More critical, though, was our case against the state. It is surely the government’s duty, not a civil society organisation’s, to enforce the law. Yet the state, instead of doing this, appeared to be helping Rath to break the law. I described the many letters and telephone calls from the TAC to the MCC and Department of Health officials and how they had achieved almost nothing. On the contrary, I showed that the actions of Tshabalala-Msimang and Mseleku had helped Rath.

We had powerful supporting affidavits. Francois Venter explained the science of HIV. Rob Dorrington, an actuarial scientist, who has led the development of the most respected model for estimating population statistics about the epidemic, demonstrated how we know that there’s a large HIV epidemic in the country. Andy Gray, a pharmacologist at the University of KwaZulu-Natal, who also sits on an MCC committee, explained how Rath’s vitamins actually exceeded the kinds of dosages that would allow them to be distributed without first being registered, how they contained a scheduled substance and how the manner in which he was distributing them, irrespective of their dosages and content, made them medicines. In South African law, a product is a medicine by virtue of the claims made about it. If you sell tea and claim it treats cancer, then it is a medicine. If you own a kiosk and sell AZT, marketing it merely as a sweetie for children, then the AZT is not a medicine. (However, you would still be acting illegally because AZT is a scheduled substance.) This is an essential point to understand about medicines law in this country. Rath and his lawyers and the government and its lawyers never seemed to get it. They responded by arguing that Rath’s products were food supplements, not medicines.

Leslie London, an expert in public health, explained in an affidavit that Rath had run a clinical trial and that it was illegal. … He also explained the guidelines that had been established in South Africa for conducting trials. He showed that Rath had not followed these. He examined several affidavits by TAC members who went to Rath’s health facilities and showed that they had not given proper informed consent to Rath’s agents. Importantly, London asserted that Rath’s experiment had violated an ethical principle known as clinical equipoise. This means that if you are a patient taking part in a clinical trial for a new medicine, you must receive the current standard of care in addition to the experimental medicine. Rath’s facilities only gave patients multivitamins; they failed to give patients with Aids ARVs, the current standard of care.

Two doctors, Peter Saranchuk and Kevin Rebe, testified that their patients had stopped taking Haart because of Rath’s facilities.
…
Rath’s way of dealing with the court process was to abuse it. We filed our court papers on 25 November 2005. The court rules specified that the answering affidavits had to be filed by 9 January 2006, but it is common for both sides to allow each other extensions, especially when the papers are voluminous. Brink defended himself separately from Rath and his other employees. He asked for an extension, which was granted, and filed his papers only slightly late, as did the state. Rath, however, delayed and delayed. When our lawyers wrote to Rath’s lawyers, Qunta Incorporated, asking when they were filing their response, promises accompanied by lame excuses were made and not kept. …

Irritated with Rath’s games, we applied for a court date. Lo and behold, a few days before the hearing, on 20 March 2007 – more than a year late – Rath filed nine volumes, or over 2,700 pages. His court papers included no fewer than four books, none relevant to the proceedings. His own affidavit consisted primarily of a long rant against the pharmaceutical industry and false allegations aligning TAC, Sama and all our expert affidavit deponents with it. It attached numerous scientific papers which according to Rath supported his case, but upon reading them we found that they actually contradicted what he was arguing.

If you file court papers so late, there is no obligation on the other side to accept them. We did not. So at the court hearing, Rath applied for an order condoning their late filing and allowing his court papers to be included. Judge Fourie of the Cape High Court was unimpressed. He said of Rath’s excuse for filing late that it ‘does not bear scrutiny’. He explained that Rath had shown a ‘flagrant disregard of the rules of court’. He gave a punitive cost order against Rath but nevertheless decided to allow his papers to be filed in the interests of justice. …

While Rath’s affidavit was bizarre, reading Anthony Brink’s affidavit felt like going through the looking glass into Lewis Carroll’s Wonderland. Brink filed 1,289 pages. Once more, instead of testifying about the facts of the case, Brink wrote a polemic that attacked not only our integrity, but the integrity of 51 judges of the Cape High Court as well as the Supreme Court of Appeal and Constitutional Court judges. This is not a recommended method for winning court cases.

He also attacked the MCC, comparing it to the Broederbond, the secret Afrikaner society that had unduly influenced the apartheid government. When it came to Aids, he had no qualifications to depose an expert affidavit, so he described himself as an autodidact. His testimony is replete with self-important descriptions and references to his own self-published, non-peer-reviewed ‘scientific’ writing. It includes asides about witch burning, donations by a pharmaceutical company to the Nazis and, reminiscent of the Castro Hlongwane document, an explanation of Aids as a white racist conspiracy. Could a trained advocate really have thought a court would find this acceptable?
…
At the time he wrote his affidavit, Sipho Mthathi was the general secretary of TAC, the organisation’s most powerful position. Achmat had withdrawn from day-to-day work and Mthathi was firmly in control of the organisation. A strong-willed and effective leader with an excellent understanding of politics, she was the main decision-maker and spokesperson for the organisation. Brink had no knowledge of the internal workings of the organisation, yet he chose to write the following racist nonsense under oath: ‘The TAC is essentially a cult-of-personality one-man-band practically owned and completely controlled by Achmat, its founder and leader. The Africans hired by the TAC to give colour to its administration are conspicuously mere ciphers echoing their master’s voice, with the letters sent out in their name seemingly ghost-written for them.’

Mthathi, who writes poetry, publishes opinion pieces, and has an honours degree from the University of the Western Cape and a higher diploma in education from Rhodes University, responded by attaching correspondence she had written to senior people in government. She stated: ‘Contrary to Mr Brink’s racist assumptions, I can write a letter. I do not need to have letters or articles ghost-written for me.’
…
Finally, two and a half years after filing our papers, the case got to court. The TAC Western Cape office organised protests of about a hundred people against Rath and the Minister of Health every day of the case. Our members filled most of the seats of the court alongside journalists and a motley array of Rath supporters. Rath himself had left the country and did not appear. Brink had approached our lawyers to settle on the basis that neither side would seek costs against each other. Since the case was set down for three days and because we suspected Brink in his madness would very likely take up an enormous amount of time and try to confuse the court, we decided to accept. We reckoned that if we won against Rath, Brink would be irreparably tainted by the judgment.

Exactly three months later, Judge Dumisani Zondi delivered his judgment. He declared Rath’s and Rasnick’s clinical trial unlawful and ordered them to cease. He interdicted Rath from running further advertisements claiming that Vitacell had medicinal effects on Aids. He then declared that the Minister of Health and her director-general had a duty to take reasonable measures to prevent Rath and his colleagues from running unauthorised clinical trials and adverts claiming that Vitacell had medicinal effects on Aids.
Back to Extracts…

…
The march was our biggest until then and possibly since. Between 10,000 and 15,000 people took part, a magnificent cross-section of South African society. White middle-class people from Sea Point and black and coloured working-class people from across the city all joined in. All three trade union federations, Cosatu, Nactu and Fedusa, participated. We also hired a train from Johannesburg which brought several hundred of our members from up-country. This large turnout showed how fed-up ordinary people were becoming with the state’s obstruction of treatment. We followed up the march with a statement that we would commence a civil disobedience campaign if the state did not announce a treatment plan and return to the negotiating table at Nedlac with the objective of signing the agreement. We called the proposed campaign ‘Dying for Treatment’.

I was nervous about civil disobedience. I was worried that it might backfire, that our membership would not understand why we were drawing on tactics used to fight apartheid and that public opinion, which we had fought hard to win, would turn against us. Achmat, however, was convinced it would work and he was supported by most of TAC’s leadership, including Majola, who was more in touch with what the members were thinking than most of us.
…
We planned our first civil disobedience action for March. It was our finest logistical effort. Somewhat paranoid about being bugged, the five or so people involved in planning it communicated on phones that I had got a friend, Gregg Gonsalves, to hire from an airport cellphone shop so they could not be linked to us. We held meetings with our members where we discussed the purpose of the campaign. It was made clear that being arrested was likely and that anyone who wanted to participate had to be 18 or over and sign a consent form which also committed its signatories not to use violence. Hundreds of our members signed up and a lot of the younger ones on the threshold of official adulthood bemoaned the fact that we would not let them take part. Yet except for a handful of the organisation’s leaders, no one knew the final plan until an hour or so before it was carried out. We gave our members enough information to know where to gather, but none of the details.

On the launch day we met at gathering points in Cape Town, Durban and Sharpeville outside Johannesburg and briefed the protesters. Then hundreds of us marched to police stations to demand that the Minister of Health and the Minister of Trade and Industry, Alec Erwin, be arrested for culpable homicide. We implicated Erwin for his failure to use his ministerial powers to bring down the prices of Aids medicines. We had also reliably heard that he was sympathetic to Mbeki’s views.

We handed over a docket, mainly prepared by Achmat, detailing the evidence against them. The plan was that we would refuse to leave until we were arrested. This took place on 20 March, one day before the commemoration of the massacre in 1961 when the Pan Africanist Congress marched to Sharpeville police station to demonstrate against the apartheid pass laws. This was not a coincidence, but it was coincidental that the American invasion of Iraq took place on the same day, reducing some of the media publicity we got. Though it was clear that the invasion was coming several days before, we were not willing to change the logistics of such a complex operation at such short notice. It was not the first time international events had overshadowed our plans. Once I phoned the Cape Times to inform a good Aids journalist that Sibongile Mazeka, the five-year-old child of one of our members, had died of Aids without treatment. The newspaper had previously carried a beautiful story about Mazeka’s plight. ‘No ways we can do it,’ said the journalist. ‘Something too big has just happened.’ The date was 11 September 2001.

In Sharpeville, TAC members dispersed not too long after handing over the docket and opening a case against the two ministers. In Cape Town, the police – who at that time got on quite well with us … – did not want to lock up the demonstrators. Eventually, they symbolically arrested about 60 people and immediately released them. Things were not so cushy at CR Swart Police Station in Durban. The police refused to cooperate and instead TAC supporters were ‘tear-gassed, sprayed with a water-cannon, punched, kicked and pushed around with batons’. Five people were hospitalised including Sifiso Nkabinde, TAC’s provincial organiser at the time. Human Rights Watch issued a statement condemning the police brutality.
…
So started our civil disobedience campaign. We performed a few more similar activities. On one occasion we held a sit-in at the Department of Trade and Industry offices in Cape Town, demanding to speak to Alec Erwin so that we could ask him why he was not using his ministerial powers to make generic ARVs available. We refused to move unless Erwin came. We knew from the onset this was unlikely to happen. That Erwin was in another city at the time made it even more unlikely. So 17 of us were arrested. We were charged and appeared in the Cape Town magistrates’ court several times before the charges were dropped.

On another occasion, a group of us temporarily prevented the Minister of Health from speaking at an event organised by Health Systems Trust at the Holiday Inn in Woodstock, Cape Town. We held placards accusing her of being responsible for 600 deaths a day. I remember being slightly startled by the cathartic release of anger as TAC members chanted ‘Murderer’ at the top of their voices. People in the audience joined us as we shouted, ‘Manto go to jail.’ An ugly fracas ensued, with Achmat, Nonkosi Khumalo and the minister exchanging insults. A famous photo was taken of Achmat sneering at the minister. He apologised later for making a personal insult about her wig, inspired apparently by a ditty composed by TAC members which suggested that Tshabalala-Msimang give her wig to Erwin (who is bald). However, none of us involved in the disruption have ever apologised for calling her a murderer. After the disruption and after the minister had finished her speech, one of our members threw her shoe at what she mistakenly thought was Tshabalala-Msimang’s vehicle (it was apparently a decoy vehicle). It landed harmlessly in the road. Several people reprimanded her. Another member, whose mother lay dying of TB in a nearby hospital, had to be restrained from throwing a stone. In all my years at TAC, this was the only time I ever took part in a demonstration where one of our members acted violently towards the person at whom our demonstration was aimed. Despite civil disobedience, occasional police brutality and the sheer number of demonstrations we have organised over our decade-long history, TAC members have – remarkably – restrained their justifiable anger.

The civil disobedience campaign generated an enormous amount of
publicity. We broke the law intentionally, willing to take responsibility for
doing so even if this meant going to prison. In our view, the moral cause
for which we were fighting, preventing thousands of avoidable deaths,
outweighed our duty to abide by the law. But the campaign brought
controversy as well. Some journalists who had previously reported TAC’s
events positively became more circumspect. …

I was grilled for what felt like hours by a presenter on a call-in radio show. He asked me why TAC had resorted to what seemed to him such undignified actions when we had successfully used the courts to get the state to implement PMTCT. The question showed a misunderstanding many people have about TAC’s litigation and the use of litigation in political campaigns generally. Court cases are costly and they often take a very long time to conclude. We could not wait so long for a treatment plan while thousands of people were dying. Moreover, there is no guarantee of victory in court. The PMTCT case was as close to a slam dunk as a court case can get. … Even if we did win, governments do not like being ordered to change their policies by courts. The state would most likely have carried out the judgment reluctantly, meeting the bare minimum of requirements to avoid contempt of court proceedings. To some extent this has been a problem with the PMTCT judgment.

Back to Extracts…

We were greeted by a Mr Vlok, a white-haired, bespectacled gentleman in a grey suit. His company is called NCM-O3, which stands for ‘Natural Complementary Medicine with Ozone’. His dingy office walls were covered with pamphlets promoting ozone as a treatment for Aids. How is ozone administered? Well, the name of the product says it all, by suppository up the rectum. It is best done at night according to Vlok.

He explained to us, somewhat incoherently and in a hushed tone, how Mark Shuttleworth – one of South Africa’s richest people and the first African in space – conducted an experiment in space which achieved the great breakthrough in ozone treatment. Shuttleworth, no doubt, would be most intrigued to learn that he has been part of such an auspicious medical discovery. Vlok also drew a fantastical picture of how ozone kills HIV. He explained to us that, unlike ARVs, ozone gets into the body’s HIV infected cells. The interviewer, Anna-Maria Lombard, asked him how ozone, which according to Vlok kills not only HIV but cancerous cells and many other viruses and germs, knew how to differentiate between healthy cells, viruses and germs. ‘The infected cells have a marker on them,’ he answered, as if it was obvious. Like a bullseye, I imagined. Vlok said that he tests for HIV on his premises (which, incidentally, is in breach of the National Health Act). He even showed us the test he uses. When people test positive, he reassures them that it is okay and that they won’t die.

His whole three-month package cost R2,000 to R4,000. He told us this was much cheaper than ARVs. But actually this is nearly double the price of ARVs in the private sector for three months’ supply. And ARVs have actually been shown to work. Vlok kept on stressing how he had worked in a hospital. Eventually Lombard asked what he did there. He answered sheepishly in Afrikaans, ‘I was a clerk.’

I did some research on the Internet into ozone therapy. A whole gamut of people offer it as a treatment for many diseases, including Aids. Vlok is not the first person to come up with this idea. Even his method of administering it is not unique. Ozone has in fact been tested as a treatment for Aids. I was surprised by this. In most of my encounters with quacks, they have sold products which have never been tested in properly controlled clinical trials. Perhaps this gives them sufficient leeway to market their products using anecdotes or their own badly conducted and often illegal clinical trials which they have dressed up in scientific jargon.

In the early 1990s, long before HIV had become the chronic manageable disease that it is today and when the search for treatments was desperate, a Canadian research team injected ozone into patients with HIV. They did this for eight weeks and then observed them for a month. The ozone treated patients did no better on any relevant measurement than a group
that did not receive the treatment. This means that ozone is unlikely to work against HIV. Admittedly, the Canadians used injections, not enemas, but I cannot see how the latter are likely to be an improvement.

Sometimes quack advertising is more subtle than Vlok’s and Aids is mentioned euphemistically or in a way that only the advertisers’ target market will understand. I have a pamphlet that I obtained in Cape Town’s largest township, Khayelitsha, home to the city’s highest concentration of people with HIV. This one says it treats umbulalazwe, the Xhosa word for Aids. Right outside Khayelitsha’s main shopping centre is a billboard with a large photo of the beautiful actress Joyce Skefu from the popular soapie Generations. She’s holding a bottle of Aloe4U, extra strength, which claims to boost the immune system naturally.

Not far from the City Hall in the centre of Cape Town there’s Diskom, a departmental chain store aimed at low-income shoppers. I went shopping there with the Health-e crew and bought Ingwe Booster, Impilo Gold, Impilo Sutherlandia, Impilo African Potato extract, Spiraforce’s Alo Vera and quite a few others. I could have bought many more, but after years of receiving an NGO salary, R250 was my limit. They all claimed to boost your immune system, which in South Africa is often a coded way of saying they treat Aids. These products were not hiding in an obscure dusty corner of the shop. The immune-boosting section is large, conspicuous and near the cash tills. Diskom is not the only shop selling these remedies. You can also find similar products with similar claims in other large chains. E-tv ran the Health-e documentary on the popular muck-raking programme 3rd Degree. At the end of the show, the presenter, Debora Patta, said that Diskom had agreed to remove these products. I went back to Diskom a few weeks later and then a few months later. Exactly the same remedies were on sale on exactly the same shelves.

Far more cavalier with the products they sell than any of these chains is your local chemist. We would like to see pharmacies as reliable purveyors of proven medicines. They are not. My local chemist has a big window advertisement selling Secomet, which allegedly treats a whole range of symptoms remarkably similar to those of Aids. In fact the manufacturer has made claims on its website that Secomet treats Aids. The company worked with Girish Kotwal, who used to be a professor at the University of Cape Town (UCT), to promote the product. Kotwal conducted dodgy experiments on university property with Secomet, which caused a small scandal. So the university reached a polite arrangement with him and he departed. In my capacity as TAC’s policy director I lodged a complaint against Secomet with the Department of Health’s Law Enforcement Unit (LEU) in November 2006. Nothing consequential came of it during the time that Tshabalala-Msimang served as Health Minister. Over two years later, and only after Barbara Hogan became Health Minister, one of the LEU’s inspectors tried to stop Secomet, but the unit was hopelessly underfunded and understaffed and the Director of Public Prosecutions declined to take action against the company.

The reach of quackery goes beyond marketing to predominantly working-class people; it also goes beyond race. Middle-class South Africa, white and black, indulges in quackery on a large scale. The ubiquity of quackery in South Africa is, as I explain in this book, a direct consequence of bad state policies and support for it by the country’s leaders. Unfortunately quackery is not just an absurd collection of giggles and gags. The Health-e investigation uncovered the fact that most of the scams – the ones with the exotic names, that is – are connected. The pamphlets are recycled with slightly different text and the names of the ‘doctors’ are changed. This is why you can read in one pamphlet that Professor Shafiq and Maama Zayna have a ‘new steaming method (Biocell Herb Method)’ and on another that Dr Mama Fatumo and Kibo have a ‘new steaming method (Biocell Herb Method)’. Many operate in the same buildings, and they simply get up and leave if they suspect the police are on to them. Health-e interviewed a man called Kingsley (presumably a pseudonym) who claimed he had been to one of these healers to rid his house of evil spirits and parted with hundreds of thousands of rands. So he laid a charge of fraud. I cannot help wondering if he is very gullible or a teller of tall tales.

And here is a decidedly unfunny story. Andile Madondile went to see traditional healers in the Free State and Cape Town. But his illness just got worse. His body was wasted and covered with blisters. So Andile tied a noose in a rope. He hung the rope from the roof of his shack. He placed a chair under the rope. He stood on the chair, put the noose of the rope around his neck, removed its slack, kicked the chair away, dropped and dangled.

Andile was born in Baragwanath Hospital in Soweto, Johannesburg. It is one of the world’s largest hospitals. It admits 150,000 patients and treats 500,000 outpatients a year. When Andile was born, on Christmas Day 1978 according to his mother, none of Baragwanath’s patients had HIV; today it treats more people with HIV than any other health facility on the planet.

Twenty-six years later, Andile tried to kill himself because he had Aids. As he swung from the rope, dizzy and gasping for breath, his three-year-old daughter, Elihle, walked into the room and screamed.
Back to Extracts…

By Eusebius McKaiser

Nathan Geffen”s admirably balanced and meticulously crafted Debunking Delusions; The inside story of the Treatment Action Campaign is a proverbial page turner.

The book is a permanent public record of our country”s shameful recent history of state-sponsored Aids denialism, and highlights the proliferation of quack remedies for HIV and Aids.

You walk away with a palpable sense that we ought, in Mandela-speak, “never again” to allow a South African government to get away with callous disregard for evidence-informed health policy interventions in the face of a public health challenge.

Geffen tells the denialism story in chilling detail. It is bad enough that quacks may emerge of their own accord, courtesy of delusions of ideological grandeur. But the lifespan of such evidence-averse quacks, not unlike flies attracted to a dustbin promising sustenance, can be lengthened by a culpable political leadership whose wayward beliefs and actions conduce to their existence. The middle chapters are self-contained studies of some of the bigger names in Aids denialism like Tine van der Maas and Matthias Rath, individuals who are not merely destructive on their own but particularly so in the context of a state machinery that legitimised their pseudo-scientific gobbledegook.

Geffen quotes Van der Maas in an exchange about her methodology for testing the efficacy of her garlic and olive oil remedy. Asked whether she had monitored the remedy”s impact on patients, she responded, “when you do not hear from patients, they usually are doing well. If they have a problem, they usually phone. . . “.

Besides these remedies not being endorsed by any peer-reviewed, respectable scientific journal, sheer commonsense would suggest that a needlessly dead human being cannot pick up a phone.

It is truly mindboggling that supposedly educated folk with reflective capacities, including Thabo Mbeki or Manto Tshabalala-Msimang, could have been enthralled by the likes of Van der Maas.
/div>
These quacks are not the cause of political denialism. The relationship between quacks and other denialists is one of mutual dependency. The quacks found a political environment that enabled them to peddle their wares. The political denialists, in turn, were given pseudo-scientific language to justify irrational conspiracies about racism-fuelled, Western-led pharmaceutical attacks on black Africans.

Geffen reminds us, for example, of a former provincial health minister, Peggy Nkonyeni, who once claimed “. . . that there is this thing called bioterrorism or biological warfare. This is where people can manufacture a virus and target a particular community that will be spread amongst a group of the population”.

The ridiculous implication, of course, is that HIV is an invented weapon of mass destruction.

The book includes some honest discussions that give it intellectual balance. There is a remarkable discussion, for example, about shortcomings of the first AZT trial. This trial lasted less than six months and consequently the medium-term impact of the drug was not well-understood. This, in turn, resulted in the initial marketing of the drug being based on an exaggerated set of claims about its efficacy, side-effects, and so on.

Needless to say, treatment for HIV and Aids have come a long way since, and the overall efficacy of AZT and other anti-retroviral drugs are beyond medical dispute.

The book suffers two excusable shortcomings. The minor shortcoming is that it was a literary mistake to try and weave into the overall analysis a subtext about the life of one Andile Madondile.

This was Geffen”s attempt to pull a Johnny Steinberg by offering us a bit of narrative journalism. We were supposed to see the human side of the quackery story. But this device does not work. One long soliloquy is placed in the mouth of Madondile. His story does not span the book. We do not get to know him. This tactic was unnecessary. There is a place for that kind of narrative and it”s in a project where the person”s actual life takes centre-stage in a full study of the human impact of denialism.

Most importantly, the subtitle of the book is inaccurate. As Geffen states: “After nine years of non-stop fighting with the pharmaceutical industry and government, the TAC leadership, worn out and cranky, had an unpleasant internal fight in 2007, resulting in several high-profile resignations.

“Having been involved in that argument, and having the utmost respect for my colleagues with whom I fell out, I will not say more on this. ”

It is therefore a marketing ploy to describe the book as the inside story of the TAC. That story has yet to be told. But this is not a big tragedy. What the book is actually about is something of greater public importance, a well-written account of a social movement”s brilliant role in holding a stubborn state and government responsible for its immoral political actions. Geffen can be more than proud of this illuminating effort.