Originally published at Huffington Post:
In the course of my medical life, I’ve overheard many people ask their friends the question, “Have you had an HIV test?”
“No,” comes the common reply. “I know I should, but I don’t want it on my medical records. It affects your insurance premiums, doesn’t it? And you can only have one if you go to a “special clinic”. You have to have counselling that lasts ages, too – they ask you about the details of your sex life! Besides, I’m not gay and I don’t take drugs, so I’m not at risk..”
I hear all of these excuses over and over again every day at work. What’s most frustrating is that many of these preconceptions were formed 10, 15, 20 years ago, when having an HIV test was essentially about receiving a profoundly life-limiting diagnosis. At that time, pre-test counselling was vital, as we had no treatment to offer. Fast forward twenty years and things have changed dramatically. (And for the record, I want to make one thing absolutely clear: your mortgage and insurance are not affected by simply taking the test!)
Those working in the field know we must make HIV testing just another routine blood test. After all, the benefits of knowing your status now significantly outweigh the “head in the sand” alternative.
Did you know that 95% of women are now tested for HIV during pregnancy? Moreover, when it is made routine, less than 5% of them refuse. What that has meant is that we have prevented thousands of babies from becoming unnecessarily infected, all thanks to a simple blood test which allows us to block transmission from mother to baby. This has been one of the greatest advances in modern medicine.
I worry, though, that GPs sometimes don’t make it clear that there is absolutely no reason why you can’t have an HIV test with them. Every day, people are still referred from their GP and other hospital doctors to GUM and STI clinics, perpetuating the myths of “the special clinic” and “you don’t want that on your records”. We really need to promote HIV testing within general practice as much as we can, to help lead to a normalisation of HIV testing.
But let’s take that one step further: what about an HIV test in the comfort of your own home?
Legal in the US for some time now, the self-test kit has been a focus of some controversy in the UK, and has been illegal for many years. You are, though, allowed to sample your own blood at home, and then send it off to an accredited laboratory (privately, of course). This is a subtle, but important difference.
The reason for these rules are again largely historical, and revolved around several key concerns. Firstly, there was a question about whether an individual can deal with the impact of a positive diagnosis: without the counselling and support services available within a clinical context, the psychological impact of a positive result might be too difficult to deal with. It might even drive people to suicide.
Secondly, there have been issues around the accuracy of older home testing kits. Might they fail to pick up every case, and falsely reassure people who are positive that they are in fact negative? Alternatively, could they achieve the opposite, and create an excess of false positives?
All these questions are of course hugely important, and above all the governance surrounding all forms of HIV testing has to be extremely well controlled. Home testing should only be undertaken using kits that are accredited to a government standard. They must be sensitive enough to pick up the vast majority of infections, and specific enough to avoid “overcalling” positives. They also need to work in populations of varying HIV prevalence.
Finally, competent and accessible support services must be available for those individuals using home kits.
But despite the logistical and regulatory minefield, I would argue that we need the option of home testing. What we are currently doing simply isn’t working!
I believe we are world class at treating people with HIV and providing excellent care – but we are failing those people who remain blissfully unaware that they are infected until they become so unwell that it might already be too late for them.
One in four of those with HIV in the UK do not know they are infected. That means they can’t access life-saving treatment, and may well be unknowingly passing on the infection to others. The only way to find out your status, to get on medication and to stay healthy is to take the simple blood test which can detect HIV. I am sick of seeing people attend our hospital and dying unnecessary deaths because, despite having accessed many medical services during their illness, they were not offered a test, and were diagnosed with HIV too late.
Would home testing make a difference? Would a home test encourage people who wouldn’t otherwise access services to take the test? And what about all those concerns about accuracy and psychological distress? Well, we know from US surveys 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. We also know from surveys in the Netherlands that people can administer and react to self-testing kits appropriately.
If home testing can diagnose people who are scared to take the test in any other way, that has to be a good thing. We need to ensure that regulations are in place, that cowboy companies don’t sell tests which don’t work, and we need to know that the people providing the tests are reputable, reliable and have the back-up services available – ideally free and within the NHS. But the Government also needs to bring down rates of undiagnosed HIV, and home testing must be another way of trying to access the hard-to-reach populations who need it most.
Indeed, the Government’s recent acceptance of Lord Fowler’s recommendation that HIV self-testing kits should be made legal is promising – and we applaud the work of the National AIDS Trust and the Terrence Higgins Trust in lobbying for changes in the law.
Home testing has to be done right, certainly. But 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.
Further information on HIV testing including discussion on the “window period” can be found at www.savinglivesuk.com .