African Perspectives on HIV/AIDS South Africa Discussion Session

More than twenty individuals participated in the discussion, including representatives of government, media, research institutes, business, religious communities, and NGOs working on HIV/AIDS, youth, and other issues. The topic was U.S. and Western Policy Responses to HIV/AIDS in Africa and how these responses are perceived within Africa.

Section 1: PRELIMINARY DISCUSSION

The initial discussion was around the question in what ways is it necessary to address the HIV/AIDS epidemic in Africa differently from HIV/AIDS in the rest of the world?

This was a far-ranging discussion and many areas were addressed but the key points that emerged were the

· Very high infection levels in the SADC (Southern African Development Community) region

The range of questions supplied for this forum guided the discussion and the discussion was an attempt to link the general themes of the questions. Although each specific question was not dealt with on its own, each issue was addressed. Most of the panel had received the discussion themes beforehand and were, to some extent, prepared to address the range of issues. The diverse experience and understandings of the group also led to wide-ranging debate.

It was agreed that South Africa displays one of the HIV/AIDS paradoxes: most of the population is aware of HIV/AIDS and the manner and nature of its spread, but this has not translated into effective programs and policies or into any sustained and effective behavior change.

There are very good explanations about why we have such a high infection rate. Since the development of the National AIDS Plan in 1994, we have had very clear understandings about migration, housing, societal factors and poverty and their contribution to the spread of HIV in Southern Africa.

We now have understanding of the Class C virus, which is the most common variant of the virus in this region, but we need more research on why it is regarded as being so highly infectious, and why it should be the most prevalent form of virus here. We are finding ways to research and develop an effective vaccine.

Despite all of this information and twenty years of experience with HIV/AIDS in South Africa and the rest of Africa, we are still confronted by the failure of governments to speak openly about HIV/AIDS and to provide effective leadership.

“The most important cause of why the epidemic is so serious in this region is a complete failure by governments to openly acknowledge the seriousness of the epidemic - to speak openly about it,” said one participant. Included is the failure to address the ongoing stigma and prejudice and to recognize the links between gender, domestic violence and abuse as part of the pattern of infection.

“We need to see stigma as the central pin around which all our efforts need to turn as opposed to seeing stigma as just something that we add on - I think it’s the pivotal factor that makes HIV different in this region,” said another participant.

It is now recognized that HIV/AIDS is a very complex issue and is integrally linked to wider social issues such as poverty, security (both domestic and national), migration, gender and development. The point was made that unless there is a coherent position on HIV/AIDS and effective measures to deal with it long-term, large-scale investment would be threatened. There must be more work on the impact of the disease and on getting more reliable statistics.

The future of the country is at stake if the economy is destroyed and there must be support for the development of a viable economy, job creation and the development of a skills base. This requires that general agreement be reached on the nature of the problem and on its potential scope of impact.

Bad research and bad statistics compound the issues and feed into the denial - it is essential that we make clear decisions about surveillance and how we will obtain and use the statistics. “We must have good statistics and stop debating whether the statistics are right or wrong - we've go to reach a point where we say the statistics are right and we will take on and deal with the issue and the impact.”

Dealing with poverty alone is insufficient. It is essential to see that, in Africa, AIDS is fed by and feeds into a wide range of complex issues in which race, class and culture play a crucial role. “There are a lot of cultural beliefs that we need to look at and start saying - what is the impact of HIV on these and how are we going to change that, without breaking down these norms and values.”

HIV/AIDS in South Africa is characterized by a lack of HIV/AIDS education in schools, by gender inequality and non-consensual sex, by stigma and denial, by structural determinants and by cultural and racial factors that contribute to the vulnerability of communities and particular groups of people. Youth out of school are also not being reached effectively. In order to have an impact on this epidemic and the future of the country, new youth programs will be needed.

“When you talk about multiple partners we really have to look at the evidence that underlies that …”

In a wide-ranging discussion about sexuality and sexual practices, there was some debate about the notions of ‘African promiscuity’ and whether it is true that Africans have a tradition of multiple partners. Whilst it is true that for the levels of infection to be so high there must be high levels of sexual activity, some participants felt that these had to be viewed in the light of historical factors such as migration and inequality. Others felt that there was a clear breakdown of social cohesion and social norms and that there is a pattern of multiple partners and a generally high level of sexual activity.

The notion of “sugar daddy's” was also described as being simplistic and unhelpful and deflecting away from the real issues. But it is also recognized that any open discussion of this in society is difficult because of the sexual taboos, the early initiation of children into sex, and the failure to create a climate in which people feel safe and able to talk freely about sexual concerns and behavior. It was recognized that the high levels of STDs in the society are indications of a pattern of sexual behavior that increases vulnerability to HIV infection.

This behavior pattern and vulnerability of people to infection applies throughout the SADC region.

“The massive inequalities that women experience within relationships makes it very difficult for them to protect themselves against HIV.”

The particular vulnerability of women was frequently highlighted with women's risk of infection being higher than that of men. The lack of social support for women leaves them in abusive relationships and their social and economic position makes them particularly vulnerable. Young girls are vulnerable to the sexual demands of older men and, as they slide into poverty, they're being forced into early sexual income-generating behavior.

“We have to think, as a starting point, of what it is going to take to have an AIDS-free society.”

There was discussion around how it might be possible to develop programs and interventions that could make people have a hopeful response to HIV/AIDS. People must be able to talk about an AIDS-free South Africa as a real possibility. Our thinking has to move beyond catastrophe, and in looking at the determinants and co-factors see where it is possible to make effective interventions that can develop a response that is proactive rather than reactive.

We must move beyond denial, and find a way to re-position AIDS so that there is a sense of urgency and an aggressive response. This means that the communication about AIDS and what is possible must be improved and that a change needs to develop through a greater commitment to the NGOs and government programs.

“During the time of Apartheid, a lot of fight came from the direction of the Ecumenical Movement … and here is a challenge where a religious institution could focus.”

It was recognized that the role of organized religion during the Apartheid era was largely one of challenge and confrontation in the face of the oppression in the country, but that this voice is now largely silenced. There was also great debate during Apartheid by scientists, social theorists and other academics and this voice is also now muted and ways must be found to re-energize the response of the church as well as fostering academic research and debate.

“I started working in AIDS in 1992, and I've been hearing these discussions since 1992 … we must try and look forward.”

The point was made that we have been through these debates before and that we need to focus our thoughts on asking why we have been unable to address the epidemic when there exists a good national AIDS Plan Why is it that we never seem to move on from identifying the problems? It is easy to identify problems, but they often overwhelm us. There is a need to become far more focused and move out of the paralysis. We need to revive the partnership and ensure that we identify key areas for interventions.

We know what drives the epidemic in Africa, but the response has frequently been framed in First World epidemic terms and this has created a narrow public health response. The phrase that AIDS is “more than a health problem” must be translated into a meaningful way to frame a wider African response. Priority areas could be increased STD treatment, policies for orphans and people living with AIDS (PWAs) and treatment.

“The epidemic is going to manifest differently in every single part of the world.”

It must also be recognized that there are great differences between African countries and between the epidemics and the responses to the epidemic. It is not necessarily the case that what has worked in some African countries will translate to other areas. The epidemic manifests itself differently across the world and there are different triggers.

This is an important point for foreign governments and funders to take note of: formulaic responses do not address local needs - and successful programs elsewhere should be re-implemented with caution.

“The real thing that’s driving AIDS boils down to the fact that we have a culture that is male dominant … the people who control our lives in every respect.”

The role of men in society and in the efforts to combat HIV/AIDS is crucial. The work of King Zwelathinini -- both as a monarch and leader and as a man in taking AIDS seriously and finding ways to address it -- was applauded. South Africa has a male-dominated culture despite the rhetoric of equality and empowerment of women. Men are the traditional leaders in society, and they take a leading role in perpetuating dominant cultural and social traditions and responses. They have immense control over the lives of women.

There must be ways to focus on the role of men – as fathers and partners in this epidemic – and to ensure that they are part of the prevention and care process and also part of cultural and social change.

The ways in which young men are initiated into social roles and stereotypes needs to be researched as well as how it would be possible to make significant changes. HIV/AIDS is likely to have a dramatic impact on households as well as on the traditional roles of men in households.

“Every time we come up with what's being done and what's not being done, it brings out the racial divisions that we pride ourselves on having conquered.”

Race is a serious concern in HIV/AIDS prevention and care. HIV/AIDS feeds into many social stereotypes and there is a pervading belief that it is black people who will be infected and that other races will not. This fuels racism and blocks any serious discussion as to how cultural practices fuel the epidemic. There is the continuing question of “who speaks for whom” and the ongoing division of HIV prevention along racial and cultural lines. We need to learn how to be a really non-racial and multi-cultural country and in this we could look to other countries, though it was believed that the USA and European countries have still not effectively addressed race, class and culture.

Many of these issues – culture, racism, poverty, patriarchy, violence and crime – significantly predate the HIV/AIDS epidemic. But the epidemic has given new impetus and new categories of meaning through which to debate these issues and find solutions.

“We are unequally integrated into the world economic system and we are being forced to accept sets of rules which enhance and entrench that inequality.”

“We have seen the incredible impact of globalization in terms of preventing and limiting our access to treatment in developing countries.”

Whilst saying that there are particular features of the “African epidemic” and of the South African epidemic, it is also recognized that South Africa and Africa are tied up in the global economy. They are part of the world economic system and the macro-economic policies that are decided elsewhere have a direct impact on the economic and political future of the country.

It is crucial that we understand these linkages, the role of the world economic system and our place within it, for this relationship has a direct and dramatic impact on the fiscal austerity, on cost effective or affordable treatments and on the availability of drugs and vaccines.

“How do we distinguish what we address centrally, what do we address locally and the development framework in which we have to do this?”

The linkages between health and development challenges need greater understanding and research. For example: How do effective programs get implemented in a country in the midst of developmental and political change? What is meant by a development framework? And how can the AIDS response be decentralized to a local level? At present, the policy and the plans are directed from Pretoria to a large extent and there needs to be prioritization for local level initiatives. This would be in line with the World Bank's program of scaling up.

Development must be integrated into all programs, such as by enabling frameworks for local government and the development of a full range of services for local communities. Decisions on implementation and sustainability must also be firmer and better developed.

The management of the disease and its various ramifications is crucial and this management extends into policy, housing, education, treatment and support.

At the end of the general discussion period there was a rough categorization of the discussion into areas that donors could consider funding as well as research areas that would need to be funded and explored.

Section 2: FOCUSED AREAS FOR DONOR SUPPORT

A number of views were expressed about how specific donor support could be accessed for specific programs or interventions. There was concern that the same categories and the same problems should not be raised and that new ways of accessing funding should be sought,

Donor agendas and strings attached

There is concern that donor programs are being driven by the needs and agendas of the funding agencies and foreign governments, rather than by assessments of local expertise, conditions and needs. Donors often have fairly rigid ideas about how things should be done based on technical frameworks and time lines.

Different ways of accessing funding should be sought. This could be through appointing strong national NGOs to distribute funds, through private sector boards as well as through the government, but with clear controls over government allocation.

Fund activities in the National AIDS Plan

It could be possible to fund the South African National AIDS Plan (NAP) much more directly, and to look at an integrated response that brings together the diverse groups working in the field. The funding system through government needs to be overhauled so that the funding is channeled more effectively and efficiently. There was some consensus that the Strategic Plan 2000 - 2005 was generally a weak document.

If the funding is not channeled through government, then other ways for monitoring should be found. It was also suggested that funding should be in line with the NAP and that direct funding to governments should not occur if the government was showing a fundamental lack of commitment to taking the epidemic seriously.

Donor ethics

The point was made that foreign governments expected African countries to address the epidemic in particular ways, but the US, for example, still has discriminatory legislation concerning travel for PWAs. Said one participant, “It's almost like we are looking to America to give us support and human rights and yet they have huge travel restrictions on people living with HIV. It needs to come up quite proactively that we cannot look at them as models of human rights. That needs to be looked at from their side as well.”

Consultants

The role of consultants was discussed at length. It was felt that consultants could undermine a national response as they blocked local capacity building and came with fixed donor agendas. It was also felt that consultants could bring some neutrality and technical expertise and that they were a valuable resource.

Funding concerns

· Large donations are often viewed with suspicion, especially the timing, which is often seen as being politically expedient for the donor.

· The same projects or type of projects should not be funded over and over. Duplication needs to be addressed. There is a great deal of waste and there needs to be far stronger regulatory mechanisms and greater NGO and government accountability. There should not be 'double dipping'.

· Funding should be made available over longer terms. Year-by-year contracts are unacceptable as too much time is spent looking for the next cycle of funding. With long term – 4 to 5-year contracts - there should be strict annual reviews.

· Guidelines should be developed for donors. There should be an international index of HIV/AIDS commitment and the allocation of resources should be commensurate to the size of the problem.

· The consequences of funding programs must be addressed. For example, some PWAs are prepared by donor funded programs to disclose their status only to find that there is no follow-up support.

· There are some very positive experiences of funding and these have allowed for latitude in learning as well as for engaging in debate.

Treatment

A major area of concern for South Africans is the access to treatment. This includes access both to mother-to-child-transmission (MTCT) treatment as well as access to the range of anti-retroviral drugs. Whilst it is well acknowledged that there are few of the necessary structural features in place to support extensive treatment, this should not hold up treatment for people who could utilize it effectively.

International policies are hindering access to treatment. The role of the U.S. Government in denying access to treatment needs to be fully explored in terms of their support for the interests of the pharmaceutical companies. In the words of one participant, “a foreign government was allowed to intervene actively in the workings within a country - in trying to prevent us from passing legislation.”

The failure to provide treatment and the role of foreign governments and drug companies in this failure is all the more distressing when there is overwhelming evidence that Nevirapine works for MTCT and that the drugs can be effective for many people. Even the offer for free or reduced cost medications had strings attached or was in one way or another unacceptable to the South African government. The role of all players needs to be analyzed.

Parallel imports and compulsory licensing must be investigated and considered as possible alternatives. The role of the U.S. government in drug pricing should also be closely examined. The U.S. government has offered loans that are tied to American drugs, which was generally seen by the group as an example of support with strings attached - reducing competitive pricing and autonomy of choice. “All that this does is once again propagate the interests of the drug companies. We shouldn't have to be tied into buying drugs from that company, we should be able to look for the best solution for our own country.”

Ways need to be found to put pressure on the World Trade Organization. There must be a lobby that says that this is not just a trade issue, health is not a trade issue, and certain concessions and exceptions have to be made. There must also be a campaign that links access to treatment to debt relief. Such a campaign would also be looking at the laws that govern patents and the production and import of generic medicines, as well as getting greater commitment from drug companies and governments to address this issue as an immediate urgent need. Underpinning this campaign, there should be increased research on treatment as well as how to develop and maintain the health and education infrastructure needed to support access to treatment on a broad base.

Human Rights

It is a fundamental human right to have access to testing, counseling and treatment as well as to enhanced social and health services. Voluntary counseling and testing (VTC) services must be fully resourced and offer ongoing support and services for people with HIV/AIDS and their families. The stigma and denial that blocks the success of VTC must be recognized and it was suggested that effective visits by prominent African-Americans could go a long way to addressing these concerns.

With regards to the right to treatment, the TRIPS (Trade-Related Aspects of Intellectual Property Rights) agreement should be re-negotiated and drugs given without strings attached as well as at reduced costs so that people will be able to exercise individual choices about treatment. The North/South inequity should be recognized for what it does to world development

“The TRIPS agreement is an agreement that has really robbed the developing countries in such a way that the drugs are in the north and the disease remains in the south and… the U.S. government should take a lead in saying that it should be renegotiated”

Business and Industry

Technology transfer is an important component of HIV/AIDS education and communication. This takes many forms, and the effective use of such technologies must be developed.

Advertising and marketing about HIV/AIDS and related issues must be stepped up. An effective way to do this is through the development of extensive recreation facilities. It was believed that a dramatic donor infusion to create recreation programs for young people and communities would have a dramatic impact on behavior and the epidemic. There is nothing for young people to do and few community recreation centers. Through sport, libraries and other programs, effective HIV/AIDS education could be done and new sub-cultures of community and social interaction established.

The development of sport and recreation facilities was regarded as a significant area in which governments and donors could be involved. Famous people could promote them and offer training and it would be a lasting sustainable program.

Workplace based interventions should move beyond just safe sex messages and should look at productivity and education about the global impact of AIDS and ways to address it. The links between poverty, work and business need to be developed and the debate that the recent controversies have sparked should be channeled in creative ways.

Orphans

There are no strategies or polices for households affected by HIV/AIDS and there are no policies for orphans and child-headed households. There was general agreement that the role of the extended family was misunderstood and that many families are already too over-extended to deal with orphans.

Foreign governments and donors need to give urgent attention to the housing of orphans through new and creative housing schemes and village approaches. The objective should be to ensure that the orphans are kept in school, are clothed, fed and cared for, and are socialized into the society, not marginalized and tempted by crime and violence.

Children are a particularly vulnerable group and child-headed households should not be considered an option. There must be well-funded research to look at new ways to conceptualize the orphan response and to assess the long-term effects of such large numbers of children in need.

There is little room for experimentation, but a long-term viable solution must be found so that the children orphaned and affected by HIV/AIDS are not increasingly vulnerable to infection themselves.

Through their membership and their structures, labor unions could be very important in the development of programs to support children and affected households. This would also affect their workplace programs.

The ILO should be encouraged to become involved in workplace programs for child support and early education and training opportunities for young people.

Nutrition

There is an extensive network of food hawkers in South Africa. They can be trained as nutritional advisors so that they can give advice to poor communities and households about the most effective ways of eating well on limited budgets. This would have the effect of improving the quality of their work as well as having a direct impact on the general well being of communities and households. This could also have an impact on the MTCT programs, as the general nutritional status of the women would improve.

Food and Social Support

An area where foreign donors could be involved is in the development of food aid programs similar to those launched at times of national crisis. This food aid could be in direct supplies of food parcels to destitute families. It could also be in the form of food co-ops and food stamps, which are administered through the Department of Welfare

The effects of care – whether home-based or diverted toward groups such as young girls or the elderly – need to be assessed and social support systems generated should be part of the food and support programs. Foreign governments could set up education structures to train an extensive network of community-based care-givers as well as education structures to ensure that young people do not miss their educational opportunities.

The effects of HIV/AIDS on the environment must also be recognized. Of particular concern is the collapse of agriculture and the deterioration of farming land; erosion and deforestation; the uncontrolled dumping of waste, particularly in regard to home- based care where refuse services are inadequate; the failure to give people a proper burial for economic reasons; and fear of stigma.

Part 3: CONCLUSION

The support of foreign donors, including the US Government, is recognized as crucial to the efforts to contain the spread of HIV and to mitigate the effects of AIDS. Foreign donor support is also crucial to efforts to develop new social, economic and political formations that can transcend this epidemic and allow for growth and development though HIV/AIDS.

It is believed that ongoing support for the prevention programs is crucial but this support should be based on proven effectiveness. We must throw away what does not work and develop new, creative and innovative programs.

The list provided below is a full summary of areas in need of attention, but the group felt that it is crucial to prioritize in order to create a feeling that the epidemic is manageable. Priorities are:

· Orphans and children in distress - through new research and new strategies for housing and care

· Youth programs to create an environment where youth feel there is a purpose to being free from infection

· An increased role of religious groups in challenging discrimination as well as offering care and support programs

· Social support for women, as well as challenges to the male dominated society through a range of serious economic empowerment programs and the full participation of men and women

· Extensive community development through the building of recreational facilities, libraries, community centers and linking these to sports training and social and community programs

· Formal education support through the provision of teachers and additional education for young care-givers

· Greater workplace understanding through the involvement of international labor organizations

· Focused funding in consultation with government and NGOs to sustain, support and evaluate the National AIDS Plan

· Study trips and training in reliable institutions in the U.S. or other countries, especially fostering a north/south understanding

· Extended visits to South Africa by good role models who can give classes in sport, music and act as inspirational role models

This list is clearly not exhaustive and needs to be read in conjunction with the donor and research list. It is believed that it is still possible to turn this epidemic around through new and creative ways of looking at the affects of AIDS in South Africa and creating the opportunity for fresh interventions and the identification of key priority areas.

There is not endless time for debate and discussion and foreign governments need to move fast and with extensive programs so that the progress of the epidemic can be halted and the interventions can lead to the creation of a new society. This new society will live through and beyond AIDS, with new families, new communities and new social, economic and political visions for the future.

The discussion forum thanked the Africa-America Institute for the opportunity to meet like this and debate the complex question of HIV/AIDS in South Africa in a relaxed environment and looks forward to seeing the results of the consultative process.

Director, Centre for the Study of AIDS

[1] South Africa rates as having the fastest growing epidemic in the world with over 22.5% of pregnant women infected and up to 1700 new infections per day. At the Durban 2000 conference it was described as an 'epidemic out of control'.

[2] The National AIDS Plan (see later footnote) has a full introduction discussing the socio-economic aspects of the epidemic

[3] Various strands of the HI Virus have been isolated and these simplistically are broken into Class A, B, C etc - Class C is regarded a highly infectious and is the form of the virus most commonly found in South Africa,

[4] The government is funding a vaccine development and education programme

[5] There is a national HIV/AIDS life-skills programme, in which many teachers have been trained, but there is little commitment to an effective schools based programme

[6] See Jewekes R and Abrahams N Violence against women in South Africa: Rape and Sexual coercion MRC 2000.

[7] The position of women in society and of children makes them particularly vulnerable to infection.

[8] Older men who have sex (often forced) with much younger women and young girls in exchange for gifts and money.

[9] The national STD programme is one of the more successful interventions

[10] There is a growing feeling that the concentration on negative statistics and on the negative aspects of HIV/AIDS is feeding into the denial, fear and apathy.

[11] The National AIDS Plan, developed through extensive collaboration and consultation, was adopted by the cabinet in 1994, indicating a serious commitment to fighting HIV/AIDS. The plan has never been implemented.

[12] As deputy President, Mbeki launched the Partnership Against AIDS which was aimed to bring the public and private sector together in a united and effective response to HIV/AIDS

[13] The Zulu monarch who has devoted considerable time to talking about HIV/AIDS to young people.

[14]Men have been left out of much HIV/AIDS work and cast in the role of evil perpetrators of infection - it is essential that they are part of the prevention and care programmes - as participants and leaders.

[15] Although, interestingly enough at the recent Racism conference, AIDS was hardly discussed

[16] Certain cultural practices such as dry sex add to personal vulnerability - but attempts to discuss these are often met with a defensive response - or a suggestion that it is part of the culture. Anyone outside of that culture who raises debate is regarded as being 'racist' or prescriptive.

[17] It is often stated that AIDS will make development impossible - but there is little creative thinking about how this could be challenged and new development models developed.

[18] In discussion these were recorded as Hope World Wide; the AIDS Foundation; the Perinatal Research Unit: the Policy Project

[19] Forty-six percent of South African families are at risk of becoming destitute