This post originally appeared on the Huffington Post.
The Huffington Post last week reported what many would at first glance assume to be excellent news: “For the first time, a legally approved HIV self-testing kit is available to buy in the UK. The BioSURE HIV Self Test will enable people to test themselves when and where they like, with a 99.7% accuracy rate.”
On the same day, and over at the BBC, however, Dr Rosemary Gillespie, chief executive at Terrence Higgins Trust, offered a more nuanced reading of the situation: “We campaigned for a long time to secure the legalisation of HIV self-test kits which happened in April 2014, so it is great to see the first self-test kits being approved. However, it is important to make sure people can get quick access to support when they get their result.”
Home testing for HIV has long been a source of controversy amongst those of us active in the diagnosis and treatment of HIV. There have long been significant and valid concerns that simply popping a testing kit in the post to an individual who may be vulnerable – and a positive HIV result can make anyone feel worried, to say the least – is not providing the support and care for which UK HIV clinics have rightly become world-renowned.
But first, the science bit: the kit, priced at £29.95, works by detecting antibodies – proteins that are made by the body in response to the virus – from in this case a small drop of blood (achieved by pricking a finger and applying it to the testing device). The kit can provide results within 15 minutes. It’s important to note that the kit can only accurately test for antibodies against the virus once they have been produced, and this can take 2-3 months after the time of infection.
Therefore, a negative result may be falsely reassuring if an individual was exposed more recently. So the claims of greater than 99.7% accuracy do have some important time-related caveats. If you are worried about a very recent exposure it’s better and cheaper to take get some professional advice from your local sexual health clinic. Indeed, HIV testing is a complex beast – and that’s one reason that home testing has its opponents.
I’ve written about these issues before. More than two years ago, I wrote in this space that, “people are still transmitting HIV and dying, and any new tool to prevent that has to be good. As doctors, we have to realise we’re not the only ones who can conduct a blood test, and that wider HIV testing of all kinds will save lives.” Nevertheless, the introduction of home testing kits – at last! – must be the moment we pay very close attention indeed to the concerns that revolve around their use … and ensure that we offer the best possible support to anyone who may use them.
The evidence I provided in my previous blog about home testing still stands: surveys in the US demonstrated that a third of people who have never been tested would consider using home testing kits, and would do so within 12 months of their being made available; surveys in the Netherlands showed that people can administer and react to self-testing kits appropriately. Not only that, but 32% of those taking advantage of home sampling with Terrence Higgins Trust had never tested for HIV before.
It’s important to point out about the latter example that sampling isn’t testing – rather, prior to the introduction of home testing kits, what was legal in the UK was the taking samples of blood at home, which were then sent off to a laboratory to be tested – but those figures still speak to the relative eagerness of many to conduct procedures in the safety and privacy of their own home. When one in four of those living with HIV in the UK still do not know they are infected – meaning they cannot access life-saving treatment and may be passing the infection on to others – we have to grasp every tool at our disposal to increase diagnosis rates. Home testing is undoubtedly one of them.
What are the concerns that tell against this apparently irrefutable logic, then? Well, they are important and demand very careful consideration – and continued vigilance on the part of service providers and manufacturers alike. False positives can occur in HIV testing, for instance – your first positive result is never your definitive one. Referring the users of home testing kits directly to local services is therefore crucial: they will require further testing, and they will almost certainly require additional support.
Indeed, the help provided by clinics is very much more than simply clinical. Dealing with the anxieties of people testing and then the psychological reactions of receiving positive or negative tests is what Health Advisors in Sexual Health clinics do best. Professional support administered well at this emotional time is crucial to the effective linkage into treatment and care programs, as well as effective partner notification programs. (Again something the UK does exceptionally well)
The absence of these sorts of services immediately following a positive result is of course a cause for concern – although patients failing fully to access support services is nothing new or exclusive to the home testing kit.
The legalisation of home testing has followed a hugely involved period of debate and consultation which has taken all of these concerns fully into account. The associated regulation will ensure that cowboy manufacturers cannot have access to the market; and the tests do indeed point those who receive a positive test towards the appropriate medical services (you can see what a used test, and the associated instructions, looks like here – our clinical colleague Dr Iain Reeves has filmed himself taking a home test of his own). That is: the home testing kit is a viable, and reliable, option for those individuals who would prefer to take their test in this way.
The most dangerous type of HIV in the UK – contra Nigel Farage – is undiagnosed HIV. Anything, then, that can reduce the number of people living unknowingly with HIV in our country has to be a good thing. As long as there are clear pathways to support and care embedded within the home testing process, we should all support what could well be an important weapon in our continuing fight against onwards transmission of HIV.