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Leaving it late: why are people still dying from HIV in the UK? 

Posted by: , Posted on: - Categories: Reducing preventable deaths, Sexual health


December 1st, World AIDS Day, is a time to reflect and to remember all those whose lives have been lost or blighted by the virus.   Once upon a time, only thirty years ago, almost everyone with HIV infection died. Today in the UK almost everyone with HIV infection lives.

Technical and clinical advances have revolutionised treatment and for those who are diagnosed in time and who can access treatment, outcomes are amongst the best in the world.

No one should now die from HIV infection.  Yet the deaths of 530 people with HIV were recorded in 2013 – more than 10 people a week – most of whom were diagnosed late in the course of their infection.

So why is this happening?  In the UK 26,000 people (24%) of the estimated 107,000 people living with HIV in the UK are unaware of their infection. And those who are unaware may only be diagnosed once their infection is advanced and they have become ill.  In today’s era of effective therapy this is a tragic and unacceptable waste of life and health and a cause of unnecessary harm.

People whose HIV infection is diagnosed late have a ten-fold increased risk of dying within the first year of diagnosis compared to those diagnosed early. And it’s estimated that someone who is diagnosed very late with HIV has a life expectancy at least 10 years shorter than someone who starts treatment earlier.

And undiagnosed HIV has an impact on the wider public health. People who don’t know they are HIV positive are at greater risk of passing the virus on to others through unprotected sex as they are not on appropriate therapy and also because they are more likely to have unprotected sex compared with people who know they are HIV positive.

In 2013 almost half (42%) of all new HIV diagnoses were made late, an improvement on the 57% of a decade ago, but nowhere near good enough.

Once diagnosed, almost everybody with HIV in the UK is linked to and retained in excellent clinical care. Regardless of age, gender, ethnicity, sexual orientation and residence, 98% of people newly diagnosed in 2013 were linked to HIV care within three months of diagnosis.

The annual retention rate and treatment coverage among all adults seen for HIV care was 95% and 90% percent of all adults receiving antiretroviral therapy were virally suppressed.

But what do we need to do to tackle late diagnosis?  Closing the gap and doing a better job means getting things right both nationally and locally. The late HIV diagnosis indicator in the Public Health Outcomes Framework is an important measure against which local areas can assess progress. To move this indicator requires action across the board to improve knowledge, reduce stigma and increase both the offer and the uptake of HIV testing.

Implementing existing national HIV testing guidelines is crucial. This means expanding HIV testing beyond specialised sexual health services to people admitted to general hospital wards and new registrants to general practice in areas with high rates of HIV.

We know this is not happening consistently. There is ample evidence of missed diagnostic opportunities: UK audit data in 2010 showed that a quarter of those with newly diagnosed HIV had been seen in a clinical setting in the previous 12 months where an opportunity for earlier diagnosis had been missed.  Gaps exist in testing coverage in Genitourinary Medicine services, particularly amongst heterosexual attendees.

Increasing the ways in which people can get an HIV test, including new technologies such as self sampling and on line access, can help.

PHE in partnership with NHS clinics and the voluntary sector has implemented innovative self-sampling programmes which have been effective in increasing testing amongst some of the most at risk communities.

And tackling the stigma that is still associated with HIV is critical if more people are to choose to take a test. It’s one of the key reasons that people don’t test for HIV, linking it to late diagnosis, ill health and potentially death.

Despite progressive anti-discrimination laws in the UK, people living with HIV continue to face stigma. PHE is supporting the development and roll out of the 2015 STIGMA INDEX among people living with HIV in the UK, a programme to both document and tackle HIV associated stigma.

If the existing excellent clinical outcomes for HIV in the UK are to be not just maintained but also improved then the “testing gap” that results in late diagnosis must be closed.  This is the crucial intervention to ensure that all those whose lives could be saved and whose ill health averted have access to care.

Across the board prioritisation of HIV locally and nationally is critically important if this is to happen.  The responsibility for commissioning HIV testing is shared by local authorities, NHS England and CCGs, depending on where testing happens.

The budgets and responsibility for sexual health services are with local authorities, whilst HIV treatment and care for those diagnosed positive is commissioned as a national specialist service by NHS England.  This means that meticulous joint working between all those with responsibilities for the HIV and sexual health pathways is needed for success.

We need to talk clearly about HIV and how people with HIV can live healthy, fulfilling and long lives. By doing so we will be making a powerful contribution to reducing stigma and to building better foundations for HIV prevention.

On World AIDS day 2014, as we remember those whose lives have been claimed by HIV, we have the knowledge and the tools to make death due to HIV a thing of the past.  It’s up to us all to make it a reality.

Photo by World Bank Photo Collection. Used under Flickr Creative Commons.

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  1. Comment by Bren posted on

    Hello Jane,

    Thanks for a great blog and it was very interesting to read.

    Do you think that people and families who are impacted from HIV are, should they wish to, more involved in developing the implementation strategies, and monitor its impact too.

    I also think there is still a huge trust aspect to this and I think the self test kits are helpful in promoting safe and secure places to test.

    I would agree on the meticulous joint working around what it is we commission, and providers joining up as well as commissioners.

    Best wishes and thanks again for a really great blog,


  2. Comment by Inoutlabs posted on

    Thanks for sharing the blog.Interesting blog

  3. Comment by John RM posted on

    It's a nice written article. In my opinion, the prevention
    of HIV infection is as important as early diagnosis.
    The use of condoms can drastically reduce the cases
    of HIV in UK population. However, the implementation of this simple
    step is very often ignored by people involved in sexual activities.

  4. Comment by kevin posted on

    I have a weakened immune system with other complications; I am fighting this illness because of being given bad blood , my advice to anyone is please safe sex and use a condom and no unprotected sex with another who is hiv as they may have a different strain to yours which would make their medication become resistant and if you are not hiv then stay that why as it's not just hiv it's what it does to your body that can't be repaired main one is weight lose mainly your face; poss cronic diarrhea which leaves you dehydrated and weak. It's not romantic being hiv symptomatic but a battle. So be careful.