World AIDS Day: Reflecting on HIV testing

So where are we on testing? Today we have a range of HIV tests that are able to identify the virus early and accurately, using a range of biological samples, with the results being available immediately or after a brief period.

Remember the terrifying AIDS ads of the mid-1980s? Those apocalyptic images of tombstones and the doom-laden voiceover, telling us that AIDS was a death sentence? I was just a teenager then and clearly remember all the fear, the uncertainty, the anger, and the loss that was, and continues to be, so much a part of this devastating pandemic.

But I also remember the powerful images of community advocates, demanding an urgent response from governments, clinicians, researchers and their communities. These images had a profound effect on me, and so many of my generation. Somehow, everything was going to change, and nothing would be the same.

Fast-forward a couple of decades and the campaign messages couldn't be more different: "Take Charge. Take The Test". "It Starts With Me". "Do One Thing, Change Everything". These are messages of hope and of power. They're messages about how to live with HIV, instead of dying of AIDS - and that's down to the revolutionary drugs that mean people with HIV can expect to live nearly as long as they would have done without HIV.

Of course, I don't want to suggest that living with HIV isn't hard. It is. The drugs are not perfect, many have side-effects and too many people still face unacceptable stigma. But there's no question that the course of this dreadful disease has been transformed by better treatment, more effective prevention, with concerted action and leadership by communities across the globe.

This is why we commemorate World AIDS Day every year, to remember those we have loved and lost, to celebrate all the advances and progress that we have made against this disease, and to advocate for greater and more effective action.

It's a sign of how far we've come that experts now talk about "the end of AIDS". There's a big if: it depends on getting tested in the first place, because if someone doesn't know they have HIV, they can't access treatment and they can't protect their partners.

So where are we on testing? Today we have a range of HIV tests that are able to identify the virus early and accurately, using a range of biological samples, with the results being available immediately or after a brief period. This has revolutionised access to HIV testing, with tests now available in a range of clinical settings, within the community, and increasingly over-the-counter in some countries.

In England, we have had some notable successes in expanding HIV testing, with an increase in the numbers of tests carried out in genito-urinary services, and more testing being offered by the voluntary and community sector, to reach those in greatest need.

But there's still much more to do. First, we need to ensure that HIV testing becomes more routine, especially in clinical and community settings with high levels of the disease, for example in London and many of our large urban centres in England.

Second, too many people are still receiving their HIV diagnosis late in the course of their disease. This can complicate their treatment, prognosis, and their ability to benefit from a wide range of clinical and social support. Every late diagnosis is a missed opportunity to start treatment early. In fact, it's literally a waste of life: a loss of up to 15 years if starting antiretroviral therapy later than guidelines suggest. Over the last decade, 81% of AIDS-related deaths in England and Wales were attributable to late diagnosis.

Failure to make HIV testing more widely available, accessible and affordable also frustrates our efforts to prevent the virus from spreading, as there is now strong evidence that the drugs used to treat HIV can reduce the risk of transmitting HIV as well.

The truth is that we can and should do a much better job of encouraging people to get tested and of getting clinicians to offer the test. We, at Public Health England, calculate that just over one in five people living with HIV still don't know their status. That puts their health at risk and the health of others as well, because more than half of all HIV transmission is from people who remain undiagnosed.

So, what can we do to improve testing rates in England, especially in particularly vulnerable communities, such as men who have sex with men and Black-African men and women?

The first step is to make sure we understand why people don't HIV test. Research in the US in men who have sex with men found there were two major reasons: they thought they were at low risk for HIV infection and/or they were afraid of finding out they were infected with HIV. This reflects findings among gay men and others here in England, as well as other factors, such as the stigma of HIV testing or of being diagnosed HIV positive, which have also been described.

So there's either too much fear - and our job is to reassure people that testing is helpful, not harmful; or there's not enough fear - and our job is to tackle the misperception that HIV is yesterday's problem. Getting the balance right is critical. I think there's a role for effective health marketing campaigns, as well as initiatives, like last week's National HIV Testing Week, which keeps testing in the limelight.

Our other major priority has to be to get the tests out to whoever wants or needs them, in whatever way suits them: through the GP, or via self-sampling at home, as well as in sexual health services.

The commemoration of World AIDS Day provides us with opportunities to keep the focus on HIV, address stigma, and promote awareness and action on HIV prevention. We need to ensure that the current generation, and every successive generation, understand the seriousness of this disease and the importance of HIV prevention, testing and effective treatment in helping to bring this epidemic to an end.

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