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Expanding antiretroviral therapy provision in resource-constrained
settings: social processes and their policy challenges
Steven Russella; Janet Seeleya; Alan Whitesideb
a
School of International Development, University of East Anglia, Norwich, UK b Health Economics
and HIV/AIDS Research Division, University of KwaZulu-Natal, Durban, South Africa
Online publication date: 02 August 2010
To cite this Article Russell, Steven , Seeley, Janet and Whiteside, Alan(2010) 'Expanding antiretroviral therapy provision in
resource-constrained settings: social processes and their policy challenges', AIDS Care, 22: 1, 1 — 5
To link to this Article: DOI: 10.1080/09540121003786078
URL: http://dx.doi.org/10.1080/09540121003786078
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2. AIDS Care
Vol. 22, No. Supplement 1, 2010, 1Á5
EDITORIAL
Expanding antiretroviral therapy provision in resource-constrained settings: social processes and
their policy challenges
The international policy and research context stigma? How are people adjusting to a new chance of
Political pressure to provide antiretroviral therapy life, to living with HIV as a chronic condition, and
(ART) in poor countries, alongside falling drug what challenges do they face in rebuilding their social
and economic lives as they return to the harsh
prices, led to a dramatic increase in ART delivery
realities of poverty? How is ART delivery affecting
from 2002. In that year the Global Fund for AIDS,
the working and personal lives of health workers and
TB and Malaria was established. In 2003, President
what are the implications for health systems?
George W. Bush pledged US$15 billion towards his
This issue presents papers presented at a con-
Presidential Emergency Programme for AIDS Relief
ference: Expanding antiretroviral therapy provision in
(PEPFAR) and the World Health Organisation
resource-limited settings: social dynamics and policy
(WHO) launched the ‘‘3 )5’’ campaign aiming to
challenges, held in May 2009 at the University of East
place three million people on treatment by 2005.
Anglia (UEA), UK. The conference was organised by
Although the WHO goal was not achieved, the
the School of International Development, UEA, and
investment meant by the end of 2008 about four
the Health Economics and HIV/AIDS Research
million people in low- and middle-income countries
Division (HEARD) of University of KwaZulu-Natal.
Downloaded At: 07:22 27 August 2010
were receiving ART.
It brought together international research organisa-
Research to inform and evaluate ART expansion
tions and partnerships to share original social science
in resource-constrained settings has, perhaps inevita-
research on ART delivery and its effects in resource-
bly, focused on the impact of different drug combina-
constrained settings. This is one of the first collections
tions and clinical outcomes, related public health
of social research on patients’ and health workers’
questions, and on the effectiveness and costs of
responses to ART and its effects on their lives and
different modes of delivery. Social or behavioural
livelihoods.
science research has tended to focus on the important
question of patient adherence. Social research has
recently started to explore the effects of ART on Summary of themes and papers
stigma, sexual relationships, new identities, political The diverse topics covered by these papers follow a
activism, and the inequalities that underlie HIV- broad analytical theme of social actions and processes
infection and undermine ART delivery (Bunnell surrounding ART delivery and uptake, and their (often
et al., 2006; Castro & Farmer, 2005; Domek, 2006; unintended) implications for policy. The papers exam-
Robins, 2005; Seeley et al., 2009, for example). ine social actors and processes from the perspective of
However, research about the social processes unfold- those accessing and taking the treatment, often
ing as a result of ART has been relatively rare people coming back from near-biological and social
(Russell et al., 2007). As social scientists, we expect death and striving to build a new life on ART, and
the provision of an effective drug for a previously those delivering or funding ART interventions. They
terminal, feared and highly stigmatised disease to are organised into three themes: ART and changing
have profound implications and meanings for social identities; ART and living with HIV; and ART and
and economic aspects of life; for individuals, families, its effects for health services.
communities and health services, and for wider social
norms, expectations and behaviours. These unfolding
social changes will affect society, but also specifically ART and changing identities
ART programme processes and outcomes, for exam- ART provides effective treatment for a previously
ple, reductions in stigma and increasing numbers of untreatable and terminal disease. It leads to improved
support groups can speed up uptake and increase health and enables a return to normal activities.
adherence. These social facts could have profound implications
In this special edition we consider several broad for the way a society applies meaning to and ‘‘socially
areas of enquiry. How is ART affecting the social constructs’’ the disease and labels or categorises those
construction of the disease, people’s identities and people with that disease. Across societies, HIV has
ISSN 0954-0121 print/ISSN 1360-0451 online
# 2010 Taylor & Francis
DOI: 10.1080/09540121003786078
http://www.informaworld.com

3. 2 Editorial
been characterised by high levels of stigma and HIV affects mainly marginal and stigmatised groups
discrimination. While stigma must be conceptualised (sex workers, gay men and drug-users). Public
as a social process arising from structural inequalities resource constraints mean moral-economic judge-
and the exertion of power and control (Castro & ments construct ART as a diverter of scarce funds
Farmer, 2005; Parker & Aggleton, 2003), the nature away from more ‘‘socially deserving’’ conditions.
of the disease itself makes it open to social processes Structural obstacles to finding work add to feelings
of labelling and the categorisation of ‘‘undesirable’’ of disempowerment and dependency. HIV and ART
or ‘‘undeserving’’ ‘‘others’’. In most societies’ moral are cast as threats to both the social and economic
frameworks it is associated with perceived ‘‘deviant’’ fabric of the country. They conclude that HIV
or ‘‘immoral’’ behaviour and groups; it is seen as the treatment is insufficient alone to reduce stigma and
responsibility of the individual; it is contagious and a needs to be supported by complementary employ-
threat to the community; it was the equivalent of ment and social support interventions enabling
a death sentence with no treatment; and death was PLHIV to lead more empowered economic and social
slow and painful (Alonzo & Reynolds, 1995). ART lives.
cannot necessarily address the structural inequalities Kielmann and Cataldo examine how collective
or moral frameworks that drive processes of stigma- action around access to ART, involving political
tisation and discrimination, but does offer a chance claims for social justice, human rights and health
to counteract some of the above processes through care, have forged new individual and group identities
prolonged life and improved health and appearance. among PLHIV. Associated processes have con-
The papers on this theme consider ART’s structed them as ‘‘expert’’ patients and ‘‘empowered
implications for the social construction of the disease citizens’’, important actors at the inter-section of
and the identity of those people living with HIV health services and communities. They argue that
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(PLHIV). Does ART necessarily reduce people’s fear constructions of PLHIV as ‘‘responsible patients and
of getting tested or disclosing their status and reduce public health citizens’’ are key but may not be
the stigma? How have political struggles for treat- applicable in all treatment settings, and the involve-
ment affected identity and the place of PLHIV in ment of patients in health systems raises further
public health discourse? Does a ‘‘medicalisation’’ of ethical, political and policy questions.
HIV through ART offer new opportunities for HIV Busher explores how ART delivery expansion in
organisations to link up with communities in the north-east Namibia is changing the way HIV orga-
‘‘fight against HIV’’? nisations and programmes are perceived by tradi-
Virginia Bond draws on 20 years of living and tional leaders and fit within the wider socio-moral
working in a high HIV prevalence country, Zambia, cultural framework. Traditional leaders view inter-
to explore the reasons that lie behind people’s limited ventions involving discussions of sex and condoms as
uptake of HIV testing or public disclosure of their a threat to local moral values and social order,
status, despite increased availability of ART since preventing their involvement in these activities.
2004. She describes how PLHIV must carefully However, the rapid expansion of ART after 2004
negotiate the pragmatic advantages of testing and meant the emphasis shifted to advice about accessing
disclosing alongside the fear of the result and a tests and effective treatment. A new set of signs and
permanent shift to their identity following disclosure. meanings about HIV has enabled traditional leaders
When it is spoken, Bond argues, the ‘‘possibility’’ of to engage with the fight against HIV, without under-
infection, the ‘‘implicit knowing’’ of others becomes mining their role as cultural guardians.
reality and a person’s HIV status becomes a promi-
nent and fixed identity. Disclosure is a complex
matter, taking many forms and often a gradual and ART and living with HIV
careful process to a limited circle. Silence is often an ART means HIV has become a manageable chronic
easier option, perhaps with the presence of HIV condition rather than a terminal illness. The second
implicitly known but not spoken. Better understand- theme looks more closely at the effects of this change
ing of disclosure processes is needed to inform safe for the social and economic lives of individuals and
disclosure procedures in the VCT and ART pro- their families in resource-constrained settings.
grammes being rolled out in Sub-Saharan Africa. Restored health enables people to return to work,
Bernays, Rhodes and Terzic present qualitative
´ ´ re-engage with family and participate in social
findings from Serbia to look at the effects of activities. Numerous changes are required in the lives
treatment on stigma. Their analysis reveals that of PLHIV as they move from a situation of sickness
structural factors continue to make HIV a stigma- and social isolation to a second chance at life. There
tised disease despite the availability of ART. Here, are challenges to this adjustment, especially in

4. AIDS Care 3
settings of poverty and where ART delivery systems new outlook, new personal aims, new social roles and
offer varying degrees of support or security (Rhodes, a new status (Pierret, 2007; Robins, 2005). The key
Bernays, & Terzic, 2009; Russell et al., 2007). Patients
´ ´ policy challenge is to provide support for people
who may have managed to accept their HIV status working to restore their social and economic lives, to
must now incorporate the treatment regimen into accompany the medical intervention.
their daily lives Á for the rest of their life. Chileshe and Bond also explore people’s efforts to
When ART became more widely available in access ART and manage their condition under
resource-constrained settings there was widespread conditions of extreme poverty in a rural setting.
concern about adherence levels. A feature of some They had experienced the long-term economic shock
ART programmes in Sub-Saharan Africa is the and impoverishment caused by a prolonged and
requirement for patients to choose a treatment serious illness, TB. Subsequent HIV diagnosis and
supporter or medicine companion (MC) to improve access to ART was undermined by this pre-existing
adherence. Foster, Nakamanya, Amurwan and col- poverty. High transport costs to ART clinics, and a
leagues report on the characteristics and roles of MCs health service system requiring four visits before
chosen for adherence support by Ugandan patients being enrolled on ART, posed serious economic
enrolling on ART. Women were more likely to barriers. Stigma, a recurring theme in this special
choose one of their children and men more likely to edition, also presented barriers. The authors argue
choose their spouse. An important part of the MC programmes delivering ART in poor rural areas need
system is that it entails disclosure of one’s HIV status, to consider the impact of transport and food costs on
which as Bond argues in this edition can pose a treatment adherence and appreciate how many poor
serious dilemma for people wishing to start ART. households enter the ART programme with already
Foster and colleagues note that women may have depleted household resources.
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been less likely to choose husbands as their MC
because they had not yet disclosed their status to the
husband. Such a disclosure can have serious con- ART and its effects for health services
sequences for women in Uganda. These conclusions Large-scale investment in ART delivery expansion in
echo those of Bond: ART programmes must consider poor settings has changed the lives of health workers
the pros and cons of the requirement of disclosure and generated considerable changes for health ser-
carefully. vices. The scale of funding has also affected wider
Adjustment to living with HIV as a chronic illness processes of health policy governance.
also requires people to make changes in their Schneider and Lehmann describe the expansion of
economic, social and personal lives. The challenges lay health workers in the South African health
of rebuilding a livelihood, relationships and hope system, which now outnumber professional nurses.
devastated by HIV are considerable, but vitally They consider the implications for the organisation of
important for individual clients and the success of the health system and professional relations between
ART programmes. People need to be leading mean- lay workers and health care professionals. Counsel-
ingful economic and social lives to live with and ling and home-based care are routine roles for lay
manage the disease, and more specifically to go on health workers, and they occupy a ‘‘mediating layer’’
adhering to ART (Nam et al., 2008). They need to between citizens and the formal health and social
live with, as well as manage their chronic illness, and welfare systems. While they are essential to the
the management will be affected by the ‘‘living with’’ delivery and functioning of health care, their prolif-
(Strauss, 1990). eration has been uncoordinated and unregulated by
Seeley and Russell’s paper explores people’s the state, causing numerous organisational and hu-
efforts to rebuild social relationships and social lives man resource difficulties. The authors argue that
following a period of profound disruption caused by research is needed to understand this complex phe-
HIV. They use the concept of ‘‘transition’’ to explore nomenon, to inform measures that can better harness
people’s narratives of recovery and change on ART, the potential of lay workers.
and the related idea of ‘‘getting back to normal’’. Namakhoma and colleagues examine the pres-
Transition refers to a person’s adjustment towards sures of delivering ART for already over-stretched
incorporating a chronic illness and treatment regimen health workers in Malawi, and the difficulties faced
into their lives, their identity and their interactions by health workers taking ART themselves as they
with others (Kralik, 2002). They also consider the wrestle with fears of disclosure.
transformative effects of HIV and ART, and the idea George and colleagues examine the effects of
of ‘‘rebirth’’, a process whereby the illness is per- ART delivery expansion on health workers at two
ceived as an opportunity to live a better life, with a ART sites in South Africa. Survey results comparing

5. 4 Editorial
ART and non-ART workers show that ART workers to scale-up ART delivery the important focus on
are less likely to regard their workload as heavy, have clinical priorities must not ‘‘over-medicalise’’ the
higher levels of job satisfaction, lower rates of agenda and forget other notions of well-being.
sickness absenteeism and see more opportunities for These social processes must be placed into the
professional development. This evidence contradicts wider context of funding for ART expansion and the
that found in Malawi noted above, and many other immense challenges to long-term success. First,
studies that show ART scale-up creates additional treatment coverage needs to expand further. Only
burdens and stress for health workers. Qualitative about 40% of those who need treatment in middle-
interviews explored the reasons for these findings and and low-income countries are getting it. The number
found that higher satisfaction and morale and lower of people needing drugs will continue to rise each
stress were related to their ability to bring treatment year, and over time people will need more expensive
and hope to patients, delay deaths due to AIDS, and second-line regimens. Funding is also needed for the
better training opportunities. The wider political complementary social and economic interventions
context and better resource levels in South Africa discussed in this special edition. A key question for
also explain these findings. development agencies also centres on their long-term
Kudale and colleagues examine the ways social obligations to people supported on ART in resource-
and political actors within the ART delivery setting poor settings: will ART be guaranteed for life,
affected the evolution of ART delivery systems in two regardless of the increased cost of different treatment
high prevalence settings in Maharashtra and Andhra regimens required as resistance develops?
Pradesh in 2005 and 2009. The study goes beyond a Second, against these growing resource demands
static analysis of resource constraints to consider the is a situation in which current funding for ART
roles of different actors, the wider political context expansion in Africa is time-limited. Long-term fund-
Downloaded At: 07:22 27 August 2010
and questions of leadership and ownership of the ing commitments for ART had not been embraced
HIV programmes, and how these processes affected even before the current international economic reces-
quality of care and patient pathways to accessing sion. Major HIV/AIDS donors may be forced to
ART. They conclude that the evolution of ART reduce their commitments due to acute budget
programmes within local health systems must con- constraints, and the global economic crisis will also
sider the wider socio-political environment. affect domestic economies and government budget
Hanefeld moves to the wider shifts in health policy resources.
processes brought about by the advent of support for Third, even if donor support were guaranteed,
ART by PEPFAR and the Global Fund. She explores health system weaknesses in many countries raise
the role of these two global organisations in Zambia concerns about the feasibility of continued ART roll-
and South Africa over the past five years, focusing on out, particularly in rural and unstable areas. The
their influence on policy content and the implemen- foundation upon which success depends Á the assur-
tation of ART programmes. Hanefeld highlights their ance of an uninterrupted, affordable and accessible
influence on governance at national and sub-national supply of medication and care Á remains absent in
level, showing how because of the intervention of many countries.
global players the actual implementation of policy Finally, there is the question of donor depen-
bypasses the state. dency. In many countries the provision of treatment
is undertaken by donors and significant numbers of
people’s lives depend on the largesse of decision
The longer term challenge
makers in Washington, London, Geneva and Paris.
The social processes examined here that are arising This is a unique situation which needs careful and
from the dramatic expansion of ART for PLHIV in immediate attention.
resource-constrained settings point to the need for a
vision for ART scale-up that must be broadened to Acknowledgements
go beyond medicine to incorporate complementary
social, economic and health facility interventions that We are grateful to the organisations that have provided
funding for this special edition: Boehringer Ingelheim,
consider complex questions of identity, stigma reduc-
Merck, HEARD, the Evidence for Action Research Pro-
tion and disclosure requirements, economic and
gramme Consortium (RPC), the Team for Applied Re-
social measures that support people’s adjustment to search Generating Effective Tools and Strategies for
living with HIV as a chronic condition, and measures Communicable Disease Control (TARGETS) RPC (RPCs
that can address the needs of health workers involved are funded by the UK Department for International
in ART delivery. The sustainability of ART pro- Development), and the School of International Develop-
grammes depends on this broader vision: in the rush ment, University of East Anglia, UK.

6. AIDS Care 5
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