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Making HIV testing part of how we care for ourselves

HIV remains a major source of harm to people’s health, much of which is avoidable.  There are more HIV tests being performed in England than at any time in the three decades we’ve been battling this virus. That’s welcome, but we still have a long way to go, as the numbers in our latest report on HIV in the United Kingdom make clear.

There are still nearly 22,000 people in the UK who are living with HIV but who are unaware of their infection. Again, the trend is in the right direction: undiagnosed infection accounted for 22% of all those who are HIV positive in 2012, down from 25% in 2011. But this decrease must be accelerated: for those people who remain undiagnosed, a positive trend doesn’t alter the fact that they can’t start the treatment they need and may be putting their partners at risk, as well as their own health.

It’s the ambition of National HIV Testing Week, which ran last week and which PHE supported, to drive home this core message: we need earlier and more frequent testing.

Late diagnosis is a tragic waste of life and health, and a cause of unnecessary harm in an era of effective treatment.  People who are diagnosed late (with a “CD4 count” less than 350) have a ten-fold increased risk of dying within the first year of diagnosis compared to those diagnosed promptly. A late diagnosis also means someone has been living with an undiagnosed HIV infection for at least three to four years, and potentially transmitting it to others.

So earlier testing is crucial as is more frequent testing in those groups who are most at risk: we estimate that one in 20 men who have sex with men, and one in 25 Black-African men and women, were living with HIV in 2012. When about one fifth are undiagnosed that represents a huge burden of avoidable suffering.

There’s obviously an individual dimension to this. In England, almost everyone who tests, and discovers he or she is HIV positive, is quickly directed to the care and treatment that they need – and crucially is still receiving that care a year later. Our track record on this is among the best in the world. And access to drugs to treat HIV has transformed the life prospects of people with HIV infection so that they can expect near-normal life expectancy – something that would have been unimaginable twenty years ago.

The public health dimension of this is potentially just as revolutionary. Treatment holds out the hope of interrupting transmission of HIV because it can reduce the viral load in an individual to the point where the risk of transmitting their infection is extremely low. In fact, an estimated 48% of the entire HIV population had an undetectable viral load in 2011. Interrupting transmission is the best way to stop this preventable epidemic of infection.

But on-going transmission is still happening to a worrying degree: our figures suggest that there are 2,300 to 2,500 new infections annually among men who have sex with men. We believe that the continuing numbers of newly acquired infections cannot be checked by widespread and effective treatment alone, because many new infections stem from individuals who don’t know they are HIV positive. The majority of HIV positive people who are infectious do not know about their infection. The only way this changes is if many more people are tested.

We know this is challenging. A sobering audit that PHE scientists published recently found that testing was not nearly as widespread as it should be. Fewer than half of general practices and hospital departments in areas of high rates of HIV were routinely testing people for HIV, despite testing guidelines that recommend this.

There are, however, good reasons to believe that together we can help to change this. After all, HIV testing has become routine in ante-natal screening, so we know that there are effective ways of reducing the fears and stigma around this test, and that expanding it is feasible.

We’ve also got evidence that supports the ambition that HIV testing can become part of good routine clinical care, and doesn’t have to be confined to sexual health and ante-natal clinics. In eight pilots across primary care, hospitals and community services, routine HIV testing was found to be feasible, acceptable (to both patients and health professionals) and effective (in that it yielded a certain number of positive results).

We need to build on this momentum by understanding more clearly what stands in the way of expanded testing and working with others to remove these obstacles. It’s likely that it will require action on a number of fronts. Support for clinicians is key, and there’s some evidence to suggest that extra training in sexual health clinical skills as well as resources for GPs and practice nurses can increase testing rates in general practice.

And of course we need to do everything we can to support those who need and want to test by making it as accessible as possible. This will mean different things to different people. The important thing is that, where possible, testing is responsive to what people want. For instance, for people who would rather stay at home, there’s a home sampling service, which PHE is supporting. Full home testing will become legal from April next year.

No doubt there are other challenges. For instance, our new public health system has to ensure that local leaders and commissioners work effectively together to commission the most effective testing services. Part of our role at Public Health England is to make sure we can provide the best evidence of what works in ways that are relevant and help to inform these local decisions.

But perhaps the biggest change we need is cultural, so that HIV testing becomes a part of how we care for ourselves, how we protect our health and that of others. We all have a part to play in that.

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  1. Comment by Justine Greenwood posted on

    What a great article to illustrate the importance of increasing screening uptake. GPs and sexual health clinics are mentioned and I can't help but feel that pharmacy is left out! We are easily accessible within our communities and could have much impact on screening rates! If not carrying out the screening ourselves, by working together to promote and signpost for early testing we can hopefully help achieve the aims.

  2. Comment by Bren posted on

    Hello Paul, this is a really good and forward thinking article. I think it parallels the NICE Guidance on increasing the uptake of testing in men who have sex with men, and the NICE guidance on increasing the uptake of testing in Black Africans. I also think of the many strands community groups, places of safety to test, impact of the training given, and the cultural attitudes. I also think there is also the need to look at support, and where best to get this support once tested is crucial.
    All said, a great article and it highlights areas that we have move forward on, and areas to continue with too.

  3. Comment by Amdani Juma posted on

    African Community Based Organisations must be enabled to participate in the UK wide efforts to end HIV undiagnosed problems. These organisations have proven tgeir leadership in the previous years. Public Health England can achieve more in collaboration with communities of interests.