- HIV IC Guided testing was proposed in UK BASHH/BHIVA/BIA HIV Testing Guidelines in 2008 and European guidelines were first published in 2014.
- HIV ICs tend to be associated with more advanced symptomatic HIV infection, and therefore with late diagnosis.
- In Scotland in 2024, 21% of individuals newly diagnosed with HIV were diagnosed late – that is with a CD4 count <350/mm3.
- Very late diagnosis (defined as a CD4 <200/mm3, but frequently associated with much lower CD4 count and symptomatic disease) has commonly been associated on clinical review in Scotland with more than one HIV IC presentation.
- HIV IC testing has particular value in that it avoids any element of risk assessment based on behaviours, demographics or subjective judgements. It is helpful in diagnosing people who are not typically regarded as ‘at risk’ of living with undiagnosed HIV.
- For this reason, testing for IC should be implemented without regard for demographic factors (except in some cases, older age).
- However, it should be noted that only a minority of people living with undiagnosed HIV who attend primary or acute care settings will have an IC – it is therefore just one component of a testing strategy.
Data on late diagnosis for Scotland are limited by the small total number of new HIV diagnoses (126 in 2023 and 125 in 2024). In 2024, 26 (21%) of 125 first ever diagnoses were made at a late stage of infection, nearly two thirds of which were at a very late stage (62%, 16/26), that is with advanced HIV disease (CD4 count <200/mm3). In 20234, adults diagnosed late with HIV in England were ten times more likely to die within a year of diagnosis compared to adults diagnosed promptly. In 2024 in England, of adult Black African heterosexuals newly diagnosed with HIV, half were diagnosed late (285 of 572) compared to under a third of gay and bisexual men (190 of 642), illustrating the intersection of factors including minoritisation and stigma that affect testing offer and uptake. In a UK review5 of 164 very late diagnoses in 2024/25, there was a missed opportunity for testing in the two years prior to diagnosis in 44% of cases (72 people). Similarly, of people diagnosed through the ED opt-out testing programme in England, half were diagnosed late. Testing in acute settings and in those who are seeking care for other issues is associated with identifying a larger proportion of people with advanced HIV than testing in sexual health services, which is the site of the majority of testing across the UK. This situation persists despite recent efforts to expand testing and including the impact of ED Testing Opt-out testing in England.
A review of late and non-late diagnoses in Scotland 2018-22 (Wilkinson et al, unpublished) showed that although around 25% of people diagnosed with HIV had been admitted to hospital in the 2 months-5 years prior to diagnosis, only around 5% had been diagnosed with an IC. It is likely that in future, some of these will be identified by ED opt-out testing. The incidence of IC presentations in primary care is difficult to determine. In a large UK case-controlled study2, 21% of people diagnosed with HIV had one IC, and 5% had two ICs in the year before diagnosis. In the recent review5 of very late diagnosis in the UK, the first reported missed opportunity for earlier testing was within General Practice for two thirds of people (68%, 49/72), of which a high proportion were presentations with indicator conditions. Other key studies have included primary care diagnoses3. It is clear that IC testing in settings outside acute hospitals, in particular in primary care, is critical to success.
The current (2020) list of Indicator Conditions can be downloaded from TURAS Learn