'HIV/AIDS in S.Africa: Extent & genesis of the crisis & experience of TAC as a community response to a failure of governance

Andrew Feinstein kindly supplied the notes he used to make the above talk in January 2005:

1. Thanks for the invitation. Great pleasure to be here on behalf of FoTAC:
UK support arm of TAC: advocacy work and raise funds for the TAC Treatment Project
Public launch later this year

2. My background:
Not a technical expert. Rather an activist
Polyglot: SA dad, Austrian mom
Qualifications in Clinical Psychology & Economics
ANC MP for almost 8 years
Resigned: Arms deal vs. HIV/Aids
Jewish married to a Bangladeshi Muslim

3. Start in what might seem a strange place = Auschwitz liberated 60 years ago today:
What made the Holocaust so defining: “industrialised slaughter based on difference – religious, ethnic, sexual orientation, lifestyle (gypsies), disability, health, etc.
My mother lost 11 members of her family in Auschwitz, she miraculously survived the war in occupied Vienna because her father was Catholic!
This was a time I describe as a “moral void”
60 years on how different is our world? the Balkans, the threat of terrorism from “the other” (Muslim), the Sudan, Rwanda, Zimbabwe and … HIV/Aids.
The threat of Aids in Africa is the most profound threat the continent has ever faced. In SA, which has the highest number of infected people in the world (5 mill), where 600 people die of Aids-related illnesses daily, and where the government has had, at best, an equivocal attitude to dealing with the pandemic, HIV/Aids is in the process of destroying the extraordinary hard-won gains of the Struggle for Liberation from apartheid.

4. But let’s go back to the beginning:
SA is a middle income industrialised country with a relatively well developed public health sector and a democratic system since 1994.
SA’s pandemic is typically African, i.e. it is characterised by heterosexual transmission and is strongly linked to poverty and transport links with high prevalence HIV areas in the region.

From the mid 1970’s to the end of the century the Aids pandemic claimed 14 million lives. This is a holocaust in Africa equal to the slave trade.

Why is Aids so much more deadly in Africa?
i. It may have to do with the type of HIV virus found in Africa … the so called HIV-1C … but it goes deeper than this including:
ii. the history of colonialism & slavery;
iii. sustained civil and military conflict
iv. geographical disadvantage
v. patterns of migration
vi. poor governance
vii. structural adjustment

SA, with its transport and labour links into Southern Africa was unfortunately well placed to experience a rapidly moving Aids pandemic, added to this SA’s history of participating in military struggles in the region (by the old apartheid army and the liberation forces) may also have contributed to the spread.
In addition, in southern Africa, socio-cultural norms of gender inequality, sexual violence, a preference for dry sex, fatalistic attitudes and pressure to prove fertility … all contribute to a high risk environment
Sexual culture & behaviour – and the “sexual economy” – is obviously an important driver of the pandemic. But it is the combination of socio-economic and bio-medical factors with unsafe sexual practices that produces the lethal basis for the spread of HIV.
There is strong biomedical evidence showing that “malnutrition and parasite infection increase HIV susceptibility, not only to opportunistic infection but also to HIV transmission”. Given that malnutrition is a function of poverty there is good reason for assuming that poverty hastened the spread of HIV in Sub-Saharan Africa. From 1988 to 1998, when nascent or concentrated Aids epidemics developed into generalised epidemics in sub-Saharan Africa, 30% of the region was malnourished.
There is no doubt that weak policy responses by most African governments contributed to the Aids pandemic. This is especially the case for SA, which had more resources than other African countries to combat the Aids pandemic.
So there are links between a myriad of determinants: Economic factors reinforce unsafe practices. Sexual culture places women in a vulnerable situation regarding HIV-infection and poverty exacerbates it by encouraging women to engage in sex as an economic strategy for survival.

Not only does poverty heighten vulnerability to HIV-infection but education and skill level appear to as well with HIV prevalence falling sharply as skill level rises.
Findings such as these highlight education and economic development as important components of an integrated approach to combating Aids. Obviously there are other structural issues, such as addressing the migrant labour system.
Ultimately an effective strategy against Aids requires a combination of anti-Aids interventions and pro-poor development strategies. And of course Aids impacts negatively on economic growth which in turn contributes to poverty … a tragic negative circle.
The development dilemma goes something like this:
i. Poverty contributes to the spread of Aids
ii. Aids treatment and prevention programmes are more effective when people are well nourished (therefore, poverty alleviation is a precondition for combating Aids … but)
iii. Aids undermines productivity & economic growth
iv. Economic growth is necessary for sustainable poverty alleviation. Therefore, addressing Aids is a precondition for addressing poverty

5. Let’s now focus our attention on SA:
The history of Aids in SA is a tragic tale of missed opportunities, inadequate analysis, bureaucratic failure and political mismanagement.
Early 1990’s antenatal surveys indicated less than 3% of pregnant women attending government clinics were HIV+ but there were some early warning signs of an impending Aids pandemic. Today 28%!
The apartheid government’s early response was “lukewarm” because of prejudices against homosexuals … and a degree of racism in the attempt to promote condom use among the African population where it had no legitimacy or credibility anyway.
Initially the ANC took the pandemic seriously, leading to the launch of the National Aids Committee of SA to co-ordinate the response to Aids. This body developed a far-reaching, comprehensive and progressive plan (included Zuma and Manto)
However, political and organisational imperatives then marginalised the Aids issue. Also downplayed to ease the return of exiles from high HIV-prevalence areas.

When the ANC assumed power – A National Aids Programme Director was appointed, with the initiative veering away from the direction outlined in the Aids Plan which lost strength and focus. Aids was recast as a purely health issue with Directorates restricted to health dept's and the people in these positions were from low levels within the civil service.
The gov then looked for disastrous quick fix solutions:
i. Sarafina II (did damage to the Health Dept and its links with civil society)
ii. Virodene – industrial solvent – audience with cabinet, circumventing the health establishment – ANC involvement with company set up by academics (removed chair of MCC replaced by more compliant person – seriously harming anti-Aids effort). This was also the start of politicians meddling in the science of HIV/Aids)
Soon after this Thabo Mbeki replaced Mandela as President and started to centralise government policy making, which meant that views held by senior politicians had a major impact on policy formulation and on public medical bodies, which were purged of people who didn’t share the President’s views.
Militaristic, paranoid, cliquish leadership style (eg, plot allegations). Warning to leadership pretenders. Intolerant towards any sort of disagreement, including on Aids policy. Together with PR constitution, destroy questioning culture.
In late 1998 the Health Minister announced that SA would not make AZT available for MTCTP on the basis of cost and inadequate health infrastructure … affordability has always been touted as the big issue.
This unleashed a storm of protest in SA and precipitated the founding of TAC
Started with a few activists, grew in number … using the tools of struggle: demonstrations, marchers, strikes, sit ins, letter writing campaigns, civil disobedience, individual and community education, courts, local and global solidarity. Music, song and poetry. It is an extension of how the ANC and internal resistance fought apartheid, without the armed struggle. As Zackie Achmat recently said: "It is a cruel irony of history that at the very moment when all the people of our country removed the shackles of racial oppression and created a free political life for all, that HIV/Aids establishes a new apartheid. The new apartheid exists between those who can buy health and life and those who die because they are poor. The tools we used against the apartheid regime we now utilise to demand the right to life and social justice for people living with HIV/Aids."

Eventually in 2001 government announced it would provide free HIV tests to pregnant women and those testing positive would be offered a short course of nevirapine and six months supply of infant formula. However, this was not put into practice at national level and the decision was referred back to cabinet.
In July of that year TAC took the government to court, with gov replying in court papers that it was unaffordable and would put too much strain on the health system.
Government only started rolling out MTCTP when being forced to do so by the constitutional court and by the incessant pressure of mass mobilisation by TAC and the spreading of information about MTCTP and why it was needed.
By mid 2003 SA’s MTCTP roll out was still being described as “a shambles”. The lack of national gov will to make it work has led to sub optimal implementation and unresolved operational problems.
These delays have cost the lives of about 35000 babies per annum!

Mbeki was elected President in 1999 and immediately raised the problem of toxicity in relation to AZT.
He became drawn to the work of a small group of Aids dissidents, particularly the proposition that HIV is a harmless passenger virus and that the symptoms associated with Aids are the result of poverty and lifestyle choices – and even the result of anti-retroviral medication.
The President’s intervention then altered the stance of the Health Minister, a doctor, who claimed that AZT weakened the immune system and could lead to mutations and birth defects.
By making these statements and abandoning scientific principles and protocols, and by giving dissident websites equal status with the MCC the SA gov propelled Aids policy making into a scientific dark age.
The government purged the public scientific bodies of people who publicly criticised him, created a National Aids Council with no medical representation or civil society health groups like TAC. And then created the Presidential International Panel of Scientists of HIV in Africa containing conventional scientists and dissidents in equal number. The ANC supported the President in these endeavours. This created an air of unbelief amongst scientists, confusion amongst those at risk of HIV and consternation amongst Aids workers.
A wedge was driven between the scientific community and the government, with a plea from senior scientists for Mbeki to keep clear of the scientific debate. Caucus.

Then, when quite legitimately attacking the pharma industry for pricing policies, he didn’t negotiate for bulk discounts, which were offered, nor did he consider ways of accessing generics. Instead he railed against those who supported the use of ARV’s.
In 1997 the gov passed legislation that would have enabled parallel importation and compulsory licensing of essential drugs. The pharma companies started court proceedings against the government claiming that this was in violation of WTO agreements and, thus, SA’s constitution. The case came to court in 2001 with TAC admitted to the proceedings as “friend of the court”, causing the pharma companies to want to settle. The SA gov settled by conceding the very issue (compulsory licensing) that the companies went to court over, thus illustrating that they had changed their position since 1997 because Aids activists had made the court case out to be about access to ARV’s. Gov no longer wanted to win the case, so settled
Mbeki supposedly withdrew from the scientific debate … waging battle privately in ANC caucuses but “the dead hand of denialism” seemed to weigh on Aids policy formation throughout 2002 and 2003, leading to a refusal to provide ARV through the public health system. Was this done due to cost concerns or the Mbeki Presidency?
It was only the pressure of TAC’s civil disobedience campaign and an impending election that caused the SA government to eventually in August of 2003 state that ARV’s do help to improve the quality of life of those at a certain stage of the development of Aids” Highly qualified statement, dependent on issues of toxicity, procuring and costing needs. After the election, the same health Minister was reappointed and the slow pace of progress continued. The cabinet asked the Health Minister to develop a plan for a national roll out of treatment including ARV’s.
The civil disobedience campaign was difficult. Cosatu wouldn’t participate as it questioned the legitimacy of the gov. It was not that we refused to recognise the legitimacy of the gov but rather it was aimed at a particularly unjust policy of non-action that allowed thousands to die a preventable death. The actions were non-violent but the participants understood the consequences. They had to be over 18 and to sign consent forms. It resulted in a number of TAC members being beaten up by police and the arrest of 18 for occupying gov offices.
But it led to a change in gov policy!

To date this has been implemented with torpor. TAC was forced to seek a High Court injunction in November of last year to get the Minister to publish the Appendix to the plan that included time scales and phases of the roll out. Eventually she admitted there was no such appendix. As we understand it by this time, by the gov’s conservative estimates 55 000 people should be in treatment. 18 000 are!
Just a couple of months before Nelson Mandela announced tearfully that his son had died of Aids, President Mbeki had stated that he knew no one who has dies of Aids! This is SA’s “moral void”. Just as in the case of Auschwitz, History will never forget.
This denialism is rampant within the ANC and SA society in general: Peter Mokaba, Parks Mankhlala … and SA soccer star.
The task remains a huge one.
TAC role now: continues to monitor roll out, exert pressure for greater resources, and has launched the Treatment Project to provide health workers and community members with ARV’s to build infrastructure to facilitate the roll out.
It is also a global struggle that is reaping rewards: the Global Fund. But drug prices remain too high for many. The US’s PEPFAR fund is fostering the growth of stigma and the failure of prevention by promoting an ideologically based abstinence-first approach that cannot work. These challenges will be overcome through global solidarity and the courageous work of Zackie Achmat and the tens of thousands of extraordinary SA’s.
Let me give them the final word: "Around the globe more than 3000 people die daily in poor countries of Aids-related illnesses. We die while drug companies post huge profits. We die because our gov’s are in denial of the seriousness of the HIV epidemic. We die because rich countries invest substantially more in war than in public goods. We die because we cannot buy life-saving medicines. Unlike our neighbours in the rich countries we die because we cannot afford to buy life."