Retention in HIV care has declined since 'Treat All' guidelines introduced

The proportion of people with HIV who remain engaged with HIV care has declined over the years since HIV treatment began to be recommended for all people living with HIV, according to a retrospective cohort study published recently in PLOS Medicine. The study also shows that even after the national adoption of ‘Treat All’ guidelines in 25 countries in the last decade, there were glaring gaps in monitoring long-term HIV care outcomes.

The study looked at long-term outcomes of those who began their antiretroviral therapy before the national adoption of ‘Treat All’ guideline and compared it with those who began treatment after its adoption. It is the first multi-country study which looked at loss-to-clinic, viral load monitoring and viral suppression at 12, 24, and 36 months after treatment initiation.

It is over a decade now since the World Health Organization (WHO) 2013 guidelines called for viral load monitoring after initiating antiretroviral therapy. In 2014, UNAIDS launched its 90-90-90 targets for 2020 to ensure 90% of those receiving the treatment are virally suppressed. A year later in 2015, WHO guidelines were updated calling for treatment of all people living with HIV, regardless of CD4 count.

The researchers analysed observational data (from 2010-2021) of 66,963 people at 109 clinics in 25 countries (in Africa, the Americas, and Asia Pacific). Almost three-quarters of study participants in both the groups were from central and eastern Africa, and less than 2% from Asia Pacific. Close to 90% of study participants came from low- and middle-income countries.

More than two-thirds of the people in the study initiated treatment before the ‘Treat All’ guideline was adopted in their respective countries, and the rest began their treatment after the adoption of the guidelines. Around 70% of low- and middle-income countries had adopted the national ‘Treat All’ guideline by 2017. All countries in the study had done so by 2018.

Almost half of the study participants were at tertiary care hospitals (which are likely to be better resourced), one quarter at health centres and another quarter at district hospitals.

Half of those who began treatment were retained in care by the end of third year

The study found that around half of those who began treatment were retained in care by the third year, with this proportion slightly decreasing after the policy change. By the end of third year, retention was 55% in those starting before guidelines were adopted and 48% in those starting afterwards.

Both before and after the ‘Treat All’ guidelines, retention in care declined successively during follow up. Averaging out both groups, 74% of people were retained in care at the end of first year, falling to 62% and 53% in the subsequent years. Most who were not retained were “lost-to-clinic”, meaning they had no contact at all with their clinic (24% at the end of the first year) and the remaining were documented as deceased or transferred to another care facility.

After adoption of the guidelines, higher proportions of people were recorded as transfers or lost-to-clinic at the end of first, second and third years (compared to before adoption of the guidelines). The numbers documented as deceased each year were almost the same in both the groups.

Before adoption of the guidelines, the numbers lost-to-clinic was more than double among those who were not on treatment, compared to those who were on treatment. However, after the adoption of the guidelines, this difference lessened.

Following adoption of the guidelines, those retained after treatment initiation were more likely to have viral load monitoring in the first and second years, but less likely in the third year (compared to those starting treatment before the guidelines were adopted).

One-third of study participants in both the groups had a CD4 count of less than 200 at the time of enrolment in the HIV programme. But even after the adoption of ‘Treat All’ guideline, there was hardly any increase in median CD4 (from 302 before the guideline adoption to 315 after the guideline adoption). However, median time between enrolment and treatment initiation decreased from 14 days to zero days after the adoption of national guidelines.

Irrespective of whether people enrolled before or after the adoption of ‘Treat All’ guidelines, there was no significant difference in viral load suppression at the end of first, second and third year – it remained around 90% of those who were retained in care and got a viral load test.

Quality of HIV care is vital

Regarding the drop in retention in care, the study authors suggest that “distress and uncertainty about HIV diagnosis, concerns about stigma, fear of lifelong medication, and other patient-level factors may contribute to attrition and lower treatment adherence among those rapidly initiating treatment, particularly among patients with early stage disease who do not feel unwell.”

Monitoring long-term HIV care outcomes is critical to identify and address gaps in HIV care, and resolve issues that negatively impact retention in care. Programmes must work towards full and long-term retention of people in the care cascade. In addition, monitoring and maintaining viral suppression for everyone should be a key goal of HIV programmes.

Universal access to testing and treatment should translate into universal viral suppression on an ongoing basis.