MBEKI LETTER ON AIDS---THIS IS THE TIME TO APOLOGISE
Ever since President Thabo Mbeki decided to write his series of letters to "clarify" what he thought were misunderstandings about him, I developed a huge sense of unease.
This was because, history is always about a particular version of events that took place. History often has more than one version, depending on where the narrator stood at the time of its occurrence. My real unease arose from the fear that President Mbeki will at some point provoke others to respond and contradict his version and take the country 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 very soon, as some evoke deep pain that he may have been unaware of at the time. The HIV and AIDS saga is but one. There are a few others which one hopes will not be raised in these letters because it will be incorrect to to leave them unanswered. 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 which he has now declassified.
Interestingly if I had not read the responses of Professors Makgoba, Salim and Quarraisha Abdool-Karrim, I may have hesitated to respond as I hoped that all that needed to be said would somehow be said by someone. I have just realized that there is just too much to be brought to the attention of President Mbeki and the readers of his letters, besides all the correct responses that have been published by my colleagues as stated above.
President Mbeki has forced us to open the issues we tried to permanently deposit into 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 and I suspect there are many of us who have been reluctantly forced back into memory lane. I sketch a bit of history just to make the context to be clear because a cursory reading of Mbeki letters does not bring out the real context and tragedy of his statements.
As a Health MEC, I was the longest serving of my peers, on my eleventh year when I left the portfolio in October 2004. I became an MEC after twelve years in clinical practice, as a medical practitioner in public and private practice in three countries. As MEC for Health I was running a sessional clinic in Greys hospital in Pietermaritzburg, managing an HIV and AIDS clinic as a doctor under a brilliant team led by a very experienced physician, Dr Kocheleff.
He taught and supervised me because when we completed medicine, HIV and AIDS were unknown in medical circles. As an MEC in charge of creating policy on HIV and AIDS, I had only known about it after I qualified as medical doctor. 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 MK combatants in those countries and their neighbours. My first patient with HIV and AIDS was diagnosed in 1987. It was with huge disbelief when a senior colleague, Dr Sydney Shongwe, referred her to me and her signs and symptoms were unmistakeable.
She was referred to South Africa. Virology Professor Rubin Sher in Witwatersrand was the only country expert, known to us at the time. At the time there was no prospect of antiretroviral treatment and the course of the disease barely known. Sadly I watched the patient waste and ultimately succumb to fulminant Kaposis Sarcoma for which no expert could assist. There was no hope!
Thereafter we treated many more patients with supportive therapy aimed at associated complications and relief of symptoms as the only way open to the medical fraternity.
I left Swaziland. To my greatest shock, Zimbabwe was worse. Both myself and May, my wife, would share stories of the devastation based on our daily experience, as she worked in the children's unit in Harare and Parirenyattwa hospitals. I did my first personal HIV test and it took three weeks of horror and nightmares to await the results.
Both in Swaziland and Zimbabwe I had treated MK combatants who were afflicted by the scourge. So serious was the disease that members of the Umkhonto Wesizwe produced a video to bring the awareness to comrades living in Zambia, Tanzania, Zimbabwe and other forward areas. There was a lot of disbelief in the existence of this new disease amongst the cadreship. Most of them were cadres who had been trained in military combat, so the film was entitled: "AS SURE AS AN AK" The message was clear. The AK was the most lethal weapon they had been trained to use, so was HIV and AIDS - it was certain to kill you!
There was no special training given to anyone, be it ANC leaders, members or doctors about HIV and AIDS. After all we were all sojourners in different countries without any authority to deal with the epidemic but only to access available health services in the host countries. Those of us who learnt anything about this scourge, it was based on clinical exposure, literature and anecdotes from social circles.
When I left South Africa, there had been few vague rumours of one or two patients who were diagnosed, usually white male homosexuals. Even such stories were told with incredulity by narrators if not disbelief of the listeners, arousing curiosity to go and see for themselves.
When we returned after 1990, the virus had descended into South Africa. What we had witnessed in Zimbabwe faded into insignificance. It was shocking that the figures were rising extremely fast, making it clear that our country would see mortalities never seen in many of the SADC states combined. The panic amongst the medical fraternity was palpable.
In 1992, the exile community and the health professionals felt that the Apartheid government was not focussing on this pandemic and had no credibility to take on this fight. An initiative was championed from the ANC and NGOs in partnership with the government during the days of Dr Rina Venter. A huge meeting was convened called the NATIONAL AIDS CONVENTION OF SOUTH AFRICA, (NACOSA). The first programmes to combat the disease were established, though 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, focussing on all they could ever do, the awareness campaigns.
There was no treatment still, but the stigma and denial was rife amongst 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 mouths cracking from a fulminant thrush, skin crusted in sores from cancers and infections and body fluids dripping uncontrollably from all orifices. There are tragic stories of care givers, nurses and relatives who contracted the disease in the line of duty as they dispatched love and tenderness in caring for those infected.
Madiba took the lead, addressing community meetings as government adopted the World Aids Day. He became symbol of hope in the desperate fight against a powerful force. His leadership generated hope and enthusiasm amongst the foot soldiers despite the inadequacy of their weapons in confronting this scourge. Madiba retired, but continued to champion this cause and working with President Bill Clinton, remained prominent voices worldwide. This was a huge boost to the medical fraternity, who were under siege, knowing that other than symptomatic treatment and in vitro studies in search for a remedy, 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 in the desperation, 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 and in all, the new graves were in the majority and fast expanding. Mostly young people were dying and many of them had begun to accept this as their immutable fate. Health workers were traumatized and burnt out. Some exited the health care sector as a spectre of helplessness in facing deaths the whole day started to take its toll.
Enter President Thabo Mbeki!
I was amongst those who campaigned and supported him to become President of the ANC ahead of President Zuma. Despite his recall, I consider that Mbeki made a significant contribution in leading our country that 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 negotiations that brought peace reconciliation and brought an end to violent conflict and ushered in democracy in the country. He nevertheless had very serious errors of judgement that his recent letters will now ensure are never forgotten.
The pandemic was climbing to a climax with frightening predictions of high mortality, rising numbers of orphans and devastating impact on the future economy. A silent war was raging behind closed doors and in hospital wards. It was sweeping away lives of young, old, rich and poor. Unlike the violence that tore the country apart, this scourge was not accompanied by loud shrills of wailing voices and screams of fearful victims on television screens. There were no soldiers armed in guns and swords or impish of vigilantes wielding pangas and spears leaving streams of blood, wounded lifeless bodies and burning homesteads behind!
The HIV and AIDS could be ignored by the topmost authority in denial! The society silently suffered unfathomable pain, too embarrassed by stigma to expose the depth of the hurt.
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 diseases that doctors have failed to identify and sought supernatural interventions. The devastation was unprecedented.
When Mbeki started raising his controversial views on HIV and AIDS, the objections started as whispers. One evening I had a visit from Prof Abdool Karrim at home in Pietermaritzburg. He raised the concern about statements doing rounds in the internet space. I tried to reassure him until I spotted the letter written proudly by Dr David Rasnick. He was amongst the most known for his “HIV does not cause AIDS" doctrine. This group had been called the dissidents. Rasnick had met President Mbeki and he wanted to proclaim for the whole world to know about this important meeting.
Another world renowned German scientist, Dr Peter Duesberg who had been amongst pioneers in providing the genetic mapping of retroviruses, believed that AIDS as a syndrome could not have arisen from a retro viral infection many years later after the body had started producing antibodies against it. He advocated a good diet to boost immunity but warned that some medication could destroy the immune system and the retrovirus was a “mere bystander." Unfortunately, some political leaders and policy makers including President Mbeki believed them.
On the other hand, the American scientist Robert Gallo and French scientist Luc Montaigner accredited for the discovery of HIV insisted that there was a link between HIV and AIDS. These two contending world contradicting views played themselves out in our country. These scientists could afford to indulge in intellectual gymnastics and academic debate but President Mbeki could not afford such when the country was under siege. President Mbeki did not author the denialist script that is granted. By being its outspoken disciple, he had unknowingly 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 it had 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 glimmer of hope when AZT was demonstrated to have beneficial effect on HIV infected patients. This was at the time there were strong recommendations for the use of NEVIRAPINE trials to be started in the country as 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 demographic pyramid as the highest deaths were amongst 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 as well as the economy of the country. The life expectancy plummeted and the cost of health care skyrocketed as complex manifestations of known and hitherto unknown diseases decimated the population.
The NACOSA process ultimately resulted in a comprehensive strategy for the management of HIV and AIDS with the assistance of UNAIDS and WHO experts. This is the strategy that helped our country throughout all the tumultuous days of AIDS denials. This work was completed just as Dr Dlamini-Zuma was leaving and Dr Tshabalala-Msimang was appointed.
All officials and health workers used this as a guide to fighting HIV and AIDS and it gave everybody hope and direction. For those of us who lived through the devastation since the eighties began to see the light at the end of the tunnel. However, before adoption by cabinet, we had conversations with the medical doctors in the cabinet, as there was a delay in the adoption of the AIDS management plan.
Their dilemma was evident and it also explained the difficulty of a minister who had a clear understanding of what the President wanted even though the professionals and researchers had a different view on HIV and AIDS. South Africa implemented a plan that its President did not display his conviction in it, 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 amongst the health workers particularly doctors in KwaZulu-Natal which has bourne the heaviest burden of the pandemic. Many hospitals offered themselves for the trials and went ahead to prepare. This province currently treats ONE MILLION of the FOUR MILLION people on antiretroviral treatment in the country currently.
At the time, we had a meeting with the health care 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 prepared 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 government and pharmaceutical companies.
Whilst this matter was being discussed, President Mbeki instructed Minister Tshabalala-Msimang to invite this group of dissidents. I was first to be informed by the minister. We debated this matter as 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. 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 a scorn of the world, many of whom could not believe that with examples in African states about the devastating impact of the epidemic, South Africans would retrogress when everyone wished to assist in turning this situation around. The rest is history.
While the message from minister correctly emphasized the issues of nutritional support and boosting immunity, it soon sounded as denial of the causative link between HIV and AIDS, prompting the raging conflict with the Treatment Action Campaign (TAC) which took the government to court to force the roll out of Antiretroviral drugs.
Many of us were caught up in the middle of the fight. In KwaZulu-Natal, Premier 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! However our argument was that government needed to finalize 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, TAC fight for price reduction was rewarded in the fight to get fluconazole prices reduced by Glaxo as the same company charged ten times less in India than South Africa for the same drug.
Increasingly, Mbeki was identified with this confusing message casting doubt about the link between HIV and AIDS. He made these statements in public platforms and in private discussions amongst ANC leaders to the extent that if anyone insisted on the link between HIV and AIDS it was almost taken as a dig on Mbeki. This created a tension amongst us as ANC leaders, certainly in the province. The President's stance created confusion and resistance amongst some people to accept the seriousness of AIDS awareness messages.
The public discourse was difficult. I 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 his meeting with dissidents did not impact on the correct scientific policies of government.
Once I was invited to Washington by Ambassador Sheila Sisulu in South African Embassy to address some meetings calm the hostility, following the article I wrote to the Washington Post. Today I regret I even defended Mbeki, correct as it was to do so. These articles can be found on the web.
There were days we would plot with the Head of GCIS, Joel Netshitenzhe to stop press comments from the Presidency, i.e. "to find a way to remove the chief from the debate" so that those in this health sector can enter the debate and move issues forward. These statements began to affect clinical work in hospitals, as anti-retrovials were said to be too toxic.
Once the academics in the University of Natal, such as Prof Coovadia and others approached Minister Essop Pahad to tell him that they would protest publicly as they felt the government policy was undermined. I even recall that a meeting had to be convened by Deputy President Zuma at the time wherein I stated that I was ready to differ with the minister publicly on the issues raised. The ministry was forced to review their stand on the matters raised.
During this time, the outcry on this matter was taken to Madiba. By then Madiba had retired and it was a known secret that Madiba did not have much joy trying to reach out to his successor in office. So, Madiba went to National Executive Committee of the ANC. He requested to address the leadership and was allowed. 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 health care teams who feel helpless yet there are remedies in the market. What followed there 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 a suggestion of those who insinuated that Madiba was propelled by the quest for money. Many NEC members leapt to Madiba's defence. With the arm on his chin, Mbeki sat quietly and left the entire session of attacks and stormy exchange to run itself out, never once intervening to protect Madiba, who sat stony faced and dignified in the face of such scurrilous attack. Disappointed and hurt by members of the party he had led for long time, Madiba retreated.
Within a few days a similarly fulminant article was published in the Sowetan by Dumisani Makhaye, 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 the said pharmaceutical companies. The attack in the meeting and newspaper had left an impression from some of us that it was in defense of Mbeki's stance on the HIV and AIDS matter.
If the attacks were not engineered, it was even stranger still that Mbeki never called anyone to order as the President. Madiba's dignity was sacrificed for the 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.
One day much later, long after the death of Parks Mankahlana, as I walked out of NEC venue, I heard President Mbeki call my name from behind. As I turned, Mbeki handed me a document entitled " Castro Hlongwane Foot and Mouth AiDS..." 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 test 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 called TORCHES in short for the causative agents ie toxoplasma, rubella, Cytomegalovirus, Herpes Simplex.
In short, the argument was that the HIV tests is inaccurate as it can be positive in a large range of unrelated non-AIDS or non-HIV tests amongst pregnant women. This meant that the HIV tests are not reliable to indicate the retro viral infection. This meant that the diagnosis of HIV positive status will be unreliable to expose pregnant women to a toxic drug, nevirapine!
This would suggest that people would be poisoned for 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.
It was in that brief discussion on that meeting where 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 Genadendal residence by President Mbeki who presided. Present were ANC Premiers, Provincial Chairpersons, Health MECs and various leaders and a few ministers, making around thirty people. The "Castro Hlongwane Foot and mouth ..." document was presented.
Thereafter 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, which was where the "Castro Hlongwane...." document went wrong. 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. Clearly this was a meeting to whip us into line from what I could see. I however welcomed the open discussion on this matter. Where my shock came was when Max Mamase Eastern Cape MEC for Health stated that it was difficult to contain the debate in health MINMEC meetings because Dr Mkhize would argue with Dr Tshabalala-Msimang, and they felt it was "Gqirha versus Gqirha. We felt maybe Mkhize wants to take over as Minister of Health," Mamase informed the meeting.
I was stunned at the shallowness! The MINMEC meetings are formal meetings in which I thought the discussion was a valid debate between policy makers, health administrators and professionals. I discover 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 had curiosity about what defense I was going to offer. I explained that our role in that body is to ensure that correct decisions are taken by government department and implemented by all provinces. All issues are debated frankly and never personalized and since the roles are well defined, no contest for positions is possible amongst all deployed.
I had to point out that the basis of the inaccuracy in the "Castro Hlongwane Foot and Mouth...” document is the lack of what would be general knowledge amongst clinicians. There is a syndrome called TORCHES caused by various organisms which can affect pregnant women and the unborn children. It is well documented and is not ever confused with HIV infection. There can never be a generalization that an HIV test may be due to such unrelated syndrome in all women because it has distinct signs and symptoms that do not mimic AIDS.
I further explained that doctors who would do investigations on pregnant patients do so based on the disease pattern that is manifesting itself in a patient. The generalization in the document misleads unless this clinical approach is followed. The document is misleading and clearly was drawn by people who did not have the clinical interpretation of the manifestation of disease.
Coincidentally, my input ended in time for the lunch break, where after, I never again heard of the document. The rumours and innuendos increased, suggesting that I was against the President. 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 was also moved to a different portfolio, which I welcomed.
After the Polokwane conference in 2007,I had the privilege to be chairman of the Health and Education in the ruling party. 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 the health workers was boosted.
The 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 were 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 and others, to mislead the country while excluding the real foot soldiers who were fighting the battle every day. He made the fight unwinnable.
I am afraid President Mbeki lost an opportunity to reach out to the people of South Africa. His error of judgement was clear to many at the time, it's shocking that President Mbeki cannot see and acknowledge it. It now forces us to speak out.
With the clearest view and wisdom provided by hindsight, this was his time to apologise. He led the country astray with a wrong view which 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 that 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 the 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.
Dr Zweli Mkhize is Treasurer General of the ANC.
A version of this article first appeared in the Sunday Times.