Talking about home testing for HIV

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HIV self-test forum

HIV : do-it-yourself home-testing kits hit the market for the first time

PEBL Feedback has launched a new site for people to share anonymously their experiences of the HIV home-test and create an open and frank exchange of views about this newly available technology.

PEBL Feedback is a social enterprise specialising in anonymous web-based story-telling, exchange and discussion. They have been commissioned by BioSureUK. the company behind the the first HIV self-test kits to hit the open market.

According to official estimates, there are more than 25,000 people in the UK who are currently unaware that they are HIV positive. From a Public Health point of view, this is not a good position for the country to be in. Because people who don’t know that they are infected with the virus probably won’t be taking special steps to avoid passing it on to other people. And they won’t be receiving any treatment.

Until now, the only way of finding out HIV status was to give a sample of blood or saliva a surgery or clinic and have it tested in a laboratory. A negative result would normally result in a useful moment for clinical staff to give some health promotion and protection advice. A positive result leads to the offer of a treatment programme, and steps towards minimising the risk of the patient passing on the virus to other people. All that is possible because the person taking the test is a patient, having the test done in a medical context. But that has just changed. You can now get a DIY test to do at home. Whenever you like. Telling or not telling whoever you decide.

After a turnaround in UK government policy in 2014, the first “do-it-yourself” home testing kits for HIV are now available to buy on the internet. For about £30 the customer receives a product which is not dissimilar from the now ubiquitous home pregnancy testing kit. Rather than using urine, however, the kit contains a simple to operate one-use sampling gadget which painlessly produces a tiny drop of blood from your thumb. After that the sample is fitted together with the testing tube which is about the size of a ballpoint pen. It’s then a simple question of waiting and observing the ‘rings’ which appear. One ring to show that the test is working and a second one (or not) to indicate that the sample is HIV positive (or not). No-one apart from the buyer/user knows that the test has even taken place, let alone what the result is.

And it is that last aspect of the process that is continuing to be controversial in HIV and Public Health circles. On the one hand there is the argument that personal knowledge is the single most important factor in prevention. Without knowledge of HIV status no-one can take control of their life, make decisions about seeking treatment and choices about taking care of others. This point of view implies that all testing is valuable and that anonymous/secret self-testing is a useful and ethical addition to the overall picture. Not only do people have the right to know their HIV status, they also have a right to choose how they obtain that knowledge and also how they manage it.

There is another point of view, though. And that is that it is unethical to expose people to the risk of receiving (indeed producing) frightening, highly significant, life-changing news without support, counselling and the offer of a treatment plan. People could react and respond in all kinds of different ways if they get a positive result. What will they make of their new HIV status? Will they quickly seek treatment? – or will they tend towards ‘putting their heads in the sand’? Might a positive result, obtained alone and in private, create the risk of depression, anxiety and suicidal thoughts? This side of the argument stresses that for a test to be truly successful it needs to result in a patient joining a treatment programme and also taking onboard a responsibility in terms of protecting others. Offering the knowledge with only voluntary, self-motivated post-test counselling and support looks less appealing from this perspective.

An anonymous discussion and ideas exchange website is now open to facilitate and encourage people to share their experiences and views of the test kit. This open/independent forum is being run by PEBL Feedback a social enterprise who have been commissioned by the company bringing the first HIV self-test kits to the open market – BioSureUK.

By Charlie Davison (Trustee of PEBL Feedback CIC.)