How the Elton John AIDS Foundation Zero HIV Social Impact Bond programme is working to normalise HIV testing in hospital emergency departments and primary care.

By Steve Hindle, Social Impact Bond Performance Manager, Elton John AIDS Foundation.

We want to normalise the practice of HIV testing across all healthcare settings, and for that to happen a wide range of healthcare staff need to be informed and confident to talk about HIV.  The narrative needs to change from ‘would you like an HIV test?’  to ‘we do HIV tests here unless you tell us not to’ in both primary care and Emergency Departments.  This means that when blood is taken in an Emergency Department, people are automatically tested for HIV amongst a range of other tests.

One of the best ways the Elton John AIDS Foundation Zero HIV Social Impact Bond (SIB) programme has found to reassure healthcare professionals and commissioners that patients find HIV testing acceptable, is to tell the stories of those who have been diagnosed with HIV, and how they have been grateful that testing was done. Here are the experiences of two people who believed they were at no risk of HIV but were newly diagnosed through SIB funded interventions.

Emergency Department HIV Testing: a woman in her late 50’s who had no idea that she might be HIV positive told us:

No! I didn’t think it would be me (who had HIV). When they asked me if I was OK to have a test I said ‘Go ahead, I ain’t got it!’

It was a shock to her hearing the diagnosis: “I was numb…it slowly sunk in”, but after a while she said that “I’m glad the test was done”.

She had been offered a test in the past but she had declined due to fear and thinking “I can’t have that” due to her age.   

Because of her diagnosis through routine testing her partner was also diagnosed HIV positive, and her belief is that HIV testing “saved our lives”.

Her experience of the treatment was “Absolutely fantastic! Before the treatment I didn’t realise how ill I felt.  I feel a lot healthier than I did.  Before, I just wanted to curl up in a ball and die in peace.”

Her message to people who think they are not at risk when offered an HIV test:

“I would say have the test whether you think you’ve got it or not – go for it straight away.”

A man in his 60s tells us his story of finding out his HIV diagnosis through HIV testing in primary care with his GP:

“Having moved home, I decided to change my GP. I was invited to a routine welcome check up. At the end of the check up, the nurse asked me if I wanted to take an HIV test. I was not in a hurry, so I thought “why not”. I was actually putting my coat on to leave the surgery when I was given the bad news, it was positive! Please remember it was just a routine “medical” changing to a new GP, and I didn’t visit because I was feeling sick. Had I not changed to a new GP, or I had been in a hurry that day, it may have taken a large chunk of my life away.

His message to health care professionals is:

Push the testing. Although there is currently no cure, it can be totally eradicated by getting HIV positive people on treatment. Tell them my story, encouragement will save lives and unnecessary suffering.

These experiences show that people who have been diagnosed, even though they thought they were not at risk, champion the benefits of HIV testing. They encourage professionals to test people, and for people to take the test whenever offered.

Our goal is for HIV testing to become a routine part of healthcare

We want the process of HIV testing to become a part of normal healthcare, just like checking for high cholesterol or diabetes, with patients feeling confident to take the tests, free from any stigma.

The Elton John AIDS Foundation SIB  opt out testing for HIV in Emergency Departments in two Southeast London Hospitals and primary care has proven to be very effective in identifying and newly diagnosing people with HIV. Since the SIB programme started in October 2018, over 100 people have been newly diagnosed with HIV through ED testing, and over 20 people have been newly diagnosed in primary care.  Many of these people were unaware that they were at any risk of HIV, such as the people in the above stories, and would not have sought HIV testing in any other setting.  The SIB data shows that ED testing is particularly good in engaging some communities, such as the Black African community in HIV testing, who potentially would not normally engage.

Regular testing is a key part of avoiding late diagnoses, where a person’s immune system is severely compromised. It is also a way that people who have stopped treatment can be reengaged to start treatment again – during the SIB 47 people have been reengaged into care through HIV testing in EDs.  Bringing people into treatment means that they no longer have a risk of transmitting HIV to others, which is a key part of meeting the 2030 target of no new HIV transmissions in the UK.

What do we want to see?

PHE estimate that there are over 6,600 people in the UK still unaware that they are living with HIV.  HIV testing in EDs and primary care is a crucial part of the answer to finding these people, particularly those that would not seek other services where testing was offered, and offering them the care that they need, as are the continued efforts to normalise HIV testing and remove the stigma of HIV from public and healthcare perceptions.

We call upon the government to ensure that HIV testing in EDs and primary care in areas of high and very high HIV incidence is included within the National HIV Action Plan.