Across the range of research outputs undertaken by the project, a number of different policy recommendations have been produced. These are categorised under five headings:
- Policy implementation
- Co-ordinating effort
- Human and Financial Resources
- Policy implementation
Government and civil society processes should mainstream or ‘re-mainstream’ HIV/ AIDS issues at all levels. There is a danger that some level of complacency has set in due to earlier achievements in addressing the pandemic, in part due to the successes of antiretroviral therapies (ARTs), as highlighted in recent South African research. In particular, the political will demonstrated when HIV policies were being formulated in the early 2000s should be reignited.
Experience in Tanzania suggests that all governments should ensure that HIV/AIDS policy and other instruments are current. For example, Tanzania is still using what appears to be the outdated National HIV/AIDS Policy of 2001. Since its launch there have been developments such as the introduction of antiretroviral (ARV) drugs in the country, new international declarations and targets, as well as new knowledge from research. Governments should also put in place mechanisms to track policy slippages and take corrective measures to avoid future unnecessary slippages. This includes developing ethical guidelines and a stronger monitoring and evaluation frameworks.
As part of these M&E frameworks, more effective, disaggregated indicators also need to be developed. For example, it is recommended that the Tanzania HIV and Malaria Indicator Survey (THMIS) should include disability-sensitive indicators. Provision of HIV-disability data will assist in planning and financing of HIV education for this group with special needs. The units for HIV prevalence data reporting should also be disaggregated to the district level instead of regions. That will help to eliminate generalization, over-reporting or under-reporting of regional HIV prevalence statistics.
- Co-ordinating effort
It is clear those governments and their administration entities alone are not capable of addressing HIV/AIDS in any of the countries looked at in this project. Efforts to enhance coordination and collaboration at all levels are necessary. Strengthened partnership and coordination between government and CSOs is likely to bear positive results in the fight against HIV/AIDS.
The Tanzanian research undertaken as part of this project recommends that the government there should work in collaboration with cultural and religious leaders and persuade them to support efforts directed at addressing HIV/AIDS. Where there are irreconcilable differences (such as condom use) ways should be sought to mutually agree on the ways forward.
However, as the Ugandan research illustrates efforts to formalise and institutionalise co-ordination at all levels is challenging. Here, it is suggested that the centrality of financial payments as the basis for deciding on whether or not to get involved in joint coordination activity, is crowding out other motivations. The continued reluctance to prioritise coordination in local resource allocations and the blurred responsibility arrangements (i.e. who should co-ordinate) suggest that governments should consider ring fencing needed resources for inter-agency coordination under Local Government health budgets and monitor that they are spent for the intended purpose.
- Human and Financial Resources
An issue of concern across all four countries is the growing pressure both on human as well as financial resources. In South Africa and Tanzania, the shortage of health workers and the congestion in health facilities was noted. In the Tanzanian case, it is recommended that government should consider training and facilitating community health workers/home based carers and should pursue capacity building to people living with HIV/AIDS (PLWHA) on treatment, home-based care skills and orphan support skills.
South Africa already has a strong base of almost 80,000 community healthcare workers (CHWs). The original functioning of the programme through a partnership between the public sector and community-based organisations as well as more specialised NGO’s could check inefficiencies. However, current proposals to ‘re-engineer’ the role and status of community healthcare workers needs to be reviewed. It is recommended that these CHWs should ideally be deployed mainly in communities rather than as auxiliary staff at clinics. Important as the clinic based tasks may be, their real value derives from the status they enjoy in communities and the ability they have to promote public health values and support patients.
Aside from the issue of how they are managed – whether through independent entities or clinical staff, there needs to be a policy decision about the status of these workers. In the past they have been treated as volunteers – receiving small amounts of financial support paid in the form of a stipend with these sums expected to cover expenses. Under proposed re-engineering they are individual service suppliers but as such paid well below the wages that public sector workers would expect for similar effort. In the long term this will be a cause of increasing demoralisation.
If sufficient numbers of CHWs are to be deployed who are adequately compensated much larger budgetary allocations for them will be needed. This will placed renewed pressure on already contacting budgets. While recognising this there is a need for public funding, support for preventive work and for follow-up and retention of HIV positive patients lost to the programme will need to be considerably more generous. Ideally, all three countries involved in this project could learn useful lessons from each other on the roles of CHWs.
Inevitably, in any discussion on resources, maintaining public support for universal treatment emerges as a key issue. This should be the focus of sustained effort and requires better official communication about the scale of the tasks that still need to be completed. This issue will need to be addressed by governments and donors alike.
The level of resources available to those living with HIV/AIDS is of course a further issue that cannot be treated in isolation of medical responses. In order to ensure that that PLWHA can meet basic needs, governments should increase their targeted effort towards poverty reduction through such initiatives as infrastructure improvement, education, small/medium enterprise skills for income generating activities etc., which in turn will enhance the capacity of people to avail, access and accept health services.
It has been noted above that Governments alone cannot address the huge challenge of HIV/AIDS on their own. In all three countries the project’s KEFs have benefited from inputs describing the rich contribution of CSOs, either working in close co-operation, independently of the state or, indeed, sometimes in peaceful conflict with the state. All of these must be seen as important parts of civil society’s role. If CSO’s simply become service delivery extensions of a controlling state they their much needed capacity for creativity and innovation will inevitably be weakened.
Thus, for example, independent South African AIDS activism can still make key contributions to the struggles to end the HIV/AIDS pandemic. More generally an independently managed NGO sector plays a vital role supporting PWLHA and providing public education and public funding for this sector should be maintained. Moreover, as our South African research has shown, the connection of grassroots people with public administration proves to be harder without collective movement efforts. Without being associated with the Treatment Action Campaign’s reputation it would have been difficult for grassroots groups to engage the state at the local level. Such collective action needs to be recognised and legitimised.
Unfortunately, it is not always the case that such recognition and legitimacy is forthcoming. Under President Zuma’s administration, HIV policies have improved significantly but participation and civil society democratic space has shrunk prospects of deepening democracy at grassroots level. Violent police handling of social justice protesters has increased, and provincial government repression, intimidation, death threats, active state-sponsored divide and rule in civil society have, in some areas at least, become more visible. This needs to be highlighted and addressed at the highest levels. The South African research concludes that effective grassroots participation in policy process occurs more in non-institutionalised and alternative platforms and less in state dominated institutions. State institutions tend to be co-optative, hegemonic and less effective in driving policy change. Civil society organisations need to resist their incorporation into the state’s policy machinery.
While not advocating that civil society becomes part of the state machinery, in Uganda, it is seen as imperative that CSOs become part of the government funding mechanism of HIV/ADS programme, including implementation of the law passed in 2014 to establish the National AIDS Fund and to reduce dependence of both government and CSOs on donors. This could help to increase resources for vulnerable groups.
In addition, it is recommended that independent technical support should be provided to CSOs and communities so that they can improve their lobbying and advocacy abilities which will improve, among other things, their capacity to challenge social norms and practices that weaken the response to HIV and AIDS. Moreover, given the centrality of particular civil society constituencies, their diversity and strong motivations in aggregation and representation of interests, future sources of funds should consider institutional funding to constituency coordinating agencies. This will ensure that lead agencies focus beyond institutional survival and have and indeed will spend the resources on constituency coordination priorities. This recommendation may have implication for the design of the AIDS Trust Fund planned by the Government of Uganda.
Finally, for public officials to effectively engage with citizens and civil society organisations they need to be sensitised to the importance and legitimacy of such engagement; incentivised within institutional level performance management processes to do so; and trained so that they have the necessary skills to support effective and constructive engagement. Across all four partner countries the project has demonstrated that few responsible public sector training institutions prioritise this type of capacity building. Instead they focus on a narrow range of instrumental and technical skills. However, alliances between health professional and CSOs, including patient’s movements can lead to shifts in the power asymmetries between public administration and citizens, with benefits for both. These alliance need to be fostered.
HIV stigma poses a barrier to prevention, testing and care efforts (Mahajan et al., 2008). It is essential that policy makers and those delivering policies should be aware of the potential for HIV prevention materials to result in HIV stigma. Arising from this project’s research in South Africa and reinforced in all of the KEFs in Tanzania, Uganda and South Africa, a key recommendation is that the HIV stigma scale developed as part of this project (or other locally developed, valid and reliable stigma scales) be used to monitor HIV stigma to assess whether stigma interventions are needed. The HIV stigma scale could also be used to assess whether stigma interventions are working. Internalised stigma measures such as the People Living with HIV Stigma Index should also be used to assess the degree of stigma and discrimination being experienced by people living with HIV.
Our research also indicates that HIV prevention messaging contains far more stigmatising content than care, testing and anti-stigma campaigns. While in many cases it is necessary to use potentially stigmatising content to convey important information to those at risk of HIV, prior evaluation of the content can enable public sector (and other) developers to strike a balance between the information being disseminated and the likelihood that its composition or phrasing may unduly impact on HIV stigma, and as a consequence, impact negatively on the lives of those living with HIV/AIDS.
Assessing stigmatising content of HIV prevention messaging should be a priority for stakeholders involved in the process of designing, evaluating and implementing this type of messaging. A tool that quantifies the stigmatising content of HIV messaging should be used to provide useful guidelines for developing HIV communication materials.