Stopping antiretroviral treatment when you are living with HIV can result in increased HIV transmission, illness, hospitalisation, and eventually death. To combat such disengagement with HIV treatment, Professor Graeme Meintjes and colleagues argue we need smarter differentiated care and better education of healthcare workers, people living with HIV, and communities.
People living with HIV who remain on treatment can now anticipate life expectancy similar to people in their community who are HIV-negative.
This is because enormous scientific and public health progress has been made in the last three decades in the treatment of HIV. Treatment regimens have become simpler, better tolerated, more effective and less susceptible to developing resistance.
Access to antiretrovirals has expanded dramatically. In South Africa, 6.1 out of 7.9 million people living with HIV are on antiretrovirals. Today, most adults living with HIV in sub-Saharan Africa are treated with a single fixed-dose combination tablet taken once daily, that contains three antiretrovirals - tenofovir, lamivudine and dolutegravir.
Despite this progress, HIV remains a frequent cause of premature death and hospital admission among adults in South Africa and other sub-Saharan African countries. In 2022, an estimated 630 000 people died from HIV-related causes globally, including nearly 50 000 people in South Africa.
When it comes to hospital medical wards in South Africa, many patients are still admitted with complications of advanced HIV disease, including severe forms of tuberculosis, cryptococcal meningitis and severe bacterial infections.
Why do we see so much advanced HIV disease despite our treatment programme being so successful? A key driver is disengagements from antiretroviral care: people are diagnosed with HIV, start antiretrovirals, but then after variable periods of time stop attending their clinic and stop taking their antiretrovirals.
What is the scale of the problem?
A recent study by the Western Cape Department of Health and Wellness estimated that among the 530 000 people living with HIV in the province, the majority (91%) know their HIV status and have initiated antiretrovirals at some point in the past.
The authors - which include two of the writers of this piece - described a cyclical pattern of engagement, whereby a substantial proportion of people on antiretrovirals disengage from care and then re-engage, often multiple times due to unresolved challenges. Between 60 000 and 80 000 people disengage from care in the Western Cape each year. On any given day, about 130 000 people (or a quarter of all people living with HIV in the province) are currently disengaged, having previously been on antiretrovirals. Many of these people do re-engage in care, but after variable time periods, and often only after their clinical condition has deteriorated and they may require hospitalisation.
Reasons for disengagement
Reasons for disengagement vary from person to person and can be complex. Studies have identified the fact that people move around a lot and inflexibility of the healthcare system as large contributors. A systematic review of studies categorised vulnerability factors into individual (e.g. mental health challenges), interpersonal (e.g. lack of family and social support), health system-related (e.g. inflexible frequent clinic appointments, long waiting times) and structural (e.g. work commitments, transport costs).
The reason someone ultimately disengages is often a specific event, such as finding a new job or an unexpected need to travel, resulting in a missed appointment. These people then often express reluctance to return to care after missing an appointment, due to anxiety that they may be reprimanded by healthcare workers or face punitive measures, like needing to attend multiple additional appointments. Socio-economic hardships faced in communities and the overburdened public health services are important contextual factors.
What are the consequences of disengagement?
Antiretrovirals effectively suppress HIV replication in the body to extremely low levels, resulting in the CD4 lymphocyte (an important type of immune cell) count rising and a person's immune function improving. When someone living with HIV stops taking antiretrovirals, the virus starts replicating again and the HIV viral load in blood and tissues rises rapidly. This results in a fall in the CD4 count.
It is widely under-appreciated how rapidly the CD4 count can drop, especially in people who first started antiretrovirals with a very low CD4 count. This may result in people who disengage rapidly becoming vulnerable to severe opportunistic infections that may result in preventable hospitalisations and deaths. Stopping treatment also increases the likelihood of onward transmission of HIV, as it results in a person's HIV viral load increasing, which makes them more likely to transmit infection.
What is being done to address this problem?
Differentiated care refers to treating people differently according to their needs - for example, the care needed by a very ill person who was just diagnosed is quite different from that needed by someone who has been on antiretrovirals for years and is in good health. Such differentiated service delivery models have been developed and scaled within the antiretroviral programme to make it easier for people living with HIV to remain on antiretrovirals in the long term. These models include less frequent clinic visits and longer medication refills, community collection points leveraging private pharmacy networks, quick pick-up options at clinics, and adherence clubs for those opting for peer support with their medicine refill.
More needs to be done to increase the scale and further optimise differentiated service delivery mechanisms. Three-monthly treatment refills should become the norm unless people are unwell and needing intensified clinical management. Six-monthly refills with annual clinical reviews and re-prescribing should be enabled for people who are clinically well with a suppressed HIV viral load. When treatment interruptions occur, health systems should be able to facilitate immediate return and appropriately support people to sustain their re-engagement efforts. We need better quality trace and recall systems, and adaptions to enable easier late collections and collection at clinics elsewhere in the country when there is unanticipated travel. Buffer stock and patient-held records, or effective and accessible digital records, could also assist those who are mobile.
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There is also still more to do to educate our patients and communities. Most people living with HIV needing lifelong treatment will disengage at some point and they are often insufficiently equipped with information about the risks of interrupting treatment and of delaying return to care.
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Healthcare workers need to be encouraged to adopt non-judgemental, supportive attitudes and be better orientated on how to consider and support each person's specific challenges, including utilising service delivery flexibilities that reduce rather than increase the burden on people living with HIV. Improved recognition and interventions for people with mental health challenges are also needed.
Three decades into the epidemic, the key challenge for the South African antiretroviral treatment programme is now to ensure sustained and minimally interrupted treatment for an unprecedented number of people. Disengagement from care undermines the potential of the programme to end HIV deaths and curtail HIV transmission. More needs to be done to expand and further optimise differentiated service delivery mechanisms to make lifelong treatment collection and adherence more feasible. Earlier identification of individual and inter-personal vulnerability factors for clinical and psychosocial management could protect against treatment interruptions.
The reality is that far too many people living with HIV are becoming seriously ill and dying after stopping treatment. We need to do a much better job of helping people stay on treatment or get back onto treatment quickly. Many people's health and lives depend on it. What could be more important?
*Meintjes is from the University of Cape Town (UCT) and Queen Mary University of London, Euvrard from UCT, Dlamini from UCT, Wilkinson from UCT and the International AIDS Society, and Boulle from UCT.
Note: Spotlight aims to deepen public understanding of important health issues by publishing a variety of views on its opinion pages. The views expressed in this article are not necessarily shared by the Spotlight editors.
