Dear Mbeki, now is the time to apologise for Aids denialism

Thabo Mbeki’s renewed defence of his Aids denialism has moved former health MEC Zweli Mkhize to speak out about the hurtful memories from a time he thought had long since been buried...

When President Thabo Mbeki decided to write a series of letters to “clarify” what he thought were misunderstandings about him, I felt a huge sense of unease.

 This was because  history is always about a particular version of events, and  often has more than one version, depending on where the narrator stood at the time of its occurrence. My  unease arose from the fear that President Mbeki would  at some point provoke others to respond and contradict his version, and South Africa would be taken back to the distasteful events that are part of our history.

There were certain issues I had hoped would not be the subject of his letters, as some evoke deep pain that he may have been unaware of at the time. The HIV/Aids saga is but one.

There are a few others that one hopes will not be raised in these letters. Our internal party discipline prevents us from engaging in public on matters we have an opportunity to discuss within our structures. His letters are like a classified document that  he has now declassified.

If I had not read the responses of professors Malegapuru Makgoba and Salim and  Quarraisha Abdool Karrim, I might have hesitated to respond; I had  hoped that all that needed to be said would somehow be said by someone else.

THINGS THAT MUST BE SAID

But I have realised that there is just too much to be brought to the attention of President Mbeki and the readers of his letters, beyond  the correct responses that have been published by my colleagues as stated above.

President Mbeki has forced us to re-open issues we tried to permanently deposit in  the deepest archives of our memories. He has forced us to again walk the sad journey we would have preferred to leave to researchers and historians to revisit.

In this response I will map my personal journey;  I suspect there are many of us who have been reluctantly forced back down memory lane. I sketch a bit of history  to make the context  clear because a cursory reading of the Mbeki letters does not bring out the real context and tragedy of his statements.

As health MEC in KwaZulu-Natal, I was the longest-serving of my peers, in my 11th year when I left the portfolio in October 2004. I had become an MEC after 12  years in clinical practice, as a medical practitioner in public and private practice in three countries.  As MEC for health I ran a sessional clinic in Grey’s Hospital in Pietermaritzburg,  managing an HIV/Aids clinic as a doctor under a brilliant team led by a very experienced physician, Dr Paul Kochelef.

He taught and supervised me because when I completed my medical studies, HIV/Aids was unknown in medical circles. I felt it important not to be making policy decisions on a pandemic whose clinical complexities I had never managed — and help it did.

While in exile, I was stationed in Swaziland and later Zimbabwe to provide medical cover for the underground ANC community and Umkhonto weSizwe combatants in those countries and their neighbours. I diagnosed my first patient with HIV/Aids  in 1987.  I felt  disbelief when a senior colleague, Dr Sydney Shongwe, referred her to me, but her signs and symptoms were unmistakeable. She was referred to South Africa. University of the Witwatersrand virology professor Ruben  Sher  was the only country expert  known to us then.

At the time there was no prospect of antiretroviral treatment and the course of the disease was barely known. Sadly, I watched the patient waste away  and ultimately succumb to fulminant Kaposi’s sarcoma, which no expert could assist with. There was no hope!

Thereafter we treated many more patients with supportive therapy aimed at associated complications and relief of symptoms; this was the only way open to the medical fraternity.

I left Swaziland. To my greatest shock, Zimbabwe was worse. I and May, my wife,  would share stories of the devastation we witnessed in  our daily experience, as she worked in the children’s unit in Harare and Parirenyatwa hospitals.  I had  my first personal HIV test and spent three weeks of horror and nightmares awaiting the results.

Mbeki made very serious errors of judgment that his recent series of letters will now ensure are never forgotten

Both in Swaziland and Zimbabwe I had treated MK combatants who were afflicted by the scourge. So serious was the disease that members of  Umkhonto weSizwe  produced a video to bring  awareness to comrades living in Zambia, Tanzania, Zimbabwe and other forward areas.

There were many in the cadreship who did not believe in the existence of this new disease.  Most of the disbelief was among  cadres who had been trained in military combat, so the film was entitled As Sure as an AK.  The message was clear: the AK47 was the most lethal weapon they had been trained to use —  and, likewise, HIV/Aids was certain to kill you.

There was no special training given to anyone, be it ANC leaders, members or doctors,  about HIV/Aids. After all,  we were all sojourners in different countries without any authority to deal with the epidemic, and having access only to  the health services in the host countries. Those of us who learnt anything about this scourge did so through  clinical exposure, literature and anecdotes from social circles.

AIDS PLAGUE SPREADS

When I had left South Africa, there had been a few vague  rumours of one or two patients who were diagnosed, usually white male homosexuals. Such stories were told with incredulity, and received with disbelief by the listeners, arousing curiosity to go and see for themselves.

When we returned after 1990, the virus had descended on South Africa. What we had witnessed in Zimbabwe faded into insignificance. It was shocking that the figures were rising so  fast, making it clear that our country would see mortalities not seen in many of our neighbouring  states combined. The panic among the medical fraternity was palpable.

In 1992, the exile community and the health professionals felt that the apartheid government was not focusing on this pandemic — and in fact lacked the  credibility to take on the  fight.

An initiative was championed by the ANC and NGOs in partnership with the government during the days of Dr Rina Venter. A huge meeting was convened, the National Aids Convention of South Africa, or Nacosa. The first programmes to combat the disease were established, although in reality it was the post-apartheid  democratic state that initiated the first government units in the Department of Health. These units were formed in provinces as well, focusing on the only thing they could:  awareness campaigns.

There was still no treatment, and  the stigma and denial were rife among  leaders and ordinary folk. It was a slow death, where the patient’s body would slowly shrink with all fat and muscle emaciated into hollow bones. Life withered away slowly with the   mouth cracking from fulminant thrush, skin crusted in sores from cancers and infections, and body fluids dripping uncontrollably from all orifices.

SERIOUS ERRORS

There are tragic stories of caregivers, nurses and relatives who contracted the disease in the line of duty, dispatching   love and tenderness in caring for those infected.

Madiba took the lead, addressing community meetings as the government adopted World Aids Day. He became a symbol of hope in the desperate fight against a powerful force. His leadership generated hope and enthusiasm among the foot soldiers, despite the inadequacy of their weapons in confronting the scourge.

Madiba retired, but continued to champion this cause and, working with US President Bill Clinton, remained a prominent voice worldwide. This was a huge boost to the medical fraternity, who were under siege, knowing that — other than symptomatic treatment  —  there was no cure.

Madiba’s voice was like the commander shouting orders to encourage his soldiers battling a fierce enemy assault. It made a huge difference to know that our leaders were on our side and understood the plight we were facing as health workers and the community.

New cemeteries were opened in towns and villages. The new graves were in the majority and multiplying. Mostly young people were dying and many of them had begun to accept this as their immutable fate. Health workers were traumatised and burnt out. Some exited the healthcare sector as the  spectre of helplessness in facing deaths the whole day started to take its toll.

Enter President Thabo Mbeki.

I was among those who  supported him to become president of the ANC ahead of President Jacob Zuma. Despite his recall, I consider that Mbeki made a significant contribution in leading our country, which  must be respected. There are many who have disagreed with him on many issues;  that is normal and acceptable. President Mbeki, together with other leaders,  had played a pivotal role in the negotiations that brought peace and  reconciliation, brought an end to violent conflict and ushered in democracy in the country.

He nevertheless made  very serious errors of judgment, which  his recent letters will ensure are never forgotten.

SILENT WAR

The pandemic was climbing to a climax with frightening predictions of high mortality, rising numbers of orphans and a devastating impact on the future economy.

A silent war was raging behind closed doors and in hospital wards. It was sweeping away the lives of young, old, rich and poor. Unlike the violence that had torn the  country apart,  this scourge was not accompanied by the loud shrill of wailing voices and screams of fearful victims   on television screens. There were no soldiers armed with  guns and swords, or impis and vigilantes wielding pangas and spears leaving streams of blood,  lifeless bodies and burning homesteads behind. Society silently suffered unfathomable pain, too embarrassed by stigma to expose the depth of the hurt.

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HIV/Aids could be ignored by the topmost authority, in denial.

Friends and relatives could not admit the existence of the illness.  Many sought refuge in the realm of spirituality for support  while others interpreted this as some imaginary witchcraft or disease that doctors had  failed to identify, and sought supernatural intervention. The devastation was unprecedented.

When Mbeki started raising his controversial views on HIV/Aids, the objections started as whispers.

One evening, I had a visit from Professor Salim Abdool Karrim at home in Pietermaritzburg. He raised concern  about statements doing the rounds on  the internet. I tried to reassure him — until I spotted the letter written proudly by Dr David Rasnick. The American doctor was one of those known for the  “HIV-does-not-cause-Aids” doctrine. This group was  called the dissidents.

Rasnick had met President Mbeki and he wanted  the whole world to know about this important meeting.

Another scientist, world-renowned  Dr Peter Duesberg,  who had been among the pioneers in providing the genetic mapping of retroviruses, believed that Aids as a syndrome could not have arisen from a retroviral infection many years after the body had started producing antibodies against it. The German scientist advocated a good diet to boost immunity. He  warned that some medication could destroy the immune system and the retrovirus was a “mere bystander”.

BELIEVING A FABLE

Unfortunately, some political leaders and policymakers, including President Mbeki, believed them.

On the other hand, the American scientist Robert Gallo and French scientist Luc Montagnier, accredited with  the discovery of HIV,  insisted that there was a link between HIV and Aids.

These two contending, contradictory, views played themselves out in our country.

The  scientists could afford to indulge in intellectual gymnastics and academic debate, but President Mbeki could not afford such when the country was under siege.

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President Mbeki did not author the denialists’ script,  granted. But by being its outspoken disciple, he had  unwittingly turned himself into its undeniable global champion.

Most medical researchers and clinicians believed there was a definite link. From their clinical experience, they could only confirm that a new causative agent not previously described in regular medical literature was at play, and that it had a devastating impact,  manifested in unusual,  unmanageable complications and resulting in unprecedented mortality. Hence they agreed with the theory linking HIV and Aids.

New research brought a glimmer of hope when AZT was demonstrated to have a beneficial effect on HIV-infected patients. This was at a time when there were strong recommendations for  Nevirapine  trials to be started in South Africa because  mother-to-child transmissions had been taking a toll on babies infected at birth.

The mortality of babies from HIV-positive mothers was as high as those of the mothers. This phenomenon resulted in the inversion of the demographic population  pyramid, as the highest number of  deaths were among the child-bearing and economically active population, especially women, as well as the youngest —  the newly born.

This posed a long-term threat to the demographics, population development and   economy of the country. Life expectancy plummeted and the cost of healthcare skyrocketed as complex manifestations of known and hitherto unknown diseases decimated the population.

MANTO TAKES CHARGE

The Nacosa process ultimately resulted in a comprehensive strategy for the management of HIV/Aids with the assistance of UNaids and World Health Organisation experts. This is the strategy that helped our country throughout  the tumultuous days of the Aids denials.

This work was completed just as Dr Nkosazana Dlamini-Zuma was leaving the Health Ministry and Dr Manto Tshabalala-Msimang was coming in.

 Officials and health workers were all using  the comprehensive strategy  as a guide to fighting HIV/Aids and it gave everybody hope and direction. Those of us who had lived through the devastation since the 1980s began to see the light at the end of the tunnel.

However, there was a delay in the cabinet’s adoption of the Aids management plan. We  had conversations with the medical doctors in the cabinet. Their dilemma was evident. The delay was also explained by   the difficulty of having a health minister who had a clear understanding of what the president wanted even though   professionals and researchers had a different view on HIV/Aids.

South Africa implemented a plan for  which its president had no conviction,  judging by his public utterances.

When the recommendation to use Nevirapine for infected mothers to save the babies was being discussed, there was a lot of excitement among   health workers,  particularly doctors in  KwaZulu-Natal, which has borne  the heaviest burden in  the pandemic  (KwaZulu-Natal  currently treats one million of the four million people on antiretrovirals   in South Africa).  Many hospitals offered themselves for the trials and went ahead to prepare.

At the time, we had a meeting with the healthcare teams,  especially the doctors, who  assured me that they could do this trial in not less than two-thirds of the hospitals in the province. They pleaded that their consciences did not allow them to sit and watch as children died, a view I shared. They were ready to try this preventative method to save the babies.

I agreed and took the matter to the minister and MECs. I was disappointed and defeated when the approach was changed to allow only two hospitals at most in each province.

What complicated the matter was the high cost of antiretroviral treatment at the time. We all were agreed that something had to be done to make the drugs affordable. Pharmaceutical companies had priced the drugs very high and a whole issue arose about fighting for compulsory licensing of drugs as this matter was a calamity unfolding. There was a court battle between the government and pharmaceutical companies.

While this matter was being discussed, President Mbeki instructed Minister Tshabalala-Msimang to invite the Aids  dissidents to South Africa. I was first to be informed of this by the minister. I raised the harm such a visit would result in. When it was clear we could not agree, I suggested that we should send a delegation of MECs as a few of us were activists dealing with these matters long before the unbanning of the ANC. I further suggested that the Nevirapine trials be fast-tracked so that the visit should not overshadow the message.

The visit by the dissidents took place and South Africa became the  scorn of the world. Many could not believe that,  with examples in African states of  the devastating impact of the epidemic, South Africans would retrogress when everyone wished to assist in turning this situation around.

 The rest is history.

CONFLICT WITH THE TAC

While the message from the minister correctly emphasised the issues of nutritional support and boosting immunity, it soon sounded as though it was a denial of the causative link between HIV/Aids, prompting   raging conflict with the Treatment Action Campaign,  which took the government to court to force the roll-out of antiretroviral drugs.

Many of us were caught  in the middle of the fight. In KwaZulu-Natal, premier Lionel Mtshali joined the TAC  in court. A strange situation arose wherein the premier and MEC were on opposite sides of the same issue in court. This was embarrassing!

Our argument was that the government needed to finalise the Nevirapine trials and expand the treatment to all centres, hence a court order was not necessary.

I raised with the minister that we did not need this. It was clear she needed more support from her superiors to act differently. On the positive side, the  TAC fight for price reduction was rewarded and fluconazole prices  — that had been 10 times higher in South Africa than in India — were reduced  by Glaxo.

MBEKI SPREADS CONFUSION

Increasingly, Mbeki was identified with the  confusing message casting doubt on  the link between HIV and Aids. He made such  statements on public platforms and in private discussions among ANC leaders, to the extent that if anyone insisted on the link between HIV and Aids it was almost taken as a dig against Mbeki. This created  tension among us as ANC leaders, certainly in the province. The president’s stance created confusion and resistance among some people to  Aids-awareness messages.

The public discourse was difficult. I have looked at a number of articles in which I tried to protect the president by insisting that he had a right to  discuss or debate all available views and meet whoever he wished, and said his meeting with dissidents did not impact on the correct scientific policies of the government. 

I was invited to Washington by ambassador Sheila Sisulu  to address some meetings at  the South African embassy to calm the hostility following an  article I wrote in  the Washington Post. Today I regret I  defended Mbeki, correct as it was to do so.  These articles can be found on the web.

With his chin in his hand, Mbeki sat quietly and left the entire session of attacks and stormy exchange to run itself out, never once intervening to protect Madiba

There were days we would plot with the head of the Government Communication and Information System,  Joel Netshitenzhe, to stop press comments from the Presidency — that is, “to find a way to remove the chief  from the debate” —   so that those  in the health sector could  move issues forward. 

The Presidency statements began to affect clinical work in hospitals, as antiretrovirals were said to be too toxic. Once,   academics from  the University of Natal approached Minister Essop Pahad to tell him that they would protest publicly as they felt  government policy was being undermined.

I even recall that a meeting had to be convened with the then deputy president Zuma, wherein I stated that I was ready to differ with the minister publicly on the issues raised. The ministry was forced to review its stand.

MADIBA INSULTED

The outcry was taken to Madiba. By then he had retired and it was an open  secret that he  did not have much joy trying to reach out to his successor in office. So, Madiba went to the national executive committee of the ANC.  He asked  to address the leadership and was allowed to do so. Madiba spoke of the pain and suffering as a result of the deaths due to the Aids pandemic and the hopelessness and frustration of doctors and healthcare teams.

What followed  was unbelievable.

A number of members launched a scathing attack on Madiba, stating that he had retired and should leave state matters and go home. Most repulsive was the  suggestion  that Madiba was propelled by the quest for money.  Many NEC members leapt  to Madiba’s  defence.

With his chin in his hand, Mbeki sat quietly and left the session of attacks and stormy exchanges  to run itself out, never once intervening to protect Madiba, who sat stony-faced and dignified in the face of such scurrilous attacks. Disappointed and hurt by members of the party he had led for a long time, Madiba retreated.

Within a few days a similarly fulminating article by Dumisani Makhaye was published in the Sowetan, arguing that Madiba had sold out to the pharmaceutical companies for personal benefit. In this article, it was suggested that his stance was encouraged by the finances received by his foundation from said pharmaceutical companies.

The attacks in the meeting and newspaper left the  impression on  some of us that it these were in defence  of Mbeki’s stance on the HIV and AIDS matter.  If the attacks were not engineered, it was even stranger that Mbeki never called anyone to order as Madiba’s dignity was sacrificed for  Aids denialism. Those who participated in attacking Madiba  were known to be close to Mbeki and that line of division played itself out later and persisted in the divisions of the 52nd ANC conference of 2007 held in Polokwane.

A NOTORIOUS DOCUMENT

One day, much later, long after the death of Mbeki’s spokesman,  Parks Mankahlana, as I walked out of an NEC venue, I heard President Mbeki call my name from behind. As I turned, Mbeki handed me a document entitled “Castro Hlongwane, Caravans, Cats, Geese, Foot & Mouth and Statistics: HIV/Aids and the Struggle for the Humanisation of the African” and asked me to read it. This was very unusual but I was grateful for the generosity, as I went to scan the document during lunch time. I was shocked.

I came back after lunch and requested to discuss the contents with Smuts Ngonyama, the head of the president’s office, which I later briefly did.

The document was a combination of completely unrelated issues, but I focus on its arguments that the antigens found in HIV tests have a cross-reaction that gives the same outcome with a number of conditions such as foot-and-mouth disease antigens  and infective conditions that can be found in pregnant women. These diseases are known by the acronym  Torch   for the causative agents toxoplasma, rubella, cytomegalovirus and herpes simplex.

In short, the argument was that the HIV test is inaccurate as it can be positive in a large range of unrelated non-Aids or non-HIV tests among  pregnant women. This meant  HIV tests were not reliable to indicate the retroviral infection, and  diagnosis of HIV-positive status would  be an unreliable indicator of the need to expose pregnant women to a toxic drug, Nevirapine. 

This would suggest that people were being  poisoned to fulfil  the profit motives of pharmaceutical companies, thus making the antiretroviral-trial issue both an ethical and political matter  in which commercial profiteering  was recklessly exposing the lives of poor and innocent people to risk.

VOODOO SCIENCE

It was in that brief discussion that  I politely tried to point out that the article was misleading and was based on a wrong premise. Soon thereafter a large meeting was convened at the president’s official residence, Genadendal, by  President Mbeki, who presided. Present were ANC premiers, provincial chairpersons, health MECs, various leaders and a few ministers, making around 30  people. The “Castro Hlongwane Foot and Mouth” document was presented.

Thereafter a Dr Mhlongo, a specialist family physician  from Medunsa, made a presentation that included the epidemiological surveys on tuberculosis over decades.  Correctly, he pointed at the socio-economic basis of tuberculosis and the declining pattern as development progressed. I felt conclusions from his presentation lacked a clinical perspective, as did  the “Castro Hlongwane Foot and Mouth” document.

Mbeki expressed his frustration as to why the comrades in the health sector had not dealt with this matter.

A variety of responses were received from various leaders, especially the MECs of health. From what I could see, this was a meeting to whip us into line. I, however, welcomed  open discussion on the matter.

SHALLOW ATTACK ON ME

Where my shock came was when Max Mamase, the  Eastern Cape MEC for health, stated that it was difficult to contain the debate in health ministry-MEC meetings because Dr Mkhize would argue with Dr Tshabalala-Msimang, and they felt it was “gqirha vs gqirha”.

“We felt maybe Mkhize wants to take over as minister of health,”  Mamase informed the meeting. I was stunned at the shallowness! The ministry-MEC meetings were formal meetings in which I thought the discussion was a valid debate between policymakers, health administrators and professionals. I discovered that day that some colleagues thought it was a  personal contest for positions.

Now I had to respond. As I looked at comrades across that long table,  with the president at the head, it was clear they were curious  about what defence I would offer. I explained that our role in that body was to ensure that correct decisions were taken by government departments and implemented by all provinces. All issues were debated frankly and never personalised and, since the roles were well defined, no contest for positions was possible among all who had been  deployed.

He made the fight unwinnable, a commander who issued wrong instructions and left his soldiers to be defeated

I had to point out that the basis of the inaccuracy in the “Castro Hlongwane Foot and Mouth” document was the lack of what would be general knowledge among clinicians. I explained that the  Torch  syndrome caused by various organisms  could affect pregnant women and their unborn children; it is well documented and is not ever confused with HIV infection. There can never be a generalisation that an HIV test may be due to such an unrelated syndrome in all women, because it has distinct signs and symptoms that do not mimic Aids.

I further explained that doctors who do investigations on pregnant patients do so based on the disease pattern that is manifesting itself in a patient. The generalisation in the document misleads unless this clinical approach is followed. The document itself was misleading and clearly was drawn up by people who did not have the clinical interpretation of the manifestation of disease, I told them.

Coincidentally, my input ended in time for the lunch break, whereafter  I never again heard of the document. The rumours and innuendos  suggesting that I was against the president increased. I stopped attending the health ministerial meetings as these clearly were no longer adequate to secure a dispensation to face one of the worst calamities that our country and the world had  faced. At that time I also was moved to a different portfolio, which I welcomed.

ZUMA TAKES OVER

After the Polokwane conference in 2007, I had the privilege to be chairman of the health and education committee in the ANC. Things changed with the fourth administration. President Zuma and Minister Aaron Motsoaledi  led the implementation of the Aids management plan and championed it aggressively.

The morale of  health workers was boosted. Mother-to-child transmission was reduced from 25% to less than 2%. Life expectancy drastically increased, from 49 years to about 62, something I never knew could happen in epidemiological studies. The  horrid spectre of the scourge was at last contained. Funerals were reduced and lives  saved.

This is not a matter of Mbeki and Zuma but a serious matter of our country that I had hoped I would never be forced to discuss in this manner.  I have been pained by the revelation that the “Castro Hlongwane Foot and Mouth” document was authored by President Mbeki, among others, to mislead the country while excluding the real foot soldiers who were fighting the battle every day.

He made the fight unwinnable.

LOST OPPORTUNITY

I am afraid President Mbeki lost an opportunity to reach out to the people of South Africa. His error of judgment was clear to many at the time. It is  shocking that he cannot see and acknowledge it. It  forces us to speak out.

With the clear view  and wisdom provided by hindsight, this was his time to apologise. He led the country astray with a wrong view  that  he was made to believe was true.

We all understand he is neither a researcher nor a scientist. We would all forgive him, as very little was known about this  pandemic at the time, and a corrective decision has begun to reverse the calamity  he presided over.

We, the foot soldiers,  were forced to fight on our own while, out of loyalty, we defended a commander who issued wrong instructions and left his soldiers to be defeated by a ferocious enemy. If he had kept quiet, we would all have understood the complexities of  matters of state and his leadership in good faith.

When the ancient praise-singers described Zulu monarch Dingane, they called him “unomashikizela, umashiya impi yakhe”, a commander who dithered, dilly dallied and ultimately abandoned his warriors.

Chief, it is not too late to reflect again, otherwise, this is one reason why you will not be forgiven by history —  in spite of writing it.

- Mkhize is treasurer-general of the ANC.