Join the club: helping people with HIV stay on ART

by Mandip Aujla, Health Policy and Planning

It’s a cool, sunny, October morning in Khayelitsha, a densely populated township just outside of Cape Town. Fifteen people are seated in a back room of the township’s largest HIV treatment facility, the Ubuntu clinic. A warm and friendly looking woman takes a register before addressing the group; moments later the room becomes lively with discussion in both Xhosa and English.

A security worker asks if he can change the time that he takes his antiretroviral therapy (ART) to suit his changing shift pattern. Another member of the group feels that her treatment is not working as well as it has been. Each issue is discussed in turn and the forum ends with a man asking, “Why are we only given two months supply of ART?”

This is the bimonthly meeting of the Ubuntu clinic’s ART adherence club, which begins at 8am and lasts for up to an hour. Led by a lay counsellor, the club not only provides an opportunity for local people living with HIV to support each other and discuss issues that arise as they manage their illness, but each attendee is also weighed, given a quick health assessment and two months supply of their pre-packaged ART. Anyone showing weight loss, or symptoms suggesting illness or adverse drug reaction, is referred back into the main clinic for assessment by a clinician.

The adherence club model

Medecins Sans Frontieres first piloted the ART adherence club model in the Ubuntu clinic in 2007 to ease the burden of managing increasing numbers of people on ART, as clinics reached their capacity. Khayelitsha is home to over half a million people and carries one of the highest burdens of HIV in South Africa, with 33% of the population affected. The first clinics began offering ART in the area in 2001. Since then great strides in improving access to treatment have been made – from 100 patients on ART in 2002 to over 25,000 in 2013. However, not everyone who needs ART is receiving it; some people have not been tested for HIV, others are unable to access treatment, while many more begin treatment but drop out or are lost to follow-up. Initiating new patients to ART while also managing the large number of patient’s already on treatment, therefore, represents a huge challenge for the health system. The adherence clubs aim to decongest the clinics by shifting stable HIV-positive adults, who have been on ART for at least 12 months, and have undetectable viral loads, out of the clinic and in to peer-run clubs. This helps free up clinicians to deal with new patients and manage unstable patients. The early morning meeting every two months keeps patients in care with limited disruption to their daily lives. Participation in a club is voluntary and all members still see the nurse twice a year for blood tests and their annual clinical check up.

The results of the pilot study showed that 97% of club participants remained in care over 40 months compared with 85% of those who were eligible for clubs but did not join. Club participants were also 67% less likely to experience virological rebound, reflecting greater adherence among club participants compared with those in mainstream care. Participation in a club reduced loss to follow-up by two-thirds compared with those not in the club. In 2013, 221 facility-based clubs were running in Khayelitsha, including 23% of patients on ART. The model has also been rolled out by Western Cape Health Services and the City of Cape Town.

In 2012, Medecins Sans Frontieres took the adherence clubs into the corrugated iron shacks that are home to much of the community. People with HIV now have the option of taking a short walk down the narrow alleys to the home of a local lay facilitator to pick up their ART, have a basic health assessment and discuss the issues of the day with their peers. Although there are many benefits to community adherence clubs, people may have reasons not to join, such as fear of disclosing their HIV status in an area where stigma is still high.

Successful community delivery of ART is highly dependent on adequate drug supplies, lay facilitators, access to quality clinical care, routine viral load testing, a solid monitoring system and a supportive community. There is no single strategy that can lift the burden of managing HIV in high prevalence settings but a resilient and resourceful community can go a long way towards helping people living with HIV stay on treatment.

 

Further reading

Reaching Closer to Home: Progress implementing community-based and other adherence strategies supporting people on HIV treatment. Experiences from DRC, Lesotho, Malawi, Mozambique, South Africa and Zimbabwe.

ART adherence club report and toolkit. Medecins Sans Frontieres.

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