Last year was something of a bumpy ride for many of us. There was Brexit, Ed Balls strutting his stuff on Strictly and the unexpected deaths of a host of talented musicians and artists. However, like an early Christmas gift, in the penultimate week of December came the news that London's busiest sexual health clinic, 56 Dean St, had seen a 40% drop in new HIV diagnoses compared to the same period in the previous year - despite a similar number of tests being performed. Encouraging news.
Scott Ideson sat down with Michael Brady, Consultant in Sexual Health and HIV at King’s College Hospital in South London, Medical Director the Terrence Higgins Trust and a director of SH:24, towards the end of last year to get his insight on PrEP, stigma and the work needed to reach zero transmission.
What are the current methods of HIV prevention in the UK?
HIV is prevented in a number of ways. The standard traditional ways we've used since the beginning of the epidemic include using condoms, and reducing the number of sexual partners people have condomless sex with. Essentially, condoms will prevent transmission. More recently we've been using ‘biomedical approaches’, so not just behavioural approaches about using condoms, but using HIV therapy. There's lots of evidence that shows the use of HIV therapy either in people who are HIV-positive or who are HIV-negative is probably the most effective way to prevent transmission. If you're positive and you're on successful treatment that is suppressing your virus to what we call undetectable levels, then you pretty much can't pass the virus on to someone else. We don't worry about transmission now if somebody's HIV positive and has an undetectable viral load. And then in HIV-negative people, there’s pre-exposure prophylaxis, PrEP, which is the use of an HIV drug called truvada to prevent transmission and that's well over 90%, nearly 100% effective if it's used properly.
Another thing to add to the list of prevention methods is regular HIV testing - because you can't maximise your HIV prevention unless you know what your status is. Most transmissions happen from people who don't know they have HIV. We also use post-exposure prophylaxis, so when someone has had a potential exposure they come in to clinic or A&E and get a month's worth of HIV medication. If they take it within 72 hours of the sex it reduces their risk of transmission by around 75 or 80%.
If all of these tools are fully put to use – condoms, regular testing, treatment as prevention, and PrEP – we have everything we need to stop HIV transmissions.
PrEP is currently not freely available on the NHS in this country, although it is in other parts of the world. Recently the Court of Appeal upheld the High Court ruling in a case brought by the National AIDS Trust for NHS England to consider funding PrEP. What would you like to see going forward?
Well, I would like to see PrEP available for everybody who needs it as soon as possible, and to see it used alongside condoms, testing and treatment. It's a really revolutionary approach to HIV prevention, both medically and socially. If you take the tablets regularly you can be almost 100% confident you won't get HIV, and that's remarkable. For the first time, it gives a very reliable method of HIV prevention for people who are HIV-negative and shares the responsibility for stopping transmission between HIV positive and negative people. I talk to people who say it's been liberating in terms of confidence and encouraging discussions around HIV status and what methods they’re using to prevent transmission - whether you know you're positive and on treatment, or whether you're negative and you're on PrEP. It encourages a more healthy approach to the dialogue about safer sex.
PrEP is a great example of a drug that can save the NHS money in the long term.
I really welcome the recent announcement that NHS England is going to invest £10m in a trial that will ensure access to PrEP for 10,000 people over the next 3 years. Whilst this is not the same as a long-term plan to commission PrEP for everyone who needs it, it does move us forward. Whilst we don’t need a trial to demonstrate that PrEP works and is safe, there are some valuable questions this study should answer about how we can inform people about PrEP, engage those at risk and how people might take PrEP and for how long. There are still some details we need to know about exactly how the trial will work - but if we can get 10,000 people at risk of HIV onto PrEP that will prevent hundreds of HIV infections and save the NHS many more millions of pounds than we have to initially spend on PrEP.
Stigma is repeatedly cited as a barrier to HIV diagnosis, and consequently treatment. Why is the stigma around HIV so unjustified?
There has been stigma around HIV since the very beginning of the epidemic. It partly came out of fear - when the disease first appeared nobody really knew how it was transmitted, who it came from or how to protect themselves. I think it then shifted to a very different type of stigma focused on the groups affected by HIV. The people who were getting infected were already marginalised groups who were stigmatised anyway, so gay men particularly, injecting drug users, migrants, African populations. I think there's always the factor that if something is sexually transmitted - and obviously HIV is not only sexual transmitted, but predominantly - that adds another layer of stigma.
I do clinics every week, and most of my patients have experienced some degree of stigma at some time. It's still there and needs be fought. Stigma continues to prevent people from testing and accessing the treatment and care that will keep them well and stop onward transmission of the virus. Sometimes it's from areas where you would really expect better, like healthcare professionals. I’ve heard of people thinking you need to put two pairs of gloves on and people living with HIV report that healthcare professionals have behaved differently when they knew their status or have had their treatment delayed or refused. It’s shameful that this kind of thing still happens. There's also a mixture of real stigma and perceived stigma. People feel that they're going to be discriminated against or stigmatised, and it's not always the case. Having said that I can't look someone confidently in eye and say they will get nothing but a good reaction if they tell somebody they're HIV-positive, because bad reactions as a result of ignorance, fear or misunderstanding still happen.
Stigma also creates a barrier to testing. I still hear things like “I’d much rather not know”. The fear of it being real, and therefore having to deal with the disclosure and the stigma is a real barrier to testing and accessing care. We sometimes have people who are diagnosed and then just disappear, because they can't bear to come to the HIV clinic, or to tell their family or can't cope with having HIV therapy in their house in case it's found. It impacts not just on people's health, but on their mental health and wellbeing, and their testing and coping behaviours if they're diagnosed HIV-positive. The stigma is false and unfounded - nobody should be blamed for a medical condition.
Despite the so-called 'Prince Harry effect' where he took a HIV test live on Facebook, 4 in 10 HIV diagnoses are late. What more can be done to break down stigma to stop people getting to that stage?
We shouldn't underestimate the 'Prince Harry effect', that was really impressive. There is a really strong correlation, and it’s about normalising testing, between people accessing tests and awareness or publicity. At THT, we recently piloted self-testing where we saw the 'Prince Harry effect'. We got five times the number of tests in the days after that. It really does raise awareness and drive testing. More than that, it has the potential to shift behaviour. It's transient admittedly - it peaks and then it goes down again. More needs to be done to address the 40% that are diagnosed late. The fact that, in this country where we have an advanced healthcare system and an HIV test is relatively inexpensive it is shameful that so many people diagnose late or remain unaware of their HIV status.
So what do we need to do about it? We need to keep battling the stigma, which stops people testing however we offer it. The second thing is, we need the broadest choice of tests possible. So we need clinic-based testing, community testing, rapid results, saliva testing, blood testing, and we need self-testing. We're nearly there - almost any barrier can be addressed with the testing technologies that we've got - but we don't yet do it at scale. Nobody is investing in the number of tests that we really need to make a difference. We need to be doing 100, 200, 300 thousand more tests than we currently do.
We also need to be doing it in places we are not currently testing. There a lot of people who are HIV positive, or who are high risk, who go through A&E or their GP and don’t get offered a test. That may be their only interaction with healthcare until they get really ill from the HIV and then they come to me. There's been national HIV testing guidelines out since 2008, which recommend opt-out HIV testing in general practice and A&E. I don't know any area, even in South London where we have the highest rates of HIV in the country, where that happens in every general practice. We're far behind what we know we should do. At Kings College Hospital we recently started routine HIV testing in our A+E department, thanks to funding from the Elton John AIDS Foundation, which is already proving effective at increasing testing rates and diagnosing previously undiagnosed HIV infection. A similar approach is also in place at Guys and St Thomas’ hospital and it is projects like this that will help us make a significant impact on the HIV epidemic.
With PrEP still not available and cuts to Local Authority budgets for sexual health services, some campaigners are branding this the 'second silence'. This of course references the AIDS epidemic in the 1980s, where there was a huge lack of response as world government's stood silent. Is this something you would agree with?
I generally like hyperbolic statements like 'second silence', because you have to say things like that to make people take notice. I don't think we're quite there yet though, however we can't underestimate the real threat to sexual health and HIV as a result of the budget cuts required by local authorities as a result of a reduction in central funding.
It's now being felt tangibly. Every year we have to save a little bit of money, and every year you can find an efficiency, but now the savings to be made are impacting on staff or clinics or the numbers of tests you can do. Until the last year or two we managed to cope and do things more efficiently, but now services are cutting clinics and reducing staff. SH:24 is a good example of having to switch their service off when a certain number of tests have been ordered. On a daily basis there are often no tests left by the early morning - they're running out that quickly! It's real and it's really hard to see how that won’t have a significant impact on sexual health locally
We can't say that what we need to do to really make an impact on the HIV epidemic is do hundreds of thousands more tests and then mirror that with clinic closures. The impact of clinic closures wouldn't be so harmful if there was investment in more innovative things like self-testing or services like SH:24. There is a scope - you can do it much more cheaply online, you can do it more cheaply if people do the tests themselves. You can mitigate a little bit of the reduction in budgets, but we're not seeing a reduction in budget and a reinvestment somewhere else where you get more bang for your buck. What we're seeing is a cut across the board. It's hard to see how we'll make the improvements we need - and it will only get worse. This year is the first year for the big cuts but there will be more in the future and we need to work collaboratively with commissioners and service providers to work out how to best manage this.
On a slightly more optimistic note! SH:24 is a great example of technology being used in sexual health. We've seen apps like Nurx in the US which prescribes and delivers oral contraception and PrEP to people's homes. How important do you see this technology being in the future of fighting HIV? Could you see apps like this working in the UK and what would need to happen to get to that point?
Technology is vital because certainly in the broader sense, for us at King's, increasing the use of SH:24 has been the way we've managed our budget reductions this year. It may not work so well if investment in sexual health services continues to decrease, but if you want to do as much as you did before, or certainly do as much as you did with the people that really need it, you can't do it the same way as before. You can't do everything in an expensive traditional clinic in a big hospital. You need to do as much as possible online or where the people are in control of it themselves. It’s absolutely the way forward. We're obviously further behind on things like treatment and PrEP at home. I'd like to get PrEP into clinics first but I don't think we'll be able to do everything we need to do without having a significant proportion our work online or via apps.
With HIV being the second biggest killer of young people worldwide after road injuries, and with world governments pledging to end AIDS by 2030, do you think it is possible and how do you see young people playing a role in this?
I do think it’s possible to end HIV transmission by 2030. You would have to successfully diagnose the estimated 36.7 million people worldwide living with HIV and they would all have to be living on effective treatment. In the UK that would mean diagnosing the 13,500 people estimated to be unaware of their infection and putting in place effective HIV prevention strategies for those who are at risk. We're getting closer to almost having the perfect jigsaw of HIV prevention strategies - regular testing, PrEP, treatment as prevention and condoms. Using these with adequate funding, you could pretty much eradicate HIV transmission by 2030. Within a generation it would be gone. There's been many a target which has come and gone - they’re only as good the political will and funding behind them.
Young people, and you could say this about any social issue, are absolutely key to tackling it. We need an energised next generation to sort it out. A generation that aren't bogged down with the stigma, preconceptions and misunderstandings of an older generation who remember the early days. We need young people who have a fresher look at it, who aren't tied to the 80s and 90s and look at it in a 21st century way. A real challenge is how to make it real for them. I think awareness is less than it was. If you grew up in the UK, in the 80s or the 90s you would have been very aware of HIV. There’s something about engaging young people in it as an issue that impacts on them. That’s why Sex and Relationships Education is so vital, and why it should be mandatory in all schools. Those targets won’t just be delivered by the people who set them; the 50 or 60-year-olds sitting in offices at UNAIDS or WHO. They will be achieved by the next generation of people now in their teens and early twenties.
We know that 1 in 6 people living with HIV don't know they're HIV-positive, what advice would you give to someone who has never been tested before or thinks they don't need to bother?
Get a test and know your status. Full stop.
Scott Ideson is a student children's nurse at London South Bank University. He's interested in HIV in a social justice and healthcare context; and is passionate about youth participation and children's rights. He is a member of the Youth Stop AIDS Steering Committee.