糖心Vlog

Unwanted side-effects

When anthropologists pointed out that cultural factors impeded tropical disease treatment campaigns, some fellow scientists reacted with outrage

Published on
May 30, 2013
Last updated
June 10, 2015

They found that there was often confusion about why those without symptoms needed to take the drugs, which in some cases gave rise to rumours or conspiracy theories

When Melissa Parker, senior lecturer in social anthropology at Brunel University, was doing fieldwork in a Ugandan health centre close to the Congolese border, she remembers a man on a motorbike arriving from the Ministry of Health.

He came over the horizon laden with drugs: praziquantel (for treating schistosomiasis) on one side, ivermectin (for lymphatic filariasis) on the other. It was already late, about to get dark and a long way back to the district capital, Parker recalls, 鈥渟o he only spoke to one person, who was just the guard, and said: 鈥楪ive these to the teachers, tell them to hand them out tomorrow to all the children鈥 - and off he went.

鈥淚vermectin had never come to that village before. The next day it was handed out by schoolteachers who didn鈥檛 even know what IVR stands for. On paper, everything seems to be in place for proper communication with schoolteachers and voluntary drug distributors, but the reality is that they get a box and the different drugs are handed out together, even though they are meant to be given two weeks apart, one on a full stomach and the other on an empty stomach.鈥

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This is only a single story, but it touches on far wider concerns that Parker has raised in a series of articles written with Tim Allen, professor of development anthropology at the London School of Economics. All examine programmes of mass drug administration (MDA) targeted at a rather diverse group of 鈥渘eglected tropical diseases鈥 (NTDs) that had traditionally received far less attention than the 鈥渂ig three鈥, malaria, tuberculosis and HIV/Aids, until the United Nations Millennium Project proposed a number of 鈥渜uick win鈥 interventions in 2005.

These interventions now count as a major global health initiative. Alongside large sums of money from the US Agency for International Development and the Bill and Melinda Gates Foundation, and millions of free drugs from pharmaceutical companies, the UK鈥檚 Department for International Development pledged 拢195 million in 2012.

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Parker and Allen carried out two weeks of fieldwork in 2007, and then five weeks鈥 follow-up in 2011, to look at the realities of mass drug administration on the ground in Tanzania. (They also did similar work in Uganda between 2005 and 2009, surveying about 100 villages in all.) In 2012, they published a paper in the Journal of Biosocial Science titled 鈥淲ill mass drug administration eliminate lymphatic filariasis? Evidence from northern coastal Tanzania鈥.

Enthusiasts for MDA, they noted, had claimed that 鈥渆limination [of the disease] will be a possibility by 2020鈥. Yet experts have argued that in areas with particularly high rates of infection, coverage levels of up to 90 per cent and 鈥渕ultiple rounds of treatment鈥 are necessary. Parker and Allen鈥檚 research on the ground indicated that the take-up of drugs was often far lower, and had declined over time, and they went on to explore the social, economic and political reasons why this might be the case.

Two of the most striking clinical symptoms of lymphatic filariasis are a swollen scrotum and swollen limbs, but local people tended to see these as separate afflictions (and to blame the former on witchcraft or sexual relations with a menstruating woman rather than mosquito bites). There was often confusion about why those without symptoms needed to take the drugs, which in some cases gave rise to rumours or conspiracy theories.

One woman believed that the drugs were designed to cause infertility, while a man commented: 鈥淚n this village we cry for water鈥hey haven鈥檛 brought water for free, but they鈥檝e brought drugs for free. Why? These free drugs have to be for an experiment鈥︹

One of Parker鈥檚 PhD students, Julie Hastings, had first-hand experience of strongly negative reactions to MDA while working in a Tanzanian village called Doma.

Rumours were doing the rounds that children had died after being given drugs in primary schools. Teachers were attacked and property damaged in the city of Morogoro. In the school where Hastings was monitoring drug distribution, about 75km away, a distraught father turned up and tried to locate his daughter. As a crowd gathered and the mood got ugly, Hastings was forced to take refuge in the headmaster鈥檚 house - and eventually had to be rescued by armed police.

African child with pill

It was clear, Hastings writes in her thesis, that 鈥渁 lot of people thought I had personally brought medicine into the village to harm their children鈥. Official reports blaming 鈥渁nti-government hooligans and agitators鈥 for the riots ignored many other reasons why the rumours had been readily believed.

Another factor flagged up by Parker and Allen was a reliance on 鈥渧illage- based drug distributors鈥, who were often unable to respond effectively to local concerns, to visit everyone in widely scattered communities or to overcome hostilities between Christians and Muslims. Taking all these points together, the two researchers concluded that 鈥渋nsufficient鈥 levels of drug uptake in the places they were studying meant that 鈥淢DA is having declining effects on disease control鈥. It was therefore essential to develop 鈥渕ore adequate monitoring鈥 and to 鈥渇ine-tune mass treatment programmes according to ecological, biological and social factors operating at a local level鈥.

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None of this sounds particularly surprising or inflammatory, although Parker and Allen have elsewhere built on this research to offer a broader analysis that has proved highly contentious. A good example is an earlier paper by the two scholars, 鈥淭he 鈥榦ther diseases鈥 of the Millennium Development Goals: rhetoric and reality of free drug distribution to cure the poor鈥檚 parasites鈥, published in Third World Quarterly in 2011.

In Tanzania, they write, they found 鈥渁 persistent practice of increasing treatment numbers as reporting was passed up through the system鈥. In Uganda, despite 鈥渓ip service鈥aid to the importance of health education鈥, the reality was that 鈥渃ommunication with target populations is not prioritized, is mostly superficial, and can be experienced as patronising鈥.

In pulling their arguments together, Parker and Allen suggest that 鈥減roper monitoring and accountability鈥 are needed to 鈥渃reate adequate space for debate and to learn from what does not work鈥. Unfortunately, schools of public health seemed 鈥渟o caught up in a desperate scramble for grants that they will not be able to do that鈥. Although the authors had 鈥渟een the benefits for impoverished people at some of our research sites鈥 and believed that there was 鈥渁 remarkable opportunity to make a real difference to large numbers of deprived people鈥, it was 鈥渉ard not to be exasperated by the grandstanding rhetoric and exaggerated claims of some protagonists鈥.

There are signs that Parker and Allen鈥檚 arguments have recently begun to attract the attention of policymakers. In a debate in the House of Lords on 30 January, Baroness Hayman put a question to the government about 鈥渨hat progress has been made in combating neglected tropical diseases since the London declaration on NTDs of January 2012鈥. Lord Rea, while 鈥渨elcom[ing] the international initiatives that have been praised by everybody鈥, also flagged up 鈥渁 danger that these vertical programmes can undermine already fragile and overstretched healthcare systems鈥. He cited comments by Parker and Allen in The Lancet that 鈥渢he availability of tablets is not enough鈥ealing with NTDs in a sustainable way will involve a range of factors including behavioural change. Imagining that mass drug administration 鈥榳ill make poverty history鈥 is unrealistic鈥.

鈥淎s someone who has worked at the grass roots,鈥 added Lord Rea, looking back 鈥渉alf a lifetime鈥 to when he spent two and a half years as a paediatrician in Lagos, Nigeria, Parker and Allen鈥檚 observations 鈥渉ave the ring of truth鈥 and 鈥渘eed to be taken into account鈥- although he also believed that the potential pitfalls could be avoided 鈥渨ith care, co- ordination and collaboration鈥.

After their work was mentioned in the Lords debate, on 12 February Parker and Allen were invited to give a presentation before the All-Party Parliamentary Group on Malaria and Neglected Tropical Diseases as part of a discussion on health in Tanzania. Six days later, they received a remarkable letter from the Ministry of Health in Uganda, copied to the heads of their universities, complaining that papers of theirs 鈥渕ade several inflammatory statements about the government and the Ugandan people鈥id not take into account the views of Government appointed staff鈥and] seem[ed] to attack the NTD control programmes without appreciating the alleviation of the horrible morbidity that has been so alleviated among the victims of NTDs鈥.

鈥淚 am compelled to ask you to consider,鈥 the director general of Uganda鈥檚 health services, Ruth Jane Aceng, continued, 鈥渉ow you would react if Ugandans came to the United Kingdom, ignored local advice and failed to acknowledge the expressed wishes of national staff and made statements which could be interpreted as defamatory.鈥 She also asked them to resupply all the paperwork proving they had 鈥渇ull ethical clearance鈥.

鈥淚 look forward to receiving this information, otherwise the Government of Uganda reserves the right to undertake the necessary measures to restrict you from any further research activities you may consider undertaking in Uganda,鈥 the letter concluded.

In their response to this unexpected communication, Parker and Allen examined these points one by one. Their work had been 鈥渃arried out in close collaboration with [those responsible for the control of the worms, insects or snails that transmit diseases], and with relevant district authorities. In all districts we shared our findings with the local vector control officers鈥ith respect to the particular paper you mention, we should point out that it was circulated and discussed in advance of publication.鈥

African child holding box

After dealing with the questions of ethical clearance, Parker and Allen go on to note that their paper on Uganda in the journal Health Research Policy and Systems 鈥渉as been widely read by people working on NTDs, and while the findings make uncomfortable reading for all of us concerned about these infections and committed to treating them, no one has previously suggested our analysis is demeaning to Ugandans鈥e do not take the position you suggest we do on the NTD programme in Uganda. On the contrary, we make our own support for the objectives of MDA clear.鈥

This was not the first strong criticism Parker and Allen had encountered.

In 2011, two leading proponents of MDA - David Molyneux, senior professorial fellow at the Liverpool School of Tropical Medicine, and Mwele Malecela, director of research coordination and promotion at the National Institute for Medical Research in Tanzania - published an article in Parasites and Vectors called 鈥淣eglected tropical diseases and the Millennium Development Goals - why the 鈥榦ther diseases鈥 matter: reality versus rhetoric鈥. Despite the wide-ranging title, this is very largely a critique of the Parker and Allen paper published in Third World Quarterly.

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Molyneux and Malecela set out the achievements of MDA, accuse Parker and Allen of 鈥渇actual errors which call into question the credibility of the authors鈥 and suggest that they are both 鈥渄isrespectful to endemic countries鈥 and 鈥渦nethical and grossly negligent鈥.

Parker and Allen acknowledge the achievements of MDA while disputing the 鈥渇actual errors鈥 claimed by Molyneux and Malecela, many of which turn on the minutiae of Tanzanian geography. But what they really object to, they say, is what they see as the emotive nature of the criticism, highly unusual in a medical journal, and the aspersions cast on their professional integrity.

When they demanded a right of reply, Chris Arme, the editor of Parasites and Vectors, agreed, provided that Molyneux and Malecela were allowed the last word. Since the latter pair鈥檚 draft response failed to address their concerns, Parker and Allen again complained to the editor - and were told that their right of reply had been withdrawn.

Had they been allowed to publish their reply, they would have cited a 2010 editorial in The Lancet arguing that 鈥淓valuation must now become the top priority in global health鈥. In the meantime, they say, their 鈥渇indings on current mass drug administration strategies, as well as those of others researching on local effects, invite a sceptical attitude to very grand claims being made about disease control, let alone disease elimination or eradication鈥.

鈥淎 commitment to combating neglected tropical disease is a hugely positive development,鈥 the pair add, 鈥渂ut that is all the more reason to avoid treating fund-raising rhetoric as fact.鈥

Asked for their comments, the director of the LSE, Craig Calhoun, and the vice-chancellor of Brunel, Julia Buckingham, issued a joint statement expressing support for the two researchers. 鈥淎cademic freedom is of paramount importance for academics, and the LSE and Brunel University firmly defend and promote the right of academics to express their views freely in the pursuit, advancement and dissemination of knowledge in a spirit of mutual respect.

鈥淧rofessor Allen and Dr Parker鈥檚 research is peer-reviewed, rigorous and robust. Their detailed research on the effectiveness of programmes to control neglected tropical diseases in parts of Africa is designed to support such programmes by providing accurate data and informed analysis.

鈥淔or some in the field this has proved uncomfortable reading and has provoked attacks that go beyond normal scholarly debate. Both the LSE and Brunel are determined to ensure that Professor Allen and Dr Parker can advance their research, which will continue to inform debate on this vital area.鈥

Billions of lives to save: The high-stakes campaign against tropical disease

The United Nations鈥 sixth Millennium Development Goal is 鈥渢o combat HIV/Aids, malaria and other diseases鈥.

The phrase 鈥渙ther diseases鈥 came to be interpreted as referring to a range of mainly parasitic afflictions endemic in many of the poorer parts of the world. One researcher estimated that 1.1 billion of the 2.7 billion people who live on less than $2 (拢1.30) a day are infected with one or more of the diseases.

In 2005, an important paper by David Molyneux, Peter J. Hotez and Alan Fenwick argued that it was possible to control seven major neglected tropical diseases (NTDs) in Africa using just four drugs and at a cost of $0.40 per person per year (compared with $200 for treating someone with either HIV/Aids or tuberculosis).

In the same year, the UN Millennium Project targeted NTDs with a set of 鈥渜uick win鈥 interventions designed to deliver clear and substantial benefits for comparatively small sums of money.

Mass drug administration initiatives now operate on a vast scale. The US Agency for International Development, which donated $89 million in the current fiscal year, stated that its NTD programme was 鈥渢he largest public-private partnership collaboration in our 50-year history鈥 and that it has 鈥渓everaged over $3 billion in donated medicines鈥 from pharmaceutical companies.

The 2012 London Declaration on Neglected Tropical Diseases claimed that 鈥渢here is a tremendous opportunity to control or eliminate at least 10 of these devastating diseases by the end of the decade鈥. The Bill and Melinda Gates Foundation used the occasion to announce a five-year commitment worth $363 million to support product and operational research.

Meanwhile, the UK鈥檚 Department for International Development pledged 拢195 million over four years - a period during which 鈥淯K NTD support is expected to help reach more than 140 million people鈥.

Lymphatic filariasis, river blindness, schistosomiasis and Guinea worm disease were among the conditions they hoped to 鈥渃ontrol or eliminate鈥.

鈥楿nbalanced, irresponsible, negative, appalling鈥: Parker and Allen鈥檚 critics sound off

In a paper published in 2011 in Parasites and Vectors, David Molyneux and Mwele Malecela point to 鈥渙verwhelming evidence of [MDA鈥檚] massive achievements, which have produced documented health and economic benefits, strong country commitment, pharmaceutical donations of billions of treatments and proven successes鈥, notably that 鈥渁t least one tenth of the planet is receiving drugs for NTDs鈥. They list successes in controlling a range of diseases from sleeping sickness to river blindness, leprosy to Guinea worm.

Melissa Parker and Tim Allen, Molyneux and Malecela argue, had offered 鈥渋nappropriate criticisms of these programmes鈥 in a 鈥渉ighly subjective paper鈥 that, they claimed, failed to recognise 鈥渢he historic and sustained success of NTD control鈥.

Furthermore, 鈥渢he fact that [they] question the motives of the international communities and partnerships, authors and advocates as well as the endemic countries, which hitherto have not prioritized these diseases is not only damaging but irresponsible; worst it is damaging to poor people who benefit.鈥

A similar point is made by Alan Fenwick, professor of tropical parasitology at Imperial College London, who has worked with Molyneux and who originally funded some of Parker and Allen鈥檚 research.

When he was informed that 糖心Vlog planned to publish an article about their work, he sent an unsolicited email expressing regret that the magazine was 鈥済oing to give another platform to these researchers to criticise the work of many people who are trying to bring relief to millions of people with NTD infections鈥. Fenwick argued that their work gave 鈥渁n unbalanced negative view of MDA鈥 and 鈥渃ould lead to donors withdrawing much-needed funding for a massive programme鈥.

When approached for comment by THE, Molyneux said: 鈥淥ur response in our Parasites and Vectors article was specifically in response to a paper in Third World Quarterly which we consider was offensive to the professional integrity of a group of us who have promoted the NTD agenda鈥ndeed in 40 years in academic life I had not been so appalled by [any paper as I was] by the tone of that paper.鈥

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Reader's comments (1)

Parker and Allen have violated a religious taboo. Don't they know that everything wrong with the Third World is all the fault of imperialism?

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