Making a difference?
Stakeholder participation in the national
HIV/AIDS policy process:
A case study of Uganda.
J.F. Sluijs-Doyle
September 2003
MSc in International Development
TABLE OF CONTENTS
INTRODUCTION........................................................................................... 1
THEORETICAL FRAMEWORKS: THE POLICY PROCESS AND
PARTICIPATION .......................................................................................... 4
2.1 THE POLICY PROCESS ................................................................................................................. 4
2.2 PARTICIPATION ........................................................................................................................... 8
2.3 CHALLENGES TO PARTICIPATION ................................................................................................ 9
2.3.1
Power .............................................................................................................................. 10
2.3.2
Culture ........................................................................................................................... 11
2.3.3
Resources ....................................................................................................................... 12
2.3.4
Macro- or policy level participation .............................................................................. 13
2.4 CONCLUSION............................................................................................................................. 14
PARTICIPATION IN THE HIV/AIDS POLICY PROCESS .................. 15
3.1 THE HIV/AIDS POLICY PROCESS .............................................................................................. 15
3.2 CHALLENGES TO PARTICIPATION IN THE HIV/AIDS POLICY PROCESS ...................................... 20
3.2.1
Multi-sectoralism ........................................................................................................... 20
3.2.2
The nature of HIV/AIDS ............................................................................................... 22
3.3 CONCLUSION AND APPROACH TO THE CASE STUDY ................................................................... 26
CASE STUDY: UGANDA ........................................................................... 28
4.1 COUNTRY CONTEXT .................................................................................................................. 28
4.2 THE POLICY ENVIRONMENT....................................................................................................... 31
4.2.1
Political support ............................................................................................................. 32
4.2.2
Organisational structure................................................................................................ 34
4.2.3
Programme resources .................................................................................................... 35
4.2.4
Legal and regulatory issues ........................................................................................... 36
4.3 PARTICIPATION IN THE HIV/AIDS POLICY PROCESS ................................................................. 37
4.3.1
Problem identification or agenda setting ...................................................................... 37
4.3.2
Policy formulation ......................................................................................................... 38
4.3.3
Policy implementation ................................................................................................... 41
4.3.4
Policy Evaluation ........................................................................................................... 42
4.3.5
From voice to influence ................................................................................................. 43
4.4 POLICY IMPACT ......................................................................................................................... 46
4.5 CONCLUSION............................................................................................................................. 49
CHAPTER FIVE .......................................................................................... 52
MAKING A DIFFERENCE: RECOMMENDATIONS ........................... 52
2
GLOSSARY
AIDS
Acquired Immunodeficiency Syndrome
AMREF
African Medical and Research Foundation
ARV
Anti-retroviral (drug)
CBO
Community Based Organisation
GIPA
Greater Involvement of People living with AIDS
FBO
Faith Based Organisation
HIV
Human Immunodeficiency Virus
(I) NGO
(International) Non Governmental Organisation
LC
Liaison Committee (to the UAC)
MACA
Multi-sectoral Approach to the Control of AIDS
MOH
Ministry of Health
NSF
National Strategic Framework
PEAP
Poverty Eradication Action Plan
PPA
Participatory Poverty Assessment
PRSP
Poverty Reduction Strategy Paper
PWHA
People Living with or affected by HIV or AIDS
PRA
Participatory Research and Action
STI
Sexually Transmitted Infection
TASO
The AIDS Service Organisation
UAC(S)
Uganda AIDS Commission (Secretariat)
UNAIDS
Joint United Nations Programme on HIV/AIDS
UNASO
Uganda Network of AIDS Service Organisations
UNDP
United Nations Development Programme
WHO
World Health Organisation
3
CHAPTER ONE
INTRODUCTION
The HIV/AIDSi epidemic is slowly gaining recognition as being a major development
issue impacting upon economic, social and political development (Barnett and
Whiteside, 2002; UNAIDS, 2002a). By the end of 2002, an estimated 42 million
adults and children were living with HIV or AIDS, of which 29.4 million were
residing in sub-Saharan Africa (UNAIDS, 2002b). Whilst it is easy to become
disillusioned by numbers like these, it is important to recognise that positive things
are happening.
‘Success story’ countries like Thailand, Cuba, Uganda and Senegal have been able to
contain or decrease prevalenceii rates in their countries (Campbell and Williams,
2001; UNAIDS, 2002a). Next to political leadership and a multi-sectoral response,
community participation and the involvement of HIV-positive people in the process
of national policy and programme development is considered to have contributed to
the creation of broad and effective policies (Piot and Coll Seck, 2001; Stover and
Johnston, 1999; UNAIDS, 2002a).
Starting from the premise that “relevant and sustainable policy making requires local
voices to be heard” (Blackburn, 1998:1; IDS, 1996; Brown and Ashman, 1996), to
what degree have stakeholders really been able to influence the HIV/AIDS policy
process? By using Uganda as a case study, the dissertation will aim to answer the
following three questions:
1
Question One: Did stakeholders participate in the HIV/AIDS policy process?
Through analysis of participation levels in the different stages of the HIV/AIDS
policy process, the move from policy voice to policy influence will be assessed,
helping to find the answer to the second question.
Question Two: Did stakeholder participation contribute to changed policies?
These could include improved implementation or policies addressing the needs of
those infected and affected by the HIV/AIDS epidemic. Analysis of this phase will
help to find the answer to the final, possible most crucial question, moving from
policy influence to policy impact.
Question Three: Have policies contributed to improved policy impact?
For example a decline in prevalence, better care options or a decrease in the level of
stigma and discrimination.
The research will be accompanied by an analysis of the effect the policy environment
and country context have on stakeholder participation as well as on the policy process
in the form of barriers and enabling factors.
A number of factors made the process of finding the answers to the research questions
increasingly interesting and challenging. Firstly, regarding Question Two it is
important to recognise that it is difficult to attribute a policy change directly to
stakeholder participation as the “causes and effects with policy change are complex
and hidden” (Houtzager and Pattenden, 1999; Chambers, 1998:197). Then, regarding
2
Question Three, since most HIV/AIDS policies were developed recently, the impact
of the policies might not be measurable yet (Stover et al., 1999). Simultaneously,
work on participation in policy change is recent and thus literature is limited
(Chambers, 1998). Finally, despite contacting academics and development
practitioners, well-known for either their expertise on HIV/AIDS, participation, or
participation in the policy process only limited literature has specifically focused on
stakeholder participation in the HIV/AIDS policy process. Consequently, where
relevant literature on the development of national strategic frameworks on HIV/AIDS
has been used to “fill in the gaps”.
Bearing these challenges in mind the dissertation first explores in Chapter Two
theoretical frameworks of the policy process and stakeholder participation. This is
followed in Chapter Three by a discussion of the specific responses and issues
regarding stakeholder participation in the HIV/AIDS policy process. Chapter Four
features Uganda as a case study and analyses how it has managed to respond
successfully to the HIV/AIDS problem. The final chapter will give recommendations
for ways to improve the analysis of stakeholder participation in the HIV/AIDS policy
process.
3
CHAPTER TWO
THEORETICAL FRAMEWORKS: THE POLICY PROCESS AND
PARTICIPATION
2.1 The Policy Process
In an attempt to simplify a complex reality, the theoretical framework of the policy
process is described in four phases presumed to operate in a linear way; problem
identification, policy formulation, policy implementation and policy evaluation (Walt,
1994). Grindle and Thomas (1991) identify three phases only, not specifically
including the policy evaluation phase. Meier (1991) identifies five stages, but not
policy evaluation, and acknowledges the influence that society centred and state
centred forces play in the policy formulation phase.
Generally most authors agree on a number of stages in the process, even though some
describe them in more detail than others. What is more contested is to what degree the
policy process can follow a rational, theoretical process or whether the process should
reflect what actually happens in the policy process (Walt, 1994). This dissertation
adopts the latter view. Rather than being linear, policy development is a complex
process in which complex decision making dynamics exist, which involves a range of
actors and in which external context is highly important (Grindle et al, 1991; Porter
and Hicks, 1995, Stover et al., 1999; Walt, 1994).
Porter et al. (1995) expand on this non-linear view and building on Kingdon’s work
(1984) suggest that three streams of activity take place at the same time: defining the
4
problem, suggesting solutions and obtaining political consensus. Policy change will
only be able to take place if the three streams ‘meet’ simultaneously, thus creating a
“window of opportunity” (Porter et al., 1995:1). The political context such as the
nature of the state and the degree to which a state is institutionalised have a profound
impact on the ability to build coalitions between state and civil society, allowing for
influence at the time the window of opportunity appears (Houtzager et al., 1999). The
windows of opportunity can be influenced through advocacy and influence from
policy networks or communities in civil society as well as by policy champions within
the state’s policy elite throughout the policy process (Hill, 1997; Porter et al, 1995).
A model of the analysis of the policy process, set out in the four phases as identified
by Walt, is described in more detail next. The reader must bear in mind that ‘phases’
are non-linear, more complex and influenced by a fifth component, namely the
external context.
5
Figure 1: Policy Process (adapted from Walt, 1994: 45) influenced by
factors from the external context.
EXTERNAL
CONTEXT
PROBLEM IDENTIFICATION
How do issues get on the policy agenda?
Why are some issues dropped?
POLICY FORMULATION
Who formulates policy and how?
Where do initiatives come from?
POLICY IMPLEMENTATION
What resources are available?
Who is and/or should be involved?
How can implementation be enforced?
POLICY EVALUATION
What happens after implementation?
Is policy monitored, are goals achieved?
Any unintended consequences?
In the problem identification phase identified issues are either taken forward or taken
off the agenda by those considered to be the policy-elite, described as “political and
bureaucratic officials who have decision-making responsibilities in government and
whose decisions become authoritative for society” (Grindle et al, 1991:195). Societal
interest groups may be included. Advocacy and external pressures from international
donors, the media and whether the issue identified is considered a crisis or not can
influence the decisions at this stage (Walt, 1994). Crisis can offer an opportunity for
policy reform rather than “politics as usual” (Porter et al., 1995; Grindle et al.,
1991:83).
6
In the policy formulation phase, technical information (such as statistics), bureaucratic
implications, international pressure and political stability are considered “lenses”
through which decision-makers set criteria for their choices. Political leaders,
dominant economic elites, leaders of class, ethnic and interest associations all have
different agendas and preferences that need to be taken into account (Grindle et al,
1995:96).
The third phase of implementation is by some considered the most important stage in
the process as policy outcomes are dependent on those delivering the services or
policies (Grindle et al., 1991; Walt, 1994). Whether civil servants, including those
referred to by Lipsky (In Hill, 1997:201-206) as ‘street-level bureaucrats’, or the
public in general, implementers’ views must be taken into account throughout the
policy process to anticipate reactions to conflict (Grindle et al., 1991). Analysing who
is in charge of policy implementation and ensuring these stakeholders’ early
participation in the policy process are crucial steps influencing the success or failure
of a proposed policy (Cornwall and Gaventa, 2001).
Finally, the evaluation phase must be considered not only “the end of the policy
process (is the policy effective?) [but also] the beginning (what should be changed?)”
(Walt, 1994:178). Research as an evaluation tool, leading to input in other phases or
into a new process cycle, thus plays a crucial role (Walt, 1994; Porter et al., 1995).
With the complexity of the process and influences from a variety of actors throughout
the four phases of the policy process in mind, one could wonder why an analysis of
the external context is not emphasised more in the existing policy process literature.
7
How this context, whether political, social, cultural or otherwise influences the role
these actors can play in the policy process and what the general challenges of
stakeholder participation are will be explored next.
2.2 Participation
During the 1980s a new development paradigm grounded itself. One in which,
through participation, people came to be seen as the main actors and the active
subjects of their own development rather than objects of development by outsiders
(Cooke and Kothari, 2001). The main actors in development shifted from the state
towards (international) non-governmental organisations ((I)NGO) and local actors
(Nederveen Pieterse, 2001; Lucas and Cornwall, 2002).
Participation can be either supply-led through the principles of good governance and
democracy as well as bottom up, driven by civil society and those who are able or
dare to speak out for their interests or rights. Where as participation at a micro,
community level has become an accepted development discourse, participation at
macro- or policy level has only more recently become common practice (Chambers,
1998). Aiming to achieve more sustainable change and expand from “islands of
success” to a more systemic approach to development meant a recognition of the need
to bring the state back into the development process (Cornwall et al., 2001; Lucas et
al. 2002:2; Chambers, 1998).
Institutions like the World Bank and INGOs have supported the participation process
through which “stakeholders influence and share control over development initiatives,
decision and resources that affect their lives” (Cooke et al., 2001:5). They have
8
contributed to the wider use of participation through their promotion of good
governance focussing on citizen participation and their insistence of a participatory
approach with regards to poverty reduction related work. This includes the
development of developing countries’ Participatory Poverty Assessments (PPA)
followed by a country’s Poverty Reduction Strategy Paper (PRSP), as well as the
World Bank’s ‘Voices of the Poor’iii study (Lucas et al., 2002). Currently most bilateral donors insist on participation as a criterion for funding. Governments, NGOs
and other stakeholders in north and south promote participation as the way to ‘do
business’ (IDS, 2003; Johnson and Mayoux, 1998). Even though most in principle
agree that participation is a good ‘thing’, it faces many challenges (Cooke et al.,
2001).
2.3 Challenges to participation
Faced by the challenges of participation and its complexity some have aimed to
identify different types of participation. White (1996) has categorised participation in
different functions and identifies a top-down as well as a bottom-up agenda in an
effort to assess whether participation is merely tokenism or genuine and empowering.
The least sought after form of participation is nominal participation, which merely
legitimises actions but makes participants feel included, followed by instrumental
participation which looks at actually contributing something, making interventions
more efficient but assessed by local people as a(n) (opportunity) cost. Thirdly,
representative participation gives people a voice, contributes to sustainability and
ensures leverage. Finally, transformative participation empowers people and
facilitates something more profound with participation being an end itself as well as a
means to empowerment (ibid.). Whilst others have used similar classifications on the
9
quality of participation (Pretty et al. in Gaventa, 1998:157), Kriesi et al. (in Houtzager
et al., 1999:4) look at components of influence that groups may have on the actual
policy process itself. These range from procedural influence, that is altering the
aspects of the process followed, to substantive influence, which results into changes in
the policy itself. Followed by structural influence, resulting in the transformations of
political institutions or policy alignments. Finally there is the sensitising component
which leads to an attitude change of actors.
In moving from a minimum level of ‘participation’ to an empowering, transformative
or sensitising form, three specific challenges are identified; issues of power, cultural
issues and issues of resources, either knowledge, money or time (Leurs, 1998; Bell,
Robinson, Thomas, Wield and Wilson, 1997). Whilst these will be discussed first,
paragraph 2.3.4 will highlight the specific challenges faced by scaling-up from micro
to macro- or policy level participation.
2.3.1
Power
Participation can challenge existing power relations, create conflict and exacerbate
existing inequalities (White, 1996). This can discourage marginalised groups from
participating or create resistance to participation by those whose power is being
challenged (Bell et al., 1997). With the gender in development discourse as an
example of complex power relations, household and community notions of
homogeneity ignore the diversity that exists within these labels as for example the
hegemony of men over women, under representing women’s voice in many occasions
(Guijt and Shah, 1998; Cornwall, 2003).
10
Power is also linked to money, either the wealthy in a society or the power of donors
with regards to promised funds. With donors and (I)NGOs stipulating before hand
what kind of programmes their money should be allocated to, the outcome of any
‘participative’ process is contested (Blackburn, 1998; Bell at al, 1997). For donor
institutions this means that if they are genuine about participation, not only should
they ask for opinions to feed into policy or programme formulation but also
simultaneously they must face the challenge of what this means for their internal
institutional structures and goals. If not participation will remain merely rhetoric and a
technical tool rather than an end in itself (Cornwall, 2003; Blackburn, 1998; IDS,
1996). The issue of institutional culture leads on to the next challenge faced in
participation.
2.3.2
Culture
In many ‘new democracies’ in Africa participation as a concept is not
institutionalised. Therefore a long-term approach towards creating a culture in which
consensus rather than bureaucratic decisions becomes the norm must be allowed to
take place. Institutional structures need to be explored when trying to find barriers to
participation, not only at a government level, but small organisations, donors and
(I)NGOs alike (Gaventa, 1998).
Cultural issues such as different approaches to hierarchy and rules, or the concept of
collective decision making can be a constraint too (Bell et al., 1997). Furthermore the
voice of marginalised groups such as women or youth can be drowned out through the
‘excuse’ of “this is how we do it here”. The use of local, culturally sensitive
facilitators in the participatory research and action (PRA) process is therefore crucial
to anticipate this (Cornwall, 2003).
11
2.3.3
Resources
Time can be seen as an opportunity cost, particularly when ‘participation’ in the past
has been merely nominal after which no change took place. Other more immediate
needs can be fulfilled in the time spent of exercising one’s right to participate. Time to
allow for participation is not always available either as in crisis situations some
decisions have to be made rapidly (Grindle et al, 1991; Bell et al., 1997).
With regards to money, the benefits of participation may not always outweigh the
costs and thus a realistic analysis needs to be made whether or to what degree
participation is necessary. As with time, the lack of financial resources can be used as
an excuse to avoid participation (Bell et al., 1997). The other dimension related to
money is power as discussed in paragraph 2.3.1.
Knowledge. Those with less power might have less access to information, exacerbated
by illiteracy in the case of women and the poor. This could lead to representation
being left to those who are considered to be experts, or considered by themselves to
be experts (ibid.). Outside experts as well as facilitators can make assumptions and
manipulate outcomes either due to time constraints (particularly tempting when doing
many PRA’s in similar situations) or depending on a desired outcome by for example
donors (Cornwall, 2003; IDS workshop, 1998; Robb, 1998). The quality of the
facilitator is crucial in participation as it can influence the process outcome and thus
whether participation is rhetoric or reality.
12
2.3.4
Macro- or policy level participation
At a macro level, participation will to some degree have been affected by all of the
above factors at an individual, household, community, organisational, project or
programme, donor and national level (Leurs, 1998). The accumulated challenges to
participation may be seen as more threatening to those representing the, often better
educated, policy elite as the issue of power is challenged at a highly political level.
The tendency to use participation for ‘justification’ rather than ‘policy formulation’
might thus be larger (Cornwall et al., 2001). Unfortunately this tendency has been
confirmed by too many examples in which this ‘quick-fix’ participation has been
present (Cornwall, 2003). Some specific challenges facing PRA at a macro-, or policy
level include the aggregation of information, sampling, institutional and attitudinal
change and the availability of sufficient, good quality facilitators (Gaventa, 1998; IDS
Workshop, 1998).
Additionally the political agenda or mission of international actors can influence the
genuineness of participation at this level (see also paragraph 2.3.1). Structural
Adjustment Programmes have had this influence on social policies in the past (Cheru,
2002; Poku, 2002). More recent, the United States’ promise of funding for HIV/AIDS
work, even though commendable for its size and effort, has come with the condition
that 33% of the prevention budget must go to abstinence programmes (Abrams,
2003). Genuine participation would allow the money to go to whatever programme
considered best fit to meet country needs. (Donor) conditions reflect a top-down
approach most likely resulting in a mismatch between policies and real, social needs
(Devereux and Cook, 2000).
13
When looking at the role of stakeholder participation in the policy process Cornwall
et al. (2001) discuss policy spaces in which actors can negotiate. The spaces are
political and when assessing them, the dimension of who has created the spaces and
invites the actors, as well as who gets invited needs to be taken into account
(Cornwall, 2002; White, 1996). The policy environment, including the nature of the
state (top-down participation) maybe even more so than agency (bottom-up), and the
power dynamics in the space between the actors is crucial to the level of participation
achievable (Cornwall et al., 2001; Houtzager et al., 1999). When looking at ways to
create more enabling conditions for participation at a policy level, decentralised
policy making (improving levels of accountability), high level government support
and a critical mass of quality facilitators could help (Cornwall et al, 2001; IDS
Workshop, 1998).
2.4 Conclusion
The policy process can be described as dynamic and complex. Only more recently has
participation in the policy process become part of the participation discourse and is
now increasingly being used to analyse actors’ influence throughout the policy
process. An external context in which political and power relations, cultural and
resource issues as well as various actors and institutional structures influence the
success or failure of a policy reform should be recognised as a crucial part of policy
analysis. Building on the theoretical frameworks discussed here the next chapter
explores the HIV/AIDS policy process in specific as well as the challenges to
stakeholder participation in it.
14
CHAPTER THREE
PARTICIPATION IN THE HIV/AIDS POLICY PROCESS
3.1 The HIV/AIDS policy process
The HIV/AIDS policy process can be defined as the process in which policies, which
could be “actions, customs, laws, or regulations by governments or other social/civic
groups, directly or indirectly, explicitly or implicitly affect programs for HIV
prevention, people with HIV/AIDS, or families and communities affected by
HIV/AIDS” (POLICY project, 2000:2).
Policy responses to HIV/AIDS in Africa can be characterised in four phases. Upon
discovery of the first AIDS case in the early 1980s, AIDS was being treated as a
medical problem, resulting in medically designed ‘AIDS control’ programmes,
ignoring the social dimension (Seidel and Vidal, 1997; Stover et al, 1999:20). The
second phase widened out into a public health response. As a result difficult policy
issues such as condom advertising in the mass media came to light. Generally no
specific regulations or laws were in place (Stover et al, 1999:20). In the early 1990s,
as the number of AIDS deaths began to increase and external, international
organisations started to highlight the social and economic impact of AIDS, multisectoral responses were encouraged. With the disease having an impact on a wide
range of issues and groups, and with social and gender inequalities exacerbating the
scale of the epidemic a comprehensive and wide national policy framework was
considered necessary (ibid.; Seidel et al., 1997). With this, an increasing involvement
of the private sector, non-governmental organisations (NGOs) and communities
15
emerged. Reflecting this change internationally, UNAIDS, the joint United Nations
Programme on HIV/AIDS, was formed in 1996, superseding the medically focussed
World Health Organisation’s Global Programme on AIDS (WHO/GPA) (Parker and
Aggleton, 2003). The latest phase builds on from multi-sectoralism and takes a
focused treatment and prevention approach, emphasising on the most promising
prevention interventions and in a way ‘re-medicalising’ the debate by focusing on the
resource issues of treatment (Stover et al, 1999: 20). Only throughout the latter two
phases, did participation become a more integral part of the process.
UNAIDS, in an effort to supply guidelines for the development of national HIV/AIDS
strategies, produced a guide to aid the planning. They emphasise that the guide’s steps
might not be applicable everywhere due to context specificity and that flexibility is
crucial for its most effective use. The guide identifies four phases; situation analysis,
response analysis, strategic plan formulation and resource mobilisation leading to the
development of central, district and community plans, thus promoting a decentralised
decision making process that feeds into the national strategy, in which governments,
not outsiders should take the lead (UNAIDS, 1998a). Co-ordination between
stakeholder groups and active (community) participation is essential to find the areas
in need of prioritisation (ibid.).
The situation analysis aims to identify who is vulnerable to HIV/AIDS and why, the
obstacles to expanding a national response and opportunities for expanding the
response in those areas where change is most likely to take place (UNAIDS,
1998b:6). Together with the response analysis it will form the building blocks of a
national strategy. The information derived from the analysis will be used as a base-
16
line against which monitoring and evaluation can take place (UNAIDS, 1998b).
UNAIDS recognises that the development of a framework is a process and not a oneoff exercise and that a range of stakeholders, including HIV+ people or those directly
affected by the epidemic, must participate in this process. This will increase the
diversity of voices throughout the process to create a sense of ownership of civil
society actors with regards to the resource mobilisation (or the implementation) phase
(UNAIDS, 1998b:7).
In their review of experiences of developing national HIV/AIDS policies in Africa,
including Uganda, Stover et al. (1999) have developed a revised framework that more
accurately reflects the complex nature of the policy making process. Acknowledging
that there is no blueprint approach for a (participatory) approach to policy reform as it
takes place in a specific context and thus must be made measured-to-fit (Cooley,
1994), the revised framework is still subject to critique.
There are three main critiques; first the process seems to lack the monitoring and
evaluation phase, second advocacy is taking place at two stages in the process only
and finally the policy environment or external context, including its actors, is not
acknowledged as an influence on the process.
Figure 2:
17
The process for Development of Comprehensive HIV/AIDS policies
Problem Identification
Advocacy
Information
Collection
Need Recognition
Legislation
Drafting
Guidelines
Review
Strategic
Planning
Approval
Advocacy
I
m
p
l
e
m
e
n
t
a
t
i
o
n
Policy Outcome
Source: Stover et al. (1999:19)
The revised framework represents a “description of the process as it has unfolded in
Africa” (Stover et al., 1999:19) and reflects in a good way the complexity and
dynamism of the policy process. It does however appear to lack a crucial phase and
feedback loop: that of monitoring, evaluation and research as highlighted by Walt
(1994) as well as by UNAIDS (1998b). Even though the importance of information
gathering in the policy process is acknowledged by Stover et al. (1999) it has been left
out of the revised framework, apart from as an input. Its essential nature has therefore
not been given sufficient credit. Particularly as implementation of approved policies
sometimes takes place before official approval (ibid.) due to the urgency required in
the HIV/AIDS context, feedback loops would better reflect the complexity and
dynamism of information needs and feeds.
18
One such information feed is coming into the process through advocacy, which leads
to the second criticism of the revised framework. It cannot be assumed that
participatory processes necessarily feed into policies or programmes as examples of
PRSPs, supposedly reflecting the findings from the PPA, demonstrate (Cornwall,
2003). The revised framework only highlights advocacy as input at the need
recognition phase and as an influence on the implementation phase. However, if
advocacy and influencing is to be effective, it needs to take place throughout all
policy process phases, to avoid issues falling off the agenda (as reflected by the right
pointing arrows that do not connect to boxes in Figure Two) (Porter et al., 1995;
Cornwall, 2003). A local capability to do so is crucial and recognised as such by
Stover et al. (1999). The degree to which advocacy or influencing by actors or
stakeholders is allowed to take place is influenced by the policy environment (Stover
et al, 1999; Porter et al., 1995).
The lack of specific mention of the policy environment or country context in the
revised framework is the third critique. In the HIV/AIDS discourse, analysis of the
broader policy context, influenced by “national culture, political environment and the
actors involved in policy implementation” is essential (Parkhurst, 2003:131; Barnett
et al., 2002; Parker et al., 2003; UNAIDS, 1998b; Campbell et al., 2001; Piot et al.,
2001). Not only advocacy but issues such as political support, policy formulation,
organisational structure, programme resources, evaluation and research, legal and
regulatory issues and program components influence the structure in which
participation and policy making is taking place (POLICY Project, 2000). Policy
formulation, evaluation, research and programme components can be analysed easily
enough within the earlier identified four ‘phases’. The other aspects influencing the
19
process itself, its outcome as well as the level of stakeholder participation allowed,
need more detailed analysis separately in a fifth ‘phase’. It is these challenges faced
by a variety of actors that the next paragraphs will explore in more detail.
3.2 Challenges to participation in the HIV/AIDS policy process
When exploring the specific issues surrounding stakeholder participation in the
HIV/AIDS policy arena, two specific issues stand out. First, the multi-sectoral
response to HIV/AIDS and the challenges of inter-institutional power relations this
brings. Second the nature of HIV/AIDS itself resulting in stigma, discrimination and
issues of representation and targeting.
3.2.1
Multi-sectoralism
When using a people centred approach to development, promoted through
participation, the reality of people’s livelihoods and needs must be central.
Livelihoods are not split up in sectors, but influence each other. HIV/AIDS leads to a
need for health care but will also affect the possibility for children’s education if they
need to stay at home to either look after parents and siblings or to work on farm plots.
Food production is likely to be affected due to a decrease of household labour that is
available and social and human capital will be affected due to stigma and
discrimination, taking out the alternative of relying on the community (Stokes, 2003).
Therefore a sectoralised approach can impose “a false structure and set of choices
which conceals the complexity of poor people’s livelihoods” (Devereux et al.,
2000:66; ibid.). As the literature on participation and inter-institutional dynamics
appears to be limited (Gaventa, 1998), exploration in the multi-sectoral context of
20
HIV/AIDS is crucial and could serve as an example for a more integrated social
policy approach in developing countries in general (Devereux et al., 2000).
When talking about a multi-sectoral response both horizontal (between ministries) as
well as a vertical (community, NGO, local government, private sector) interinstitutional and inter-sectoral politics and dynamics come into play. With the
increased numbers of actors, power, culture and value differences are likely to have
multiplied (Brown et al., 1996). Even though participation is essential (ibid.),
realistically if all actors (who can be categorised as technocrats, bureaucrats, interest
groups, politicians and donors) would be involved in all stages the process could
become unrealistically lengthy and time and resource consuming (Stover et al, 1999).
That argument however will also be used as an excuse for exclusion. Finding a
balance is difficult and although greater participation will be more resource intense, it
also “builds momentum for the policy and often shortens the time required for
approval” ultimately shortening the length of the completed policy process (Stover et
al, 1999:32). Capacity building across sectors to enable participation is crucial for
broadening the levels of participation (Abrahams, Judge, Osborne and Schaay, 2000)
and social capital, the “pre-existing organizational and interpersonal linkages” can
support joint action (Brown et al., 1996:1468). Social capital however is being
undermined by the effects of the HIV/AIDS epidemic itself (Barnett et al., 2002;
Stokes, 2003).
Multi-sectoralism can furthermore raise barriers because of financial issues, as power
issues are often focused around the access to resources (Parker et al., 2003:18). If a
range of institutions is asked to integrate an HIV/AIDS response into its policies,
21
additional finances will be needed. If each ministry thinks funding needs to come
from their own budget, this will create friction. National HIV/AIDS programs might
therefore be better situated outside the Ministry of health, so that not one ministry is
considered responsible and the focus is not merely health related, as during the initial
phase of response and so that funding can be disbursed through a more central
financial system. Donors and INGOs alike must consider this in their budget lines. By
adapting less rigid, more multi-sectoral budget lines, governments, donors and
(I)NGOs can promote a multi-sectoral approach.
3.2.2
The nature of HIV/AIDS
Networks of people living with HIV/AIDS are considered to be significant players in
policy formulation and implementation (UNAIDS, 2002a: 188). The participation of
people living with or affected by HIV/AIDS (PWHAiv) in programme, project and
policy development has been formalised at the 1994 Paris AIDS Summit in the
Greater Involvement of People living with HIV/AIDS (GIPA) principle. The
governments who signed the declaration committed themselves to support the full
involvement of PWHAs (UNAIDS, 1999:1).
In reality, the specific context of
HIV/AIDS’ “social, cultural and political environments, often characterised by high
levels of denial, fear and stigmatisation, are not conducive to the involvement of
PWHAs” (UNAIDS, 1999:1).
Stigma and discrimination are often fed by misinformation about the disease as well
as social and cultural norms, which in a closed environment remain unchallenged.
Peer pressure in any environment but possibly more so in a closed environment, is a
strong element influencing behaviour change, either negatively or positively. Even
22
though a decision to change behaviour is an individual one, peer pressure plays an
important role within the process of wanting to ‘conform’ (Cornwall and Welbourn,
2002; Campbell et al., 2001). Therefore HIV/AIDS must be addressed openly at a
community level, scaled up to a national level in which norms and practices are
addressed and where possible and necessary, challenged and changed.
Stigma exacerbates and “reproduces the existing inequalities of class, race, gender
and sexuality” (Parker et al., 2003: 13). In the HIV/AIDS discourse three groups seem
particularly marginalised and stigmatised due to cultural beliefs and norms.
Firstly, women are often discriminated against and blamed for transmission,
particularly in light of sex being a highly stigmatised issue for women to talk about
(BRIDGE, 2003; Seidel et al., 1997; Welbourn, 2002). Furthermore, physically,
culturally and “in their social role as mothers and carers” women and girls are
disproportionally affected by HIV/AIDS, leading to decreased opportunities for
participation and decreased opportunities for schooling (BRIDGE, 2003:1). Within
the participation discourse, knowledge produced by women or issues considered
important regarding the social and gender dimensions of the HIV/AIDS epidemic
certainly do not always seem to influence policies (Seidel et al., 1997). As in the
gender in development discourse, it is crucial in the HIV/AIDS discourse that gender
is recognised as a “constitutive element of all social relationships and as signifying a
relationship of power” (Cornwall, 2003:1326). This means that HIV/AIDS issues
should be tackled by men and women jointly (Mtutu, 2003:13; Cornwall et al., 2002).
23
Secondly, orphans and other vulnerable children are extremely marginalised by the
epidemic. Psychosocial stress due to the loss of parents and care for siblings is
exacerbated by social exclusion due to stigma, leading to denied access to schooling
and healthcare and less opportunity to express their needs (UNAIDS, 2002a;
UNICEF, 1999). The traditional system of social security through kinship, extended
family and community care is broken down and less functional and the capacity of
families to take in children has decreased due to deepened poverty, caused by
HIV/AIDS (UNAIDS, 2002a). With the number of orphans dramatically increasing as
the epidemic progresses, their voice must be heard. However parents, teachers or
community elders consider the participation or empowerment of children to be a
possible challenge to their authority (International HIV/AIDS alliance, 2002). The
level of children’s participation to-date therefore remains low.
Finally, gay men or Men having Sex with Men (MSM) are marginalised. In the
HIV/AIDS discourse MSM as opposed to homosexuality is the broader term used,
particularly relating to HIV transmission in prisons. As homosexuality in many
African countries remains illegal and “does not exist” participation as such is difficult.
It is recognised that due to the high level of HIV transmission in prisons condom
distribution would be beneficial. This however is rarely officially reflected in policy
(Stover et al., 1999:30).
Apart from stigma, prevention efforts, representation and targeting are challenged due
to the fact that the majority of people infected with the virus do not know their HIVstatus. Therefore how can unaware HIV-positive people be part of any consultation?
Or, how can they be ‘targeted’ for successful policy implementation? The availability
24
of voluntary counselling and testing (VCT) services, as well as that of access (or
rather the lack of access) to treatment, either for opportunistic infectionsv or to life
saving anti-retroviral drugs (ARV) both impact the decision to go for testing
(UNAIDS, 2002a). Furthermore if knowing one’s status means being stigmatised,
why risk it and get tested?
HIV related stigma, fuelled by existing power dimensions, cultural norms and
misinformed beliefs as well as not knowing one’s status thus marginalises the
representation of crucial stakeholders in the HIV/AIDS policy process. Even if this is
not the case and people are allowed and willing to participate, the nature of
HIV/AIDS hampers participation as people might be either physically too weak or too
heavily burdened with care responsibilities to exercise their democratic right to
participation (De Waal, 2003).
Finally, as highlighted in Chapter Two power relations and culture highly influence
participation in general. However, with HIV/AIDS cutting across gender, age and
class groups, are these inequalities and challenges possibly different? Based on the
picture painted earlier, HIV/AIDS seems to reproduce existing inequalities embedded
in social structures. Furthermore HIV/AIDS can actually exacerbate resource
differences, with the elite, government workers or the army only having access to life
saving drugs (De Waal, 2003). Possibly in some cases has the fact that HIV/AIDS is
affecting the most productive, educated class most, led to more action. By companies
mainly and for example by the government of Botswana, with the regards to the
supply of ARVs (Chenault, 2001). The influence on social and power relations due to
HIV/AIDS is an interesting area for research; however literature to date remains
25
limited (Parker et al., 2003). The scope of the dissertation unfortunately limits further
elaboration.
Apart from policies shaped because real needs rather than assumed local realities have
been taken into account, it is important to briefly touch upon the more immediate,
positive benefits participation can bring. If genuine, transformative participation leads
to empowerment, awareness raising, decreased stigma and less misinformation it can,
in the HIV/AIDS context lead to behaviour change, decrease infection rates and so
save lives (Welbourn, 1998; Campbell et al., 2001). Ultimately, prevention as such
still remains the most cost-efficient policy measure.
3.3 Conclusion and approach to the case study
The policy environment and country context should be analysed in order to anticipate
possible cultural, political or institutional barriers to influencing both participation
and the HIV/AIDS policy process itself. As such the environment, should be
recognised as a possible fifth ‘phase’ in policy analysis. In the HIV/AIDS context, an
open environment, political will, the level of civil society contribution and the level of
stigma and discrimination are often cited factors influencing policy making and
outcome. Multi-sectoralism and the nature of the epidemic itself fuelled by power,
culture and resource dimensions influence the level of participation in the HIV/AIDS
policy process. Even though reflecting the complexity of the HIV/AIDS policy
process, the policy environment, monitoring, evaluation, research, advocacy and actor
influence should be given more attention in the framework as described by Stover et
al. (1999).
26
The next chapter will analyse participation in the HIV/AIDS policy process in
Uganda. Having reviewed the broader theoretical frameworks, the country-focused
case study of Uganda will aim to find more specific answers to the research questions
by using the five ‘phase’ model for analysis of the HIV/AIDS policy process and
participation in it. Firstly it will explore country context and policy environment,
followed by an analysis of participation in the problem identification, policy
formulation, policy implementation and policy evaluation phases. Based on the
research it will analyse what this means for the answers to our research questions; Did
stakeholders participate in the policy process? Did stakeholder participation
contribute to changed policies? And finally, have the policies contributed to improved
policy impact?
27
CHAPTER FOUR
CASE STUDY: UGANDA
4.1 Country context
Table 1: Key indicators Uganda 2001
Indicator
Value
Population size (million)
GDP per capita (PPP$)
Life expectancy
24.2
1,490
44.7
Urban population
Adult literacy rate (f/m)
Public expenditure on health (as % of GDP)
Public expenditure on education (as % of GDP)
Per capita expenditure on health (PPP/US$)
ODA received (total US$ mill. - as % of GDP)
Women in government at ministerial level
14.5%
68% (female: 58/male: 78.1)
1.5% (2000)
2.3% (1998-2000)
38 (2000)
782.6$ - 13.8%
27.1 (2000)
Country reported HIV/AIDS spending (US$mill)
37.6 (1996)
Estimated costs NSF 2001-2006 (US$mill.)
181.5$ (2001-2006)
Adult HIV prevalence (15-49)
5% (2001)
Estimated no. of orphans
880.000
No. of agencies engaged in HIV/AIDS
717 (down from 1020 in 1997)
Sources: UNAIDS, 2002c; USAID, 2003; UAC, 2003a; UNDP, 2003; Putzel, 2003;
UAC, 2000; Oketcho, Kazibwe and Were, 2001.
Uganda gained independence in 1962 and was at that time an economically viable,
though politically weak country (Ottoway, 1999). Ethnic conflict and disputes were
rife and caused a turbulent 20 years of civil conflict until in January 1986 Yoweri
Museveni came to power, after fighting a 6-year bush war (ibid.). By then Uganda’s
state structure and public services had basically collapsed (ibid.; Putzel, 2003).
Ethnically divided, lacking political institutions and with a highly inefficient,
centralised civil service, the lack of structure and lack of legitimate authority led to
Museveni’s decision to focus his policies on restoring unity in the country and the
structures of the state (Ottoway, 1999). One key policy was the decentralisation of
28
control through diverse resistance councils (RC), set up during the bush war, which
by 1998 were renamed to Local Councils, are considered successful, receive one third
of government funding and add accountability to the population (ibid.; Therkildsen,
2002).
In an attempt to reduce the disruption of ethnical and political turbulence, Museveni’s
National Resistance Movement (NRM) (not a party) limited the power of political
parties (even though they were not banned). According to Uganda’s new government,
the lack of a state structure meant that multi-party elections should not be held until
some basic stability was achieved. The initially announced four-year period of
political control has however lasted up to now (Ottoway, 1999). Currently however
this seems to be with the approval of the population as indicated through a referendum
held in 2000 (Therkildsen, 2002). There are some characteristics that make the
country visibly move towards an alternative form of democracy, which is (relatively)
free press and the earlier mentioned decentralised power with democratic elections at
a local level and national elections (even though not multi-party). The way Uganda’s
constitution was drawn up, through extensive consultation of the population, NGOs
and local RCs, is also encouraging (Ottaway, 1999: 40-42).
With the collapsed state as a starting point in 1986, Museveni had the ideal
opportunity to legitimise his authority by ‘doing something’. Not just about the
economic state of the country, but as well about the upcoming issue of HIV/AIDS,
without worrying too much about the issue of political rights (De Waal, 2003).
Uganda’s crisis gave Museveni the political space to introduce a drastic policy reform
29
rather than a business-as-usual concept to go with regarding HIV/AIDS (Parkhurst,
2001; Putzel, 2003).
Today Uganda is being hailed as sub- Saharan Africa’s success story with regards to
the reduction of HIV prevalence. Adult prevalence started to come down after 1992,
from a rate estimated as high as 30%, to 14% in 1995, to 5% by the end of 2001
(UNDP, 2001; UNAIDS, 2002c). So how did this happen? Did the policy
environment and general country context play a leading role, or was policy content,
developed through participation with key stakeholders, the leading factor for success?
It is well documented that both government as well as NGOs have contributed to the
implementation of numerous interventions aimed at reaching behaviour change and
impact mitigation of the epidemic (Oketcho et al., 2001; Putzel, 2003). Less clear is to
what degree NGOs, PWHAs, civil society and ‘street-level bureaucrats’ contributed to
the four phases of the policy process and what kind of participation took place. And
finally, in the process what institutional, political and cultural factors did they
encounter in the policy environment and within the general country context?
Even though there is a National AIDS Control Policy Proposal (UAC, 1996), there is
currently no one document in place which outlines all HIV/AIDS policies in Uganda
(Oketcho et al.,2001; UAC, 2003b). The case study will therefore use the literature on
the development of the national strategic framework and the levels of participation in
agreeing the framework as an approximation of participation and influence in the
policy process.
30
4.2 The policy environment
“Uganda’s HIV policy response was shaped in many ways by the political culture and
policy environment in the country” (Parkhurst, 2001:69). Participation in general is
further influenced by the degree of empowerment already present in individuals and
communities and by a host of actors (Kapiriri, Norheim and Heggenhougen, 2003).
Furthermore the level of poverty, illiteracy, education and marginalisation of groups
within each local setting determine to what degree genuine participation can take
place or policy can have an impact. Often these dynamics are hidden (ibid.). The
analysis below cannot encompass all local differences and issues. However to a
degree they are reflected by the existing differences of prevalence rates within the
country, between rural and urban settings, between districts and between ‘risk groups’
(Barnett et al., 2002; UNAIDS, 2002c). Components of the policy environment will
be explored next, followed by an analysis of stakeholder participation within the
different phases of the policy process in paragraph 4.3.
31
4.2.1
Political support
Political support has been hailed and marked as one characteristic leading to Uganda’s
success (UNAIDS, 2001b; Hogle, 2002). President Museveni has played a crucial role
in this. By speaking out, awareness and knowledge throughout the country has
increased, reduced denial and dismissal of the problem and created an environment in
which HIV/AIDS could be discussed in a open way. As a result stigma and
discrimination likely decreased (Parkhurst, 2001; UNDP, 2001; Hogle, 2002). At the
same time however President Museveni has also been criticised for making
derogatory remarks over the course of the last decade regarding PWHA’s
employment rights and professional capacity (Tshihamba, 2001). This in fact is
unconstitutional (UAC, 1996:Issue 02). Addressing both key target groups as well as
the general public further helped to reduce stigma and discrimination (Hogle, 2002).
Political support is also reflected by the NGO and donor friendly environment that
was created from an early stage onwards, possibly initially due to the absence of
functioning public services, thus enabling a broader based response to the epidemic
(Parkhurst, 2001). By 1997 the policy community consisted of 1020 organised actors
involved in the HIV/AIDS response in Uganda, of which an estimated 60% were nonpublic ones (ibid.). A 2001 review by AMREFvi and the UAC on HIV/AIDS agencies
and interventions in Uganda reveals that this had come down to 717. This has resulted
from both stricter criteria on establishing NGOs and associations and a number of
agencies closing down due to lack of funding at the end of the Sexually Transmitted
Infections Project (STIP, 1995-2000) (Oketcho et al., 2001). Table Two demonstrates
the types of agencies in country by 2001.
32
Table 2: HIV/AIDS agencies in Uganda
Agency
Percentage of total
Community Based Organisation
21.9%
National NGOs
17.2%
Local Government Agencies
17.1%
Faith Based Organisations (FBO)
16.2%
International NGOs
12.2%
Local NGOs
8.7%
Central Government
3.2%
Non UN international agencies (bilateral)
2%
UN agencies
1.3%
Private
0.8%
Source: Oketcho et al., 2001
It is unfortunate that as primary stakeholders, PWHA, women’s groups and
organisations representing orphans and OVCs have not been separated out in the
review, or other specific target groups for that matter. Most groups are however
represented and the review does allow for an analysis of approximation of a more
general level of participation.
Political will at a local government level is however challenged and thus further
central messages are needed to put HIV/AIDS higher on the local priority ladder
(Putzel, 2003). The HIV/AIDS Political Mobilisation Strategy sets out to do this
(UAC, 2003c). The government also reflects its commitment to fighting the
HIV/AIDS epidemic by strongly referring to it in its revised Poverty Eradication and
Action Plan (PEAP), drawing upon debt relief savings through HIPC vii and by giving
HIV/AIDS special vote in the national budget (UNDP, 2001).
33
4.2.2
Organisational structure
When looking at organisational structure, the decentralised government will have
facilitated a more bottom-up approach to policy formulation. However, even though
cited as contributing to Uganda’s successful prevention campaigns (Hogle, 2002), the
2001 AMREF/UAC review indicates that the improvement of the UAC’s , UNAIDS’
and UNASO’s co-ordination would be best served by decentralising nearer to the
grass roots. Bottom-up planning however was only mentioned by a few and was lower
in the suggestions-for-improvement ranking (Oketcho et al., 2001).
According to Putzel (2003), capacity at district level is not adequate enough to
support a real decentralised, multi-sectoral approach. Based on their research of health
planning at district level, Kapiriri et al. (2003) agree there is a capacity issue.
Capacity which is crucial to broaden participation levels (Abrahams et al., 2000). A
2001 review of HIV/AIDS co-ordination led to newly developed district guidelines by
October 2002. Stakeholder participation, including PWHA organisations and local
authorities, contributed to the new guidelines (UAC, 2002). Within a more general
country context the sustainability of the ‘movement’ system and decentralisation, not
only of government structure but of the implementing policy community as well, is
questioned and could be a future weakness in the policy environment (Kasfir in
Therkildsen, 2002:240; Putzel, 2003). Simultaneously lower-level authorities are
considered the “most important associational arena outside the religious sphere in
much of rural Uganda” and potentially a strong institutionalised base to utilise
towards democratisation (Karlstrom in Therkildsen, 2002:240). Decentralisation
might not yet be at its ideal capacity however, it appears that even in its current state
albeit with genuine prospects and openness for further improvements, the existing
34
structure has supported rather than obstructed the policy process. Additionally, the
presence of an AIDS control programme placed high in the government structure
(since 1992 in the Office of the President), a fulltime chairperson, secretariat and a
reasonably well-functioning multi-sectoral approach contribute to an organisational
structure conducive to policy impact (POLICY project, 2000; UAC, 2003f).
4.2.3
Programme resources
With regards to programme resources, a comparison with other countries with similar
or higher prevalence rates to Uganda might be the best approach to assess Uganda’s
situation. Data available from 1996 reflects that Uganda spends the second most
money per HIV+ person (after Senegal) on HIV/AIDS and most when looking at
country totals. In 1996, over 93% Uganda’s funding came from donors (just over 35$
million). This however is not different from most countries (with the exceptions being
Namibia and Botswana) and can be explained by a small domestic tax base (UNAIDS
in Putzel, 2003: 47). Strangely enough, recurrent expenditure in the health sector fell
between 1993/1994 and 1999/2000 and certainly remains far removed from the 15%
public expenditure on health Abuja target, (Putzel, 2003; WHO in UNAIDS,
2002a:166). The AMREF/UAC review (Oketcho et al, 2001) as well as the Kapiriri
study (2003), highlight the lack of resources, especially at grass roots level, as one of
the constraints for implementation (see paragraph 4.3.3). More recently, with the
introduction of the Global Fund and Uganda’s Poverty Alleviation Fund, more money
is expected to be channelled to local authorities or the national HIV/AIDS programme
in general (Therkildsen, 2002; Global Fund, 2003). By 2001, development partner
funding had increased to around 43.7$ million, which considering the total estimated
costs (see Table One) should be sufficient on a national base (for 2001 at least) even
35
though the NSF 2001/2006 identifies a funding gap (Oketcho et al., 2001:42; UAC,
2000:77). Whether sufficient funds are allocated to decentralised levels might thus be
the issue.
4.2.4
Legal and regulatory issues
Legal and regulatory issues do not seem Uganda’s strongest point. Even though some
issues are well regulated such as clear NGO registration and unrestricted condom
distribution and advertising (even though at the onset of the campaign the Ministry of
Information banned advertising (Stover et al., 1999) there is a need for a stronger
framework and enforcement. As mentioned earlier, HIV/AIDS policies currently are
not outlined in one document; however the UAC is leading the development, with the
use of stakeholder consultations, of a draft National HIV/AIDS policy due for partner
consensus by August 2003 (UAC, 2003b). Within Uganda legal equality for women
(in areas of land inheritance, wife inheritance, domestic violence, employment,
education, housing, social security) and for PWHAs alike still leaves much to be
desired (UNAIDS, 2001a; Mwesigwa, 2001; HRW, 2003:10). Similarly, prisoners
and some students are subject to mandatory testing and Uganda’s draft policy does
not mention prevention programmes in prison, which ignores the issue of MSM
(Stover et al., 1999). The lack of a strong legal framework can reinforce stigma and
discrimination and reproduce social inequalities (Parker et al., 2003).
36
4.3 Participation in the HIV/AIDS policy process
4.3.1
Problem identification or agenda setting
Uganda was one of the first countries to experience an AIDS epidemic and from early
on the issue was set high on the agenda of Uganda’s political leaders. Donors also
played an important role in identifying HIV/AIDS as a problem in Uganda, and the
financial support given to Uganda reflects this. Interestingly interest groups did not
participate in the information collection phase (Stover et al., 1999: 25), seemingly
missing an important impetus before the drafting stage of policy formulation to
identify real issues. Finally, Uganda’s sentinel surveillance data have from early on
been given high priority thus leading to available data identifying (new) policy needs
(Parkhurst, 2001; UNAIDS, 1998c). As early as 1988, national and antenatal clinic
surveys contributed to agenda setting of the HIV problem (UAC, 1993). Even though
according to the AMREF/UAC review monitoring and evaluation of programmes is
considered weak (Oketcho et al., 2001), when looking at the different stages of the
policy process it is clear that there has been an openness to learning from feedback on
existing frameworks and programmes. This will to some degree have influenced
policy reform as well. Cultural barriers regarding MSM and homosexuality, even to
the degree of President Museveni ordering the arrest of gay men however, constitutes
a serious barrier to recognise same-sex transmission as a problem (International
Lesbian and Gay Association, 2003). Similarly other cultural and social barriers
disallow certain issues to become part of the policy agenda.
37
4.3.2
Policy formulation
The MOH took on the first co-ordination roles regarding HIV/AIDS, resulting in early
policies supporting a medical discourse. By 1990 Uganda recognised that the impact
of the epidemic went beyond health alone. With major international agency support
(UAC, 1993) Uganda’s first multi-sectoral AIDS Control Approach (MACA) was
developed by 1992 and the UAC was based in the Office of the President (Stover et
al, 1999; UACS, 2001; Putzel, 2003). MACA involved the input of managers and
experts from both public and private sector (UAC, 1993). The MACA emphasised a
collective responsibility both vertically, from government down to grass roots, as well
as horizontally across ministries and sectors. It recognises the complexity of people’s
livelihoods and similarly that both prevention and impact mitigation are important
factors in the response (UAC, 2003a; UNDP, 2001).
From 1994 to 1998 the National Operational Plan for Sexually Transmitted Infections
(STIs)/HIV/AIDS activities guided the response, reflecting priority needs and sectors.
As a result horizontal commitment was put into practice by establishing Aids Control
Programme Units (ACPU) in eight additional ministries. Following a comprehensive
review in 1997 of HIV/AIDS activitiesviii, the National Strategic Framework for
HIV/AIDS Activities 1998-2000 (NSF) was developed, with “consensus from
partners from various sectors at national and district levels” (UACS, 2001). The
NGOs in Uganda however were not satisfied with their level of input through the
District Directors of Health Services, leading to the formation of a national coalition
of NGOs: the Uganda Network of AIDS Service organisations (UNASO) in 1997
(Putzel, 2003).
38
Based on the identification of a number of gaps in the 1998-2002 NSF, it was revised
in 2000 leading to the current 2000/1 - 2005/6 NSF. The HIV/AIDS problem needed
to be placed in the broader context of national development and had to be related to
other national policies on health and the poverty eradication programme. A long
process of consultation among a wide range of stakeholders took place contributing to
the formulation. Stakeholders included government and (NGO) networks, associations
of PWHAs, research institutions, religious and socio-cultural institutions, individuals
knowledgeable in the field of HIV/AIDS and members from AIDS Control
Programmes of line ministries (UAC, 2000). This latest framework (2001-2006) links
in closely with the country’s broader development context and aims to mainstream
HIV in the country’s Poverty Eradication Action Plan (PEAP) (UACS, 2001).
Compared to many other African countries, Uganda’s multi-sectoral UAC can be
considered unique in its actual well-functioning (Stover et al., 1999).
The UAC is the link between policy making and strategy development and aims to
guide policy formulation and establish programme priorities (Oketcho et al, 2001;
UAC, 2003a). UAC states to embrace “the principle of participatory coordination to
ensure shared perspectives on the various issues of the national programme while
promoting ownership among the various stakeholders” (UAC, 2003d). The fact that a
PWHA is in the Commission is promising, even though it is important to keep the
challenges of representation (of all members) in mind.
According to the AMREF/UAC review at a policy making level and legal framework
level, the cabinet, parliament and the President’s office are responsible. Input to the
policy process comes from the Liaison Committee (LC) consisting of multi- and
39
bilateral agencies, donors and “other development partners”, who make programmatic
decisions including resource flows (Oketcho et al, 2001; UAC, 2003e). Considering
that 54.9% of the agencies are either Community Based Organisations (CBO), local
government agencies, Faith Based Organisations (FBO) or local NGOs, (Oketcho et
al, 2001) the LC does not seem to have a composition reflecting this. Apart from the
LC there is an Advisory Committee with the Permanent Secretaries of key ministries
advising the UAC on programmatic issues.
In theory, stakeholder participation is part of the process, but what has happened in
practice? When asking the 717 agencies in the AMREF/UAC review about their selfprofessed role only 14 felt they were contributing to policy formulation or policy
development (seven international organisations, two national NGOs, one CBO and
four local government agencies) (ibid.). None of the FBOs indicated they had
participated nor, bizarrely did any of the central government agencies (ibid.). Eleven
agencies considered themselves to have an advisory role (three UN agencies, one
FBO, two national NGOs, one local parastatal and four local government agencies).
With regards to advocacy, 66 agencies considered to have played that role (ibid.). The
AIDS Support Organisation (TASO) has played an important advocacy role on behalf
of PWHAs from as early as 1987 (Kaleeba, 1991; Stover et al., 1999; UNAIDS,
2001a). As advocacy is crucial to keep issues on the agenda, advocacy as a form of
participation may thus have influenced policy formulation even though respondents
did not identify it as such.
Furthermore, new district strategic plans in accordance with the new guidelines have
reportedly been developed in a participatory, consultative way (Rippey, 2003). As a
proxy indicator of participation in the HIV/AIDS policy process, a side step to health
40
planning can be made. Kapiriri et al. (2003) conclude that even though the
government of Uganda states that the national health policy should start from grass
roots, in reality, due to reported social, economic and cultural barriers, public
participation is still dominated by locally elected leaders.
4.3.3
Policy implementation
The diversity of the broad based support implementing programmes has been a crucial
factor contributing to Uganda’s success (Parkhurst, 2001). The AMREF/UAC review
outlines 600 agencies working on prevention and 549 on impact mitigation (Oketcho
et al., 2001). The agencies stated that “commitment and keenness of the service
providers” facilitated their achievements as did financial support from government
and donors, political will and the “participation of stakeholders at the different levels”
(ibid.: 26). The participation of community members, due to a scarcity of (trained)
human resources has been detrimental to the successful community interventions
(Oketcho et al., 2001). Fortunately this did not lead to a hands-off approach from the
government and donors as a result. This credits the Ugandan government with the
recognition that community based programmes alone are not a panacea to the
HIV/AIDS epidemic and is reflected as such in a number of policy proposals (UAC,
1996; Barnett et al., 2002).
The main constraints to implementation mentioned in the AMREF/UAC review can
be divided up in organisational, resource based and operational barriers.
Organisationally, a key issue is that the majority of agencies had not seen the NSF.
Furthermore delays in flow of funds from the central offices and bureaucracy were
mentioned as constraints as well as the lack of support for small CBOs to develop
their activities. Co-ordination at a central and local level were also found to be
41
inadequate (Oketcho et al., 2001). Resource constraints to implementation include
inadequate funding for activities, especially at grass roots level. Lack of adequate
trained staff and resources for institution based care led to an increased need for home
based care, carried out by inexperienced family members (ibid.). Finally, at an
operational level it was mentioned that due to the slow nature of behaviour change,
results that are expected within set funding timeframes are often not realistically
achievable (ibid.). Thus if participation is to be encouraged, donors and other
organisations must become more flexible in their institutional approach.
Furthermore, most agencies cited the social, cultural and economical context as a
constraint, including issues such as wife inheritance, poverty, high illiteracy,
stereotyped attitudes and gender inequality (ibid.). Even though political support at
the centre promotes the GIPA principle, support to PWHAs at a grass roots level has
not always reflected a similar level of commitment. Stigma and discrimination thus
remain key issues with regards to policy implementation even though the situation has
improved (ibid.; UNAIDS, 2001a).
4.3.4
Policy Evaluation
At a statistical level impact is being evaluated and has been regarded as a contributing
factor of Uganda’s success (UNAIDS, 1998c). However, even though outlined in the
current NSF (UAC, 2000), at a national level there is considered to be a lack of
monitoring and evaluation to guide implementation and facilitate future programme
design and strategy, thus not providing sufficient necessary feedback. Particularly at
district and lower level the capacity to undertake monitoring and evaluation does not
exist and where it does, it functions merely to meet smaller scale project evaluation
42
needs (Oketcho et al, 2001). Only 3.2% of the agencies perceive monitoring and
evaluation to be a role they fulfil (ibid.).
However, as the literature about Uganda’s policy process repeatedly demonstrates,
policymakers seem to demonstrate openness to feedback and adapt new policies and
procedures accordingly. Examples are the lessons learned for the Uganda AIDS
Control Project (UACP) from the Sexually Transmitted Infections Project (STIP),
which ran from 1994-2000 (Oketcho et al, 2001). Also the attempt to improve the
decentralisation of planning through the development of stronger district development
guidelines (UAC, 2002) as well as the latest development in providing a draft
National Policy Framework (UAC, 2003b). Finally, in order to improve further coordination as indicated necessary by the 2001 review, the Uganda HIV/AIDS
partnership has been developed, to improve actor participation and co-ordination in
Uganda’s response to the epidemic (2003e). All these examples reflect a more
informal feedback loop into policy formulation.
Evaluation and research need improvement, not merely as a medical, quantitative
exercise, but including research into root causes of the spread of HIV/AIDS, such as
causes of underdevelopment, what exposes different groups to susceptible
environments and what pushes them into risky behaviour (Parkhurst, 2001; Barnett et
al., 2002).
4.3.5
From voice to influence
The answer to Question One is yes. Participation in the policy process certainly is
taking place, particularly at the policy implementation level and increasingly so at a
43
policy formulation level. Then, regarding Question Two, as a result of stakeholder
participation has there been an influence on policy content?
Uganda’s multi-sectoral approach includes partners across ministries at a policy
formulation level. However other than an advisory role at the policy formulation
stage, influence at an implementing stage within the other sectors is likely to be
bigger. With 600 of the 717 agencies involved in implementation, and 14 (plus 66 in
advocacy and 11 in advisory roles) only in policy formulation, the highlighted barriers
have been more explicitly stated regarding the implementation phase. It seems
however impossible from these secondary data available to assess whether
participation has been nominal, merely legitimising decisions already made, or a
transformative, empowering form of participation (White, 1996) or if the policy
process itself has been influenced (Kriesi in Houtzager, 1999:4).
But the challenges to participation as embedded in social structures remain. Even
though PWHAs are represented in a number of national bodies and stigma and
discrimination levels have decreased in practice HIV/AIDS related stigma and
discrimination still happens, even by the President. It is rooted in social norms and
values. Similarly, women face many challenges to participation. Even though
constitutionally Uganda provides the framework to enhance women’s representation
the reality faced by women at grass roots level remains difficult. This is reflected by
the low number of women in decision making positions and a legal framework that
neglects to enforce equality in women’s rights and participation (CEDAW, 2002;
HRW, 2003). Simultaneously women continue to be blamed for bringing AIDS in the
44
family, which certainly will not encourage participation, fuelling the spread of
HIV/AIDS among women (HRW, 2003).
Even though many challenges to participation exist, judging the open stance towards
change and adaptation of policy guidelines and frameworks displayed in Uganda, one
can only assume that some voice from civil society and other agencies will have
filtered through, either via advocacy efforts or more direct policy influencing. The
political legitimacy the current government has created for itself contributes to the
willingness to adopt policies, as people believe that something is being done for them,
despite the challenging legal framework. The dichotomy between this top-down
governmental push in the fight against HIV/AIDS and a seemingly pluralist bottomup approach certainly with regards to implementation, creates an interesting space for
policy dialogue (Putzel, 2003). The answer to Question Two is therefore also
affirmative, which leaves us to look at policy impact.
45
4.4 Policy impact
In the 1993 MACA one policy stipulated that "all Ugandans have individual and
collective responsibility to be actively involved in AIDS prevention and control
activities, in a co-ordinated manner, at the various administrative and political levels
down to the grassroots level" (UAC, 1993). This early policy has shaped both the
policy environment as well as the policy response in such a way that it must be
highlighted as Uganda’s key policy success (UNAIDS, 2001a:7; Hogle, 2002). Other
key policies have included; wide-spread HIV/AIDS education campaign, condom
distribution, clean blood supplies, care for orphaned children, establishment of Aids
Control Programmes in eleven key line ministries and supply of treatment for
opportunistic infections (UNAIDS, 2001a:7).
The fact that many policies were
implemented at an early stage has given Uganda the edge, leading to their (early)
success.
Evidence of this success has been documented in a number of areas. A decrease in
prevalence rates has taken place, which could be due to more people dying from
AIDS than people getting infected, but also a proven decline in incidenceix rates,
particularly in the youngest age group (15-19) has been reported, both in urban and
rural areas (Parkhurst, 2002:78; UNAIDS, 2002c:2; Hogle, 2002). The wide-spread
education campaign and condom distribution certainly contributed to behaviour
change which led to a decrease in multiple sexual partnerships, a decrease of casual
sex, an increase of mean age at first sex for young adults and increased condom use
(Hogle, 2002; World Bank, 1999:92; UNAIDS, 2002c). An unexpected influence on
behaviour change was the personal experience of seeing loved ones dying creating a
situation in which people suddenly realised they were at risk, a ‘condition’ necessary
46
to create behaviour change (World Bank, 1999; Ainsworth and Teokul in Barnett et
al., 2002:79).
In reality attributing results to a specific policy is difficult. Sociological, cultural,
economical and political factors influencing both country context and the policy
environment have all affected the way change took place within Uganda (Hogle,
2002). Parkhurst (2001) describes these policy environment elements as ‘unwritten
policies’. He highlights the role of the President, stigma reduction, playing the
international donor scene to access funds and openness as having played a crucial role
contributing to prevalence decline. They will have enabled action before a wide range
of policies were in place, prior to 1992 when rates started to decline (Parkhurst, 2001;
UNDP, 2001). Early health focused AIDS control policies were however already in
place by then and will have contributed to early success (Parkhurst, 2001; Stover et
al., 1999).
Hogle (2002) attributes high level political support, the multi-sectoral response,
decentralisation and early implementation of multi-level behaviour change
communication (BCC) as contributing factors to Uganda’s success. Multi-level BCC
led to interventions aiming to reach both key target groups as well as the general
population, focussing on women, youth, stigma and discrimination (ibid.; Parkhurst,
2001). Furthermore the role of FBOs and religious leaders is highlighted, as is
Voluntary Counselling and Testing (VCT) as a prevention strategy as early as 1990.
Condom social marketing has further contributed to prevention, as has an increased
emphasis on STI control through the STIP project from 1994-2000 (Hogle, 2002).
47
Therefore, with regards to Question Three only one conclusion can be drawn; a
combination of policy content and the influence of the external environment have
contributed to the decrease in adult HIV prevalence and have subsequently influenced
one another (Hogle, 2002; UNAIDS, 2002c). The diversity and high level of
community and NGO based participation further enforced the success particularly at
the implementation level. The multi-sectoral policy response, as well as the
decentralised policy environment have contributed to the high level of participation at
the implementation phase (Hogle, 2002; Parkhurst, 2001). Other factors that will have
influenced the level of success will be discussed in the conclusion.
48
4.5 Conclusion
The interconnectedness of the context in which policies are developed and
implemented and in which participation is allowed to take place must be taken into
account when trying to analyse Uganda’s success story, and the HIV/AIDS policy
process in general. As Table Three (page 53) indicates, a dynamic range of issues
impacts both on the level of stakeholder participation in the HIV/AIDS policy
process, as on the policy process itself and on one another. Whilst not suggesting this
list is complete, it gives an idea of issues to look at when analysing the fifth ‘phase’ of
the policy process.
Within this complex context it is impossible to assume a ceteris paribus situation and
analyse policies on their own. Barriers and enabling factors, as indicated in Table
Three can contribute to the identification or creation of “windows of opportunity” or
policy spaces in which policy reform and participation is negotiated. This does not
mean that policies are not important. However, one policy might lead to completely
different outcomes dependent on context, as demonstrated by the differences in
prevalence rates within Uganda (UNAIDS, 2002c). Regulatory laws and policies
however play an important enforcing role and currently need a lot of improvement if a
truly enabling environment is to be created in which both stakeholder participation as
well as improved policy impact will be allowed to take place.
49
Table 3: External context factors influencing participation and the
HIV/AIDS policy process
INFLUENCING FACTORS
Uganda
POLITICAL
Participation increased over
last two decades, int. donor
community to adapt;
participation marginalised
groups difficult
Well established, incl.
International actors
High
Power issues between
ministries, donors, in
communities
Civil society – state/NGO
relation ships
Openness re: HIV/AIDS,
level of awareness
Advocacy levels
Stigma & discrimination
Political will or leadership
Multi-sectoral approach
Analysis of existing policies
State structure
Regulatory & Legal
Framework
Historical context
CULTURAL/SOCIAL
Position of women, power
issues
Position of PWHA
Status of children, orphans
Openness, reality
Social indicators e.g.
literacy level
Stigma and discrimination
INSTITUTIONAL
Decentralisation
Participation
institutionalised
Co-ordination
ECONOMICAL
Resources (financial)
Poverty
Reasonable, TASO allowed
to exist since 1987
Decreasing trend, but room
for improvement
High, some challenges at
local levels
Good at implementation
level, less influence at
formulation level
See paragraph 4.2.10
Sustainability ‘movement’
system questionable
Weak
Crisis situation allowed for
drastic policy reform
Enabling constitution, in
reality social inequality,
weak legal framework, less
time for participation
Representation in no. of
bodies but room for
improvement
Low participation levels
Context of seeing loved
ones dying leading to risk
awareness
Low, especially for women
(see Table 1).
Reproducing existing power
dimensions
Issue capacity local level,
further decentralisation
needed
Room for improvement,
incl. donor procedures
Limited distribution of NSF,
need for further
decentralisation
Sufficient nationally, limited
locally
High, need for local
differences to be assessed
50
Even though attribution to influence is difficult, participation must be considered of
high importance when it comes to policy design. There seems to be an encouraging
trend of this taking place in Uganda, but there is certainly room for improvement, as
proxy studies in the health sector demonstrated. Possibly with more time the level of
participation will grow to be transformative or at least to a level at which influence
can be identified. Maybe for Uganda, as with its slow transformation to democracy
(Ottoway, 1999), this soft approach will work. Donors and international organisations
wanting to support the policy making process in Uganda, must give capacity building
support and allow time for this transformation to take place.
51
CHAPTER FIVE
MAKING A DIFFERENCE: RECOMMENDATIONS
Stakeholder participation in the HIV/AIDS policy process can make a difference, on
policy content and impact. However, to attribute this difference to participation or
policy per se is very hard. The crucial factors influencing both stakeholder
participation and the range of phases in the HIV/AIDS policy process are embedded
in the policy environment and country context.
It is therefore recommended that the external context and its dynamics, some of which
are highlighted in Table Three become a more formalised ‘phase’ in the analysis of
the HIV/AIDS policy process. This would bring an analysis of the policy process
more in line with for example an external analysis in commercial marketing, or the
assumptions and analysis made when drawing up a logical framework. Analysis of the
external context could support the identification of policy spaces, or “windows of
opportunity” either by the policy makers themselves or by interest and advocacy
groups, trying to influence the process. Recognising the dichotomy between a topdown approach to immediate action in the HIV/AIDS context and a bottom-up
approach to finding out local realities and needs influencing policy spaces would
further contribute to the policy participation discourse
Secondly, research is needed into the factors influencing participation in the
HIV/AIDS policy process, such as those mentioned in Chapter Three. Research into
the multi-sectoral aspect of the HIV/AIDS policy process is highly recommended.
52
Firstly by using HIV/AIDS as a case study, research on the challenges of a multisectoral policy environment would make a welcome contribution to the existing
participation literature. Secondly, as multi-sectoralism reflects a more realistic
approach of people’s livelihoods, recommendations and lessons learned could be used
for expansion towards a holistic approach for other social policies as suggested by
Devereux and Cook (2000). Also research regarding the impact of HIV/AIDS on the
dynamics of social exclusion deserves further attention (Parker et al, 2003).
Finally everyone must recognise the limitations that current institutional and
organisational structures have. In order to reach institutionalised participation a lot of
time must be allowed for, enforced by a long term commitment to institutional
capacity building at government and civil society level. Donors and international
institutions must acknowledge these needs and offer their support. Furthermore they
must assess their own institutional barriers, including their tendency to exercise power
to enforce ‘good practice’ that they, not the primary stakeholders have identified. If
participation is to be genuine, an open-end approach to outcomes must be considered,
not a predefined programme package.
Recognising that HIV/AIDS is a relatively new ‘sector’, evidence based learning and
sharing is crucial to make a difference to policy and programme development and
ultimately to the improvement of the lives of those infected and affected by
HIV/AIDS. And even if participation is not leading to policy influence, the
empowering effect it can have at a personal level is worth the exercise.
Empowerment, which in the context of HIV/AIDS in the world today will be able to
save lives.
53
i
The language used in the HIV/AIDS context has been highly debated. This dissertation will use
HIV/AIDS to facilitate the reading flow rather than HIV and AIDS, even though the latter is more
appropriate as it reflects the fact that HIV and AIDS are two considerable different conditions.
ii
Absolute number of infected people in a population at a given time (Barnett et al, 2002:49)
iii
Over 60,000 poor women and men from 60 countries were interviewed in an effort to understand
poverty from the perspective of the poor. (www.worldbank.org/poverty/voices/overview.htm)
iv
The Global Network of Persons Living with HIV/AIDS (GNP) and the International Community of
Women Living with HIV/AIDS (ICW) have officially adopted the acronym PWHA to designate people
infected with or affected by HIV/AIDS (UNAIDS, 1999:1)
v
Opportunistic infections such as Tuberculosis, Hepatitis C and a range of cancers, proliferate in
people with a weakened immunity, which could be caused by HIV
(www.aidsmeds.com/lessons/StartHere8.htm)
vi
African Medical and Research Foundation
vii
The Heavily Indebted Poor Countries debt relief scheme
viii
Neither the UAC nor UNAIDS Uganda could supply of copy of this review as the soft- copy was
lost and in the process of being re-typed. Comparison with the 2001 review would have allowed for
analysis of change in the level of stakeholder participation
ix
Number of new infections occurring over a specific time period (Barnett et al, 2002:49)
54