Lessons Africa has learnt in 15 years of responding to HIV/AIDS - The social contract

Cross-cutting themes

Importance of top government leadership

Establishing PLHA groups and GIPA

Mobilizing national and international resources

Training and use of local managerial/technical talent

Mobilising local communities

With over 24.5 million people in Africa infected with HIV (most of whom do not know they are infected) and tens of millions affected by the epidemic's impacts, Africans at all levels of society - both those who are HIV-positive and those who have escaped infection thus far - are together in the same storm-tossed boat. Keeping the boat afloat and sailing forward will require everyone doing their part in an atmosphere of social tolerance and solidarity.

The epidemic affects everyone’s quality of life in one way or another. But stigma – the shame and blame associated with AIDS - adds an extra layer of suffering to the already difficult lives of those infected with the virus, and the lives of those close to them. Another of its pernicious results is that it hinders HIV-infected individuals from participating in the processes of finding solutions to combat the AIDS epidemic.

If society as a whole does not provide care for those who become infected with HIV, what do people have to gain by testing for their sero status? If people know they are HIV-positive but face rejection if they tell anyone, why should they take measures (such as insisting on condom use) to avoid infecting others when such measures would mark them as possibly infected? If stigma brings active discrimination, endangering positive persons’ jobs or access to medical systems, why should they participate publicly in broad prevention efforts – a role in which their voices have proven extraordinarily effective?

This is not to deny that people living with HIV/AIDS have already contributed greatly at all levels of the response. However, their involvement has often been at great personal cost due to stigma, discrimination and what has been termed a "culture of silence" which prevents AIDS being talked about openly and honestly.

Further progress against the epidemic requires a "social contract" that discourages stigma, encourages people to find out if they have HIV, and promotes understanding, solidarity, and sexual prudence among all persons (both infected and not). Only by "signing on" to such a contract can whole populations become joint stakeholders in a society of tolerance and sexual precaution.

A broad range of signatories

Of all the signatories to such a contract, governments have a special responsibility to be willing and active participants. Time and again, experience has shown that effective national responses require political commitment from a country’s highest political level. Such commitment leads to high-profile advocacy and helps bring in all the sectors and players, along with the necessary human and financial resources. It is also critical for making hard political choices often involved in adopting intervention methods that really work – such as making sex work safer or bargaining at a national level for better access to care.

Most governments are buying into the HIV/AIDS social contract, increasing their commitment to fight the epidemic, and putting it high on national agendas. The continuous rise of the HIV infection rate in Africa to date and the devastatingly visible impacts of AIDS make an inadequate response untenable today.

Governments cannot be expected to do it all

The social contract is not just top-down, however. The national political structures of a country are not its only sources of social binding and decision-making.

Other levels of government – state or province, district, municipal, village-level – all have roles to play. And those who hold political or administrative posts can act not only in their official capacity but as influential individuals.

Leadership can be exercised in all sectors of society. Religious leaders can speak out to remind the fearful and bigoted that persons living with HIV/AIDS are also God's children, and that all great religions require their adherents to help those who are ill. Businesses can make their hiring practices more inclusive and their working arrangements more friendly and expensive to persons living with HIV/AIDS and their families. And a whole range of NGOs and CBOs and their international partners can continue to help with service delivery, advocacy, and resource mobilization.

GIPA: Solidarity in action

The greater involvement of people living with or affected by HIV/AIDS and representative organisations (known by its acronym, GIPA), is a key feature of the social contract. It also provides a prime example of how the social contract can be made to work if all signatories accept the principle and act to implement it.

The goal of GIPA is to increase the effectiveness of AIDS policy and programming by including those living with the virus - with or without being infected - at all decision-making levels.

This of course brings up a major issue in the African context: few people actually know their HIV status. This is partly because of the lack of voluntary and confidential counselling and testing services generally, and because stigma and ignorance prevent people from getting tested.

Examples of Best Practice

Botswana: Commitment and follow-up from the highest political level

Leadership issues summary

Leadership level: highest national political leadership

Contribution to success: clear, consistent attention to the overall issue; understanding of the necessity of multisectoral response; willingness to invest significant resources; understanding of the care needs of persons living with HIV/AIDS

Botswana’s Head of State, President Festus Mogae, provides a strong recent example of a national leader who has understood and accepted the challenge of building a national response to the epidemic that avoids an "us/them" mentality and emphasizes the social contract.

In his capacity as chair of the newly created National AIDS Council (which meets regularly to oversee the national response), President Mogae discusses HIV/AIDS as a national crisis and development priority at all major events. In January 2000, the President publicly chastised Botswana’s media organisations, saying they had failed to help remove the stigma attached to HIV/AIDS. His statement emphasised solidarity with HIV-positive people, telling Botswanans that "as long as we still talk derisively about the HIV/AIDS virus and its victims, ... for as long as we talk as if any one of us is immune to infection ... the pandemic will remain the invisible monster that stalks us in the darkness of ignorance and decimates our people".

President Mogae’s words of solidarity have been backed by deeds. The country’s most recent budget allocated significant national resources to HIV/AIDS: US$ 15 million for implementation of a multisectoral National Operational Plan (putting HIV/AIDS into the planned activities of government ministries and partners in the private sector and among NGOs), US$ 6 million to prevent mother-to-child transmission, US$ 5 million for the newly established National AIDS Coordinating Agency, and US$ 6.8 million for home-based care.

In a situation such as Botswana’s, where over one-third of the adult population has HIV and many are already falling ill, the priority and resources assigned to home care is particularly important. Among the essential services provided under Botswana’s home-based care effort are home nursing, counselling, and provision of nutritious food for patients. To support the latter, the government has established a "Food basket" for HIV/AIDS patients, which is administered through the Division of Social Welfare.

Malawi, South Africa and Zambia: International GIPA programme bolsters national AIDS responses

Leadership issues summary

Leadership level: persons living with HIV/AIDS working with range of ministries and supported by international agencies

Contribution to success: willingness of national partners to take GIPA seriously

Opportunities: use success of initial placements to extend programme to more countries and sectors

In 1998, the United Nations put the GIPA principle into practice by implementing a pilot programme placing persons living with HIV/AIDS as National United Nations Volunteers (NUNVs). The pilot project in Malawi currently has 12 NUNVs serving at 11 host institutions, while Zambia has had 21 NUNVs in government, NGOs and the private sector. In South Africa, a "field worker" arrangement was made, placing all volunteers within private sector companies.

Although their job titles vary, their primary function at these institutions is to give HIV/AIDS a human face and voice - and to show that individuals living with HIV/AIDS are not the problem but part of the solution. They do so by:

sharing their experience of living with HIV/AIDS with staff and management within the host institutions and companies

carrying out real jobs and responsibilities, rather than "token" jobs that make no difference to the status quo

establishing PLHA support groups and doing one-on-one HIV/AIDS counselling.

A glance at host institutions gives an indication of the reach of the programme. Host institutions in Malawi have included the Ministry of Agriculture and Irrigation, Agricultural Development and Marketing Corporation, several hospitals and major industrial companies, and a variety of NGOs. Host institutions in Zambia have included the Ministry of Community Development and Social Services, Ministry of Youth, Sport and Child Development, Ministry of Defence, Army, National AIDS Programme, prisons, and a variety of service-providing NGOs and health institutions. As mentioned, all South African volunteers have been placed in private sector businesses.

Burundi: National association of HIV-infected and -affected people runs care and support centre

Leadership issues summary

Leadership level: Persons living with HIV/AIDS, supported by international donor

Contribution to success: courage to go public; determination to follow through with implementation

Opportunities: establish existing facility as a centre of excellence which can increase national capacity

In 1993, a small group of Burundians living with HIV/AIDS publicized their sero- status in a media event that was reported nation-wide. Such an action was risky because it had never been done before, but the overall reaction in Burundi was surprisingly supportive. Shortly after, the group formally established itself under the name "Association Nationale des Séropositifs et Sidéens" (National Association of Persons living with HIV/AIDS, or ANSS) with the aim of dispelling myths about AIDS that were widely held among Burundians. Over time, the group expanded its membership to include those who, though not HIV-positive, are nonetheless affected by the disease (usually family members of HIV-positive persons), those not yet ready to disclose their status, and others who had personal reasons to join.

With the help of a French NGO, ANSS opened a care and support centre called "Turiho", which in the Burundian national language Kirundi means "We are alive." Its main activities are currently prevention activities, promotion of voluntary counselling and testing, and medical care and psycho-social support for individuals living with HIV/AIDS (including home-based care and nutritional support). Staffed by permanent, paid employees in order to ensure high quality and availability of services, the centre is managed by infected and affected people recruited on the basis of their involvement in ANSS’s work.

Zimbabwe: Bringing together all the partners at local level

Leadership issues summary

Leadership level(s): local and international health workers, religious authorities, persons living with HIV/AIDS, local health authority

Contribution to success: willingness to go ahead before national health services, have capacity or resources to assist; understanding that home care is most cost-effective way of meeting local needs

Gaps and insufficiencies: so far, traditional leaders have not been recruited to actively help the programme

Opportunities: largely dependent on ability to mobilize more resources

The Chirumhanzu Home-Based Care Project is based in Chirumhanzu District, a farming area in the central Midlands province of Zimbabwe, which has been hit very

hard by the HIV/AIDS epidemic. The project grew out of an initiative in the early 1990s by senior nurses, Dominican Sisters, and expatriate doctors at St. Theresa's Hospital.

The project promotes HIV/AIDS awareness and prevention, both among the general public and among target groups such as sex workers, students, and people being treated for sexually transmitted infections. The project is organisationally separate from the hospital, but collaborates fully with it in referrals and has space in the hospital wing built by the Dominican Sisters. A full-time nurse paid by the hospital works with the project, while the group's full-time coordinator is paid a small honorarium from project funds provided by the NGO SolidarMed. The Ministry of Health nurses provide most materials and drugs used in the home-care service.

The project encourages persons infected or affected by the virus to participate in all aspects of the project. This principle is important not only in itself, but also because it raises the profile of persons living with HIV/AIDS within the community and thus serves to reduce stigmatisation.

Most of the project's volunteer home caregivers are recruited through the district's church parish councils and other local religious organisations. Criteria that guide the councils in their recruitment of these volunteers include compassion and willingness to provide spiritual support and care where needed. There are currently about 30 volunteers in Chirumhanzu. The majority of project members are either HIV-positive or are directly affected in some way by the virus - for example, having had a family member who died of AIDS.

As yet, the project has not been successful in enlisting the active support of local chiefs or village health workers, although the latter give passive support or tacit acceptance, which is essential to the project's work.

South Africa: Bambisanani – an EQUITY Project

Leadership issues summary

Leadership level: Partnerships with the cooperation of several organisations that provide funding and other support

Contribution to success: clear articulation of immediate needs, decentralisation, development of organisational framework, provision of training, understanding the need for multisectoral response

Opportunities: mobilisation of resources, implementation, measurement and evaluation

EQUITY is a USAID-funded project created to support the South African government in providing integrated health care.

‘Bambisanani’, meaning ‘in partnership to help each other’, is a multisectoral project involving organisations such as the Employment Bureau of South Africa, the Mineworkers Development Agency and the Planned Parenthood Association of South Africa. Their objective is to enable selected communities in the Eastern Cape to provide comprehensive care that will contribute to the improved quality of life of persons living with HIV/AIDS, their families and the communities in which they live. Repatriated migrant workers are one particular focus.

Main activities include community capacity building, home-based care, care and support for children in distress and support for groups and income-generating activities.