Southern Africa remains the region worst-affected by the HIV/AIDS epidemic. A combination of factors seem to be responsible for this including: poverty and social instability, high levels of sexually transmitted infections, the low status of women, sexual violence, high mobility (particularly migrant labour), and lack of good governance.

South Africa has the sixth highest prevalence of HIV in the world, with 18.8% of the population estimated to be infected. The UNAIDS 2006 Global Report, estimated that 320 000 people died of AIDS related deaths in South Africa during 2005. South Africa is regarded as having the most severe HIV epidemic in the world

New infections are still increasing with no signs of reaching a natural limit. The total number of South Africans living with the virus at the end of 2005, was estimated by UNAIDS to be in the region of 5.5 million. This annual survey uses a statistical model to estimate the prevalence of HIV in the population based on the prevalence among women tested at state antenatal clinics. The national average of HIV+ women attending antenatal clinics in 2005 was 30.2%. The province of Kwa-Zulu Natal continues to have the highest prevalence at 39.1% followed by Mpumalanga at 34.8%.

Efforts to stem the tide of new infections have only had limited success, as behaviour change and social change are long-term processes, and the factors that predispose people to infection – such as poverty, illiteracy, and gender inequalities – cannot be addressed in the short term. Vulnerability to, and the impact, of the HIV/AIDS epidemic is proving to be most catastrophic at community and household level. Hundreds of people of all ages die in South Africa every day of AIDS related diseases. The hardship for those infected and their families begins long before they die, with the stigma related to suspected infection, the fear and despair that often follows diagnosis, the loss of income and support when a breadwinner or caregiver becomes ill, the diversion of household resources to provide care, the terrible burden upon family members, particularly children caring for terminally ill parents, and the trauma of bereavement and orphanhood. This all happens in a society where approximately 61% of South Africa 's 18 million children live in poverty and 7.9 million people are unemployed (this equates to an unemployment rate of 40.9%).

Obtaining accurate statistics on the number of children orphaned as a result of AIDS is problematic: if orphans are defined as children under the age of 17 whose mothers have died, UNAIDS estimates that there were 1 200 000 orphans due to AIDS living in South Africa at the end of 2005.

For many years, the burden of care and support has fallen heavily on the shoulders of impoverished rural communities, where sick family members return when they can no longer work or care for themselves. Community-based care has been promoted as the best option since it would be impossible to care properly for hundreds of thousands of people dying from AIDS in public hospitals. However, it is dangerous to assume that communities have limitless resilience and capacity to care for dying people and provide for those they leave behind. There is an acute need for social protection and interventions to support the most vulnerable communities and households affected by this epidemic.

Women face a greater risk of HIV infection. On average in South Africa there are three women infected with HIV for every two men who are infected. The difference is greatest in the 15-24 age group, where three young women for every one young man are infected

The South African Government's response to the epidemic is grounded in the HIV/AIDS and STD Strategic Plan for the period 2000 – 2005. The purpose of the plan is to provide a broad national framework around four priority areas: prevention; treatment, care and support; research, monitoring and evaluation; human and legal rights. In November 2003, after considerable sustained pressure from advocacy groups, the government adopted the Operational Plan for Comprehensive HIV and AIDS Treatment and Care, which included the provision of antiretroviral (ARV) therapy in the public health sector. The roll-out of the ARV programme is proving a slow process. This is partly because the Department of Health needs to address major capacity and infrastructure constraints but also because it continues to broadcast confusing messages about the role of nutrition and traditional medicine, and the safety and efficacy of registered drugs that have been provided in the private sector (and at taxpayers’ expense to MPs) for many years. By early 2005 only approximately 30 000 patients were receiving ARV therapy through the state programme. The Operational Plan commits the government to providing ARV treatment to 1,650,000 people who need it by March 2008.

The AIDS Foundation of South Africa recognises that the most effective avenue by which to support successful prevention efforts and secure access to effective, comprehensive treatment in vulnerable and marginalised sectors of society is to work in partnership with local community-based organisations (CBOs). The Foundation is a strong advocate of the view that communities should be participants in addressing their needs rather than objects of charity. Communities must be allowed to identify their own concerns and the responses that are feasible with the available resources. Civil society organisations, particularly CBOs are well placed to play a very strategic role in addressing the HIV/AIDS epidemic because of their close proximity to those affected. CBOs can draw on the support of committed community members, which is essential if interventions are to be affordable and sustainable. For this to happen, more funding needs to be leveraged for community responses.

While government policy supports the important role of CBOs in the fight against AIDS, its national and provincial AIDS programmes face many challenges in providing financial and technical support to these organisations. There are frequent delays in the approval and disbursement of funds; funding is usually only committed for a year at a time, with no guarantee of further funding; capacity building activities are often haphazard and are not built into a broader programme of ongoing monitoring and technical assistance.

In addition, government and donor funding in South Africa is skewed in favour of national mass media programmes and scientific and academic research, with only a limited level of funding being directed at community driven responses to HIV/AIDS. There is a pressing need to scale up community interventions, for this is where the greatest degree of vulnerability exists and where the consequences of the epidemic are being most acutely felt.

The information for this section was compiled using a variety of sources including UNAIDS, the US Center for Disease Control, the Department of Health, Health-e, HSRC, the Joint Civil Society Monitoring Forum and the TAC.

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Community

Households, CBOs and faith-based organisations (FBOs) have long borne the brunt of the human tragedy of HIV/AIDS. It is at community level that people living with HIV/AIDS find comfort and support, or suffer rejection and discrimination. It is at this level that awareness is spread or ignorance reinforced. It is through people’s daily interactions with one another that a climate of compassion and solidarity or of fear and neglect is created.

The support and services invested in community responses to HIV/AIDS, and the acknowledgement of those responses, will determine for how long and how effectively they can continue. Many households in South Africa barely survive, through casual work, subsistence gardening or trading, old age pensions or mutual borrowing and assistance. The impact of AIDS has stretched these survival strategies to breaking point in many cases. There is a limit to how many times a person can queue all day at a clinic with a sick relative, how many loved ones a family can bury, how well a grandmother can care for another orphaned grandchild, how many funerals a neighbour can attend or help pay for.

The experience of AFSA and other grantmakers has shown that even small amounts of funding targeted at community organisations providing small-scale day-to-day services to those in need can make the difference between resilience and breakdown. Among the kinds of support needed are initiatives to ensure people can access the documents they need to apply for grants, the services to which they are entitled, assistance with providing home-based care, information and counselling and training.

Health care workers

Health care workers have been overwhelmed by the impact of HIV/AIDS on the public health service, with the majority of resources in many facilities going to treat people presenting with opportunistic infections or dying from AIDS-related illnesses. This has resulted in overcrowding of under-resourced hospitals, meaning that patients cannot receive adequate care and health professionals are working in very difficult conditions. Staff morale is often very low, due both to the poor conditions but also to the distress of being unable to treat people effectively, the fact that many health workers are themselves living with HIV/AIDS and that they bear the brunt of complaints about the health system. The working conditions are made worse by lack of specialised training and staff shortages. In KZN, the worst affected province, 37% of health posts in the province were vacant in early 2005 – and some hospitals did not have pharmacists.

While many health workers have responded to the crisis by leaving the country to work in better-resourced clinics and hospitals overseas, many others have joined the lobby for access to treatment as part of a wider campaign to build the public health service.

Labour

South African labour unions, through the Congress of SA Trade Unions (COSATU) have long supported the demand for adequate care and treatment for people living with HIV/AIDS. Workers are affected by HIV/AIDS as breadwinners who risk losing their income if they become sick, as partners of people with HIV/AIDS, as caregivers to sick people, as guardians to orphaned children. In the early days of the epidemic, the unions had to confront open discrimination by employers, such as compulsory HIV testing, and retrenchment of workers who are HIV positive or sick. Mineworkers were among the first group of workers recognised to be vulnerable to HIV infection, due to high levels of mobility, the tendency to have more than one sexual partner, often including sex workers. However, recently, the infection rates among other workers, such as educators and health professionals have risen alarmingly. Unions have individually and collectively sought workplace testing, counselling and treatment programmes, and have fought for the legal rights of infected and affected workers. They are also very concerned about the working conditions of health care workers.

COSATU is a partner in the ANC government but has opposed the ruling ANC over some aspects of its HIV/AIDS policy. It has partnered the TAC on demands for access to treatment and the Basic Income Grant Coalition in the campaign for a universal grant to ensure all South Africans can meet their basic needs. It also engages with business, the pharmaceutical companies and donors to improve access to affordable treatment.

In 2002, COSATU produced a Draft Discussion Document advocating for a national treatment plan.

NGOs

A wide range of NGOs have responded to the HIV/AIDS crisis. They engage in awareness raising, research, training, advocacy, education, welfare and health service provision, materials production, orphan care, counselling and other activities. It is NGOs who have driven the campaign for access to treatment, lower drug prices, improved care and more effective policy on HIV/AIDS.

NGOs’ relationships with government have varied – on one hand the National Association of People Living With AIDS has received government funding, one the other TAC has been attacked by government for its protests and litigation over the response to the epidemic.

Huge sums have been channelled to NGOs by donors but it has often been difficult for smaller organisations to access funds and some donors have tended to push for particular responses, such as orphanages or high-profile prevention campaigns, instead of responding to local needs or priorities.

Services have tended to be fragmented but in recent years, NGOs have come together in coalitions to promote a more coherent response, directories of AIDS service organisations have been developed and information on funding for HIV/AIDS work has been collated.

Bodies such as the Joint Civil Society Monitoring Forum have brought together NGOs, business, government, donors and health professionals to work together in the fight against the epidemic. There have also been more efforts to identify good practice.

Government

In 1987, the apartheid government recognised that HIV/AIDS had the potential to become ‘a major problem’, even though there were few reported infections. By the time of the first antenatal survey in 1990, only 0.7% of pregnant women were infected. In the same year, Chris Hani, speaking from exile, warned that: “Existing statistics indicate that we are still at the beginning of the AIDS epidemic in our country. Unattended, however, this will result in untold damage and suffering by the end of the century.”

The warning was not heeded, either by the outgoing regime in the early 1990s, or by the incoming democratic government as it faced the huge challenge of taking over political control of a divided country.

A National AIDS Convention of South Africa (NACOSA) was established in 1992 and the new ANC government accepted its strategy for fighting AIDS in 1994. However, the response to HIV/AIDS was clouded in controversy, over issues such as the allocation of R14.3 million to a play about HIV/AIDS, the refusal of the government to make HIV/AIDS the responsibility of the President’s Office, government support for a soc-called AIDS treatment that turned out to contain and industrial solvent, refusal to provide the drug AZT to prevent mother to child transmission of HIV.

In 1998, then Deputy President Thabo Mbeki launched a Partnership Against AIDS to mobilise South Africans to fight the disease but soon after that activists, frustrated by the failure of the government to respond effectively to the increasing death toll from HIV/AIDS, formed the Treatment Action Campaign (TAC). The TAC called for access to treatment, including anti-retrovirals (ARVs) for all who needed it. The government responded by opposing the use of AZT as a ‘danger to health’. The Department of Health began to consult with so-called AIDS dissidents – people who rejected the orthodox HIV/AIDS science – and Thabo Mbeki questioned the link between HIV and AIDS, declaring that ‘a virus cannot cause a syndrome’ (Parliament, September 2000).

In 2001, President Mbeki also questioned the statistics on HIV infection and AIDS-related mortality, and again said that racist notions about African sexuality and rape are driving notions about the AIDS epidemic, attacking the TAC, its supporters and opposition politicians who were demanding that the government provide ARV treatment. It took court action to compel the Minister of Health to implement a mother to child transmission prevention programme.

It was only in April 2002 that Cabinet agreed that ARVs should be made available to all rape survivors as post-exposure prophylaxis, and that government should consider introducing ARVs into public health. On 19 November 2003, Cabinet announced the rollout of a comprehensive AIDS treatment plan that would offer free ARVs but Health Minister Tshabalala-Msimang continued to advocate a diet of beetroot, olive oil, African potato and garlic for people with HIV and President Mbeki told the Washington Post that he didn’t know anybody who has died of AIDS. Criticised for failing to meet her own targets for the rollout of the treatment plan, Minister Tshabalala-Msimang questioned whether the number of people targeted would actually want ARVs instead of traditional remedies.

Despite all these setbacks, the rollout is gathering momentum, as health facilities develop the capacity to manage patients on ARVs. The Treasury has dramatically increased the budget allocation to enable the targets for the treatment plan and other HIV/AIDS initiatives to be met.

The government continues to invest in prevention efforts, as the core of its HIV/AIDS strategy and promotes good nutrition as well as traditional medicine. At the same time, there is a range of social benefits available to people living with HIV/AIDS and impoverished households.

Business

The business sector, particularly the mining industry, started to recognise the potential impact of HIV/AIDS on profits and the wider economy from the mid 1980s. Since HIV/AIDS was striking the economically active age group, companies started seeing reduced productivity, absenteeism, sickness and then deaths among the workforce. Many employers initiated workplace awareness and education programmes to help prevent the spread of HIV. However, as the infection rate increased and employee sickness and death affected profits coming in and benefits being paid out, companies started to look at how they could minimise their losses and meet the needs of infected workers. The larger corporates, such as Anglo American, soon recognised that, in addition to humanitarian and human rights considerations, it made economic sense to invest in maintaining the health and productivity of infected workers rather than waiting until they became too sick to work and then paying out death benefits, and recruiting and training new staff as more and more employees died without access to treatment. So more and more large companies have started workplace treatment programmes. Since 2002, Anglo American, for example, has incorporated into its HIV/AIDS programme free ARV treatment for all employees who need it, and sees this as an important incentive for workers to find out their HIV status. All employees who test positive are enrolled into a wellness programme to ensure ongoing support and monitoring. The company had nearly 2500 employees on treatment by the end of 2004 and reported that 94% of them were able to carry out normal work. That year, it was costing the company more than R16 000 per patient per year to keep employees on treatment (including all the drug, laboratory, infrastructure, training and support costs). This is seen as a sound investment compared to the financial and human cost of employees becoming sick and dying. Anglo American has identified several areas where it wants to improve the effectiveness of the programme but, along with other major employers, its experience is starting to provide important models for workplace treatment and for public/private/community partnerships in the fight against AIDS.

Donors

International and local donors have been channelling huge sums of money, human and technical resources into the fight against HIV/AIDS in the developing world since the mid-1990s. The Gates Foundation has put millions of dollars into the Global Fund for HIV/AIDS, TB and Malaria, as well as channelling millions more directly into country programmes to find the epidemic. The Global Fund is a unique joint effort between UN agencies, governments, private and corporate donors and individuals and is focused on treatment. However, its effectiveness is undermined by failure of some donors to honour their pledges and difficulties of potential beneficiaries in getting putting forward applications that meet the criteria. Funding for South Africa has been dogged by political controversy, with the Minister of Health delaying a grant to KZN because it had not gone through her department.

Some donors (such as the US government and religious bodies) will only fund abstinence and prevention programmes, and exclude projects that distribute condoms or make available information on reproductive rights. The US government also requires treatment programmes it funds to purchase US brand name drugs instead of cheaper generics. Some donors will only fund programmes targeting orphans. Priority is often given to awareness raising and to research into behavioural issues, while every day hundreds of South Africans die untreated. Research into initiatives that could benefit millions of people but will not generate profits is under-funded – notably the development of microbicides as a woman-controlled prevention option. but A major challenge is to align donor funding with local priorities and models of good practice. Other challenges are to ensure more coordination between donors and to improve access of community-based organisations to funding.

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In the early days of the epidemic it was assumed that if the public had the necessary information about the transmission of HIV they would take the necessary steps to protect themselves from infection and the epidemic would be contained. This did not happen.

While AIDS education and awareness strategies deployed in South Africa did alert people, they were insufficient to promote or sustain behaviour change.

One of the main goals of HIV prevention has been to promote behaviour change from high risk to low risk sexual activities - for example, having fewer sexual partners, or using condoms during every act of sexual intercourse. There has also been an increasing emphasis on abstinence. However, this does not take account of the deep-rooted inequalities in South African society, which mean that girls and women are often unable to negotiate safe sex, are vulnerable to rape and are often in relationships with men with multiple partners. Since most South Africans do not know their HIV status there is also a high level of denial. This is fuelled by the slow pace of the rollout, which means a diagnosis of HIV/AIDS is widely regarded as a death sentence.

The prevention of HIV infection is about developing a range of strategies and interventions that support behaviour change. The goal is to lower the rates of infection as quickly as possible. Prevention and treatment need to be seen as interdependent, not as alternatives to each other. For example, if people know that treatment is available, they are more likely to get tested. If people are treated, premature deaths can be prevented; if HIV+ pregnant mothers are treated, the majority of infections of babies can be prevented; if HIV+ parents are treated, it will prevent thousands of children from being orphaned.

In order to communicate HIV/AIDS prevention messages effectively it is recommended that:

People will only change their behaviour or attitudes when they feel that they have a vested interest in change. People must believe that their lives will improve through the process and as a result of the process.

Successful interventions show that a peer educator approach is most appropriate to convey the AIDS message to the target group. Since more than 60% of new HIV infections occur among young people aged 15 to 25, with adolescent girls and young women of childbearing age most affected, interventions that will reduce the vulnerability of these groups are needed.

AFSA supports HIV prevention interventions that address these challenges, such as ife skills programmes, peer-based behaviour change programmes, and gender programmes targeting both the girl and boy child.

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Until 2003, treatment care and support, except for those on medical aid or with private sponsorship, meant treatment for ongoing opportunistic infections, palliative care and deathbed care. The prospect of life-prolonging treatment as opposed to treatment to relieve symptoms is still remote for the majority of those infected. There will still be huge numbers of people dying from AIDS due to their inability to access treatment in the next few years. Most care will need to be community based – in homes and clinics – as opposed to hospital and hospice based.

The community-based response has a number of benefits: it is more cost effective and sustainable, IF PROPERLY RESOURCED AND SUPPORTED; caregivers are in close proximity to their patients; caregivers can mobilise support from within the community to assist affected families with respite care, food parcels, and preparations for orphan care.

As more and more people are able to access ARV treatment, community support and understanding will be critical in terms of identifying and referring patients and monitoring and supporting patients to ensure adherence and proper management.

Investment by donors in support for treatment and for community-based support will assist HIV positive people to adhere to treatment regimens, reducing the number of people requiring hospitalisation and enabling better quality care in hospitals.

There are many positive models of such treatment, care and support but resources are needed to bring them to scale if the epidemic is to be managed and overcome.

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Undoubtedly the most significant recent development in the HIV/AIDS struggle in South Africa was the decision taken by Government in 2003 to provide antiretroviral (ARV) therapy in the public health sector as part of the Operational Plan for the Comprehensive HIV and AIDS Care, Management and Treatment for South Africa.

This decision gives new hope to thousands of people who require this treatment to reduce morbidity levels and defer premature death. However this decision brings with it a new set of challenges, these include overcoming capacity constraints within the public health sector and issues of treatment literacy for patients to ensure treatment compliance and the avoidance of the emergence and spread of drug resistance strains of the virus.

Patient adherence in taking their medication is the key to the success of this programme: patients are required to take three types of tablets twice a day at the same time each day for the rest of their lives. Treatment preparedness and support for patients commencing ARV therapy is therefore imperative.

As ARV therapy is a life time commitment it is vital that patients in the earlier stages of HIV be educated on wellness management and encouraged to keep themselves healthy for as long as possible so that their CD4 counts remain high and thereby deferring the need to commence ARV therapy.

The ARV rollout is happening at different rates, on different scales and with different degrees of commitment and success from district to district and province to province.

The office of the national manager of the ARV programme released the national patient numbers by province and site for the first time in January 2005. The statistics showed that about 29 000 people were on ARV treatment at more than 113 public sector facilities by that time. The figure for KwaZulu-Natal was 8467, Gauteng had nearly 10 000 patients on ARVs, Northern Cape 515 and North West nearly 2800. Mpumalanga had almost 1000 patients on ARVs by the end of December, Free State 945 and Limpopo just 729, the Western Cape nearly 6 200.

The wide differences reflect the numbers needing treatment and the capacity of provinces to deliver. NGOs emphasise the benefits of having access to such data in order to monitor and support the Operational Plan. Most treatment is still hospital based and most patients are adults. There is an urgent need to support initiatives to devolve management of ARV treatment to local clinic level and to ensure that children have access to treatment.

It is also critical to improve access to generics, to bring down the price of drugs and the cost of diagnostic testing.

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Some 80% of South Africans consult traditional healers and use traditional African remedies, even if they also use Western medicines. In the climate of fear and shame that prevailed when people with HIV/AIDS started dying in large numbers, when testing was not widely available and only a minority could afford life-prolonging drugs, traditional healers used a wide range of treatments to alleviate the symptoms of HIV/AIDS. Some so-called healers falsely claimed to have cures for AIDS. There was mistrust between traditional healers and western medical practitioners and different approaches were seen as being in opposition to each other.

In recent years, the government has tried to integrate traditional healers into the national health care system, promoting investment in the research, development of traditional remedies and the protection of related intellectual property. At community level, many organisations work closely with traditional healers in counselling, encouraging testing, promoting good nutrition and complementary remedies. There are many cases of traditional healers and clinic workers referring patients to each other. Improving understanding and cooperation between different medical traditions is important to promote the well-being of people living with HIV/AIDS and to prevent unnecessary conflict and misinformation.

The same applies to attitudes to cultural traditions and practices. These have a direct influence on the health and wellbeing of communities. Some practices are potentially harmful in terms of the fight against HIV/AIDS. Examples include:

The low status of women and girls in traditional communities, which results in unequal power relationships and increases their risk of infection; and

Initiation schools, which play an important role in shaping the attitudes and behaviour of young men in traditional communities.

Cultural and social change in communities is unlikely to happen without the support of traditional leaders, who are the custodians of culture. AFSA therefore supports interventions targeting traditional healers, traditional leaders and initiation schools to ensure protection of vulnerable community members.

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In 2004, it was estimated that there are 2.2 million orphaned children in the country (meaning 13% of all children have lost either a mother or father); nearly half of all orphans were estimated to have lost parents to AIDS-related illnesses. (UNAIDS, UNICEF, USAID, 2004).

The worst affected children – those in deeply impoverished households – are losing their health (through infection, inadequate nutrition, and poor health care), their livelihoods (through the illness and death of breadwinners and working adults), their parents (to illness and death), their families (as they are separated from caregivers and siblings and sent to stay with other relatives or carers), and their social networks.

The deterioration in the well-being of such children starts long before their parent/s die. But by the time they are orphaned, the extended family networks that have traditionally supported vulnerable members have been overstretched.

It is widely accepted, based on experience in South Africa and the rest of the continent, that the best models of care for vulnerable and orphaned children are found within the children’s communities, not in institutions. Orphans fare better if they remain in familiar surroundings, in family units even if not with their biological families.

If extended family networks and communities are to continue to play this role, it is essential they receive social and material support from government, development agencies and the private sector.

Early identification of vulnerable children; succession planning; facilitating kinship and community foster care; assistance with social grant applications, counselling and psycho-social support are all essential components of a community-based strategy. AFSA advocates government, corporate and private donor support for initiatives that address these needs.

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The impact of the HIV/AIDS epidemic is proving to be most catastrophic at household level. Increasing levels of HIV/AIDS morbidity and mortality pose a serious threat to food security and nutrition in households. Families lose income earners, household expenditure is redirected to cover non-food items such as medical costs and funerals, children are taken out of school for lack of fees or to care for sick relatives, workers have to take time off to provide terminal care, resources may have to be shared with more dependents, and productive assets are sold off.

The lack of a social security net and high levels of unemployment in South Africa mean that poor households and communities slip further and further into poverty and deprivation. Invariably the burden of coping falls on women, particularly girls and grandmothers.

Much of this deepening poverty is invisible to donors and policy makers. Local organisations find themselves overwhelmed with requests for support at the same time as they lose staff and volunteers to the epidemic.

AFSA recognises the need for social protection projects in vulnerable communities that promote and provide training for food security and nutrition support; access to social grants; income generation through micro-enterprises and community cooperatives; and community micro-financing schemes. It prioritises support for local projects focusing on these areas.

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