In a couple of days, I will complete my first six years on antiretroviral treatment — I started taking HIV medicines on 05 September 2003. I am still on my first regimen zidovudine (AZT), lamivudine (3TC) and nevirapine (NVP). I am alive because of science and activism.
To remember those who have given their lives in the struggle for science and evidence-based medicine, this post includes two different but connected pieces of writing: Notes by Nathan Geffen from a debate at UCT and excerpts from a witness statement that I gave for The Guardian newspaper during 2008 in support of their legal defense against the notorious quack and vitamin salesman Matthias Rath.
We must never forget the people who died because of state-sponsored HIV denialism.
In Defence of Science: Seven points about traditional medicine and scientific medicine
By Nathan Geffen, 28 August 2010
This is a corrected version of a position argued by the author at a debate that took place at the University of Cape Town in August 2010 about traditional and scientific medicine. Geffen is the treasurer of the Treatment Action Campaign, but this paper presents his personal views only. He is also author of the book Debunking Denialism (Jacana 2010)
Scientists can be elitist and patronising. In that way, they are no different to any other people with power, including some traditional healers and including people who defend science, like myself.
There are multiple knowledge systems. Cultural diversity, including African culture, is a valuable treasure. Traditional medicine is used by people across the world. African traditional medicine, in particular, is used by millions of people across Africa. It is therefore important to build relationships with traditional healers to ensure that their patients receive appropriate care. Many organisations, such as the Treatment Action Campaign (TAC), attempt to do this, with varying degrees of success.
However, In critiques of medicine and, on the other hand, efforts to accommodate traditional healing, humanities researchers sometimes stand accused of being relativist, i.e. promoting or implying multiple incompatible positions as being true or valid. They also sometimes stand accused of being less than forthright about the problems with traditional healing. With this in mind, I present seven frank points which I hope will inform this discussion.
1. For the most part what is true is independent of what we believe. Many cultural or traditional beliefs, despite being fiercely held, are false. This applies to all knowledge systems. The scientific method is the best way to ascertain true facts about the universe and correct the often dogmatic beliefs that we acquire via tradition. In contrast to untested traditional and cultural beliefs, scientific knowledge depends on carefully controlled and recorded observations and experiments, done according to continuously refined standards developed across the world by people with diverse races, languages, creeds and cultures. The scientific method sometimes elicits the wrong answers, but it generally corrects mistakes over time. It has greater explanatory power and is right more often than dogma or tradition.
2. Once the placebo effect is exhausted, what heals is independent of what is believed to heal. It is one thing to acknowledge that different people have different knowledge systems, but knowledge systems are often factually wrong about the treatment of human illness. Traditional healing, whether it be Western Judeo-Christian traditional methods, homeopathy, acupuncture, Chinese herbs or African traditional medicine often has a healing effect. But it is very seldom that these effects are found to be more effective than what we call placebo, which is admittedly a complex concept in need of much greater understanding. Traditional healers can also have a profound effect on the psychological health of people. For example in Debunking Delusions, I describe the profoundly beneficial effect of a visit by Busisiwe Maqungo, a woman with HIV who takes antiretrovirals, to her traditional healer.
But there can be dire consequences of believing that something heals when it actually does not. TAC recently held a press conference in which we criticized ETV for hosting a faith-healing advertisement of a church called Christ Embassy. TAC has subsequently received many angry letters from members of this church since that press conference. We and the letter-writers have different knowledge systems. But consider this:
a. A woman with XDR TB and HIV was doing well on TB and antiretroviral treatment at a health facility in Cape Town. Her TB had smear-converted to negative.
b. But then she attended a Christ Embassy ceremony and was led to believe that she had been faith-healed. She consequently saw no need to continue taking her medicines.
c. Over a period of about a year she became ill and developed XDR TB again. She died.
d. Before she died, she transmitted XDR TB to her family members. They are now fighting for their lives.
These sad facts are true independently of how much respect we afford the knowledge system of the adherents of Christ Embassy.
In Debunking Delusions, Andile Madondile describes his visits to traditional healers which delayed him going onto antiretroviral treatment and consequently almost led to his death. As with Christ Embassy, no matter how much respect we afford the knowledge system of traditional medicine, it should be acknowledged that Andile’s story is a familiar one played out frequently in South Africa often with deadly consequences.
3. There is very little traditional medicine that works out the box (beyond placebo). Millions of dollars are spent testing traditional and herbal medicines (read Eduard Ernst and Simon Singh’s book Trick or Treatment to see how many studies have been done on acupuncture for example). In South Africa, there are researchers testing traditional medicine at the University of the Western Cape, University of Cape Town, University of Kwazulu-Natal and the Medical Research Council. Yet I know of only one traditional medicine that has been found to be effective at treating an HIV-related opportunistic infection, herpes, and even that study, published in an obscure journal, has not to my knowledge been repeated. Some traditional medicines show promise, but there have been many failures, for example African potato in people with HIV, Hoodia to control appetite, as well as mixed results with garlic.
Nevertheless many proven medicines have their roots in what we would consider natural items: Paclitaxel, an anti-cancer drug, is derived from the Pacific Yew tree. Zidovudine, the first antiretroviral, was first made using an extract from herring sperm. There are many more. But getting an effective medicine is not as simple as scraping off the bark of a yew tree or extracting sperm from a herring. A complex technological process has to be carried out to get the final beneficial medicine.
4. It is right that patients may choose, but it is not right that healers may offer whatever they choose. Choice is often poorly understood in this debate and it is used as a mantra to justify unethical behavior. Patients should have choice. Patients can choose the healing method they wish. But healers should not have unlimited choice. In fact they do not have unlimited choice in South African law or in any reasonable ethics system. We do not accept it when we are sold a dud DVD player or a car, or when we receive unsound financial advice or even when our General Practitioner fails to treat us properly. Likewise traditional healers cannot be said to have a choice in what they offer their clients. They are obligated not to do anything to their patients that will endanger their lives.
5. The economic incentives involved in traditional medicine are immense. In this debate, the economic interests of doctors and members of the pharmaceutical industry are frequently pointed out. But if you read Andile Madondile’s story in Debunking Delusions or walk around the alternative health shops in the Waterfront Craft Market or you watch who is selling traditional medicines at the Site B train station in Khayelitsha, it is clear that there’s serious money in traditional medicine as well as alternative medicine. And yet it remains largely unregulated despite the false and dangerous claims that many of these healers make and the delays in seeking appropriate treatment that they often cause.
6. There are racial misnomers in this debate. There are many high-quality African scientists working on AIDS: Peter Mugyeni, James Hakim and Paula Munderi to name a few. Yet the worst quacks I have dealt with over the last few years, who have hidden behind the paradigm of traditional medicine, have been mostly white. All cultures have traditional medicine. My culture too has its traditional medicines. Homeopathy is decidedly European in origin and complete quackery. In fact it is the romanticisation of African traditional medicine, while other forms of traditional medicine are not so much romanticized anymore at least not by academia, that suggests a racial undercurrent.
At its worst, the romanticisation of traditional medicine has been accompanied by a dangerous distorted form of African nationalism, exemplified by Thabo Mbeki, but in more recent times by Sowetan columnist Andile Mngxitama.
Natural science is empowering and socially uplifting when correctly utilised. Science is universal and to portray it as ‘western’ and not suited to some parts of Africa is like saying African children should not be taught mathematics at school. Presenting science as un-African, even if this presentation is implicit, is in fact racist.
7. Humanities courses need to teach science better. The quality of debate about medicine in the humanities indicates that graduates are not being equipped with the skills to differentiate between good science, bad science and outright nonsense. Are humanities courses teaching students basic statistics, how to read medical abstracts and articles, how medical research is carried out and how to search pubmed? It is this frequently encountered apparent lack of knowledge that undermines respect for what emanates from the humanities.
Extracts from witness statement Abdurrazack Achmat (July 2008)
56. I have worked mostly as a volunteer in the HIV epidemic for twenty years since at least 1987 in the Bellville Community Health Project, through the Organisation of Lesbian and Gay Activists and the Gay Association of South Africa. My views are based on this experience and extensive reading.
57. Ordinarily, any individual fears being diagnosed with a life-threatening illness. Globally, the stigma and discrimination related to sex, sexual orientation, drug use, sex work, race and class have all contributed to silence on HIV/AIDS. South Africa is no different.
58. The prevention and treatment of HIV in South Africa is hampered by a set of inter- connected prejudices, stereotypes, inequalities, fears and discrimination. These societal issues also make people in South Africa living with HIV/AIDS particularly susceptible to messages such as those spread by Matthias Rath and other quacks. The prejudice and discrimination associated with the disease in my experience, systemically prevents people living with HIV from being tested, practising safer sex and seeking treatment and care. HIV is an incurable chronic illness that requires lifelong treatment and, accordingly, many people irrespective of educational status, race, class, or gender would live in denial – and are predisposed to heed claims that there is an easy alternative ‘cure’.
59. The first stereotype is located in the issue of race and sexuality. Historically, the sexual relationships of gay men and black people have been stereotyped as promiscuous. In various ways through policy-makers, programmes, communities, families and individuals, these relationships are described as sinful or dangerous. These attitudes fuel a denial based on the stereotype of identity or the fear of acknowledging risk behaviour. Research continuously demonstrates that multiple concurrent partnerships contribute significantly to HIV transmission. (See De Waal, A. AIDS and Power: Why there is no political crisis – yet Zed Books (2006) at pages 9—33; see also Concurrent Sexual Partnerships Amongst Young Adults in South Africa by Parker et al (2007) at pages 17 and 46–49).
60. Second, gender and class inequalities play a significant role in the HIV epidemic in South Africa. More than 50 000 cases of rape are reported annually in our country. The majority of women and men have no decent income and unemployment stands at more than 4.5 million people. Many harmful customary practices on inheritance, virginity testing and bride-price inhibit risk-reduction.
61. Third, African Traditional Medicine (ATM) has played a significant role in the lives of the continents citizens for thousands of years.
61.1 The criminalisation of ATM during colonial conquest and under apartheid as witchcraft fossilised its practice. This policy of exclusion prevented basic science and clinical research, development of medicines, the training and recognition of traditional health practitioners.
61.2 Government failure under apartheid and in democratic South Africa to develop and recognise ATM has not stopped its practice nor limited its use. Millions of people in our country, especially those who cannot access public or private health care, use ATM. According to government the annual trade in raw medicinal plants is valued at 520 million South African Rands (one GBP = ZAR14). Prescribing medicines and consultation fees by approximately 200 000 people who claim to be traditional healers brings the total value of the industry to ZAR2.6 billion. (See Draft Policy on African Tradition Medicine for South Africa Government Notice 906 of 208, GG No. 31265 published on 25th July 2008 for public comment).
61.3 Many traditional healers using herbs have genuine historical knowledge derived from oral tradition. Many others can make claims on unsuspecting patients that would include the prevention, diagnosis and treatment of illness without any recorded scientific or clinical evidence. Government has adopted the Traditional Health Practitioners Act (Act 22 of 2007) but this law is not in force, nor, does it protect consumers or patients. In this unregulated environment, faced with inadequate health-care, and, HIV denialism many people are at the mercy of all manner of quacks including those who claim to practice ATM or “natural” medicine.
61.4 There is also a fear of the condescension, paternalism and colonial origins of medicine governed by science. Inferior apartheid education coupled with the fact that the majority of medical doctors are white (language barriers) and the fact quality health care has historically been the preserve of white and now middle-class people of all races creates a further barrier that exploits the fears of the majority of black African people.
62. Fourth, in all societies, science and the scientific governance of medicine is an accepted part of our cultural capital and it is not studied or even questioned by the vast majority of people. The scientific governance of medicine is accepted by all of us as a fact in the same way that scientific knowledge that governs the technologies of the pervasive mobile phones, television and the internet is accepted. While this “ignorance” does not (in most cases) hamper our education, quality of life or appreciation of science, it does however mean that most reasonable persons are ignorant in matters of pharmacology, virology, immunology and other requirements of science and medicine. In the Treatment Action Campaign, we describe this as scientific illiteracy. It is this lack of knowledge by most reasonable people, particular poor black people that Matthias Rath has cultivated to peddle his vitamins.
63. All societies have quacks, some benign and some malign. These societal issues of denial and vulnerability are legitimised and exacerbated when the country’s President and Health Minister who have denied that HIV exists, proactively undermine the science behind HIV/AIDS, its prevention and treatment. It is not the existence of quacks like Matthias Rath alone (who will always be with us) that has endangered the lives of millions of people living with HIV, it is the deadly combination of state-sponsored denialism with his quackery (and that of his cohorts) that has cost countless lives.