Biggest single reason for people with HIV dropping out of care is stigma, doctors report

A major issue at last year’s British HIV Association (BHIVA) conference in Gateshead was loss to care. Several presentations alerted the conference to the fact that there could be more people in the UK who were diagnosed with HIV but were currently not in care, and therefore were not virally suppressed, than there were people who remained undiagnosed.

Loss to care remained as one of the themes at last month’s conference in Birmingham. However, a more detailed analysis of the figures revealed that the idea that as many as a third of people diagnosed with HIV could be out of care was an overestimate, and also found that some people ‘lost to care’ may have in fact been receiving it elsewhere.

Dr Veronique Martin of the UK Health Security Agency told the conference that if all the people who attended HIV care at any point between October 2016 and September 2020 were counted and those who failed to attend in the subsequent 15 months were then counted, they amounted to 14,393 people of about 102,000 people, or 14% of them. This is in the same ball park as the estimate of 12.5-16% presented last year. However, a period as long as four years likely overestimates dropouts from care, because it will include an increasing number of people who have disappeared for other reasons such as permanently moving abroad, simply having duplicate records, or people dying.

If one takes instead the 86,161 people who attended at least once in the year from 1 October 2019 to 30 September 2020, then 6392 of these people (7.4%) did not attend at any time in the next 15 months, i.e. up to December 2021.

Of these, 50% of them, or 3203 people, had re-attended by the end of 2022. This means that 3.7% of those who originally attended in 2019-2020 remained out of care.

However, there was a surprise waiting in the figures. Of the 3203 who came back, 1660 people (52%) had viral loads under 200 when they returned. While a few of them may have been post-treatment controllers, it seems likely that most had received care elsewhere.

If we exclude these people from the figures, then it brings the maximum number of people who were really not in care down to 4848 people – or 5.6% of everyone in care in 2019-2020 (rather than the 7.4% mentioned above). It’s a maximum, because some of the people who did not return may have been getting care elsewhere too.

Of this group, 1543 people – about a third of those who definitely stopped treatment for more than 15 months – subsequently resumed it. But this does not mean they stayed in care. Of these 1543, only 965, about two-thirds, had a viral load below 200 six months later.

The demographic make-up of those who dropped out of care at least temporarily is revealing. Compared with an average of 5.6% of patients dropping out of care, about 10% classed as “White other” – i.e. not White British – dropped out. The study period coincided with the early part of the COVID epidemic when travel was highly restricted, and some of the “White other” group may be people from elsewhere in Europe or further afield who found themselves back in their home country. These people were also under-represented in the group who resumed care – about 24% of them re-engaged, compared with 32% overall and 56% of heterosexual women. On the other hand, heterosexual women were less likely than other groups to stay in care once re-engaged – only 48% had a viral load below 200 six months after re-engaging, compared with 62.5% overall.

The people behind the figures

Dr Goli Haidari of Guy's & St Thomas' NHS Foundation Trust in London reported on their ongoing work to re-engage people living with HIV who had not been seen at the Trust’s two clinics within the previous year.

Between April 2022 and March 2023, 88 people were re-engaged in care. Roughly half each were men and women, and two-thirds were Black. Their median age was 49, which is rather older than the average age of people living with HIV in the UK, and over half (57%) had been living with HIV for more than 10 years. Many had been out of care for a long time too: the average time was a year and eight months, but one patient had been away for more than 10 years.

Prior to their disengagement from care, there were already signs that these were people who found it difficult to maintain adherence: only 41% had a viral load below 50 at that time, while 25% had a viral load over 10,000. By the time they re-engaged, 63% had viral loads over this figure, and only 10% had a viral load below 1000, regarded by the World Health Organization as the threshold for infectiousness.

A quarter of those re-engaged needed hospital admission. Of this group, a third had AIDS-defining conditions, cryptococcal meningitis being the most common.

Why had they dropped out of care? In their patient notes, poor mental health seemed to be the most common issue: 39 people (44%) had some degree of psychological distress noted. Only five people were on antidepressants and only three were linked to mental health services, but two-thirds were receiving some form of counselling – only five said they had no mental health support at all.

In another 15 people, drug dependency was noted as a factor, mainly linked to cannabis or chemsex, and seven had problematic alcohol use.

However, when their healthcare workers were asked about what they thought was their single most important barrier to care, stigma was cited in 28% of cases. This was followed by poor mental health (19% of cases), problematic drug or alcohol use (12%), and social factors such as poverty or residency status (11%). In 19% the reason for disengagement was not known, though it’s notable that two-thirds of patients came from the 30% of most deprived areas in the local borough.