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South Africa’s response to the epidemic
In 1987, the apartheid government recognised that HIV and AIDS had the potential to become ‘a major problem’, even though there were few reported infections.
The first antenatal survey, conducted in 1990, found that only 0.7% of pregnant women were infected. Yet, in the same year, ANC leader Chris Hani, speaking from exile, warned: 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.”
This warning was not heeded, either by the outgoing regime or by the incoming democratic government as it faced the huge challenge of taking over political control of a divided country.
During the first decade of democracy in South Africa, the energies of civil society organisations in the HIV and AIDS sector led by the Treatment Action Campaign (TAC) were largely focused on challenging the government to recognise the scale and depth of the emerging epidemic.
Former President Nelson Mandela acknowledged after leaving office that his government had not acted swiftly or decisively enough to address the crisis. His successor, Thabo Mbeki, far from redressing this failure, compounded it with a deadly denialism parading as intellectual inquiry. Under his presidency, more than 5 million people were living – and increasingly dying – with HIV. Yet Mbeki questioned the link between HIV and AIDS and said he had never met anyone with the disease.
Mbeki’s Minister of Health, Manto Tshabalala-Msimang, fought growing national and international appeals for a public treatment programme to save lives, all the way to the highest court in the land. Prevention, nutrition, traditional medicine and a ‘positive attitude’ were the Minister’s prescription. These were touted as an alternative to anti-retroviral treatment, rather than as important components of a comprehensive treatment and support programme. The body that was supposed to drive the national response to HIV and AIDS, the South African National AIDS Council (SANAC), chaired by then Deputy President Jacob Zuma, was dysfunctional and ineffective in the absence of political will. In 2003, the government produced an Operational Plan for the rollout of ARV treatment but lack of leadership and severe capacity problems in the health sector inhibited its implementation.
After Zuma was fired as Deputy President in 2005, SANAC was reconstituted under his replacement, Phumzile Mlambo-Ngcuka. As Minister Tshabalala-Msimang’s influence began to wane, reason began to prevail in the response to HIV and AIDS. Mbeki desisted from public contestation of HIV/AIDS science and, in 2007, government and representatives of labour, civil society and the private sector, through SANAC, finalised a new Strategic Plan for HIV and AIDS and STIs in South Africa, for 2007 to 2011.
When Mbeki fell from office in 2008, a new Health Minister, Barbara Hogan, was appointed, who immediately committed government to a concerted and decisive response to the epidemic. A new spirit of trust and cooperation between government and civil society bode well but the legacy of poor leadership and cooperation was daunting. New infections were still occurring at a rate of about 1500 a day and 1000 deaths per day were attributed to AIDS.
While the government response is a matter of national policy and has always been framed as a ‘partnership’, clearly the role of individual leaders is critical. Strong, visionary leadership is needed in all sectors to defeat an epidemic that is affecting all sectors. This is the context in which AFSA is supporting initiatives aimed at taking control of the HIV and AIDS epidemic from household to international level.
Community
Most care of people living with HIV in South Africa is provided at household level, by family members, CBOs and faith-based organisations (FBOs). In the early years of the epidemic, the ‘community’ was called upon to provide terminal care and support orphaned children with very little support. Families and neighbours responded, assisting those who had lost breadwinners and absorbing children who had lost parents. However, given prevailing levels of poverty, the impact of AIDS stretched survival strategies to breaking point in many cases.
Lack of access to ARV medicines in the public sector has meant that the face of HIV and AIDS at community level, especially in rural areas, has been one of wretched illness and certain death. This has added hopelessness to the physical and materials burdens of providing care in the community.
It is at this level, through people’s daily interactions with one another that attitudes are shaped and behaviour is influenced. The response people receive when they seek testing, or reproductive health services such as condoms or treatment for STIs, or when they disclose their status, or become sick, can be a much stronger influence than billboards or speeches. The reactions of family members, neighbours, friends, clinic staff, doctors and government officials help to spread hope and trust or fear and stigma.
It is true that the formal health care sector has been overwhelmed by HIV and AIDS. In the absence of ARV treatment, up to 80% of hospital beds in already under-staffed and under-resourced hospitals have been occupied by patients with AIDS-related illnesses. But it is in the area of informal and voluntary care that the burden has been greatest – and has fallen most heavily on women.
In response to this, government support for home and community-based carers employed by NGOs and CBOs has increased. The state has also promoted the training of lay counsellors to promote voluntary HIV testing. The national Department of Health estimated in 2004 that there were 40 000 community health workers (CHWs) in South Africa, nearly equal to the number of professional health workers in the public sector (fewer than 44 000). There are many problems associated with it, including the poor remuneration and resourcing of CHWs, their ‘Cinderella’ status in the health sector and the uneven quality of the training they receive. Nevertheless, community and home-based carers have been the backbone of the response to HIV and AIDS.
Funding targeted at CBOs providing small-scale day-to-day services to those in need, largely through volunteers, can make the difference between household resilience and breakdown. Among the kinds of support provided 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. These are not services directed only at people affected by HIV and AIDS but the epidemic has drastically increased the vulnerability of already poor communities.
As access to ARV treatment improves, community support will become increasingly critical in areas such as monitoring adherence to treatment and facilitating access to adequate nutrition and social benefits.
Health care workers
At least 70% of the caseload in the public health system is taken up by HIV and AIDS cases, many relating to increasingly drug-resistant TB.
Health care workers have been overwhelmed by the impact of the epidemic 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. Many health workers are living with untreated HIV and AIDS and 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.
One research study (Centre for International Health, CIC) found the attrition rate among nurses in the public sector was more than 9% in 2004. In that study, the burden of work, excessive patient loads, poor working conditions and stress/depression from dealing with increased HIV-related morbidity and mortality were among the reasons that nurses gave for resigning.
Research into the prevalence of HIV infection among health care workers at two Johannesburg hospitals in 2005 (CIC) found that 11.5% of hospital employees were HIV-positive. Of these, at least 19% should have been on ART already since they had a CD4 count of less than 200.
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 and AIDS. Workers are affected by HIV and AIDS as breadwinners who risk losing their income if they become sick, as partners of infected people, as caregivers to sick people, and as guardians to orphaned children.
Mineworkers were among the first group of workers recognised to be vulnerable to HIV infection, due in part to high levels of mobility (migration) and the tendency to have more than one sexual partner, often including sex workers. As infection rates among other workers, such as educators and health professionals have risen alarmingly, unions have individually and collectively sought equitable workplace HIV policies, including workplace testing, counselling and treatment programmes, and have fought for the legal rights of infected and affected workers. They have also highlighted the working conditions of health care workers.
COSATU, while a partner in the ANC-led government, opposed some aspects of government HIV and AIDS policy. It 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 engaged with business, the pharmaceutical companies and donors to improve access to affordable treatment. The labour sector is represented in SANAC.
An assessment of the role of labour in tackling HIV and AIDS, made by NALEDI (the National Labour and Economic Development Institute) in 2007 found that there was still a long way to go in ensuring workers in all sectors were protected by workplace HIV policies. Despite pressure from labour unions, the majority of bargaining councils still did not have HIV and AIDS policies in place and there was poor compliance. Sectors subject to high levels of casualisation of labour were less likely to have policies in place. The unions in South Africa have fought for labour legislation that protects workers but there are still incidents reported of workers being discriminated against or dismissed on the grounds of their HIV status.
NGOs
A wide range of local, national and international NGOs have responded to the HIV and AIDS crisis facing South Africa.
They are engaged in service delivery, including prevention, care and treatment programmes, human rights work, including paralegal advice and litigation on behalf of people living with and affected by HIV and AIDS, and in research and education, advocacy and lobbying.
Many NGOs have been established purely to address HIV and AIDS. Most NGOs working on other issues have integrated responses to the epidemic into their programmes. While this is a logical response, some HIV and AIDS interventions have been donor driven, since funds have been earmarked for HIV and AIDS in preference over other areas of need.
In the absence of an effective government response, NGOs drove the campaign for access to treatment, lower drug prices, improved care and more effective policy on HIV and AIDS. Much of this campaigning was led by the TAC and the AIDS Law Project, and included some notable court victories. TAC and ALP have been AFSA partners over several years.
Huge sums have been channelled to NGOs by donors but it has often been difficult for smaller organisations to access funds. 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 initially 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 and 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.
At the end of 2008, TAC was one of the victims of South Africa’s failure to secure R1.7 billion in funding from the Global Fund, due to the poor quality of the proposal submitted by SANAC. As a result of the consequent loss of some of its funding, TAC had to retrench staff and volunteers.
The NSP commits government to funding non-government initiatives that are aligned to the key priorities of the plan. The NSP is founded on the need for partnership across all sectors and paved the way for improved cooperation between government and NGOs in terms of policy and service delivery.
Government
The SA government’s response to the HIV and AIDS epidemic needs to be assessed and monitored against an ambitious but achievable National Strategic Plan to which all roleplayers have committed themselves.
The NSP identifies four priority areas:
Priority Area 1: Prevention
Target: reduce the national HIV incidence rate by 50% by 2011.
Priority Area 2: Treatment Care & Support
Target: provide an appropriate package of treatment, care and support services to 80% of people living with HIV and their families by 2011
Priority Area 3: Research, Monitoring and Surveillance
Objective: establish effective M&E as a policy and management tool. The NSP calls for a sustainable budget of 4% – 7% of the total HIV and AIDS budget for M&E in line with international trends.
Priority Area 4: Human Rights, Access to Justice and Law Reform
Objective: create a social environment that encourages people to test voluntarily for HIV and, when necessary, to seek and receive medical treatment and social support. Respect for and the promotion of human rights must be integral to all the priority interventions of the NSP.
These objectives and targets have been costed so that the resources required to achieve them can be budgeted. Action plans for their implementation, along with the lead agencies responsible, the indicators for success and the mechanisms for monitoring are spelled out.
It is the job of the Health Minister to keep this on track. It is the job of SANAC, in which every sector of society is represented, to hold government accountable for implementation of its plan.
AFSA’s own programmes are aligned with the NSP and it supports CBOs whose work is contributing to realisation of the plan’s Key Priority Areas.
NSP Download
Business
A survey on the impact of HIV and AIDS on more than 1000 businesses in the retail, manufacturing and construction sectors in South Africa was conducted by the University of Stellenbosch in 2004.
More than a third of the companies surveyed indicated that HIV and AIDS had reduced labour productivity or increased absenteeism, and had raised the cost of employee benefits. Some 34% of the companies reported that HIV and AIDS had already had a negative impact on profits, while more than half expected an adverse impact on profitability by 2009.
Of all the companies surveyed, manufacturers were the worst affected, while retailers were experiencing the smallest impact. The study concluded that, overall, the response of business to HIV and AIDS needed to be speeded up. Only a quarter of all the firms surveyed had implemented a formal HIV and AIDS policy, while less than a fifth had a voluntary counselling and testing programme or provided care, support and treatment to infected workers.
The mining industry was among the first to recognise the potential impact of HIV and AIDS on profits and the wider economy from the mid-1980s. Since HIV and AIDS was striking down 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 rates rose, companies started to look at how they could minimise their losses and meet the needs of infected workers. The larger corporates soon recognised that, in addition to humanitarian and human rights considerations, it made economic sense to invest in workplace treatment programmes.
Since 2002, Anglo American, for example, has provided 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. This experience along with other major employers, started to provide important models for workplace treatment and for public/private/community partnerships in the fight against AIDS.
The South African Business Coalition on HIV and AIDS (SABCOHA) aims to co-ordinate a private sector response to the epidemic. It is a member-organisation including big corporates, medium-sized enterprises, smaller companies and service providers.
SABCOHA focuses on research to develop and share best practice models, pioneering new business initiatives, information sharing and lobbying. It funded the survey of businesses outlined above.
SABCOHA quotes research showing that if companies invest in prevention and treatment programmes, the savings outweigh the costs. Providing care and treatment for HIV-positive employees can reduce the financial burden of HIV and AIDS by as much as 40%. Daimler Chrysler showed that the savings from preventing a new infection in its South African workforce ranged from $25 000 to $280 000, depending on the job level.
Donors
International and local donors have been channelling huge sums of money, human and technical resources into the fight against HIV and 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 was dogged by political controversy under Minister of Health Manto Tshabalala-Msimang. She delayed a grant to KwaZulu-Natal because it had not gone through her department and then in 2008 the Global Fund rejected a ‘poor’ proposal submitted by SANAC. This cost South Africa R1.1 billion in lost funding for national programmes and R600 million for the Western Cape over five years.
SANAC was reconstituted under new leadership and expected to participate successfully in the new round of applications to the Global Fund.
International donor policy favours certain types of responses to HIV and AIDS and often attaches conditions to grants related to donors’ domestic concerns. For example, under George W Bush, the US government (as well as faith-based donors) would only fund abstinence and prevention programmes. It excluded projects that distributed condoms or made available information on reproductive rights. President Barack Obama, elected in 2009, promised to remove this condition.
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 was initially given to awareness-raising and behaviour-change issues but as hundreds of South Africans started to die untreated every day, more donors were prepared to put money into treatment programmes.
Research into initiatives that could benefit millions of people but will not generate profits is generally under-funded – notably the development of microbicides as a woman-controlled prevention option. A major challenge remains 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.
In 2008, the appointment of a new Health Minister in South Africa, with a stated commitment to turning around the HIV and AIDS epidemic, brought a swift reward from one bilateral donor. The UK’s Department for International Development (DFID) announced a £15 million boost to support the NSP.
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