Before antiretroviral therapy (ART) became available in the developing world, concerns were raised over the viability of these treatment programmes for sub-Saharan Africa. Weak states with inadequate or no medical infrastructure, coupled with widespread poverty, had many believing that expanding ART in these settings will lead to poor adherence and poor treatment outcomes.^(2,3) However, much to the surprise of the developed world, levels of adherence recorded in sub-Saharan Africa are comparable, and in some instances better, than adherence levels in North America and Europe.⁽⁴⁾

Despite the barriers to adherence in resource-poor settings, high adherence levels are achieved by prioritising adherence over other necessities. Africans are able to do so by participating in relationships of obligation and social responsibility.⁽⁵⁾ This CAI paper draws on Ware et al.’s study of social capital to explain and give insight into the high levels of adherence to ART recorded in sub-Saharan Africa.
Is antiretroviral therapy (ART) for Africa?

It has been a long uphill battle to make antiretrovirals (ARVs) available in Africa, the continent with the highest incidence and prevalence of the HIV & AIDS pandemic. Sub-Saharan Africa alone represents “77% of women with HIV, 79% of AIDS deaths, and 92% of the world’s AIDS orphans,” whilst being home to merely 10% of the world’s population.⁽⁶⁾ A markedly resource-poor setting, the high demand for ART for populations living in severe poverty,⁽⁷⁾ coupled with a lack of proper medical infrastructure and funds⁽⁸⁾ raised many fears over the viability of ART in Africa. The question of economic viability – that African countries would be unable to support ART programmes in their national budgets⁽⁹⁾ – meant that they would have to rely on “programmes patched together from complex donor programmes such as the Global Fund and the US President’s Emergency Program for AIDS Relief (PEPFAR), non-Governmental Organisations (NGOs), community groups, public and mission hospitals, and workplace health centres.”⁽¹⁰⁾

Arguments against making ART available in Africa clearly reflected a lack of confidence in the ability of those living in Africa to follow such a strict treatment regime as ART. This is evidenced in paternalistic utterances and beliefs of the time: that Africans do not know what it means to take drugs at specific intervals;⁽¹¹⁾ that African doctors are unable to manage such a complex disease; and that the strict monitoring of viral loads, CD4 counts and side effects in ART is not possible in an African setting.⁽¹²⁾ There was thus a fatalistic expectation that Africa would become the breeding ground for highly drug resistant strains of HIV⁽¹³⁾ which would undermine global efforts to positively impact on the epidemic.⁽¹⁴⁾ As a result of these notions and fears, many early HIV & AIDS interventions in Africa focused on prevention rather than prevention and treatment.⁽¹⁵⁾

Despite the abovementioned concerns, in 2003 the World Health Organisation (WHO) launched its “3 by 5” initiative and since then “many countries in sub-Saharan Africa have established national ART programmes.”⁽¹⁶⁾ Although the treatment targets for 2005 were not achieved, progress towards universal access to ART remains a priority.⁽¹⁷⁾ Even so, the access to ART programmes in Africa remains limited,⁽¹⁸⁾ with great variation between regions with regard to access to treatment: Eastern and Southern Africa at 41%, West and Central Africa at 25%, and North Africa and the Middle East at 11%.⁽¹⁹⁾

Adherence: The African experience

Sub-Saharan Africa faces challenges to adherence which are very different from those faced in wealthier countries where substance abuse and untreated depression are rife.⁽²⁰⁾ Barriers to adherence in sub-Saharan African are often not tied to a lack of responsibility or motivation on the part of the patient, but rather the result of financial strains and poor medical infrastructure.^(21,22) In a study conducted in Malawi, these resource- and financial-barriers accounted for two-thirds of non-adherence.⁽²³⁾ Specifically, these barriers range from under-staffed clinics and poorly skilled staff, to unreliable drug supplies⁽²⁴⁾ and problems with continuity of care.⁽²⁵⁾ In the absence of the social safety nets offered in wealthier countries, the costs incurred because of an HIV positive status may debilitate a family by having to make impossible decisions such as who eats, who works, or who goes to school.⁽²⁶⁾ Transport^(27,28) to and from the clinic and the great appetite brought on by ARVs⁽²⁹⁾ incur further costs and impact negatively on adherence.

Other social, cultural and behavioural obstacles impact negatively on adherence, including stigma, the fear of disclosure, competing messages and beliefs, alcohol abuse and side-effects.⁽³⁰⁾ Missed doses are, amongst others, the result of avoiding taking medication in the absence of privacy, being afraid to carry the drugs on one’s person, stopping treatment when health improves, and not taking drugs because of side-effects.⁽³¹⁾ These obstacles to adherence are not restricted to Africa.⁽³²⁾ The effect of these barriers may however be lessened with appropriate intervention. For example, in Botswana, studies found that individuals did not stop medication when side-effects appeared due to excellent pre-treatment counselling.⁽³³⁾ Regular and quality counselling is thus a good deterrent for social, cultural and behavioural obstacles, but has been found to vary considerably between African countries and the facilities in each country.⁽³⁴⁾

Prioritising adherence: A look at African social safety nets

Despite the various barriers to adherence discussed above – many of which are beyond the individual’s control – and the dire predictions that the availability of ART in Africa would lead to “antiretroviral anarchy,”⁽³⁵⁾ studies show that adherence levels in Africa are comparable or exceed adherence levels in developed countries in North America and Europe.^(36,37,38) Ware et al.’s study of social capital in sub-Saharan Africa provides great insight into the reasons for these comparable adherence levels.⁽³⁹⁾

Ware et al. found that, on average, patients in sub-Saharan Africa take 90% of prescribed doses of ART.⁽⁴⁰⁾ This is made possible by expanding access to free ART (as opposed to charging user fees) and improving distribution systems, mostly leaving patients with personal financial obstacles such as transport and food, and other social, cultural and behavioural obstacles as mentioned above. Even with a steady supply of drugs, the barriers to adherence are many. Nonetheless, for those living in resource-poor settings, the motivation to take ARVs is the same as for those living in resource-rich settings: to improve health.⁽⁴¹⁾ When adequate medical care is not readily available, health is often assigned first priority.⁽⁴²⁾ Staying healthy is vital to maintaining social relationships which in turn are invaluable to surviving under stressful economic circumstances.⁽⁴³⁾

Binagwaho and Ratnayake explain that there is a strong social coercion among Africans which oblige them to take responsibility for others.⁽⁴⁴⁾ North Americans, on the other hand, are individually-focused which leaves them with little social support.⁽⁴⁵⁾ The authors maintain that whereas for Americans, taking ARVs may be an individual responsibility, i.e. that they feel less connected to a group as a whole, for Africans, adhering to ARVs is a social or collective responsibility.⁽⁴⁶⁾

In Africa, relationships with others thus form the basis for good adherence as individuals draw on social capital to overcome economic obstacles in life, and also to adherence. Ware et al. define social capital as “resources accruing from a network of relationships that help individuals to solve problems and get things done.’^’(47) By drawing on social capital, Africans are able to tap into a vast network of relationships or social safety nets in times of need. They may, and rightly so, borrow or “beg” transport funds, make impossible choices between food, school fees, clothes, or ARVs, or simply do without necessities.⁽⁴⁸⁾ Patients will acquire these resources from friends, family and even their health care providers.⁽⁴⁹⁾ These relationships are thus relationships of obligation.

Being a good patient, i.e. disclosing one’s status and adhering to treatment, ensures that help will be there when needed ⁽⁵⁰⁾ and also that the patient will be able to reciprocate in future. Carers may invest considerable financial and personal resources (such as time and energy) into improving the health of sick individuals, but these can only be thought of as investments if there is a promise of recovery.⁽⁵¹⁾ By adhering to treatment, individuals are able to preserve social relationships, meet social responsibilities, and diminish the need for support.⁽⁵²⁾ A patient who continually defaults may place unnecessary strain on her social relationships, causing resentment from carers and becoming burdensome to family and friends.⁽⁵³⁾ The motivation to be healthy and to stay healthy is informed by the desire to be a productive individual. With the availability of ART this is now a possibility for many Africans.

Conclusion

The advent of ART brought grave concerns over the implications thereof for Africa. The overpowering presence of economic, social, cultural and behavioural barriers to adherence had many believe that Africa would inevitably become a cesspool for drug-resistant strains of the virus which would undermine global efforts at curbing the disease.⁽⁵⁴⁾ Despite the negative expectations of the developed world, many Africans manage to rise above the seemingly insurmountable obstacles to adherence that they encounter every day. Ware et al.’s⁽⁵⁵⁾ study on adherence success in sub-Saharan Africa is one of the first to explore the work of social capital in overcoming obstacles to adherence.

Africans prioritise their treatment not only to be healthy, but in response to relationships of obligation on which they can draw in time of need. By adhering to treatment, individuals can legitimately ask for economic, social and physical assistance from others and ensure that they will be around in the future to do the same for others.⁽⁵⁶⁾ In this way, individuals can preserve social relationships and responsibilities without becoming a burden to others.⁽⁵⁷⁾ Although ART coverage in Africa is limited, and economic, social and cultural obstacles remain, the new forms of socialities which are borne from HIV & AIDS provide much hope for the future of ART in Africa.

NOTES:

(1) Contact Hanlie Myburgh through Consultancy Africa Intelligence’s HIV & AIDS Unit ( hiv.aids@consultancyafrica.com This e-mail address is being protected from spambots. You need JavaScript enabled to view it ).
(2) Orrell, C., Bangsberg, D.R., Badri, M., and Wood, R. 2003. Adherence is not a barrier to successful antiretroviral therapy in South Africa. AIDS, 17, p.1370.
(3) Harries, A.D., et al. 2001. Preventing antiretroviral anarchy in sub-Saharan Africa. The Lancet, 358, p.410.
(4) Mukherjee, J.S., et al.2006. Antiretroviral therapy in resource-poor settings: decreasing barriers to access and promoting adherence. Journal of Acquired Immune Deficiency Syndrome, 43(supplement 1), p.S123.
(5) Ware, N., et al. 2009. Explaining adherence success in sub-Saharan Africa: an ethnographic study. PLoS Medicine, 6(1), pp.39-47.
(6) Mills, E.J., et al. 2006. Adherence to antiretroviral therapy in sub-Saharan Africa and North America: a meta-analysis. Journal of the American Medical Association, 296(2), p.680.
(7) Orrell, C., Bangsberg, D.R., Badri, M. and Wood, R. 2003. Adherence is not a barrier to successful antiretroviral therapy in South Africa. AIDS, 17, p.1370.
(8) Harries, A.D., et al. 2001. Preventing antiretroviral anarchy in sub-Saharan Africa. The Lancet, 358, p.410.
(9) Mukherjee, S., et al. 2003. Tackling HIV in resource poor settings. British Medical Journal, 327, p.1105.
(10) Nguyen, V., et al. 2007. Adherence as therapeutic citizenship: impact of the history of access to antiretroviral drugs on adherence to treatment. AIDS, 21(supplement 5), p.S34.
(11) Liechty, C.A., and Bangsberg, D.R. 2003. Doubts about DOT: antiretroviral therapy for resource-poor countries. AIDS, 17, p.1384.
(12) Harries, A.D., et al. 2001. Preventing antiretroviral anarchy in sub-Saharan Africa. The Lancet, 358, p.410.
(13) Popp, D., and Fisher, J.D. 2002. First, do no harm: a call for emphasizing adherence and HIV prevention interventions in active antiretroviral therapy programs in the developing world. AIDS, 16, p.676.
(14) Ibid.
(15) Laurent, C., et al. 2002. The Senegalese government’s highly active antiretroviral therapy initiative: an 18-month follow-up study. AIDS, 16, p.1363.
(16) Hardon, A.P., et al. 2007. Hunger, waiting time and transport costs: time to confront challenges to ART adherence in Africa. AIDS Care, 19(5), p.658.
(17) Ibid.
(18) WHO, ‘Key facts: progress in low -and middle-income countries by region’, “Towards universal access” on HIV/AIDS
Global Launch of the 2010 Report, http://www.who.int.
(19) Ibid.
(20) Mills, E.J., et al. 2006. Adherence to antiretroviral therapy in sub-Saharan Africa and North America: a meta-analysis. Journal of the American Medical Association, 296(2), p.687.
(21) Castro, A. 2005. Adherence to antiretroviral therapy: merging the clinical and social course of AIDS. PLoS Medicine, 2(12), p. 1219.
(22) Mukherjee, J.S., et al. 2006. Antiretroviral therapy in resource-poor settings: decreasing barriers to access and promoting adherence. Journal of Acquired Immune Deficiency Syndrome, 43(supplement 1), p.S123.
(23) Van Oosterhout, J.J., et al. 2005. Evaluation of antiretroviral therapy results in a resource-poor setting in Blantyre, Malawi. Tropical Medicine and International Health, 10(5), p.469.
(24) Ibid. p. 464.
(25) Coetzee, D., et al. 2004. Promoting adherence to antiretroviral therapy: the experience from a primary care setting in Khayelitsha, South Africa. AIDS, 18(supplement 3), p.S31.
(26) Castro, A. 2005. Adherence to antiretroviral therapy: merging the clinical and social course of AIDS. PLoS Medicine, 2(12), p.1219.
(27) Ware, N., et al. 2009. Explaining adherence success in sub-Saharan Africa: an ethnographic study. PLoS Medicine, 6(1), p.40.
(28) Hardon, A.P., et al. 2007. Hunger, waiting time and transport costs: time to confront challenges to ART adherence in Africa. AIDS Care, 19(5), p.660.
(29) Ibid. p. 661.
(30) Hardon, A.P., et al. 2007. Hunger, waiting time and transport costs: time to confront challenges to ART adherence in Africa. AIDS Care, 19(5), pp.658-665.
(31) Ibid.
(32) Ware, N., et al. PLoS Medicine, 6(1), p.40.
(33) Hardon, A.P., et al. 2007. Hunger, waiting time and transport costs: time to confront challenges to ART adherence in Africa. AIDS Care, 19(5), p.662.
(34) Ibid.
(35) Harries, A.D., et al. 2001. Preventing antiretroviral anarchy in sub-Saharan Africa. The Lancet, 358, p.410.
(36) Ware, N., et al. 2009. Explaining adherence success in sub-Saharan Africa: an ethnographic study. PLoS Medicine, 6(1), p.40.
(37) Mukherjee, J.S., et al. 2006. Antiretroviral therapy in resource-poor settings: decreasing barriers to access and promoting adherence. Journal of Acquired Immune Deficiency Syndrome, 43(supplement 1), p.S123.
(38) Coetzee, D., et al. 2004. Promoting adherence to antiretroviral therapy: the experience from a primary care setting in Khayelitsha, South Africa. AIDS, 18(supplement 3), p.S27.
(39) Ware, N., et al. 2009. Explaining adherence success in sub-Saharan Africa: an ethnographic study. PLoS Medicine, 6(1), pp.39-47.
(40) Ibid. p. 40.
(41) Ibid. p. 44.
(42) Ibid.
(43) Ibid.
(44) Binagwaho, A., and Ratnayake, N. 2009. The role of social capital in successful adherence to antiretroviral therapy in Africa. PLoS Medicine, 6(1), p.10.
(45) Ibid.
(46) Ibid. p. 10 & 11.
(47) Ware, N., et al. 2009. Explaining adherence success in sub-Saharan Africa: an ethnographic study. PLoS Medicine, 6(1), p.45.
(48) Ibid. p. 43.
(49) Binagwaho, A. and Ratnayake, N. 2009. The role of social capital in successful adherence to antiretroviral therapy in Africa. PLoS Medicine, 6(1), p.10.
(50) Ware, N., et al. 2009. Explaining adherence success in sub-Saharan Africa: An ethnographic study. PLoS Medicine, 6(1), p.45.
(51) Ibid. p. 44.
(52) Ibid. p. 45.
(53) Ibid. p. 44.
(54) Popp, D., and Fisher, J.D. 2002. First, do no harm: a call for emphasizing adherence and HIV prevention interventions in active antiretroviral therapy programs in the developing world. AIDS, 16, p.676.
(55) Ware, N., et al. 2009. Explaining adherence success in sub-Saharan Africa: an ethnographic study. PLoS Medicine, 6(1), p. 45.
(56) Ibid. p. 45.
(57) Ibid.

Written by Hanlie Myburgh ⁽¹⁾