Ian Green, Chief Executive, Terrence Higgins Trust, UK
Innovations in Testing
How can we reach the 14% of Ontarians—just over 3,000 people—who have HIV but have not yet been diagnosed? This plenary talks about innovative ways to make HIV testing more accessible to more people. What’s the potential to bring these innovations to Ontario? What else should we be doing to reach the undiagnosed?
Good afternoon everybody. Bonne après-midi. My name is Ian Green, and I’m the chief executive of Terrence Higgins Trust. We’re the UK’s largest HIV charity, named after Terry Higgins, who was one of the first people who was known to have died of a HIV/AIDs related illness, back in 1982. Today we’re at the forefront of HIV prevention activities, including being responsible for the government’s HIV prevention service, enabling people to live well with HIV, and also really importantly to amplify the voices of people living with or affected by the virus. I’ve been the CEO for three years now, and and previously I had a number of roles within the YMCA movement. I’ve been a service user of THT for a number of years, and I’ve lived with HIV since 1996. Apart from my employment with Terrence Higgins Trust, I have no conflicts of interest to declare.
So I’ve been asked to present on innovation in HIV testing particularly focused on HIV self testing in the UK. Now I’m very conscious that the UK has a very open approach to HIV testing, and that’s very different in different environments, because we’re the regulatory environment is different, and I know that’s the case here in Canada. Much of the liberal approach in the UK has been due to lobbying and pressure applied by organisations like Terrence Higgins Trust, HIV clinicians, community activists, and so we are now we now have a range of approaches for HIV testing as part of a process of taking testing to people and in normalizing HIV testing. So you can see from this slide, as well as serology tests from general practitioners, or clinics there is self sampling, that’s where people are sent test kits in the post and then they are returned to the laboratory for analysis.
Having a dried blood spot, they are now readily available and are currently free through public health England’s and national HIV testing service. Generation 3, point-of-care testing is now the backbone of HIV testing in the community. In sports clubs, places of worship, in the workplace, in sex on-premises venues, etc… And in recent years, self testing has been available and I’m going to focus my attention in this presentation on this new and relatively innovative approach to testing. There are three licensed options for self testing in the UK. You can see then here. Two blood and one saliva. Self testing was legalized in the UK in 2014, and as a result of that Biosure had their first self testing kit licensed in April 2015. It’s a finger prick second-generation blood test. It’s incredibly easy to use, and the results are available within 15 minutes. In 2016 Biolytical self test kit was also licensed, and is also readily available.
The Test complete results can be made available within a minute, and by readily available, I mean that you’re able to purchase them online. And now you can go to your local high high street pharmacy and pick one off the shelf, they retail for around 30 pounds. Now before I go into a bit more detail about the two pilots that Terrence Higgins Trust ran, I would like to give some UK context. And I’m sure that this also applies to Canada. Now we’ve known for some time that a substantial increase in HIV testing was required to reduce late diagnosis which remained stubbornly challenging in the UK, at around 40 percent. To reduce undiagnosed HIV where we’ve seen some massive improvements. We now just have eight percent who are estimated to be undiagnosed, and also to support combination prevention, treatment as prevention, condom use, and prep.
Some of the barriers to HIV testing such as an unwillingness to engage within a healthcare setting, could be overcome by self testing. Yet self testing is still in its early stages but things are changing. As with all of our approaches to innovation, we undertake significant testing of our proposed delivery model, and this was the case with self testing. In this slide you’ll see that we surveyed users of the self sampling test, the dried blood test, to see if they would be more likely to test for HIV if self testing was available. And you can see that 80 percent of respondents from those who had never tested were more likely to test, and a staggering 95 percent of those in a high-risk group were more likely to test.
So how did we test this model? We piloted a self testing service in 2016/2017 using our charitable funds. As the service was based on digital platforms, we set up a dedicated website and promoted the pilot through social media channels. The service was offered to the two main groups impacted by HIV in the UK, MSN and the black African community. The participants provided us with some very basic demographic data, as well as completing a high-level risk assessment. And once that was done, and importantly once they gave us a mobile telephone number, the test kit was sent to them in the post. Service users were asked to log on to a secure web page on the web site to notify us of the results, and they were prompted to do that by a SMS reminder on day 7, and day 10. After the test kit had been dispatched. And those who reported a reactive result were called for support and to ensure that they were linked into care.
We also encouraged an online satisfaction survey form to be completed. The pilot ran for just over a month. Just under 5,000 kits were ordered, and 62 percent of those using the service notified us of their results. In this pilot very few of the users came from the black African community, and we’ve addressed that in a further pilot with the majority of participants identifying as men who have sex with men. Now I mentioned that the majority of marketing was undertaken through social media. Grindr, Facebook, THT’s own website. And interestingly 85 percentof those who told us, access the service via their mobile phones and as a resultwe have made our new website much more user-friendly for mobile phone use. SMS reminders seem to work, with the majority of individuals reporting their results back to us, after the SMS reminder at day 7 and day 10.
And here’s some really interesting data. 19 percent of those hadn’t that responded had never tested before. 37 percent hadn’t tested in the past year, 81 percent reported two or more sexual partners in the last year, 68 percent had reported condomless sex in the last three months, and almost 50 percent reported having sex under the influence of drink or drugs. So self-testing pilot was clearly reaching the groups that should get tested regularly. And here you’ll see a more detailed a gender sexuality breakdown of the participants. And as I mentioned earlier the majority being MSM. 28 people reported a reactive result, 3 already knew their status, and we had one false positive reported. Now we were able to contact 92 percent of those those report in a positive result, and it’s pleasing to note that all it already accessed confirmatory testing and HIV services before we called them.
The user satisfaction survey generated again some really interesting results, with 98 percent saying they would use a service again and 97 percent would recommend it to a friend if they expected that friend to test negative, and 72 percent if they expected them to test positive. Now these findings reinforce the findings of an earlier series of user feedback, which was overwhelmingly positive apart from one, which you seen in red, but I understand that that was less about the test but more about the follow-up to care. So the initial pilot demonstrated the feasibility and acceptability of self testing in a large scale pilot. Successfully targeting high-risk MSM who were not testing regularly or not at all. The service was cost-effective but we needed to better understand self testing in non MSM groups. So as a result of that we decided to undertake a second pilot, this time using the Biolytical self testing kit.
A smaller number, two thousand units, and due to a different approach to social marketing, there were more non MSM, 13 percent, non MSM who participated. With similar results around levels of satisfaction and once again 18 percent had never tested and 52 percent hadn’t tested in the last year. So they were the two pilots that we undertook, and as a result of that, we decided that we needed to roll this out as a normal program. And so we launched a for rollout earlier this year. The British actor Alec McGowan left Terrance Higgins Trust a very generous legacy in his will, and as part of the request we launched this program with public health England partnering with us, and they ensured that the market into the black African community was appropriately funded. And as the 1st of of November we have had 16,000 orders with just under 20 percent coming from the black African community, 49 positive results, and we generated about 13,000 pounds in donations. So we need the legacy to keep this going.
It’s a prgram that we intend to continue. We would like to see a thousand tests being available per month. So all of this is about the process of normalizing HIV testing. Whether that is self testing, point of care testing, home sampling, or clinics, or your general practitioner. Terrence Higgins Trust is responsible for running national HIV testing week, and for the last two years, Prince Harry has assisted us in launching the week, and he’s done a huge amount to promote HIV testing and also to challenge the stigma associated with HIV. Interestingly, when he took a HIV test in 2017 there was a 500 percent increase in interest in self testing on our website. When I told him that he blushed. And here you can see one of our volunteers showing the Prince how to take a self-test.
So in conclusion, what are the barriers and challenges? I mean clearly it costs money, and we’ve not yet convinced commissioners to invest significantly in self testing, and so again I mentioned we’re having to fund this from our own charitable resources. So could self testing assist in reaching the undiagnosed? Those who want to test, but don’t or can’t, and those who don’t perceive that they are at risk. Self sampling the dry blood spot testing remains underutilized, with about 26,000 test kits used per year. And self testing is still seen by some to be too novel, with over 20,000 test kits used in the past 18 months. The majority through Terrence Higgins Trust. This is beginning to change. So what about the future? Well this is a HIV self testing vending machine in the gay sauna in Brighton.
Why shouldn’t we see these in all sexes on-premises venue, in clubs, in bars, in community settings, etc… And finally we need a dramatic step change in HIV testing to identify undiagnosed HIV and prevent HIV transmission. The scaling up of HIV testing in the UK has had a massive impact, due to increased accessibility to testing along with condom use, U equals U and prep. And we’ve seen a 28 percent reduction in new diagnoses in two years. We now have we now have 92 percent diagnosed 98 percent on treatment, and 97 percent of those virally suppressed, but we must not be complacent, if anything we are going to need to work much harder to reach that 8 percent. And our approaches to testing must continue to be innovative and cutting-edge. The responsibility to promote HIV testing rests with us all. We believe that self testing has a significant part to play in getting to zero HIV. With better use of social media, approach to self management, and outreach. As in everything, leadership and investment is a key. Thank you very much.[Applause]