AFRICA: TOUCHED BY THE VENGEANCE OF AIDS…
South African Journal of International Affairs Vol. 7
#2 Winter 2000 p.23 – 39.
South African HIV/AIDS epidemic defies description. It is
characterised by three main features - a) the rapid and
unchecked growth of the epidemic b) a lack of any coherent
policy documents on crucial issues and c) the failure of
public prevention campaigns to have an impact. It is at one
and the same time, the most fascinating and the most
depressing of sagas. Recently it was claimed that 'it simply
does not seem that the government can get it right on AIDS'
an accusation all the more telling in the light of the fact
that South Africa now has the fastest growing epidemic in the
world. With over 1500 new infections a day, South Africa has
one tenth of the total daily infections and more infections a
day, than some countries have in a year.
estimated 4 million people are living with HIV and many people
have died from AIDS related illnesses.
into the second decade of the epidemic, very few South
Africans could claim not to have heard of AIDS. Few could
claim to be entirely ignorant of its mode of transmission and
its effects, and increasingly families and individuals are
experiencing the infection, illness and death of family and
friends. South Africans are a largely AIDS aware population,
but not one that has not seen the necessity to turn this
awareness into personal behaviour change and support and care
for those who are infected.
of the reason for the growth of the epidemic is the failure on
the part of government and NGOs involved in prevention work to
persuade a sceptical population that AIDS is a real disease
and not some part of some other more devious agenda. The campaigns also largely
failed to get a general appreciation that infection with HIV
can cause AIDS a decade or so later and that this is
overwhelmingly a sexually transmitted disease. So despite a
great deal of money and many initiatives people with HIV and
AIDS are still treated as social transgressors and the change
in behaviour required to turn such an epidemic around has not
in an absolutely bewildering move, the president has thrown
the AIDS debate back years by his public musings as to whether
HIV is the cause of AIDS, or whether there is not perhaps some
other causal connection for the deaths that are called AIDS.
It may be co incidental that this debate is coming just as the
country is to host the 13th international
conference on AIDS in Durban 2000. These international
conferences throw the spotlight on the host country. Over 10
000 people attend and the response of the host to their own
epidemic is scrutinised. By raising an AIDS 'red herring' it
may be hoped that the attention will move from what South
Africa has not done, to the view of 'AIDS orthodoxy' vs. the
having an out of control epidemic, the South African
Government, announced on Feb. 28th that it is to
convene a panel of international experts to amongst other
things determine 'local evidence regarding the causes and
diagnosis of AIDS and opportunistic infections' as well as
review the evidence that HIV causes AIDS and allegations that
the AIDS drug AZT is poisonous.
the reality of HIV/AIDS in South Africa this is an
is extraordinary, not only because of the rate and pace of the
epidemic, but also because it has completely ignored the voice
and expertise of local scientists and AIDS NGOs. It is also
extraordinary that in an attempt to find an ‘African
response’ to AIDS, outside experts are called in and local
experiences ignored. The newly established
National AIDS Council (which is quite distinct from
this expert committee) also lacks any representation from the
experienced AIDS World.
magnitude of the problem, the escalating costs of dealing with
the epidemic and the failure adequately to address the AIDS
crisis and to ensure care and support for people with HIV and
AIDS has led to some desperation and some way to make the
picture look less desperate.
this public questioning has done, is to reinforce in the minds
of the population the doubts and denial that have caused the
lack of behaviour change. If, as the dissidents claim, HIV
neither causes AIDS nor is infectious, then the safe sex
message, the message of responsible sexual decision making,
gender issues and domestic violence along with the seriousness
of the epidemic fall away. It means that the vexing questions
of culture, race, sexual behaviour need not
be addressed. It will be unnecessary to deal with patterns of
male sexual behaviour, with gender imbalances in vulnerability
to infection and to changing peoples attitudes to behaviour
change. HIV infection now will be seen as the 'logical'
outcome of poverty, malnutrition and poor socio economic
conditions, and hence there is very little that the government
can, or need do, to try to combat it.
whatever the government might decide as the cause of AIDS,
they will still be required to treat people who are ill and
dying, so avoiding HIV as the cause of AIDS offers no release
from their obligations.
have we come from?
1993, Schneider, Steinberg and Isselmuiden wrote;
South Africa is in the early phase of a rapid and
growth in the HIV/AIDS
epidemic. By the end of 1992, 2.4% of antenatal clinic
attenders nationally were HIV-positive, almost double and
treble the figures for 1991 and 1990 respectively … Based on
the behaviour of the epidemic in South Africa so far, it is
very probable that our HIV/AIDS epidemic might follow a
similar pattern to … other African countries.
they continued, constitutes one of the biggest challenges
facing South and Southern Africa. AIDS has been shown
elsewhere to have a devastating impact
on individual families and communities. Those infected
are only a proportion of those finally affected by the loss of
breadwinners, parents and children.
1994, South Africa had a National AIDS Plan developed through
This Plan was underscored by the understanding of what an AIDS
epidemic might do to South Africa. It recognised the socio
economic determinants of the epidemic, the effects of
discrimination and prejudice, and the economic realities of
the epidemic. It highlighted the need for legal reform and
legislation and research, all underpinned by prevention
strategies and planning for care.
The plan was imbued with the notion of effective AIDS
prevention being closely aligned to Human rights
other words, South Africa, in 1994, with an infection rate
below 5% was ready for the epidemic - ready in the sense of
having information about the epidemic in the USA and Europe,
ready in the sense of having seen the epidemic in other
African states, and Latin America. Ready in having a group of
highly literate AIDS specialists in prevention, care and
research that could drive the programme. We knew about the
links between poverty, migration, unemployment and the effects
of poverty on general social well being.
one could claim that the country did not know what it was
facing. The National Plan was accepted and endorsed by the
Minister of Health, Dr Nkosazana Zuma and the Cabinet and
supported by the many AIDS NGOs and CBOs, religious groups,
trade unions and business representatives that had helped to
shape it. Its crucial recommendation, ignored in the end, was
to have the final authority for AIDS rest in the president's
office to ensure that there was enough weight thrown behind
its implementation. The crucial role of People with AIDS was
recognised by establishing the principle that PWAs should be
involved in all stages of policy and programme planning and
implementation. Although not located within his office AIDS
was declared a Presidential Lead Project, and as such able to
access funding from a variety of sources.
was very clear that AIDS would have a dramatic effect on
development and on the future hopes and promises of the new
democracy. It was clear that it would fuel the economic crisis
- through skills loss, unemployment, loss of productivity and
shrinking of markets. It was clear that education, health,
transport and welfare would all suffer greatly as the epidemic
started to take its toll. There were both the doomsday
predictions as well as the more carefully researched
projections to guide policy makers and to allow for proactive
planning. It was already clear in 1994, that AIDS was likely
to be devastating on the countries growth and future hope
unless swift action was taken.
knew about AIDS - this was not some new unfolding mystery that
we were the first to experience. We had a time lag of
infection, the oft-repeated 'window of opportunity', a
committed government, an excellent plan and the relative
wealth and advanced infrastructure to set our response apart
from that of the rest of the continent. And there was a strong
NGO sector committed to Partnership.
this was a plan that did not come together and instead South
Africa has been touched in many ways by the vengeance of AIDS.
plan or failed planning?
what we knew then and know now, it is quite extraordinary that
the Minister of Health can ask for an expert panel (largely of
non South Africans) to explore all aspects of prevention and
treatment strategies and review areas (in which South Africa
has internationally recognised experts) such as
Treatment of HIV/AIDS and opportunistic infections
General prevention of the disease
Prevention of mother to child infections
Prevention of infection after rape or needle stick
fate of the National AIDS plan is well documented
It was heralded as one of the first major breakthroughs of the
new regime and confidence was high that it would be
implemented. In the same way that South Africans had
confounded the world with the transition to democracy - so too
would they confound the world with the way in which they would
deal with HIV and AIDS.
it was not to be. Almost a decade later the plan remains
unconsulted, un implemented and largely ignored. From what was
the most creative plan, loudly praised by the international
community, it has become the most condemned plan - condemned
to being ignored and accused even by those who wrote it as
seemed as if the knowledge generated and the expertise that
went into the development of the plan suddenly ran out when
faced with the reality of implementation. For there was
sufficient funding and despite claims to the contrary there
was sufficient will and capacity to get substantial parts of
the plan implemented and a response to the epidemic underway.
There was a basic infrastructure through which this could be
done - the previous government had created a network (albeit
in mainly white local authorities) of AIDS centres which had
amassed a wealth of experience and training. These could have
been transformed, expanded and developed satellite operations.
were HIV clinics in some of the main hospitals with Drs and
volunteers who had been watching the epidemic unfold and had a
real understanding of what services were needed. There were
programmes of change and transformation in many government
sectors that created an ideal opportunity for the integration
of HIV/AIDS work. There was too, a body of researchers with
experience in trials and in running services. And there were
many local and national NGOS and ASOs who had developed
significant responses to AIDS and mechanisms for prevention
and to some degree care.
not for the first time, the government at both national and
provincial level turned its back on this experience and
expertise. Their understanding of the epidemic was denied and
expertise was sought from else where - from Thailand, from
Zimbabwe and from the donor agencies. What could have been a
creative synthesis of different realms of experience with the
outsiders being able to sharpen up the thinking and responses
of the insiders - there seemed to be a belief that it was
necessary to start again. New plans, new strategies, new
posts, delayed appointments and a creeping epidemic.
part the failure to implement the plan stems from the
political settlement in 1994, which allowed for a national
government and nine provincial governments, making it possible
to have 10 different policies in key areas. There are in
effect 10 different AIDS plans as each province vies for
autonomy and control. What this has meant is that much energy
has been spent in feuding and in arguments over ownership,
policy and programmes, rather than looking for shared vision
and policy and programme developments. This has allowed for an
uneven response to the epidemic and the response will as often
depend on individuals who have commitment to the epidemic,
rather than on a coherent plan of action.
are we going?
a year of the new plan - the new strategies and the desire for
an effective response the AIDS programme was in disarray. This
was due to the Sarafina debacle in which the excellent idea of
a national youth based AIDS drama developed into Sarafina 2
with irregularities of funding and dubious granting of
tenders. While the ZAR14 million allocated to the play was
actually not a great sum given that the play was destined for
over 8 million young people (less that ZAR2.00 per child) the
money became the focus of public dissent. Although the
government was intransigent at the time Mandela was later to
cite Sarafina as one of the ANC's key mistakes.
some ways AIDS in South Africa has never recovered from the
vengeance of the Sarafina response - it brought to the surface
the simmering tensions between the government and AIDS NGOs
and CBOs. Criticism, in every way valid, of the content of the
play and of the processes that had shaped it was construed as
an attack on government and as an attempt to undermine the
criticism led, correctly, by the AIDS consortium and echoed by
NACOSA, was the turning point in the response of the govt and
the NGOs. For now, the NGOs were forced to choose between
matters of principle and their old comrades in the AIDS
struggle - many of whom like Minister Zuma were holding high
positions. Defending the government became almost impossible
and made worse when the message from govt was clear - are the
NGOs with us or against us?
introduced the beginnings of AIDS orthodoxy - the 'govt line'
was the one orthodoxy and the 'NGO (or PWA) line' the other.
It was extremely difficult to be outside of either of these.
Independence was likely to ensure that either the govt. or the
NGOs rendered that position untenable. So far from having -as
the NACOSA plan so optimistically had suggested - A United
Response to AIDS, there was developing quite the opposite -
Govt and civil society were not united and there was little
true unity in the NGO world.
division came at the time when a united response could have
worked to shift public perception about the disease and about
people who were living with HIV. Instead, the general public
was largely excluded from the AIDS world - instead of creating
a climate of inclusiveness, the AIDS orthodoxy drove people
became a world of exclusion - both by the government who
shunned at all times local expertise and experience - looking
to outsiders to generate an 'African response' and by the AIDS
organisations who fiercely guarded who was 'in' and who was
'out' who could talk and who could not.
rigour was important. It is important how people with HIV and
AIDS are treated, talked about and challenges must be made to
prejudice or stigma. But what happened was that people focused
too much on the images and not enough on the substance – and
for many other people who wished to be included they felt
alienated and intimidated by this. In its turn government was
not prepared to concede that there was a wealth of experience
behind each criticism, that such criticism was not driven by
racism or funding constraints. The attempts made by the
powerful AIDS NGOs such as NACOSA, the AIDS Consortium, the
AIDS Law Project to defuse the situation were rebuffed and
attempts at constructive engagement were taken as hostile
was government so jumpy about AIDS criticism? It is true that the AIDS response has been a litany of
mistakes and disasters. But the extent of the response, the
hostility from the government was ill considered in the world
of AIDS and the depth of the anger and hostility is difficult
Sarafina 2 came Virodene, 1997 -the 'miracle' South African
cure for AIDS - fully supported by the Cabinet and indeed in
the media by Mbeki himself. Criticism of Virodene, which was
later shown to be a toxic industrial solvent, was again
regarded as unfair and hostile. It was even alleged that
people working in AIDS did not wish for Virodene to succeed,
as they then would be out of a job! Still in 1997 came, the
decision to make AIDS a notifiable disease, announced in contradiction of the findings of the expensive and time
consuming review. The recommendations of this review have
never been implemented.
1988 came the firing of the AIDS advisory committee. In 1999,
came the decision not to supply AZT or latterly Neviropine to
pregnant women and survivors of rape and in 2000 the creation
of the National AIDS Council, Mbeki's stance on HIV and AIDS
and the pending appointment of the expert committee. And
throughout this was the failure of government and of the
Ministers in particular to support the National HIV/AIDS and
STD Directorate, which suffered as a consequence a rapid turn
over of Directors and a lack of capacity as well, most
crucially a lack of autonomy.
the chaotic government response, which seemed 'never to get it
right on AIDS', was the response from the NGOs. These have
grown into a powerful lobbying and advocacy group with the
AIDS Consortium having a membership of over 100 organisations,
and NACOSA extensive community based networks and
organisational affiliations. NAPWA - the National Association
of People Living with AIDS, has recently gone through a
difficult time as the competing demands of various PWA groups
and expectations tore it apart. The AIDS Law Project and most
recently the Treatment Action Campaign
have been fighting for the rights of people with HIV as
well as together with international activist groups been
lobbying for free (or significantly reduced in price)
treatment for people with HIV and AIDS.
organisations are mainly concerned with lobbying and advocacy
and have ensured that the issues facing people with HIV and
AIDS and their families and communities are constantly in the
public debate. They ensure that the government is constantly
'on guard' in not being able to be complacent or neglectful of
its AIDS response. The government is certainly feeling
beleaguered and uncertain, but this seems to be driving it
into a hostile and defensive position, rather than into one
that tries to find effective and speedy interventions.
these NGOs are strong on advocacy they are not geared up for
delivery of services. For this there are many NGOs and CBOs
who are active in offering services to people with HIV and
AIDS as well as running prevention programmes. The National
database on AIDS organisations cites more than 600
organisations that are active in HIV/AIDS work. Many of these
have modest operations and are small community based
programmes. Most are competing for funding and often cannot
compete with the large better known national NGOs.
are also at the mercy of the ongoing funding cuts in
government support for NGOs a fate made worse by the failure
of the health department to spend up to 40% of its HIV/AIDS
budget, whilst funding for NGOs has been cut.
smaller organisations tend not to get involved in the macro
political struggles of AIDS. They struggle with the
consequence of the failure of leadership within the government
and the failure of government to provide adequate services and
support. In many instances they are doing work that should be
covered by government programmes and they experience first
hand the pain and suffering, the poverty and desperation which
so many people and communities are facing in this epidemic.
They are supported in some areas by the AIDS training and
Information Centres (where these have not been destroyed
through the provincial/local authority power struggles) and
they get some support from provincial structures. These NGOS
and CBOs are mainly concerned with the development of
community based education and prevention programmes, with
counselling and counselling training and increasingly with
home based care and legal rights support and social welfare.
they tend neither to get embroiled in the disputes with
government, nor to challenge the state they reap the
consequences of a unchecked and unco-ordinated response to the
epidemic. Lack of security in funding allows for a high turn
over of such NGOs with communities being left to pick up the
response of both government and the NGOs accounts for where we
are in the country and the present time. The adversarial
relationship has soured the AIDS field and discord, disunity
and a lack of trust underpins the players in the AIDS world.
Although recognition is given to a 'common enemy' in the
virus, this does not create a united vision or shared
resources. This is also a feature of the AIDS orthodoxy
mentioned earlier, with a growing intolerance from both sides
of voices of disagreement. Squeezed in-between this are the
PWAs, their partners, families, children and communities. They
are the ones who suffer from the infighting and the division
between civil society and the state, but they are the ones
most used by them to justify such disharmony.
vengeance of AIDS seems to have created a deep seated
inability to accept difference of opinion, to include as many
people in the combating the epidemic as possible. There is a pattern of
distrust and undermining of other programmes that feeds into
the governments belief in a dogmatic AIDS world, that refuses
to even consider other approaches or possibilities. By the
same token the government remains unaccountable, intransigent
and unable to get an effective response from the drawing board
and into communities.
history of the epidemic world wide has shown just how
difficult it is to deal with an epidemic of this nature
raising as it does all the difficult questions of culture,
sex, death and social patterns of behaviour. It has been shown
to be especially difficult in South Africa with the added
complexities of race and culture, class and levels of
illiteracy and unemployment. AIDS raises all kinds of
questions about cultural beliefs and practices and it feeds
into all the existing prejudices and stereotypes.
our racially insecure and still racially raw society it also
feeds into all the racial pain of the past years. So much so
that in the debates on Virodene, Minister Zuma could suggest
that the DP do not care about blacks - they would be happy if
they all died.
Likewise as much of the AIDS criticism and activism was
initially led by white people they were dismissed racially as
whites feeling aggrieved by not being listened to. There are
also the conclusions that are drawn about the racial
categorisation of the epidemic, fuelling white perceptions
that this is a black epidemic and evoking a response from
blacks about AIDS being a white created ploy to kill off
Africa. While these may now seem less important and less
obvious than they were a few years ago, they still surface and
are still obstacles to be overcome.
situation continues because of the lack of understanding about
why our society reacts in the way that it does, how it is
created now, post apartheid and how intervention programmes
could be informed and enhanced by a theoretical understanding
of the epidemic. The response to AIDS has been overwhelmingly
populist and as such is not underpinned by any real
understanding of what the interventions are doing. There is
little understanding of what works and what does not, and when
programmes are seen not to work, more money is allocated or
another outside external agent - poverty, migration etc is
brought in as justifications. Linking AIDS to poverty is a
descriptive explanation. It is not an explanation that is
based on a real understanding of what the forces that have
shaped where we are now or determine how a population comes to
understand a particular phenomenon such as AIDS.
determinedly anti intellectual stance and the refusal to take
theoretical explorations and explanations seriously means that
we have no tools to describe our failure and decide on new and
creative programmes of action.
there a way past this?
has been one programme where an attempt, informed by theory,
to move past the common understandings and responses has been
tried. An area in which the difficult cultural, racial, moral
and ethical issues of AIDS were addressed and a programme
has been in the National HIV/AIDS and Life skills programme,
which has aimed to get HIV/AIDS education into all schools
through teacher training and curriculum innovation. While this
has not been a uniformly successful programme, it has explored
ways in which diverse groups of people can overcome suspicions
and tensions and work together to develop an appropriate
effective and dynamic response.
was clear that getting HIV/AIDS education into schools should
be the work of the education departments (all 10) This was
achieved through collaboration in the first instance between
the National Departments of Education and Health. In a unique
move the Department of Health raised the money and gave
education the authority to spend it. A national committee was
established with representatives from all the provincial
education and health departments, as well as representatives
from national NGOs, youth organisations and teacher unions.
committee has to grapple with the fears of the education
department and of the parents of how AIDS work - dealing as it
must with sex - would be integrated into schools. After a
great deal of debate and often-acrimonious exchanges a
training programme and a basic curriculum was agreed upon.
Teachers were trained throughout the country and by the end of
1999, just on 14, 000 teachers were trained both to be able to
design and run effective AIDS programmes themselves but also
to train other teachers.
some areas this hope was instantly dashed as the education
authorities refused teachers the kind of time they would need
to develop and run programmes. In other areas teachers were
redeployed, or even retrenched. Nevertheless, through the work
of the life skills programme a National AIDS Policy Act for
schools was developed and finally passed into law. This act
determined that all children must receive HIV/AIDS education
in schools, that children and staff with HIV will be treated
in a just and humane way and that schools will lay down the
basis for a non discriminatory response to HIV and AIDS by
ensuring that the pupils are well taught in terms of
compassion and understanding.
the life skills programme was attacked as being 'out of
touch', run by people who do not understand the epidemic' and
doubts were cast (mainly by medically trained people) as to
whether teachers should and could do AIDS education.
The people raising these concerns seldom questioned their role
in similar activities!
there are some teachers who are, like some nurses and doctors
and community workers, quite unsuitable for HIV/AIDS
education. There should be sufficient checks and balances to
ensure that they are not trained and asked to do such work.
Despite the criticisms, which are in some cases valid, there
are now many places where effective and dynamic HIV/AIDS
education is taking place in schools. This is being done in
collaboration between two government departs as well as with
the full involvement of many NGOs.
the life-skills programme has addressed is how to deal with
the complex issues of race, class, culture and attitudes
through the introduction of school based programmes. These
debates and difficult decisions have generated a new and
refined understanding of the process of education and the ways
in which such radical diversity as we have in south Africa can
be addressed and challenged. In essence it was found that
there are far greater similarities between families and
communities than generally believed. Many of the difficult
moral and ethical issues can be dealt with in a multi-cultural
and racially diverse way, with the aim of uniting young people
around the common hope of a united South Africa that can
defeat the AIDS epidemic.
programme has been extended to primary schools. The ultimate
hope is that all young people will have comprehensive HIV and
AIDS education that will enable them to remain uninfected,
support those who have been infected and know how best to deal
with HIV and AIDS in their communities.
TV soap drama SOUL CITY is another positive example of how
really difficult racial, cultural, gender and violence issues
are tackled unflinchingly through the medium of a television
soap drama. In addition to dealing with the difficult cultural
issues and having a dramatic story line, SOUL CITY effectively
introduces understanding about social issues such as AIDS
through its dramatic medium. It is a highly effective and
successful programme and highly complementary to the life
both of these examples - one driven by the government and one
driven by an NGO show is that it is possible to transcend the
historical barriers as well as to unite people around a common
theme. Both of them highlight the possibility to intervene in
such a way that many people from diverse and various
backgrounds and experiences can be reached in creative and
effective ways. The formal life skills programme requires the
ongoing commitment from the government, schools parents and
communities - this will be forthcoming as long as the
programme is allowed to be creative and try for new methods of
education and curriculum innovation.
The TV drama and the workbooks that accompany it are
high in the ratings and will be a part of the South African
response for a long time.
way in which AIDS will finally play itself out in South
Africa, like the South African response, defies description.
It is too late to halt the effects of a major epidemic - it is
not too late to avoid a catastrophe. To do that we need to
focus on the real issues, forge unity and put aside government
and NGO differences to forge a new and common understanding of
how we can respond in a way that is mutually respectful,
critical and challenging and ultimately effective.
CENTRE FOR THE STUDY OF AIDS
UNIVERSITY OF PRETORIA
12 420 3491