Are community ART groups a way to break down barriers to HIV care?
Clinicians in rural communities face many challenges, as do people living with HIV/AIDS from these communities. Presented in this article are a number of barriers and a community-based approach which promises to overcome some of these barriers.
Facing the deadline to have 15 million people living with the human immunodeficiency virus (HIV) or the acquired immunodeficiency syndrome (AIDS) (PLWHA) on antriretroviral therapy (ART) by the end of 2015, governments have to consider decentralising HIV care in order to meet this goal (UNAIDS, 2013). This article looks at the barriers that prevent PLWHA from rural communities from accessing ART and a community-based approach (CBA) that can help to overcome these barriers and empower PLWHA.
CBAs are a form of task shifting where HIV-uninfected or -infected volunteers are trained to provide essential care (including delivery of ART and adherence checking) to PLWHA (Decroo et al., 2013b).
Barriers to retention in care
Some of the reasons frequently cited by patients for defaulting (i.e. lost to follow up or death) from HIV care in rural sub-Saharan Africa are the time and distance it takes to travel to a healthcare facility equipped for treating HIV-infected individuals as well as the transport costs involved, and the resultant loss of earnings (Gunguluza, 2011). Other barriers include food security, the cost of travelling to a healthcare facility, operating hours of healthcare facilities, stigma and discrimination, fear of drug toxicities, long waiting times and inadequate number of healthcare workers (HCWs). All of these barriers can be divided into four categories: psycho-social, economic, health systems and medical barriers. Completing tuberculosis (TB) therapy was one of the main medical barriers reported (Govindasamy et al., 2012).
Ways to break down barriers to care
To help patients from rural communities to remain in care Govindasamy et al. (2012) proposed that governments and municipalities provide HIV-infected patients with travel vouchers, reimburse their travel expenses, or provide free transportation systems. A systematic patient appointment system was also proposed to lessen the waiting times, as were less frequent visits by patients and dispensing schedules. Increased availability of point-of-care CD4 count tests was also suggested as a means to prevent patients from defaulting.
Govindasamy et al. (2012) noted that the fear of drug toxicity (a psycho-social barrier) can be overcome by introducing new drugs that are less toxic and by educating patients about antiretroviral drugs (ARVs).
To overcome the shortage of HCWs and relieve these pressures clinicians face, Govindasamy et al. (2012) recommended the integration and decentralisation of HIV care. One of the ways in which this decentralisation can be achieved is through CBAs. Numerous sub-Saharan African countries, including Kenya, Mozambique, Rwanda, South Africa, Tanzania and Uganda, have conducted CBA trials (Franke et al., 2013; Decroo et al., 2013b).
Community ART Groups
Decroo et al. (2011) piloted a CBA in the Tete Province, Mozambique. Community ART groups (CAGs) were formed by the Mozambican government and Médecins Sans Frontiéres. It was later scaled up to national level (Decroo et al., 2013a) due to its success.
How community ART groups work
The model is simple (Decroo et al., 2011;Decroo et al., 2013a). Six PLWHA who know each other and come from the same community were asked to form a CAG. The CAG would send one member on a rotational basis to the healthcare facility to report on the health of all six group members and obtain each group member’s quota of ARVs. Thus, each CAG member would visit their healthcare provider once every six months according to Mozambican law. The representative would take all group members’ medical cards with them to the clinician for review. When the representative returned the CAG would meet, ARVs would be distributed, and messages from the clinician would be relayed.
In the next month, the CAG would meet before the next group representative would visit the healthcare facility. During this monthly meeting, the group leader would facilitate the meeting, count pills, and monitor group attendance. Health questions each CAG member might have for the clinician would also be noted for the visit. The CAG would pool money to pay for the transport costs of the representative who is then sent off armed with the group’s medical cards. The pill counting measured CAG members’ adherence to ART.
Healthcare facilities that took part in the programme had to provide HIV counselling and testing, a clinician with the authority to prescribe ART, a sufficient supply of ART and medication to treat opportunistic infections, and the ability to transport CD4 samples and results (Decroo et al., 2011). For an HIV-infected individual to form part of a CAG, their CD4 count should be ≥200 cells/mm3 and they should be clinically stable on ART for at least 6 months. The CAGs elect their own group leader and report to the nearest clinic (Decroo et al., 2011).
Every six months a group session was held where CAG members received health education and updates on CAG dynamics, ART adherence, unplanned consultation times, tuberculosis care, prevention of mother to child transmission, to name a few topics (Decroo et al., 2011).
Success of the community ART group programme
Decroo et al. (2011) found that CAGs helped to retain PLWHA in care who would otherwise have been lost to follow up or died without the clinician’s knowledge. CAGs limited government expenditure since the CAG members pooled their resources to send their representative for that month to the healthcare facility. CAGs also provided emotional and social support for members. Some CAGs had members who, though not eligible for ART yet, benefited from the social support and education.
Furthermore, CAGs are a means of training PLWHA to manage the disease themselves. An approach, Decroo et al. (2011) noted is favoured in the West.
Shortcomings of the community ART group programme
One caveat the authors of the study raised, is the survivorship bias inherent in the requirement that PLWHA be stable on ART for at least six months before they can be enrolled in the programme (Decroo et al., 2011). Therefore, the effect of CAGs on PLWHA that are prone to defaulting was not studied.
In retrospect, Decroo et al. (2013a) reported that their 2011 study (Decroo et al., 2013) did not assess viral load testing and costs to clinician and patient. They mentioned that a qualitative study on the social outcomes of the CAGs programme was in progress (Decroo et al., 2013a).
CAGs have great potential to overcome barriers to care since they empower PLWHA to take care of themselves and others, and to share their experiences with their group members while the pressures clinicians face are lessened (Decroo et al., 2012). CAGs also minimise government expenditure albeit at the expense of job creation (Decroo et al., 2013a). It would therefore be good for policymakers to consider their implementation on a small scale in their own countries to assess the feasibility of a CAG programme.
- Decroo, T., Telfer, B., Biot, M., Maïkere, J., Dezembro, S., Cumba, L. I., das Dores, C., Chu, K. and Ford, N. (2011) ‘Distribution of antiretroviral treament through self-forming groups of lpatients in Tete Province, Mozambique’ Journal of Acquired Immune Deficiency Syndrome 56(2), e39-e44.
- Decroo, T., van Damme, W., Kegels, G., Remartinez, D. and Rasschaert, F. (2012) ‘Are expert patients an untapped resource for ART provision in sub-Saharan Africa?’ AIDS Research and Treatment 2012, article ID 749718.
- Decroo, T., Lara, J., Rasschaert, F., Bermudez-Aza, E. H., Couto, A., Candrinho, B., Biot, M., Maïkeré and Jobarteh, K. (2013a) ‘Scaling up community ART groups in Mozambique’ International STD Research & Reviews 1(2), 49-59.
- Decroo, T., Rasschaert, F., Telfer, B., Remartinez, D., Laga, M. and Ford, N. (2013b) ‘Community-based antiretroviral therapy programs can overcome barriers to retention of patients and decongest health services in sub-Saharan Africa: A systematic review’ Intenational Health 5, 169-179.
- Franke, M. F., Kaigamba, F., Socci, A. R., Hakizamungu, M., Patel, A., Bagiruwigize, E. et al. (2013) ‘Improved retention associated with community based accompaniment for antiretroviral therapy delivery in rural Rwanda’ Clinical Infectious Diseases 56(9), 1319-1326.
- Govindasamy, D., Ford, N. and Kranzer, K. (2012) ‘Risk factors, barriers and facilitators for linkage to antiretroviral therapy care: A systmeatic review’ AIDS 26, 2059-2067.
- Gunguluza, V. (2011) 'Geographical barriers to accessing ART in rural areas' AfroAIDSinfo. Issue 11, no. 5, Policy. (Open access).
Joint United Nations Programme on HIV/AIDS (2013), Global report: UNAIDS report on the global AIDS epidemic 2013.
Author: Waldo Adams (BSc Hons Biochemistry)
Reviewed by: Hendra van Zyl (MPH) and Michelle Moorhouse (MBBCh, DA)
Date: March 2014
Adams, W. (2014) Are community ART groups a way to break down barriers to HIV care?, AfroAIDSinfo. Issue 14 no. 4, Policy (Open access).
4 March, 2014