around twenty point four seven million people being able to view the message through various different media outlets.
There’s some examples of the individuals and the outlets here. So there’s a lot of online coverage, there was coverage in the written press, there were interviews on the television, and a lot of spreading of the message through social media. Twitter, Instagram, and Facebook predominantly. So we had a burst in 2007 and then we were keen to refresh the campaign this year, “So Can’t Pass It” on stays and will remain our sort of tagline, or a hashtag, or a hook for the campaign. We redid the imagery this year. There’s a couple of examples there of real people, real couples in sero different relationships. So real lives and real testimony remained central to the campaign. This year we had much more of a sort of out-of-home visibility, so that’s a billboard, it’s huge billboards in Vauxhall, which is in South London, which is kind of the epicenter of where our HIV epidemic in London and therefor the UK, because it has a high concentration both of men who have sex with men living in that borough, and also of African Caribbean and Black individuals.
So we had billboard campaigns, we had things over telephone boxes, on the side of buses. So slightly different from the first year, in the sense that was more out of home advertising, and we sort of ramped up if you like, the information that people could access themselves. So there’s a dedicated website where all of the information exists, and also there are video testimonials from some of the individuals that were involved in the campaign. And if you’re interested you can find this by simply googling either Terrance Higgins Trust or “Can’t Pass It On”. All of the resources are available with no copyright on them, so you’re very welcome to take them and use them, and there’s a sort of a social media pack that you can download with images that can be pushed out on facebook, and instagram, and twitter, and so forth. So just a little bit of numbers if you like. Interesting we have, and I think that is testament to their skill, a very small but very expert social media marketing team at Terrance Higgins Trust, who are very good at spreading message to target communities, as well as the general population through social media.
So actually our biggest impact came through organic social media, which was unpaid for, we actually paid very little for advertising for this campaign, and there’s just some examples there, so the hashtag “Can’t Pass It On” has been used almost three and a half thousand times on Twitter, just between July and September of this year, that total reaches a hashtag that was over ten million. Our own personal use of it through the THT Twitter, Facebook, and Instagram pages has been over 250,000. It’s been shared and liked on Instagram a thousand times. 138 thousand unique users on Facebook, and one of the other things that is important, and this goes back to talk in the PREP session was the support of a number of our parliamentarians and them getting the message out and tweeting and sharing that message as well. As that we did do a little bit of paid for advertising through Google and Facebook predominantly, which did get us some extra reach, but while that’s interesting, it wasn’t as much as the organic reach that we got. So in the first campaign we’ve reached 600,000 men who have sex with men, and Black African individuals.
The second push was a little bit smaller, 76,000. Over a million impressions with over 1,000 click throughs are on Google through paid advertising. And we did some targeted Facebook adverts around “Can’t Pass It On” which received over 2000 click-throughs. Visibility of the message has been really important. So these are some images from our last two London prides. So Terrence Higgins Trust has marched under the “Can’t Pass It On” banner in 2017 and 2018. That’s been a really powerful thing to keep the visibility up, and to extend the reach of the message. So as well as the the March, we’ve done it not just in London, but probably most of the prides around the UK we had a presence on the stage at pride, with our people living with HIV talking about the importance of the message, and that’s been a really powerful way for us to share the word.
It’s important for us to evaluate and learn about what we do. So his just a little bit of the data in terms of knowledge and recognition. So before the campaign about 70 percent of the men have sex with men, or Black Africans that we consulted knew about the “Can’t Pass It On” message, and that went up to 80 percent after the campaign, with 40 percent prompted recognition in the general population, which is actually really good. I think for a relatively small, certainly small resourced campaign, coming from a very challenging standing point of maybe 10 percent of the population actually knowing about that message. So our learning from it, just to distill down into a few points, is I think fundamental to its success has been the initial consultation.
We don’t come up with these campaigns in an ivory tower in isolation, we consult with the individuals that we are trying to get that message to, to make sure that the message was right and as impactful as possible. As I’ve said the personal testimony was the single most powerful hook for the campaign, and the thing that got it the most traction. A sub tiered and coordinated multimedia approach, and particularly the targeting through social media got a reach well beyond what we would have been able to do if we just used traditional marketing or media approaches. And the definitive and simple language is really key. It’s just on that point that I will finish, because I think that for me is the most important thing for all of us working in the sector.
Whether we’re talking to colleagues or people living with HIV, or people at risk of HIV, or friends, or the general public, we have reached a point that the data is as definitive as it will ever be, so that we can use language like the zero, can’t, and won’t, not maybe, extremely unlikely, nearly impossible, or close to zero. I put a quote there from Allison Roger, who’s a friend and colleague of mine, and the principle author on the PARTNER study, who presented the data at IAS, the last bullet point on her final slide of her presentation were the words “undetectable equals untransmissible” and when asked by another genius in the field, Bruce Rickman, she replied in the Q&A after the presentation. “It is very very clear that the risk is zero. If you’re on suppressive ART you are sexually non-infectious. The time for excuses is over.” Thanks very much for your attention. [Applause]