On the fence: HIV home testing

Public Health Minister Anna Soubry is expected to announce that home testing for HIV will no longer be illegal. This decision signals the end of a ban on the sale of HIV testing kits put in place in 1992. It is hoped that making the sale of home testing kits legal will contribute to identify those undiagnosed infections which are one of the driving force behind the HIV epidemic in the UK.

The rational to lift the ban seems to be twofold. First it will offer another option for people to get tested; second, it will address issues of stigma surrounding attendance to a specialist clinic (GUM).

Everything that can improve the early detection of HIV infections should be welcome; however, there are important strategic aspects and questions to consider when it comes to home testing for HIV.

There is little data about the acceptability and the effectiveness of HIV home testing to improve HIV case-finding. Finding the approach acceptable is different from using the approach. In a presentation given at BHIVA in the spring 2012, Dr Emilie Elliot of Chelsea and Westminster Hospital NHS Trust in partnership with a gay dating website showed that out of 4,500 people invited to take the test, only 132 requested it, 73 returned it and 4 new infections were diagnosed. A 2011 study conducted in Brighton amongst MSM (which represent half of the new diagnoses in the UK) showed that views about using home sampling kits were mixed and clinic attendance was preferred if symptomatic. A number of study have been conducted in North America and for example a recent Canadian study conducted by the Ontario HIV Treatment Network Rapid Response Service revealed concerns amongst gay men about the lack of immediate professional support in the event of a positive test result, the perceived uncertainty about its accuracy, the incongruence with a sexual situation, and the associated costs of the test (postal tests are currently available free in the UK through GMFA and THT). A systematic survey published in PLoS Medicine in April 2013 concluded that “though unsupervised testing strategies were highly acceptable, no studies evaluated post-test linkage with counselling and treatment outcomes”.

Two fundamental aspects of home testing are psychological support and linkage to care should the test return a positive result. Linkage to care is the critical step for the management of HIV. Current data shows that 20-30% of people diagnosed with HIV in existing settings are not entering care and continue to contribute to the spread of the epidemics. Anna Soubry is quoted to say that “The stigma and fear surrounding HIV may mean that some people are afraid or reluctant to go to a clinic to be tested.” If for some people stigma can be an obstacle to testing in a clinical context, how home testing is going to address that same stigma when the newly diagnosed will have to go a clinic or just seek post-testing counselling?

Then there is this this odd comforting reassurance and belief that people will prefer to test “in the comfort of their home” implying that GUM clinics are some sort of inhospitable venues where people would be submitted to some unspoken distress. True, not all clinics are on a par with 56 Dean Street and Burrell Street clinics in London, rightly dubbed “boutique clinic”, with magazine, Wi-Fi and free coffee, but when was comfort in a clinical setting an issue specific to sexual health? It is not as if HIV was new or out of the ordinary especially among the vulnerable populations who know they are at risk. It seems there are a lot of assumptions as to why people attend or not a GUM clinic and that these assumptions are turned into believes that dictate policy. Users all know why they are there for, and that is not necessarily for an HIV test. Such attitude is only reinforcing if not generating stigma around GUM clinics and their use and in that regard home testing is not going to do anything to address the stigma around HIV and sexual health.

But there is also a risk for all sorts of abuses and misuses. For example enforced testing between partners are a reality as potential users have admitted wanting to test their partners. It is great if partners jointly decide to take a test (which they could already do in a a variety of clinical and non-clinical settings and are encouraged to do by prevention campaigners) but the risk of coerced or unsuspected testing is real and needs to be measured and mitigated.

As for misused, incorrectly used the test could return the wrong results, positive or negative, especially when some of the current tests are still limited by a 3-months window period making them unable to detect those early infections that contribute disproportionally to new infections (THT home test has a 4-weeks window period). It would be easy to misunderstand the meaning of this window period and that any result, positive and negative, should be at best repeated or better confirmed by more sensitive tests.

Lisa Powers from THT somewhat emphasised that “People deserve to have a choice about how and where they test for HIV” but there is already a broad range of options available for those who want to be tested, beside should the issue be about the choice of the where and when or rather about free and safe access to reliable and accompanied testing?

“Legalisation is an important step to ensure that the tests available are accurate, safe and appropriately regulated” said Deborah Jack, chief executive of the National AIDS Trust but will legalisation address the issues raised above and will it be enough without the appropriate support required to ensure that people are not coerced into testing or left on their own after testing positive; there is little said about what this support will be.

Concluding their systematic review of the research available in 2013, Pant et al. suggested that “more data from diverse settings and preferably from controlled randomized trials must be collected before any initiatives for global scale-up of self-testing for HIV infection are implemented.” This mirrors a 2008 NAT position paper but seems to be lacking (THT is welcome to present the results of their “highly successful home sampling scheme”).

If truly “Anything that encourages these people to test, take control of their health and get treatment is a welcome advance” such advance will have to go far beyond the legal fix offered by making home testing legal and the organisations working for the prevention of HIV need to prepare a convincing and comprehensive package that must accompany the distribution of home testing kits.

(Read a follow up post)

~rjt