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)
You make some very valid arguments - but the reality of the situation in that home testing is already happening with unregulated kits - if individuals are so inclined then they will search out a testing method that best suite them & for some this will be available on the net, no strings attached. Sadly we still live in a world where many people still think that going for an HIV test in a traditional setting will change their ability to get a mortgage or life insurance. In terms of partner pressure to test & am sure this already happens, though not widespread. Also home testing may result in those who are in abusive relationships or unable to negotiate condom use will be able to check their sexual health - this still does not get around the care follow up, but it may help instigate behavioural change & then an acceptance to seek help. I think the argument regarding safety & regulation has been somewhat overshadowed by the view that HIV charities have lobbied for this change & that in some way they will benefit from it, which is not the case as far as I can see.
Thx for commenting. That home testing is already happening is why legalisation is a justified step, as I wrote. But there has been much noise and arguments made about what Home testing will do and how it will work that are unsubstantiated by evidence, which in most cases are lacking, as well as little balance in the reporting about what home testing means and how implementation will be done. This is a very important development that requires public debate and public contribution. ~rjt
Whilst I agree that some of the sound bytes have not been particularly helpful is there a danger that in some respects we can "over think" this change in the Law? I still read comments about outreach testing being risk laden because of lack of safeguards & robust links with care & treatment. We know that for many individuals outreach testing has been extremely valuable & has helped reach many more individuals, so I think it is reasonable to suggest the same will happen with Home Testing. I think there seems to be an assumption that once available authorised kits will somehow become the default testing mechanism, which I am sure will not be the case. Good implementation will be key, but as with all things new there are likely to be some teething problems & I do believe that the various HIV agencies are aware of such difficulties. I guess the Public debate needs or needed to be targeted at the Politicians & the Local Authorities who now have responsibility for sexual health & HIV. NAT & THT have long campaigned for this change so it is not surprising that individuals will look to them for answers to the questions some may have on this policy.
The responsibility of organisations with the mission and scope of THT and NAT cannot stop at lobbying for a change of law that will have an impact on public health. It is their duty to contribute to a governance framework to guide the government in its task. It is also their duty to engage widely and proactively with the public, on this matter.
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