Unwanted side-effects

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, “so he only spoke to one person, who was just the guard, and said: ‘Give these to the teachers, tell them to hand them out tomorrow to all the children’ - and off he went.

“Ivermectin had never come to that village before. The next day it was handed out by schoolteachers who didn’t 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.”

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 “neglected tropical diseases” (NTDs) that had traditionally received far less attention than the “big three”, malaria, tuberculosis and HIV/Aids, until the United Nations Millennium Project proposed a number of “quick win” 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’s Department for International Development pledged £195 million in 2012.

Parker and Allen carried out two weeks of fieldwork in 2007, and then five weeks’ 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 “Will mass drug administration eliminate lymphatic filariasis? Evidence from northern coastal Tanzania”.

Enthusiasts for MDA, they noted, had claimed that “elimination [of the disease] will be a possibility by 2020”. Yet experts have argued that in areas with particularly high rates of infection, coverage levels of up to 90 per cent and “multiple rounds of treatment” are necessary. Parker and Allen’s 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: “In this village we cry for water…they haven’t brought water for free, but they’ve brought drugs for free. Why? These free drugs have to be for an experiment…”

One of Parker’s 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’s house - and eventually had to be rescued by armed police.

It was clear, Hastings writes in her thesis, that “a lot of people thought I had personally brought medicine into the village to harm their children”. Official reports blaming “anti-government hooligans and agitators” 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 “village- based drug distributors”, 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 “insufficient” levels of drug uptake in the places they were studying meant that “MDA is having declining effects on disease control”. It was therefore essential to develop “more adequate monitoring” and to “fine-tune mass treatment programmes according to ecological, biological and social factors operating at a local level”.

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, “The ‘other diseases’ of the Millennium Development Goals: rhetoric and reality of free drug distribution to cure the poor’s parasites”, published in Third World Quarterly in 2011.

In Tanzania, they write, they found “a persistent practice of increasing treatment numbers as reporting was passed up through the system”. In Uganda, despite “lip service…paid to the importance of health education”, the reality was that “communication with target populations is not prioritized, is mostly superficial, and can be experienced as patronising”.

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

There are signs that Parker and Allen’s 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 “what progress has been made in combating neglected tropical diseases since the London declaration on NTDs of January 2012”. Lord Rea, while “welcom[ing] the international initiatives that have been praised by everybody”, also flagged up “a danger that these vertical programmes can undermine already fragile and overstretched healthcare systems”. He cited comments by Parker and Allen in The Lancet that “the availability of tablets is not enough…dealing with NTDs in a sustainable way will involve a range of factors including behavioural change. Imagining that mass drug administration ‘will make poverty history’ is unrealistic”.

“As someone who has worked at the grass roots,” added Lord Rea, looking back “half a lifetime” to when he spent two and a half years as a paediatrician in Lagos, Nigeria, Parker and Allen’s observations “have the ring of truth” and “need to be taken into account”- although he also believed that the potential pitfalls could be avoided “with care, co- ordination and collaboration”.

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 “made several inflammatory statements about the government and the Ugandan people…did not take into account the views of Government appointed staff…[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”.

“I am compelled to ask you to consider,” the director general of Uganda’s health services, Ruth Jane Aceng, continued, “how 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.” She also asked them to resupply all the paperwork proving they had “full ethical clearance”.

“I 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,” the letter concluded.

In their response to this unexpected communication, Parker and Allen examined these points one by one. Their work had been “carried 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…With respect to the particular paper you mention, we should point out that it was circulated and discussed in advance of publication.”

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 “has 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…We 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.”

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 “Neglected tropical diseases and the Millennium Development Goals - why the ‘other diseases’ matter: reality versus rhetoric”. Despite the wide-ranging title, this is very largely a critique of the Parker and Allen paper published in Third World Quarterly.

Molyneux and Malecela set out the achievements of MDA, accuse Parker and Allen of “factual errors which call into question the credibility of the authors” and suggest that they are both “disrespectful to endemic countries” and “unethical and grossly negligent”.

Parker and Allen acknowledge the achievements of MDA while disputing the “factual errors” 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’s 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 “Evaluation must now become the top priority in global health”. In the meantime, they say, their “findings 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”.

“A commitment to combating neglected tropical disease is a hugely positive development,” the pair add, “but that is all the more reason to avoid treating fund-raising rhetoric as fact.”

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. “Academic 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.

“Professor Allen and Dr Parker’s 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.

“For 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.”