Barriers to better care for
people with AIDS in developing countries
Andrew S Furber,
clinical lecturer in public health1, Ian
J Hodgson, lecturer2, Alice
Desclaux, professor of medical anthropology3,
David S Mukasa, HIV and AIDS trainer and
counsellor4
http://www.bmj.com/cgi/content/full/329/7477/1281
1
Public Health GIS Unit, School for Health and Related Research,
University of Sheffield, Sheffield S1 4DA, 2 School
of Health Studies, University of Bradford, Bradford, 3
Centre de Recherche Cultures, Santé, Sociétés, Université d'Aix-Marseille,
Maison Méditerranéenne des Sciences de l'Homme, 13094 Aix en
Provence Cedex 2, France, 4 Uganda Red Cross Society,
PO Box 494, Kampala, Uganda
Correspondence to: A S Furber
A.Furber@sheffield.ac.uk
WHO's
"3 by 5" initiative to increase access to antiretroviral
drugs to people with AIDS in developing countries is
highly ambitious. Some of the biggest obstacles
relate to delivering care
Introduction
Access to good quality antiretroviral treatment has transformed
the prognosis for people with AIDS in the developed world.
Although it is feasible and desirable to deliver
antiretroviral drugs in resource poor settings,1
w1 w2 few of the 95% of people with HIV
and AIDS who live in developing countries receive them.
The World Health Organization has launched a programme to
deliver antiretroviral drugs to three million people
with AIDS in the developing world by 2005, the "3 by
5" initiative.2 w3 We identify
some of the challenges faced by the initiative, focusing on
delivery of care.
Continuum of
care
Ideally, care for people with AIDS should start with voluntary
counselling and HIV testing. However, only 10% of people
who need testing in low and middle income countries
have access to services, and therefore most are
unaware of their serological status.w5
Care should include psychological, social, and economic
support as well as broad based medical care incorporating
nutritional advice, prevention and treatment of
opportunistic infections, and palliative care.3
w6 In many countries, this continuum remains
to be set up.
The 3 by 5 initiative considers access to antiretroviral
drugs as an opportunity to improve care and enhance
prevention efforts.4 However, the focus on
antiretroviral drugs risks distracting resources and
attention from a broader model of health care. A
recent survey of palliative care for people with AIDS in
developing countries showed that services were often
inadequate.5 Pain management was
especially poor. India's decision to rapidly provide
free antiretroviral drugs to 100 000 people with AIDS
in the six states with the highest HIV prevalence created
considerable debate, partly for this reason.6 7
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Credit: FRIEDRICH STARK/STILL
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Countries need to take the opportunities presented by the WHO
initiative to improve their public health infrastructure.
Care for patients who do not require antiretroviral
drugs is based on regular clinical follow up. But
this kind of care, related to a chronic disease
model, is far from the acute disease model presently
dominant in the healthcare services of developing
countries.8 Setting up this new model requires
equipment, human resources, data management, and the
use of communication tools that are both efficient
and protect confidentiality.
Stigma and
discrimination
The issue of confidentiality is crucially important in view
of widespread AIDS related stigma and discrimination.
According to UNAIDS, AIDS related stigma is "the
process of devaluation of people living with or
associated with HIV/AIDS."w7 Despite more
than 20 years of awareness of AIDS, the stigmatisation
of people living with HIV remains strong, albeit
manifested in more sophisticated ways.9
WHO asserts that access to antiretroviral drugs will rapidly
reduce stigma,2 and this is true at a global
level and, to an extent, at individual level. The
disappearance of "body marks" such as slimness or
Kaposi's sarcoma is felt as a real relief.w8 Once HIV
is perceived as a chronic but treatable condition,
one of the factors that amplify stigma—fear of contagion
and inevitable death—is lessened. However, stigma is much
more than fear of contagion. It is also a tool used by
cultures to exclude those felt to have broken extant
rules. The dominant stereotype of people living with
HIV is a stigmatising one that casts them as immoral,10
leading to what Goffman suggests is a spoilt
identity.11 In our view, the downgrading of HIV to
a manageable disease is unlikely to change this perception
of HIV as effectively as WHO suggests.
Antiretroviral drugs may also be stigmatising. Patients
taking antiretroviral drugs in Senegal often hide
their medicines. Although most of their families are
supportive, some relatives still reject them.
Neighbourhood or professional relationships still
convey a danger of rejection, especially in contexts of
conflict or competition.w9
Recent research suggests that use of testing services and
disclosure of status is constrained because of
"anticipated and actual stigma experienced by people
living with HIV."w10 In tandem with the
development of AIDS care and support for health workers,
the 3 by 5 initiative should promote training programmes
for healthcare workers on medical ethics and human
rights. Since antenatal clinics, sexual health
services, and tuberculosis treatment centres have
been suggested as entry points for AIDS care, it is
important that the stigmatising effect of AIDS does
not deter users of these services.12
Systems of
delivery
Although the 3 by 5 initiative has already brought some
important technical advances, such as the development
of simplified treatment regimens and monitoring
protocols,13 some issues related to the
delivery of antiretroviral drugs remain. Some experts have
argued that the best way to deliver highly active
antiretroviral drugs treatment (HAART) is likely to
be through directly observed therapy (DOT), so called
DOTHAART,w11 in order to support adherence.
Lessons need to be learnt from the use of DOTs in
tuberculosis.14 Although most developing countries
have adopted DOTs for tuberculosis, and some have
seen apparent successes,15 not all randomised
controlled trials show that DOTs confer benefit.w12
w13 Experience in Africa has been highly
variable.16 Treatment completion rates
vary from 37% (low) in the Central African Republic to 78%
(moderate) in Kenya and Tanzania. Clearly multiple
approaches to delivering antiretroviral drugs will be
required to close such gaps.
Senegal, Malawi, and South Africa have achieved high and
sustainable adherence rates for antiretroviral drugs
without directly observed treatment.17
w4 The important factors seem to be the regular
supply of medicines, efficient health service management,
and support through "antiretroviral drugs literacy
promotion" and self support groups.
As the quality of life for patients on antiretroviral drugs
improves, frequent contact with healthcare providers may
be difficult. In Dakar, missing monthly appointments
to obtain antiretroviral drugs was the first reason
for non-compliance among patients in their second
year of treatment.w14 Most patients had
returned to their jobs, often requiring stays far from home,
especially for sailors and retailers. A visit to the
hospital to obtain antiretroviral drugs often takes
several hours, which is inconvenient for all
patients.
Community
involvement
Delivering antiretroviral drugs to three million people in
developing countries by 2005 will require huge
increases in trained staff; an estimated 100 000
trained health providers and treatment supporters
will be required by the end of 2005.w15 The
initiative plans to involve community based
organisations and include people with AIDS at all
levels. Administering such a workforce risks
diverting scarce healthcare managers from already overloaded
essential programmes.
Community based organisations are very heterogeneous. In
countries such as Burundi they have set up whole AIDS
care programmes, whereas in other countries their
role is more limited, perhaps relating only to
communication of prevention messages. Healthcare
workers may find it difficult to accept such organisations as
partners, especially if they have promoted traditional
medicines for AIDS or faith healing.w16 w17
An evaluation in Burkina Faso has shown that although
community based organisations are thought to be more
accessible, more supportive, and more able to guarantee
follow up than healthcare services, they have poor results
because of losing patients.w18 Internal
power distribution within the organisations may mean
that people in greatest need of treatment are not the
ones who get first access to antiretroviral drugs,
and this can result in disaffection among potential users.
Training may be insufficient to change the social
strategies and issues of established community
organisations, healers, or groups. Defining criteria
to select possible partners will be a hard task.
Access to
treatment
Concern has been voiced that existing criteria for access are
inequitable.18 Presently most programmes
providing treatment do so at different tariffs based
on different ways of considering equity. A patient
who gets free treatment in one programme might be
asked for a payment in excess of average monthly wages in
a neighbouring programme. Providing free or subsidised
treatment on a first come, first served basis tends
to favour richer, urban, and more educated people.
Perversely, these are the people in whom treatment
might be least effective as many of them will have
previously purchased antiretroviral drugs through private
facilities. Leaving decisions about charges to front line
staff leads to inconsistencies and may lead to
corruption.
Criteria for access to subsidised antiretroviral drugs in
national programmes differ substantially between
countries. In West Africa, these criteria are based
on social characteristics, level of income,
profession, social status, and number of dependants.w19
Perceptions of equity differ at local levels, often
related to a community's social dynamics. Such
variation is difficult to manage from both a public
health and a clinical perspective and doesn't fulfil
requirements for equity at national or international
levels.
Introducing user charges is likely to be inequitable as well
as adversely affecting adherence.18 19 Many
families will already be living in poverty as a
result of a reduction in income or paying for AIDS
care. Providing free access to antiretroviral drugs
based on rights and not ability to pay,19 as occurs
in the Senegal national programme, will be most
equitable, will resolve dilemmas over the treatment
of migrants, and will also reduce migration to obtain
antiretroviral drugs.
Conclusions
The 3 by 5 initiative faces important challenges in meeting
the desperate need for antiretroviral drugs in many
developing countries,. Constructive dialogue between
stakeholders with different agendas, including
healthcare workers, public health managers, community
and faith based organisations, and people with AIDS,
will be crucial if the initiative is to succeed. The
prevailing social strategies must be considered carefully
when setting up programmes and working relationships, in
order to capitalise on and not undermine the existing
social order. In an interview in Bangkok, the
executive director of UNAIDS noted that
"antiretroviral therapy is still a rare commodity,
and it will be for some time. The result of that is always
higher price, and also higher price in terms of
power. Who has access to it, and who comes first:
it's a terrible issue."w20 Without
addressing this and the other issues we have raised, the 3 by
5 initiative may fall short of its goals.
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Summary points
The 3 by 5 initiative aims to deliver
antiretroviral drugs to three
million people with HIV infection in
developing countries by 2005
To succeed, the initiative must develop a
chronic disease model of care through
a strengthened public health
infrastructure
Cooperation is needed with existing
essential programmes to manage
scarce health staff
The influence of stigma
requires monitoring
Access to treatment must be based on
rights and not ability to pay
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ASF, IJH, and DSM have received support from Health
and Development Networks (www.hdnet.org)
to report on international AIDS events which have
helped inform this article. The views expressed do
not necessarily represent the views of organisations for which
the authors work. We thank the external reviewers for
their helpful comments.
Contributors and sources: This article was
written after discussion between the authors at
recent international AIDS conferences in the light of
keynote presentations by WHO/UNAIDS. The authors have
experience of working in AIDS programmes in Asia and Africa
both in government and non-government sectors. ASF wrote
the first draft and is the guarantor. IJH, AD, and
DSM all revised and added to parts of the paper.
Competing interests: None declared.
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