how to help people stay on ARVs when life gets in the way

Antiretroviral therapy (ART) has made HIV a manageable chronic disease. When ART works effectively, HIV cannot be transmitted. This enables people living with HIV to lead more fulfilling lives without fear of infecting others. It has also spearheaded global HIV control efforts focused on increasing ART coverage. The aim is to improve the health of people living with HIV and to contain and ultimately stop the spread of the virus.

UNAIDS has set 90-90-90 goals to measure global progress by 2020: 90% of people living with HIV know their status, 90% of those with known status are on treatment, and 90% of those on treatment are virally suppressed (a blood test result that means ART is working effectively). These targets have now been increased to 95-95-95 and are set to be achieved by 2030.

Read more: HIV, AIDS and 90-90-90: What is it and why is it important?

South Africa has achieved the first 90 goal but falls short of the second 90. Although more than 5.5 million people are treated, only 75% of patients with known status are on ART.

Poor retention in healthcare is one of the most important reasons for this. People living with HIV need to take ART throughout their lives. It’s a difficult question, and although the pills are available free of charge in public health facilities, many people stop taking them. Model and program data suggest that the number of people starting ART again is equal to or higher than the number of people starting treatment for the first time.

Interruption of treatment is a problem for two reasons. First, people who are not treated are likely to get sick and die. Second, HIV can be transmitted without consistent treatment, leading to additional infections.

At the Anova Health Institute, we support the Ministry of Health in providing HIV services in five districts in South Africa. In a recent study, we wanted to learn more about why people with HIV interrupt and return to treatment and how we can help them stay in care.

Reasons for stopping treatment

We surveyed 562 and interviewed 30 people returning to treatment after stopping ART in three provinces of South Africa. We also examined the challenges faced by service providers in providing treatment and care.

Our analysis has shown that care retention is influenced by several factors. These include individual, family, societal and healthcare barriers.

Mobility or relocation was the most common reason for interrupting treatment, cited by nearly a third of respondents. This was followed by ART-related factors, including side effects, and feeling too ill to continue ART (15% of respondents); and time constraints due to work (10%). Participants who travel a lot said that managing their ART is difficult due to administrative hurdles.

Barriers in healthcare included negative attitudes from providers and providers who insisted on referral letters, leading to a disruption in treatment and care. Feedback interviews conducted with 99 healthcare providers found that people returning for treatment were sometimes put at the end of the queue or turned away if they did not have referral letters. Both practices are discouraged in national guidelines. Most providers reported seeing or hearing that other providers behaved badly towards the patient after the interruption of ART. Poor vendor behavior and attitudes have been attributed in part to limited resources and work overload.

On the other hand, we found that clinics with flexible and extended working hours were better able to keep people in care. This shows that health services need to be more responsive to different living conditions.

What needs to be done

Healthcare systems should be set up so that people can change the place where they pick up their medicines. Movements between provinces are common in South Africa. Health services need to be more responsive to people moving within and between districts and provinces, as well as outside of South Africa. A functioning health information system is required to link medical records and enable movement between clinics or drug collection points across the country. Healthcare providers should not insist on referral letters. Official policy demands that people without a referral letter be helped, but in practice many are turned away. Improved treatment literacy would also empower people to understand their own treatment and demand access to care.

ART and other services related to HIV and other chronic diseases can be delivered in a variety of ways inside and outside of healthcare settings. In South Africa, ART and chronic medication can be provided through the Dablapmeds program. This allows people to pick up medicines for three months at collection points closer to where they live or work. Such models should be supported and strengthened.

People living with HIV told the Department of Health they wanted prescriptions for 12 months and ART refills for three to six months. A 12-month prescription was used as an emergency measure during COVID-19, and Anova’s programs reported no decrease in virus suppression. This policy should be expanded.

Health care providers need improved working conditions and support to enhance their ability to provide compassionate, quality services. Overall, the country needs more patient-centric and responsive health services to improve retention in ART.

People on ART need comprehensive support that includes medication issues, psychosocial support, and socioeconomic support. Proactive strategies could include check-in calls or messages, appointment reminders, and pop-up sites to collect after-hours treatments in remote communities and facilities. Task shifting enables different forms of treatment support to be offered and can promote ART adherence.

Why this matters

Assisting people living with HIV to continue treatment is currently the biggest challenge facing South African HIV services.

The needs and views of people living with HIV must be heard and considered in order to protect and build on the health benefits of the country’s antiretroviral program.

Services that are flexible and reflect people’s changing circumstances will improve health and reduce HIV transmission.

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