Some reflections on #wormwars from a communications perspective

By Kate Hawkins, Pamoja Communications

As a communication person who spends my day grappling with how to get people in power to take some notice of the evidence that my projects are generating it is strange to be connected to a piece of research that ‘goes viral’. When I opened up Twitter to see that my feed had been taken over by the hash tag #wormwars I had that horrible stomach lurching reaction. The volume of tweets and opinion pieces on the recent systematic review and reanalysis of a pivotal piece of research on de-worming in Kenya has been difficult to keep up with.

On the one hand this is a great opportunity for people in the Neglected Tropical Disease world. Worms are, well neglected, and so it is heartening to see them the subject of debate and media attention. On the other hand there is inevitably some misinformation flying around, for example that deworming is ineffective when of course deworming stops people having worms which is undoubtedly a good thing.

An ongoing and inclusive discussion

Let’s be clear, there is no ‘last word’ when it comes to the evidence base on worms. This is an evolving discussion which involves stakeholders around the world, not least those people whose kids are grievously effected. To prevent this iteration of the #wormwars being a flash in the pan is going to require some concerted efforts to foster a sensible, sustainable, and ongoing debate. Crucially this needs to include people from countries where large scale deworming programmes are ongoing (planning them, implementing them and benefiting from them).

This has been notably absent from the discussion so far with one exception.

Enough with all the machismo already

The strength of evidence is an important thing to debate. There’s no doubt about that. It is also true that when it comes to uptake decision makers and citizens need a whole range of evidence to draw on. That’s because we are working in diverse settings and there are very particular real world challenges that need to be dealt with – and sometimes these are very localised.

This means that we really have no alternative but to work in multi-disciplinary teams and bring a plurality of voices and opinions into the way that we frame research questions, the methods that we use, and the way that we communicate the evidence (including its applicability to the challenges that people are grappling with).

This approach is really at odds with a style of evidence generation that assumes that there is one answer to a complex social, ecological, political, and ethical issue such as Neglected Tropical Disease. I find a very adversarial approach to discussing the evidence base very off putting. Some people love a row, I am not one of them.

I am particularly concerned about the metaphor of war being used in research communication. I have friends and family in Syria dealing with food shortages, shelling, snipers, ransom demands for kidnapped relatives, prolonged family separation, post-traumatic stress, and the terror of sending their sons off on the long journey across continents through barbed wire and multiple law enforcement agencies to a precarious safety in countries of relative stability (and extreme racism and Islamophobia). That is a war folks. Let’s be clear that what we are dealing with is a disagreement between academics and try and get a sense of proportion.

So over the next couple of YEARS we promise that we will keep feeding you news and new evidence on worms. We hope that some of those people who got caught up in the excitement of a hash tag war will continue to engage. Watch this space.

Photo credit: Omar Chatriwala Continue reading

The official launch of the COUNTDOWN programme in Ghana

By Adriana Opong

On Thursday, 15th October 2015, the Neglected Tropical Disease (NTD) Programme under the Public Health Division of the Ghana Health Service officially launched the COUNTDOWN Programme in Ghana. In attendance were key stakeholders and the NTD national Ambassador Dr. Joyce Aryee as the chair for the launch. The Director-General of the Ghana Health Service and a representative of the Minister of Health were also present.

In Sub-Saharan Africa, Ghana’s commitment to the elimination and management of NTDs is in an advance stage. The NTD Programme treats over 12 million people for onchocerciasis and lymphatic filariasis and over 4 million school – aged children for schistomiasis and soil helminthiasis annually. But there still remain cases and issues of hotspots areas of infection for both lymphatic filariasis and onchocerciasis, access to medication for some of the diseases is still limited and a more integrated approach to a single programme is required.

In the her acceptance speech, Dr. Joyce Aryee, the chair explained that NTDs are a class of diseases that can be eliminated, and that the launch of COUNTDOWN represents the last lap towards riding Ghana off the NTD burden of morbidity and mortality.

Within the COUNTDOWN Programme, the project activities in Ghana’s will include:

  • Filling the gap with Implementation Research
  • Integration at the different levels of health systems, NTDs programmes within and beyond the health sectors
  • Assessing and informing the equity, efficiency and sustainability of current NTD approaches
  • Looking for strategies on dealing with the issue of hotspots
  • Linking research to policy through dialogue and consultation

The implementing partners in the COUNTDOWN Project Ghana, are the NTD Programme of the Ghana Health Service, The Dodowa Health Research Centre (DHRC), and the Ghana Health Service and the Water Research Institute of the Council for Scientific and Industrial Research (CSIR). The Ghana management team is under the leadership of Dr Nana- Kwadwo Biritwum, the Programme Manager, Dr. Margaret Gyapong the Director of the Dodowa Health Research Centre and Dr. Mike Osei- Atweneboana.

Dr. Ebenezer Appiah-Denkyira in his welcome address said,  “We need not wait for Neglected Tropical Diseases to create epidemics before we take action on Neglected Tropical Diseases  this will no longer be neglected”. A representative of the Minister of Health delivered the keynote address for the launch. The overview of the COUNTDOWN programme and a message from the Director, COUNTDOWN was presented by Julie Irving.

COUNTDOWN at COR-NTDs and the American Society of Tropical Medicine and Hygiene Conference

By Russell Stothard

There will be a strong COUNTDOWN presence at this year’s annual Coalition for Operational Research on Neglected Tropical Diseases (NTDs) (COR-NTD) meeting and the American Society of Tropical Medicine and Hygiene conference. COUNTDOWN researchers have helped to develop elements of the research agenda within each meeting, and several members of our team are attending.

At the COR-NTD meeting (22-23 October 2015), there will be two specific events organised by COUNTDOWN:

  • How can we make Universal Health Coverage truly universal? Equity, gender, disability, and NTDs
  • Looking beyond School-Aged Children for schistosomiasis and STH control and elimination

We intend to provide live feedback during these events through our twitter account using the hashtags: #COR_NTD2015, #NTDequity and #SCH_STH.

During the American Society of Tropical Medicine and Hygiene Conference (25-29 October 2015), there will be several posters and talks given by COUNTDOWN researchers. A highlight of this will be the session co-chaired by Nana Kwadwo-Biritwum, Preventive Chemotherapy for NTDs is Necessary but Not Sufficient: Complementary Interventions that are Key for NTD Control and Elimination. This session will discuss how complementary interventions, that synergise with preventive chemotherapy campaigns, are needed to accelerate towards WHO 2020 targets.

On Monday 26 October 13:45-15:30 there will be a special symposium chaired by WHO and USAID which considers, Global NTD elimination: The sprint towards the 2020 goals – five years out. We are certain that COUNTDOWN will make a significant contribution to these discussions drawing attention to better inter-sectoral dialogue and health-system strengthening.

“Replacing the lid on this can of worms” is not an option we should want or hope to achieve

By Mark Taylor, Liverpool School of Tropical Medicine

Having spent some time trying to absorb the vast quantity (and diverse quality) of material generated on #wormwars has led to me to see the debate as a wonderful opportunity for COUNTDOWN. Although I have read much, but by no means all of the material I have focused on two key sources, which I found to be most helpful in forming a view within a short timeframe, The Cochrane Review and the article Worms, Wisdom and Wealth from 2013 by Don Bundy and colleagues in Trends in Parasitology (from the last #wormwar battle in 2012). I encourage you all to read both articles, which for the most part are quite readable and provide a measured and informed summary of the key arguments from both sides of the debate.

In a nutshell

We have the key gold standard for evidence (as considered by many, but not all health professionals – a Cochrane Review) concluding that mass de-worming of ‘soil transmitted helminths’ (STH) from school children has little or no measurable health benefit. The response from the entire STH Neglected Tropical Disease (NTD) stakeholder community aggressively defended the policy, denouncing the review and rapidly releasing endorsing statements of “No change in policy”.

The consensus (which is thin on the ground to say the least) now appears to be that more evidence is needed and is unlikely to come only from more randomised controlled trials (RCT) and should include social science and economic evidence. RCTs and other research should be on contemporary populations and be sufficiently powered and designed to detect the relevant outcomes.

Some historical context

My initial reaction to #wormwars was shaped by a long history of skirmishes and battles from 2000 onwards on this debate (one comment from key stakeholder in the current debate – ‘here we go again’). Previously there was lively debate and argument in the literature. The outcome was no change in policy by the World Health Organization. So, I assumed that this time around it would be more of the same. A flurry of arguments over the details of statistical analysis together with polarised views of the ‘quality’ and sources of evidence used to support policy, i.e. the ‘gold standard’ evidence (Cochrane Review of RCTs) said no benefit, whilst other evidence including social and economic evidence, historical success of similar programmes in US and other evidence was therefore used to support and expand WHO policy. Result: no change in policy, even an expansion.

I have no particular strong criticism of the Cochrane review per se. But, it is difficult to avoid the conclusion that no matter how compelling or robust the evidence might be, including new re-analysis and de-bunking of an influential trial, this change in evidence will never be adopted by policy makers as they use different evidence to promote and guide their policies. No sign of a retreat from either pole of the argument – perhaps even more polarised than before.

What kind of evidence do we need to make policy decisions?

One problem with the Cochrane Review is that it includes some RCTs conducted 15 years ago with drug regimes and strategies that have already been advanced and changed. So this does not reflect the evidence of current strategies, which can use different regimes and are targeting different populations (for example, communities treated for lymphatic filariasis will have added benefits on the impact on their STH as combinations of worm drugs are used). So the data is not contemporary from the perspective of strategies or target populations. This is a generic problem caused by the length of time it takes to conduct and analyse trials and create the critical mass of trials sufficient to perform meta-analysis.

Another problem with much of the #wormwars broader debate is in the detail. Both sides and journalistic précis have moved the debate out of the context of what the review actually concluded, which has only served to confuse the issue. The broad use of the term “worms” and “de-worming” has led some to extend the reviews outcomes to all worm Neglected Tropical Diseases other than just the STH that were the subject of the review. These include three distinct types of worm. Roundworms, hookworms and whipworms.

The outcomes of the review therefore do not apply to the other NTD worms, schistosomiasis, lymphatic filariasis and onchocerciasis, for which there is robust evidence of health and economic benefit using mass de-worming.

So why no benefit of mass de-worming for STH? This might relate to the more benign and chronic morbidity that these worms cause. The three types of STH worm all have different pathologies (mostly benign in the majority of cases) and population frequencies and uneven geographical distribution, which may confound some of the RCT outputs. Although the worms are mostly only few in number in most cases, some “wormy” people get high worm burdens, which can cause clinically relevant symptoms. ‘Hookworms’ (the vampires of the wormy world) attach to the gut wall as adults (after migrating though the skin, heart and lungs as larvae) with their hooks and feed on our blood and cause anaemia. ‘Roundworms’ (Ascaris) can block the intestine and cause tissue damage as they migrate from the gut to the liver and lungs to be coughed up back into the gut. Whipworms (Trichuris) burrow into the bowel wall and can cause bloody diarrhoea and rectal prolapse. These symptoms might be rare, but how can removing these risks from children in extreme poverty be bad or of no benefit?

The key is probably related to mass treatment and community level analysis (i.e. the majority of the target population have few or no worms, which will mask the rare and subtle benefit to health, which may develop over long periods of infection and re-infection and so not captured by existing historic RCT design endpoints) combined with rapid re-infection rates (limited worm free periods in treated populations). We also know that the drugs are not given at doses or frequencies, which are the best for removing worms, but at doses that are considered to be safe and easy to give to communities. Most of the trials only used one drug, which is known to be only effective against one of the STH trinity (Ascaris).  So lack of existing RCT evidence maybe due to poor trial design, sub-optimal drug efficacy, frequency or coverage and endpoint analysis coupled with minor or subtle improvements in health, which are challenging to measure. Hence we need different approaches to measure and gather evidence.

Even if the evidence for mass de-worming of communities is based on flawed conclusions from the original RCT data in relation to some of the educational/health benefits (as assessed by RCTs), it is counter-intuitive to many that such a relatively cheap and easily delivered intervention is not of any benefit to these communities.

A natural human reaction to having worms is – get rid of them! Even the Cochrane review states: “It is good medical practice that children known to be infected with worms should receive treatment. This is obvious and not the subject of this Cochrane Review.” Hence the presence of strong beliefs and even faith – that it must have some benefit.

What next?

We need to continue to support Cochrane reviews as one of the primary ways of assessing the evidence from RCTs, but to acknowledge that other forms of evidence (albeit with their own advantages/disadvantages) are used by NTD policy makers from a variety of sources to inform policy decisions. The evidence from social science and health economics studies on STH programmes is underway within COUNTDOWN in four endemic countries and will meet the clarion call for more and better data on contemporary populations to provide robust evidence to support scale-up of existing strategies or promote alternative strategies.

This evidence will, for the first time, focus heavily on sector wide endemic country views from individuals, communities, national programme managers, Ministry of Health staff and international policy makers. Understanding how best to translate new evidence into policy in the context of this complex process is something that COUNTDOWN is addressing through multi-trans-disciplinary approaches and sector wide engagement to produce research uptake to deliver informed choices for policy makers.

We welcome informed debate on whether the Cochrane review has been appropriately conducted under the published criteria for such reviews, but we do not support suppression of meta-analysis in this area. Instead we have designed different approaches through social science and health economics to address the deficiency in existing evidence to either promote scale-up of current strategies or adoption of alternative strategies.

Photo credit: Sabin Institute (to reflect what de-worming programmes look like rather than an endorsement of the content of this site)

COUNTDOWN launched in Cameroon on the 9th October 2015

By Russell Stothard

This week past has been an exciting and especially busy time for COUNTDOWN with the launch of the programme in Cameroon.  The event took place during the afternoon of Friday 9th October within the Ministry of Public Health as overseen by His Excellency André Mama Fouda, the Minister.  Attending this high-level meeting were several stakeholders representing key organisations involved in control and elimination of Neglected Tropical Diseases (NTDs). Within the Ministry, I was delighted to be joined by LSTM colleagues, Professor Mark Taylor and Dr Joe Turner, who had been visiting the University of Buea, as well as, by Kate Hawkins of Pamoja Communication and Nathan Kaemena who was documenting the event.

At the launch presentations were made by Professors Louis-Albert Tchuem-Tchuenté and Samuel Wanji who broadly reviewed the history and progress of national control campaigns against the five key NTDs which COUNTDOWN will study. I was also given the chance to present on behalf of the broader cross-collaborations within our consortium which unite both Francophone and Anglophone perspectives. I was particularly honoured that His Excellency spoke in English whilst acknowledging that where possible discussions would take place in French for those able to do so.

After the meeting was opened to the floor, open discussions raised several important issues concerning the harmonisation of NTD control across different sectors within the health system. Furthermore, there were specific television and radio interviews which sought to identify the importance of COUNTDOWN research in Cameroon and how it would benefit those currently living with and affected by NTDs. It became clear that navigating the transition from control to elimination needs careful explanation, especially as our five studied NTDs are in different stages of scale-up of control.

Over the following days these press interviews were expanded into other broadcasts on national radio and TV with specific discussion on ‘morning safari’. This included fielding questions from the listeners and discussing at length some of the specifics of diseases in Cameroon. It was clear that many suffer from filariasis and were asking how to best manage their swollen limbs and associated conditions. In addition, it was noted that greater attention should be given to control of urogenital schistosomiasis by developing better connections and dialogue with those in the reproductive health sector. Looking to the future, empowering women to better understand female genital schistosomiasis is clearly needed.

During the following week Kate oversaw the COUNTDOWN research uptake meeting and I was delighted to see Nathan take so many beautiful portrait shots of those attending.  These images will soon find their way into a meeting report and website so we can be proud of those who are working within the COUNTDOWN team, understanding a little bit better the strengths of our team.

water pump

On the final day of our stay in Cameroon, Louis arranged for the press to visit a field site near the trading town of Makenene which was approximately a 3 hour drive West of Yaounde. In this region, three species of schistosome can occur, however, through the installation of a water pump just over 10 years ago, there have been significant reductions in the transmission of urogenital schistosomiasis. In discussion with the local chief, it was clear that this brought many health benefits to the local community with those now largely free of the signs and symptoms of disease. I was particularly happy to see this change for the good as elsewhere such schemes fail in the long-term. For example, borehole pumps often fall into disrepair or are used unequally by community members who decide that not to use them in favour of other unsafe water sources.

After searching for snails in the small streams and pools around Makenene to highlight to the press the importance of safe water supplies, I was a little sad to leave this town for it provided me with a little slice of the reality behind which the COUNTDOWN consortium is operating. For me, it is incredibly important to experience a reality of those environments where interventions against NTDs are waged and engage directly with those communities we aim to serve in our research.

COUNTDOWN at WHO: The treatment gap in young children with schistosomiasis

By Russell Stothard

I was pleased to attend an informal WHO meeting (from the 29-30th September) where we reviewed and discussed the treatment needs of pre-school-aged children with schistosomiasis. Having chaired a similar meeting five years ago, it is now very clear that young children can catch schistosomiasis, even within the first few months of life, and can then go on to develop chronic disease even before reaching school-age. This highlights an important gap in current control strategies as children typically have their first access to praziquantel (PZQ), our only available drug treatment, once enrolled into primary school. School-based treatment campaigns operate under the auspices of national control programmes where school teachers administer PZQ treatment en masse each year. Access to PZQ aims to arrest later disease development but sadly for some children, there is already significant, perhaps irreversible damage, upon entry into school so their first treatment is already too late.

This raises two important questions with this donated medicine; why is PZQ not currently available to young children today and what can be done in future to redress this medical inequity or treatment gap? During the two-day meeting several studies were presented, including those undertaken by myself and colleagues in Uganda where intestinal schistosomiasis was shown to cause significant childhood anaemia and liver fibrosis. Later discussions framed and explored answers to these questions. The ‘why’ was relatively easy to explain; health surveillance systems have been woefully weak and failed to notice and report the occurrence of infection and disease in young children. Only after conducting targeted parasitological and epidemiological surveys, for which there are now several publications within the peer-review literature, has sufficient evidence now accrued to confidently ring that alarm bell.

This has firmly focused attention on this vulnerable paediatric group and the need to revise health policies but revealed disconnects and lack of effective dialogue between various influential stakeholders. For example, pregnant women can have schistosomiasis, and should be treated, yet even within high endemic areas PZQ is not embedded within routine antenatal care. Once the child is born, PZQ is not on the essential drug list within frontline primary child care whilst other drugs, such as mebendazole (used for treatment of soil-transmitted helminthiasis), are. This deficit is further compounded by major health players, e.g. UNICEF, continuing to overlook this disease or are simply unable to revise their stance.

About the ‘what’; well, I am glad to report that pharmaceutical sector has responded with the creation of the paediatric praziquantel initiative. Presently PZQ comes in large, unpalatable tablets for younger children. Hence a first step has been to develop an orally dispersible tablet (ODT) formulation with taste masking which will make administration easier. However, this formulation needs some clarification of its original drug licensing as children under four years old were not included in its formal clinical indication. Hence some new clinical trial data are required for this ODT, as well as, information concerning the stability of the ODT in tropical conditions e.g. sufficient resilience to high temperatures and humidity. The good news is that the project is set to deliver on its goals and is currently held on target to produce an ODT by late 2019 with an associated access plan.

But what about the children already infected – is it ethical to wait a further 4-5 years before expanded access to a paediatric formulation can begin? I don’t think so.  Therefore I was happy to see that an outcome from this meeting was to encourage the use of crushed and broken PZQ tablets. To do so is certainly within the remit of national control programmes but some further convincing may be needed for action in other health sectors, i.e. within maternal and child health clinics. To that end I firmly expect that our future studies on schistosomiasis in COUNTDOWN will pave a better way for access to PZQ in both young children and their mothers.

To ensure that a wider selection of international donors and agencies are fully aware of these issues and our intentions, we are hosting a break-out session within the COR-NTD this October where our future research uptake strategy will be honed.

Calling time on Neglected Tropical Disease: COUNTDOWN launches in Cameroon

By Kate Hawkins
We are delighted to announce that the COUNTDOWN programme in Cameroon was launched on the 9 October by the Ministry of Public Health. The launch was overseen by His Excellency the Minister, André Mama Fouda.

Neglected Tropical Diseases in Cameroon

Over the years remarkable progress has been made in scaling-up NTD control interventions in Cameroon. The number of people treated has increased up to 10.6 million for lymphatic filariasis and onchocerciasis, 2.8 million for schistosomiasis, and 8.3 million for soil-transmitted helminthiasis in 2014. However, we are still short from our targets, and there remain several challenges especially with the shift of our ambition from control to elimination of most of these illnesses. This requires a readjustment of our main strategies with more intensified and combined interventions needed.

Within the framework of the COUNTDOWN Project, activities in Cameroon will include:
• Extending praziquantel treatment for schistosomiasis to all populations in need, especially pre-school aged children and pregnant women, and establish biannual treatment in school aged children
• Extending treatment in onchocerciasis hypo-endemic areas and explore alternative treatment strategies where lymphatic filariasis and onchocerciasis are co-endemic with Loa loa
• Sharing learning on state-of-the-art diagnostics, epidemiology, and social sciences with other COUNTDOWN countries to build a strong consortium in West and Central Africa.

His Excellency the Minister of Public Health, André Mama Fouda, says:
“Control of NTDs is a long endeavour where we need the full engagement of many health stakeholders. I am reassured that we have strong commitment which can be further expanded in Cameroon. I am certain that this work will make significant steps towards local elimination of certain NTDs.”

The implementing partners for COUNTDOWN in Cameroon are the Neglected Tropical Disease Programme in the Ministry of Health and the University of Buea under the leadership of Professor Louis-Albert Tchuem Tchuenté and Professor Samuel Wandji.
COUNTDOWN Country Manager, Professor Louis-Albert Tchuem Tchuenté, Cameroon, highlights:

“This is an exciting time for action on NTDs, especially with the recent China-Africa Health Development Framework including cooperation for schistosomiasis elimination. We are pleased to be part of a much larger movement which is pressing for a new approach to the very old problem of NTDs.”