Understanding the scale of the issue
The process of writing the England HIV Action Plan resulted in additional data being analysed by UK Health Security Agency (UKHSA) which, for the first time, shone a spotlight on the significant proportion of people with diagnosed HIV who are not currently in HIV care.
In 2021, 4,444 people were reported to be lost to follow up in England. However, this is only the number of people who haven't attended care in the past 15 months. This has led to a systematic underestimation of the number of people living with HIV not in care, as those lost earlier to this time period are not included in annual reporting.
In 2022, UKHSA undertook a look-back exercise to identify patients lost since 2015 and estimated that this number could be as high as 22,670 people.
UKHSA doesn't report against the UNAIDS definition of 90-90-90 – instead using a metric for the second '90', which is the percentage of people who are in HIV care that are on treatment. Without a focus on the pool of people not engaged in HIV care, we risk undermining the UK's ability to meet the 95-95-95 goals.
What works to re-engage people into care
Elton John AIDS Foundation (EJAF), as part of their SIB project in South London, piloted an intervention to re-engage people in care. They used three models. First, HIV clinics mining their role and directly seeking to re-engage people. Second, opt-out A&E HIV testing. Finally, GPs and community organisations contacting those they work with.
Since the conclusion of the EJAF SIB, UKHSA has provided sexual health clinics with lists of those people not seen for care for more than 15 months. Information on patients who are lost to follow up has also been included in UKHSA’s ‘Specialised Services Quality Dashboard’ – a data set sent to all HIV clinics in England annually about their patients. However, it's clear that not all clinics know that this data is available.
A small number of clinicians in South London have been pushing for action around this area for a number of years but there is only a slowly growing acknowledgment that re-engagement is an issue.
There has been no national funding commitments to take this area of work forward. Other than the 'light' commitments in the HIV Action Plan, there's no significant national commitment to take action on re-engagement.
What needs to happen
There's an urgent need to educate both organisations that work on HIV, and decision makers, on why finding and re-engaging people lost to care is so vital to achieving the 2030 HIV elimination goal.
We also need the UK Government to step up their action and take more robust steps on this issue. Terrence Higgins Trust is providing secretariat to the Retention and Re-engagement Task and Finish Group of the HIV Action Plan’s Implementation Steering Group, with recommendations due to finalised in early 2024.