Let’s Move the Agenda from Control to Elimination of NTDs

By Prof Louis Albert Tchuem Tchuenté, Pamela Bongkiyung & Prof Russell Stothard

Who has the perfect answer to controlling or eliminating a disease? It gets more difficult when simply using medication does not guarantee no re-infection. In the case of Schistosomiasis and Soil-transmitted Helminthiasis, in the agenda of elimination one wonders if what we need are more parasitologists in the affected areas or getting the current ones to be more publicly engaged in educating the population?

Prof. Louis-Albert Tchuem Tchuenté who has been working on schisto control for over three decades emphasises the control of Schisto as many other NTDs is a long-term combat. That means a lot of investment and capacity building at all levels. It also needs to have the involvement of many actors and stakeholders. It is difficult for a single organisation or a single group to interrupt the transmission of this disease. That is why intersectoral cooperation, partnership and involvement of stakeholders at all levels is very important. Policy makers, scientists, community health workers, health personnel staff, teachers and all category of the population need to be involved in this fight.

Training of parasitologists is very important because in the African setting more needs to be done. It is vital to optimise and adapt the strategy according to the different transmission setting. The same strategy cannot be deployed as it will not have the same impact. That is why for example in Cameroon, when you compare the current distribution of Schistosomiasis to what was done 25 – 30 years ago; there is a significant decrease in some areas. We have examples where transmission has been interrupted, we have many examples where prevalence has been lowered to more than 80 – 90 percent in some of the localities.

But we still have some challenges where the dynamics vary.  The disease prevalence is reducing but variances remain due to the existence of conditions that allow for the transmission cycle to continue. That is why moving from control to elimination requires integration is intensified. Part of this requires increasing capacity building by training more students, investment, health education, change in behaviour and increase awareness of the population. It is a huge challenge.

The Sustainable Development Goals (SDG) has as one of its key point a call for countries to invest more for the control and elimination of Neglected Tropical Diseases (NTDs). Therefore, for the transmission of schistosomiasis to be interrupted there is a need for countries to invest more for the elimination of this disease. When more is invested, this means that we also should invest in equipment, in sanitation, in access to water and change of the environment or that you improve the hygiene.

Prof. Tchuem Tchuenté said: “Granted, the control of schistosomiasis is very challenging, it is a long-term commitment which is feasible. At this stage, there are tools and strategies in place to interrupt the transmission of schistosomiasis; what we need now mainly in Africa is that we must change our approach to become more ambitious. We must move completely from control to elimination. This shift in paradigm should be clearly effective and endorsed by all African countries.”

He believes that when we keep the word ‘control’, we can be satisfied with morbidity control and therefore control morbidity forever. If the agenda shifts to elimination, then the momentum and the target aligns with that shift. Lymphatic Filariasis (LF) programmes have used this approach. The LF programme’s target for years has been elimination and this makes us put a lot of effort into its elimination.

There is a tendency to become complacent when you reduce a disease to the level where it no longer constitutes a health problem. This is when we need to be most careful as you could miss when the disease makes a come-back again. But if you have a target for elimination, this means additional or further efforts to interrupt the transmission and then to move to the surveillance phase. Japan is one of the good examples. In the 1960s, there were some areas in Japan where the prevalence of schistosomiasis was higher than in most parts of Africa. But they decided and launched a ‘zero parasite’ campaign. From the beginning, it was not about control but zero parasites; meaning elimination. In less than 20 years Japan has eliminated schistosomiasis. China started with control but then rapidly moved to the elimination phase. Now their objective is to eliminate everywhere in China.

The COUNTDOWN project is in a key position to contribute to this agenda. Our research aims to increase acceptability, affordability, accessibility and availability of Neglected Tropical Diseases solutions. Our multidisciplinary approach is investigating efficient methods to cost-effectively upscale mass drug administration programmes, thereby moving the agenda closer to elimination.

With this word elimination, you must put the necessary efforts and investment to interrupt transmission. In Africa, the time is right to think about this and to shift completely from control to elimination. It is not easy as this will require a lot of investment. We need to raise momentum and commitment from the government, including investment. That is what the SDG is about; as espoused in one of its goals –  for countries to invest more for the elimination of NTDs!

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COUNTDOWN Launched at 9th Mano River Union Meeting on Neglected Tropical Diseases

19th-21st October 2016, Monrovia, Liberia

Prof. Russ Stothard

Originally created in 1973, the Manu River Union (MRU) is an intergovernmental institution comprising of Sierra Leone, Liberia, Guinea and Cote d’Ivoire. Primarily, the MRU was formed to promote local trade and economic development. Since 2006 its scope has expanded. Today this includes issues related to health policies and practices, specifically in the harmonization of ongoing interventions against neglected tropical diseases (NTDs) as several NTDs cross-borders. A very pertinent example of when cross-border collaboration was crucial was evidenced by management of the Ebola Virus Disease (EVD) epidemic. Without a cross-country response in Liberia, Sierra Leone and Guinea the epidemic would not have been curtailed. Nonetheless, the EVD crisis severely shocked the health system and suspended many ongoing interventions against NTDs. Thus for Liberia to host the 9th MRU on NTDs is a testimony to reinstatement of routine activities.

In Liberia, the COUNTDOWN team is a collaboration between the Ministry of Health and University of Liberia-Pacific Institute of Research and Evaluation (UL-PIRE). Each partner was very busy this week in preparations to host the 9th MRU meeting. This brought together just over 90 Anglophone and Francophone delegates, inclusive of the MRU secretariat and many representatives of those practicing NTD control in West Africa and elsewhere beyond. We were delighted to represent COUNTDOWN as part of the international partners and were well-placed to assist the Liberian team. In addition to the standing MRU agenda, this 9th MRU meeting was especially significant for it marked the formal launches of the Liberian COUNTDOWN programme and the Integrated NTDs Case Management Programme as well as the inauguration of the first Liberian NTD Ambassador Dr Everlyn Kandakai.


Prof. Russell Stothard – COUNTDOWN Director & Dr Evelyn Kandakai – Liberia NTD Ambassador

The strategic plan for integrated case management of NTDs is the first of its kind in sub-Saharan Africa. Clearly Liberia is forging ahead and should be much congratulated in its efforts. Alongside patient management of Buruli ulcer, leprosy and yaws, detection and surgical-interventions against hydrocele, a complication of lymphatic filariasis, were reported. Over the years the LSTM-FPSU, as supported by DFID-UK, has played a major role in assisting Liberia to develop an action plan for management of hydrocele. This was reported at the meeting by Brent Thomas.

At the start of the MRU meeting we were all very touched by a personal testimony given to us by Annie Toweh, a young girl who had had a very extensive Buruli ulcer lesion. She much benefited from the closer attention to this condition and had undergone treatment with skin-grafting; we were happy to see that she was well on the road to recovery and gaining a normal life.

The role of the NTD ambassador is primarily to promote activities of the NTD programme, especially in supporting the interface between ministries and promoting appropriate communications and messaging to and from disease-endemic communities. Dr Kandakai has had an outstanding career in shaping education in Liberia from tertiary to primary levels and wished to bring her skills to ensure that the education sector fully embraces the activities of the NTD programme.

A key channel of communication is the weekly 45-minutes health promotion slot on national radio. This is broadcast across the nation on 99.9 FM and on Tuesday, I took part in a radio interview with Karsor Kollie (MoH COUNTDOWN) and Miatta Sonkarlay Sonkarley, (Map International). During discussions I was able to highlight Laura Dean’s recent work with UL-PIRE which is now ready to start fieldwork this coming month in Bong and Maryland Counties, respectively and we look forward to their findings.


R-L: Prof. Stothard, Karsor Kollie – COUNTDOWN Liberia Country Director, Miatta Sonkarley – Liberia Programme Manager MAPs International (Medical Assistance Programmes), Talk Show Host – Sabbah

As Kate Hawkins once told us, in COUNTDOWN communications should be everyone’s business. Team Liberia has now established a twitter account @COUNTDOWNLR and was active throughout the MRU meeting tweeting and taking notes. This helped to provide two recap sessions at the start of each day as well as drafting the 12 formal recommendations forthcoming the deliberations from the meeting. With regards to the recommendation of establishing an effective communication strategy to address NTDs implementation programme, it is therefore very fitting that COUNTDOWN is helping Liberia to develop an inclusive strategy. This will also be adopted in due course by other MRU countries so we have a lot to expect from the 10th MRU meeting to be held in Guinea.



Future directions in Neglected Tropical Diseases

By Eleanor MacPherson, Liverpool School of Tropical Medicine

On the 14th June I attended a meeting of the All-Party Parliamentary Group (APPG) on Malaria and Neglected Tropical Diseases (NTDs). It brought together a panel of four men to discuss Neglected Tropical Diseases and the Sustainable Development Goals. The panel included three members from the World Health Organisation: Dirk Engels (Director of NTDs), Christopher Fitzpatrick (Economist for NTDs), Bruce Gordon (NTD-WASH strategy) and Mr Andy Wright from GSK Uniting to Combat NTDs. The meeting was chaired by Jeremy Lefroy the MP for Stafford and coordinator for the APPG on Malaria and Neglected Tropical Diseases.

Here are five reflections on our discussions:

  1. Including women in community led mass drug administration can improve women’s standing within communities. Dirk Engles talked about the different ways that tackling NTDs could help meet the 17 Sustainable Development Goals but this one stood out. He described how including women as community drug distributors could be empowering for women because by taking a leadership role they were challenging gender norms. However, I would love to broaden this out to highlight the multiple ways gender shapes women and girls’ experiences of NTDs. These include the way social norms within communities often mean that women and girls are expected to interact with infected water sources on a near constant basis. Women can experience greater stigma from living with the clinical manifestations of NTDs. For instance, women living with swelling in their legs can lead to greater stigmatisation both within their families and in the communities more broadly. Expectations around who provides care in households can also mean that women and girls care for those living with the symptoms of NTDs. Making sure we highlight the diverse ways gender power relations shape vulnerability and experiences of living with the diseases is vital. One step to doing this would be the inclusion of women and girls voices in the design health and social programmes to ensure their needs are not overlooked.
  2. Despite free drugs being available not all countries request them: Understanding why countries do not request free drugs is important. Health systems in resource limited settings are often overburdened. Provision of free drugs is only part of a health programme. Many bottlenecks obviously exist that prevent countries from requesting and delivering these programmes. Taking a health systems approach that asks stakeholders what challenges governments face that stops them from requesting drugs could provide important insights.
  3. We need to look beyond just giving drugs: Where people live, whether they have access to safe water, whether they have access to health care, and what they do for a living can all affect their vulnerability to NTDs. Giving preventative chemotherapy has to be seen as a strategy that goes hand in hand with other interventions that aim to prevent people becoming infected in the first place. These include vector controls as well as Water, Sanitation and Hygiene (WASH).
  4. WASH is not always easy but it is necessary: WASH’s start-up and maintenance costs can be expensive but given the very real ways it can prevent illness and suffering investment should be made.
  5. Let’s not leave anyone behind: Millions of people, and their families, continue to be affected by NTDs. Making sure that these people’s health and social needs are considered and addressed within NTD programmes is of the upmost importance.

It was heartening to see the successes of NTD interventions such as the lymphatic filariasis programme from the last decade. However, it is clear that many challenges still remain if we are to live in a world free of NTDs.

Photo credit: Lake Malawi by Eleanor MacPherson

Building links with polio surveillance in Ghana

By Lucas Cunningham

The COUNTDOWN team in Ghana completed a successful qPCR workshop and I stayed on in Accra and with Dr Mike Osei-Atweneboana to help consolidate research links with The Noguchi Memorial Institute for Medical Research (NMIMR).  During the week I started to implement the practical skills learnt and develop laboratory protocols for our qPCR diagnostic assays acquired during our workshop.

The NMIMR was founded in 1979 as a memorial to the Japanese scientist Hideyo Noguchi who died in Accra from yellow fever in 1928. The NMIMR is part of the University of Ghana and is a world leading biomedical research facility in West Africa. The NMIMR includes the Ghanaian national polio laboratory, which is part of the global polio laboratory network (GPLN). The Ghanaian polio laboratory receives over 1000 faecal samples from across the country of suspected polio cases. Typically the samples have come from individuals presenting with acute flaccid paralysis, a classic sign of acute polio.

COUNTDOWN will carry out a preliminary screening of the faecal collections to test the possibility of tapping into the vast resources of the global polio surveillance programme to co-screen for worm infections. Along with schistosomiasis, these diseases are collectively grouped within the soil-transmitted helminth and make up a considerable public health burden in Ghana and across the developing world, ranking that of other, more infamous diseases such as malaria and TB.

Using the TaqMan® qPCR assay, the team at NMIMR will screen for the six major helminth parasites associated with poor sanitation and hygiene, Ascaris lumbricoides, Trichuris trichuria, Strongyloides stercoralis plus the two hookworm species Necator americanus and Ancylostoma duodenale. In addition, faecal samples will be screened for Schistosoma spp.. Several of Mike’s staff from Council for Scientific and Industrial Research (CSIR) were part of the visit to NMIMR which provided another opportunity for crosstalk between two of the research centres focal to COUNTDOWN in Ghana.

In total seven collaborators from both institutes took part, including two members of NMIMR’s parasitological department. Dealing with a smaller group allowed for a more informal approach to the optimisation and testing of the compatibility of the reagents with the specific equipment in the polio lab. Our adapted assays were carried out efficiently, resulting in an effective triplex assay, where three species of parasite can be detected simultaneously in each tube. Armed with this new tool we were then able to screen 15 faecal DNA extracts obtained from a recent pilot survey undertaken at a Lake Weij. The test results were surprising. Although all 15 samples were negative for the five soil transmitted helminths (STH) they all tested highly positive for Schistosoma s.l., indicating a heavy egg load in the faecal samples.

Having carried out the work at NMIMR we were able to reinforce the methods developed in the workshop and also leave behind enough laboratory materials for our colleagues at both the CSIR and NMIMR to practice and perfect their qPCR assays and hone their TaqMan® skills. We have also shown the importance of the COUNTDOWN consortium in bringing together different silos within Neglected Tropical Disease work and helping with the capacity building and thereby control of some the most neglected of NTDs.

Our experiences and successes in Ghana were recently broadcast to a wider audience at the British Society for Parasitology’s Spring Meeting (@BSPparasitology, #BSP2016). There I provided an overview and account of our recent activities in Accra during a well-attended session dedicated to research on NTDs and I hoped to show how our interdisciplinary research links have been strengthened. In short I outlined how the second year of COUNTDOWN research is shaping up, so watch this space!

Photo credit: Our teams from CSIR and NMIMR by the Noguchi memorial plaque, from left to right: Buhari Hamid, Linda Boatemaa, Edward Tettevi, Deborah Pratt, Millicent Opoku, Nana Pels and Nana Asante-Ntim

Learning from the Neglected Tropical Disease NGDO Network

By Suzy Campbell,

Over the past few years it has been exciting to see momentum building to address integration and health systems strengthening beyond the traditional vertical approaches of funding and delivery of single disease strategies. A recent supplementary issue of International Health, a journal of the Royal Society of Tropical Medicine and Hygiene has a strong focus on health systems strengthening, and should be essential reading for anyone with interest in addressing NTDs.

The supplement has been largely coordinated by the Neglected Tropical Disease (NTD) Non-governmental Development Organisations Network (NNN), and is refreshingly dedicated to partnering across the entire sector to continue addressing the challenging issues pertaining to prevention, treatment and management of NTDs.

Intersectoral and transdisciplinary cooperation and learning

Of particular note is the article by Hopkins who describes the new project framework developed by the World Health Organization (WHO) Africa Region to replace the African Programme for Onchocerciasis Control (APOC). APOC ceased in 2015 yet has been widely recognised for its contributions towards health systems strengthening, as it has enabled infrastructure development and mobilisation via community health workers, thereby facilitating access to chemotherapeutic drugs by people who have otherwise been truly unable to reach them. The new framework, the Expanded Special Project for Elimination of Neglected Tropical Diseases (ESPEN), will be introduced throughout 2016 and will extend beyond onchocerciasis to coordinate all NTD activities in the African region. Together with the current focus on intersectoral, transdisciplinary cooperation and learning, ESPEN will provide an unprecedented opportunity to drive impetus for integrated health system strengthening activities. This does set a new support structure for integrated NTD control and elimination, and we look forward to its further development with great interest.

NTD morbidity

Much valuable work has been done over the last 15 years to map various NTDs and enable resource prioritisation via chemotherapy. Yet the sheer scale, and varying morbidity, of NTDs means that, in addition to the important prevalence and treatment coverage statistics, it is equally important to capture data on additional morbidity measures. Having sound knowledge of the disease burden from these diseases does facilitate advocacy for their control. There are several articles in the supplement that highlight the importance of capturing data on NTD morbidity, including the importance and measurement of coverage statistics, and a research agenda for the NNN to identify common indicators that can be shared across NTDs.


Integration, as it is directly influenced by NTD control and elimination strategies, needs to be strengthened with inclusion of structural system enhancements delivered as part of the universal health coverage agenda. For many NTDs, this does require consideration beyond chemotherapy to include “multi-component integration”. However, it is clearly acknowledged that more evidence is required, that it is expensive and logistically challenging, and that it requires strong cross-sectoral collaboration. In the supplement, Waite et al. provide a comprehensive review of the progress that has been achieved in, and opportunities to prioritise, integrating water, sanitation and hygiene (WASH) with NTD programmes. Integrated WASH and NTD control contributes simultaneously to several Sustainable Development Goals and every opportunity needs to be taken to further promulgate this.

What’s next?

The international health community does need to determine what a truly integrated universal health coverage agenda should encompass. The NNN has contributed heavily to driving this agenda, as have other organisations. Looking beyond NTDs, this is in direct alignment with macro-political strategies as set by the World Bank, the WHO and other parties. By necessity, a universal health coverage agenda must be broader than NTDs, however NTDs are a major part of this (having been referred to by the WHO as a “litmus test”). As NTD practitioners and researchers we therefore have a major opportunity to collectively share knowledge and in so doing propose critical requirements of integrated health care.

We at COUNTDOWN are delighted to see this supplement published and are wholehearted in our support of its messages.


COUNTDOWN on diagnostics for soil-transmitted helminthiasis and schistosomiasis in Ghana

By Russell Stothard

Shortly before Christmas, I had the pleasure of visiting Accra and Dodowa to discuss with the COUNTDOWN teams our research on DNA diagnostics. Previously, the surveillance of soil-transmitted helminthiasis (STH) and schistosomiasis has relied upon traditional parasitological methods. This involves rather old-fashioned techniques to visualise worm eggs in stool or urine samples by light microscopy. Although pragmatic in field-based surveys, these parasitological methods are insensitive and do not precisely capture the true levels of infections.

Improving diagnostics by introduction of modern molecular methods is important for two reasons. First and at a population level, infected cases are better detected leading to more accurate reporting and subsequently better allocation of treatment. Second and at an individual level, the more cryptic associations between infection and disease are unveiled. For example, for the latter in better describing the relationship between growth stunting and STH in children or the gynaecological impact of female genital schistosomiasis in adolescent girls.

A major research theme in COUNTDOWN is to develop and strengthen the molecular diagnostic capacity within the laboratory of Dr Mike Osei-Atweneboana. Mike will also explore future synergies with the Ghanaian polio programme based in the Ngouchi Institute, Accra which regularly collects thousands of stool samples from children. Regular access to these samples and heightened scrutiny with molecular diagnostics could provide a wider platform to assess STH throughout the country.

Last September, Dr Emily Adams visited Mike’s laboratory to make a preliminary situation assessment of his equipment needs. I was there in December to assist him with further planning for a forthcoming training workshop in DNA diagnostics. This is to be held the week of 14th March in Accra and in liaison with colleagues from the Ngouchi Institute. I visited a primary school in New Abarim where ongoing deworming had just taken place. We also made a spot-check visit on the local health centre in Adausena. It is clear that future application of DNA diagnostics in these settings will shed new light on the true burden of disease.

Ahead of the workshop in March, Emily and I will be taking steps with Lucas Cunningham to develop a training manual and also assemble the necessary DNA reagents for transfer to Ghana. To make a success of the training course, I am delighted to report that Dr Jaco Verweij, the world’s expert on DNA diagnostics, will be visiting the LSTM in February to provide use with best technical advice and later also join us in Ghana to develop best clinical international standards.


Come see COUNTDOWN at the Prince Mahidol Award Conference

We’re delighted to be attending this year’s Prince Mahidol Award Conference which is focussed on the theme of Universal Health Coverage. We’ll be represented by Kate Hawkins, Sally Theobald and Louis-Albert Tchuem Tchuenté.

At the conference we’ll be presenting our poster on progress on control and elimination of Neglected Tropical Diseases (NTDs) as the ‘litmus test’ for Universal Health Coverage (UHC). Mass Drug Administration (MDA) has been successful in reaching high numbers of people affected by NTDs resulting in progress toward the control and elimination of NTDs in many contexts. However, numerous bottlenecks still remain for the scale-up of MDA if the WHO 2020 targets are to be met. If UHC is to be achieved these aspects need to be addressed and the health system strengthened. We outline the challenges that are being faced under the six health systems building blocks – financing, workforce, information and research, service delivery, leadership and governance, and medical products and technologies – and suggest some ways forward.

If you are attending the conference do come and find us. It would be good to connect.

The Ebola outbreak and the wider health system: understanding impact and the way forward in Liberia

By Laura Dean, Anthony Bettee, Kate Hawkins, Sally Theobald and Karsor Kollie

During the recent Ebola outbreak Liberia lost over 185 of its professional health workforce. Trust between health workers and communities broke down and resources were diverted from routine health system activities to control the outbreak. This resulted in the near collapse of the health system as well as changes in the disease landscape and increased vulnerabilities related to the social determinants of health for many people.  As the health system is rebuilt, it is critical that the full impact of the outbreak at all levels of the health system is understood from the perspective of different stakeholders, in order to put forward strategies to strengthen the resilience of the health system.

Small grant

In collaboration with the Ministry of Health in Liberia, COUNTDOWN colleagues were recently awarded a small grant for research engagement from the Thematic Working Group on Health Systems Research in Fragile and Conflict Affected States. We will use this to convene two stakeholder meetings, one at the national and one at the county level that explore the impact of the Ebola outbreak on the health system with a specific focus on  the Neglected Tropical Disease (NTD) control programme. We aim to highlight the opinions of people whose voices are often not heard at such meetings, for example community members and frontline health staff. We hope these meetings will provide a unique opportunity to gain deeper understanding of the impact of health system collapse on vertical programmes and explore how these programmes can help support the wider system.

The Neglected Tropical Disease Programme in Liberia

The NTD control programme in Liberia is an integrated programme established in 2012 that engages with the health system from central Ministry of Health to the community level. During the Ebola outbreak the NTD programme ceased activity in order to support Ebola control, however it is now slowly beginning to resume activity. However before it starts up fully there is a need to understand in more detail the challenges faced in NTD control both prior to and since the Ebola outbreak. The stakeholder meetings allow reflections on the operations of the NTD control programme prior to the Ebola outbreak, as well as assessing how the Ebola outbreak may allow for a revitalisation of the programme to achieve a scaled-up, equitable response to NTDs in Liberia.

Follow up

As a result of the meeting we hope to develop a research agenda for health systems with specific focus on NTD control in Liberia that we can begin to address within COUNTDOWN. The engagement of international stakeholders from other Ebola affected countries such as Sierra Leone aims to increase the transferability of this research agenda and its findings, as well encouraging south-south collaboration and lesson learning as health systems are rebuilt. Watch this space for more information and outputs from COUNTDOWN’s first stakeholder meeting in Liberia!

Image: Courtesy of UNMIL/Emmanuel Tobey

How can learning from Lymphatic Filariasis help guide advocacy for Female Genital Schistosomiasis?

By Margaret Gyapong (Ghana Health Service)

It was really useful for me to attend the recent meeting in South Africa on Female Genital Schistosomiasis. I have never worked on Schistosomiasis before. Most of my work has been on Lymphatic Filariasis and Neglected Tropical Disease but I moved about a decade or so into malaria, Demographic Surveillance, maternal health and other areas of research. In recent times however, I find that I am being drawn back into Neglected Tropical Diseases. Hence my attendance at this all important meeting on Female Genital Schistosomiasis, and I find the emerging discussions intriguing. Clearly there are many research questions that still need to be answered on the relationship between schistosomiasis, reproductive health and HIV. Work needs to be done to get this issue on the radar of decision makers and scientists. To support this there is a lot that we can learn from the journey we took in Ghana to put Lymphatic Filariasis on the national and international health agenda.

Early days

There is evidence that more than a decade ago scientists were drawing attention to Female Genital Schistosomiasis so why is it not on the agenda? 25 years ago there was no Lymphatic Filariasis programme in Ghana and a lot of effort had to go into convincing the decision makers in the health sector that the disease was a problem and needed attention.

Work on Lymphatic Filariasis  started kind of by mistake when in the early 1990’s some of us were posted to the north of the country to work on a Vitamin A supplementation trial. During field work we noticed a lot of people walking around with big legs and baggy pants (that were clearly disguising scrotal swelling, technically known as hydrocele).  Coming from the South of Ghana, this was unusual and we decided to explore the issue in more depth.

Gathering the evidence

A survey we conducted  in 1995 with lay field workers using local terms for the disease showed  that over 12% of households reported at least one person with a big leg (lymphoedema (tissue swelling) or elephantiasis (skin/tissue thickening) of limbs). We spoke to the powers that be in the Ministry of Health at the time but the response was very much, “The disease doesn’t kill and there are many more burning issues such as malaria that needed urgent attention.”

Luckily for us the World Health Organisation’s TDR, the Special Programme for Research and Training in Tropical Diseases, was putting out calls for proposals at that time and we linked up with other countries and scientists to gather further evidence.  From 1996-2001 we aggressively collected evidence on the epidemiology of the disease in the entire country and showed the highest prevalence in the north of the country, the number of working days lost due to disability from the acute phase of the disease, and varying cultural beliefs and practices about Lymphatic Filariasis. This enabled us present a much more complete picture to national policy makers.


But evidence alone wasn’t enough to provoke change, and we also engaged in activities which could more accurately be classed as advocacy. We realised that at the international level there were many people doing disease modelling who had probably never met a person with the condition. So we showed photos of people from the field – and to be honest many of them were pretty gory. But they got people’s attention. We also thought it was important for people affected by the condition to tell their story. Photovoice methodologies enabled community members to describe their lives before and after becoming disabled by Lymphatic Filariasis. We took one woman with us to a meeting in Geneva. This had a personal impact on scientists and policy makers. The photovoice stories on Lymphatic Filariasis moved some of the female policy makers almost to tears because they could relate to the way that women described their relationships with their bodies and the impact of Lymphatic Filariasis on their family and intimate relationships.

Why hasn’t their been more action on Female Genital Schistosomiasis

In 2005 my colleague and I did a review on gender and Neglected Tropical Diseases and I realised from the document (when I was preparing for the Female Genital Schistosomiasis conference) that as far back as 1992 issues related to Female Genital Schistomiasis  had been documented. Scientists had indicated that sequelae from Female Genital Schistosomiasis such as infertility have an important social and pathological impact.  They had also indicated that conditions may be undiagnosed because women would be more likely to present to a gynaecologist than an infectious disease specialist probably because Female Genital Schistosomiasis is not well recognised. Another interesting observation at the time was that Female Genital Schistosomiasis increases the risk of HIV infection because the lesion provides easier access to deeper vaginal cell layers during intercourse with an infected partner.

Why are we still talking about it today rather than acting?

Like Lymphatic Filariasis, schistosomiasis is a disease of poverty. It effects people living around rivers – people earning a living through their interaction with water, their children playing in water bodies and households rely on this water in their domestic lives. I think that if schistosomiasis was a disease like Ebola which anyone could get then perhaps something would have been done about it.

We also have to think about the social-cultural context. The people suffering are marginalised and find it hard to speak about issues related to their sexuality. Who can they talk to? How does a child have the words to describe what is wrong? We need to start listening to their stories. They will be graphic, but they are necessary.

Blood in the urine in certain cultures means you are a strong man and mature. Women may just think that they are bleeding between periods and that it is not important. When women bleed after sex because they have schistosomiasis (that is if they know it is schistosomiasis related)  can they talk about it with their partners? What about when it causes infertility? In many cases the woman will be the one who is blamed and she will go through unnecessary tests. Then when she remains undiagnosed and unable to conceive she may well suffer stigma and possibly be abandoned. There are major gaps in our understanding of the genital manifestations of schistosomiasis including a lack of data on the possible psychological effects of dyspareunia and post coital bleeding in women with genital lesions.

Rolling out and scaling up

It is time to act on what we know and skill up health workers so that they can diagnose Female Genital Schistosomiasis either in the clinical context or during Mass Drug Administration. We need to think carefully about how and when integration into other services occurs. Integration at community level can only occur with joined up thinking at the top. Our task now is to ensure that an approach is taken that takes account of the health system as a whole rather than bombarding communities with a host of new vertical interventions.

And in all of this we need to remember that we are dealing not just with blood or urine samples, but with people who have names and faces and their suffering is unnecessary.

Female Genital Schistosomiasis and its impact on HIV: Round up of Day Two

By Kate Hawkins

The second day of the South Africa meeting on Female Genital Schistosomiasis was as engaging as the first with a host of keynote speakers who were diverse in terms of their discipline, approach, and geographical and institutional locations. If you missed our notes on the first day you can find them here…

First up was Charles King, of the Center for Global Health and Diseases, Case Western Reserve University and the Schistosomiasis Consortium for Operational Research and Elimination (SCORE). He explained the methodology behind the disability-adjusted life year (DALY) system which calculates years of life lost and years lost to disability. DALYS are often used to prioritise health interventions and are important in terms of getting particular health conditions onto the global policy agenda and stimulating action. He told us,

“If you are at the bottom of the DALY league table you are out in terms of the priority given to your health issue.”

But is this the DALY the right measure in a world where multiple infections are the rule? There is evidence that schistosomiasis interacts with HIV and that helminths effect people with TB, and malaria. Helminths during pregnancy impair infant HIB vaccine response in the child. In older children (5-18 years) there is an impact of combined infections: children with Schistosoma haematobium infection, hook worm and malaria are more likely to have anaemia and growth retardation. They are shorter, less able to do active physical activity, experience more school absence, worse cognitive scores, and worse performance at school and none of these are presently factored into the DALY score.

Simply put, the DALY calculations are based on the assumption that people can only have one condition at a time. Furthermore if your condition goes undiagnosed (as it currently does in the case of Female Genital Schistosomiasis) you will not get it counted. Under the DALY system if there is comorbidity and someone dies the death is attributed to the ‘most important’ disease. But the decision about what disease is important is made by a small group of people in the US rather than by consensus among researchers and clinicians from low- and middle-income countries. So often this decision does not take into account the context of disease nor fallibilities of the health reporting system in sub-Africa where cause of death is often enigmatic. Furthermore, it also does not appropriately measure the often distressing effects of infertility in terms of mental ill health and family breakdown.

Amadou Garba, World Health Organisation, gave us an overview of the current state of play in terms of Neglected Tropical Diseases. Looking at the data reported in the WHO preventive chemotherapy databank, he explained that there was 12.7% global coverage for schistosomiasis treatments with praziquantel  in 2013.  In Africa, this is just 14.2%, a mere fraction of what should be expected. He argued that more countries need to introduce preventive chemotherapy and expand coverage at country level to all districts that require it. Merck donations of praziquantel have increased from 26.9 million in 2012 to 104 million in 2015. The biggest part of this donation goes to the Africa region which is the most endemic area in the world. So whilst insufficient medicines used to be the barrier to scale up this is no longer the case. This then, however, raises the question of how the low-level distribution of donated drugs will be sustained so they do not become stalled within the health system, something which COUNTDOWN will hope to address.

Multiple sessions in the meeting touched upon the need to begin schistosomiasis treatment programmes before children begin school. Amaya Bustinduy, of St George’s University, provided more evidence on the need to increase access to praziquantel at an earlier age, starting from six months of age. She explained how pediatric doses of praziquantel are currently extrapolated from adult data which, as typical of other medicines, is a flawed assumption. To formally test this her  work in Uganda clearly showed that  a 60 mg/kg dose gave a better egg reduction and cure rates against Schistosoma mansoni. Egg counts were supplemented by antigen testing (urine) which  also favoured higher dosing as well. Amaya posed the question, are we giving the right dose for the right outcome? Typical of pharmacokinetic/dynamics studies which are very technically demanding, she extrapolated her findings  using a simulated data set of 5000 children. This modelling showed that they only approach a target of 90% parasitological cure in 3 year old girls when they have a dose of 80 mg/kg. In school age children it is only when they get to 80mg/kg that we get acceptable cure rates. There are gendered differences, in that boys needed higher doses than girls. This is ground-breaking research showing how mis-leading the direct extrapolation of dosing from adults to children was. As a take home message, if you treat schistosomiasis before school age you can prevent up to 6 years of ill health in children which drew importance to the need of a suitable pediatric formulation of the drug and rapid deployment.

As Herman Feldmeier was unable to attend his lecture was presented by Peter Leutcher, on potential therapies for Female Genital Schistosomiasis and future clinical studies. He outlined how previous studies have shown that schistosomiasis haematobium is already present in girls, persists in women of reproductive age and may affect genital, urinary and intestinal tract simultaneously or subsequently. Taken together this means Female Genital Schistosomiasis is a multi-organ disease. So far the only drug used for the treatment of Female Genital Schistosomiasis is praziquantel. However, praziquantel’s efficacy depends on the response of the individual to treatment, the developmental stage of schistosome worms (praziquantel has limited efficacy on immature adult worms), where the worms are in your body (larval stages in the lungs often have insufficient drug exposure), and other medicines you might be taking. In review, it is safe to assume that a single dose of praziqunatel (40mg/kg) cures less than 50% of patients with schistosomiasis highlighting that multiple praziquantel treatments with higher dosing need to be investigated.

The clinical pathology of Female Genital Schistosomiasis reflects local inflammatory responses in the vulva, vagina or cervix; inflammation-related abnormalities account for ≥ 80% of all abnormalities; inflammation occurs in all layers of epithelium including blood vessels; inflammation is the result of a complex immune response; inflammation is associated with presence of viable eggs and worms. In a study in selected patients with Female Genital Schistosomiasis Richter et al. observed that after a single treatment with praziquantel some types of lesions resolved and others remained unchanged demonstrating a complex patho-physiology.

Many different kinds of outcome measures were used to assess the efficacy of praziquantel. This ranged from infertility to complaints and signs such as sandy patches or contact bleeding. Outcomes were assessed at very different intervals from 2 weeks to 12 months. In one study there was no reduction at all and in other studies it was up to 73%.

So we can conclude that none of the previous treatment studies was appropriately designed; there was not a single randomized controlled trial. The true efficacy of praziquantel in treating Female Genital Schistosomiasis has never been formally assessed as there has been no control of reinfection, which is of course difficult to rule out in out-patient settings. Different outcome measures were used and, therefore, no conclusion about the efficacy of praziquantel is possible.

To address this deficiency, Peter  outlined how an expert group has conceived a randomized controlled trial with three treatment arms. In group A patients will receive the standard treatment, that means a single dose of praziquantel. In group B patients receive three doses of praziquantel. Dose one is given immediately after diagnosis. Dose two is given one day later and dose three is given two days later. In group C patients receive an identical treatment as those in group B. In addition, they receive another dose of praziquantel after five weeks and a final dose after 10 weeks. These additional doses are foreseen to kill schistosomula which have developed in the meantime to adult worms and to prevent reinfection to establish. Patients are followed up 5, 10 and 16 weeks after initial treatment. He suggested that this study would arm us with the type of information that we need to respond adequately to Female Genital Schistosomiasis.

But how can we can take action on the diagnosis of Female Genital Schistosomiasis now rather than later? Part of this solution  requires  tools so that health workers recognise Female Genital Schistosomiasis when they see it. Sibone Mocumbi, Head of Gynecology, Hospital Central de Maputo, presented on the deployment of one exciting new tool, the Female Genital Schistosomiasis Pocket Atlas.

Sibone explained that lesions in Female Genital Schistosomiasis may mimic any neoplastic infection in the female genital tract. Health care workers know very little about it and so they don’t take the opportunities that they have to treat it. Women are often misclassified as having Sexually Transmitted Infections (STIs) and lab diagnosis is not sufficient.

The Pocket Atlas is a tool for low-resource settings to enable health care professionals to identify Female Genital Schistosomiasis and avoid unnecessary radical surgery and misdiagnosis of STIs. It contains pictures and outlines the methods for examining patients and the symptoms to expect.  It will be disseminated for free especially in the rural areas where schistosomiasis is endemic. It was put together in concert with gynaecologists, doctors, nurses, and clinicians. It will be available in English, French and Portuguese. They will also be creating a poster, online versions of the Atlas, a PowerPoint presentation, video, and a website. Watch this space!

To further clarify the action of praziquantel the final presentation of the day, by Collen Masimirembwa (African Institute of Biomedical Science and Technology, Zimbabwe) addressed our lack of knowledge about the pharmacological effects of this drug. Pharmacokinetics is the absorption, distribution, metabolism and excretion of drug as it metabolises in the body. If you understand this it helps you understand how often to give the drug and how much you should give. At the moment our practice is driven by observation. But we don’t know how much of the drug should be in the blood and that is important. With drugs like praziquantel you can lose a lot of the active ingredients in the gut and that which is absorbed is quickly metabolised by the liver by a complex set of cytochrome P450 oxidases. Understanding this will allow us to better understand the differences between individuals when it comes to efficacy. Currently we know very little about the distribution across the body so we don’t know if it is exactly restricted to the blood or if it goes into other tissues and lasts there much longer.  If we are eager to push forward with paediatric formulations we need better data on this following along the lines of the seminal data presented earlier by Amaya. It would also assist us with understanding drug interactions – such as with those of other NTDs or HIV. Collen cautioned that there may be serious interactions with TB drugs. During questions, Russ Stothard raised pointed out that the unusual position of the adult schistosome population in the body, largely residing in the hepatic portal vein, which means the schistosome has a very different surrounding drug environment to that which we can measure within the peripheral blood stream.

After the final break-out session the workshop reconvened in a plenary session led by Eryun Kjetland which was a brainstorming and question and answer session with the audience about where to go next and how to do it. It was remarked at how supportive, refreshing and collegiate this symposium was and so the meeting finished on a real high. Many people pledged to take forward action at home based on what they had heard either in informing their local Ministries of Health, revising their teaching content or providing access to samples for further testing. The conference organisers will be arranging some official communications on lessons learned and next steps via the conference website and a working group on Female Genital Schistosomiasis/HIV will be formed to ensure the network is sustained. COUNTDOWN will be sure to advertise them here and on other social media. If you have any questions about the meeting feel free to leave a comment below and we will get back to you. Thank you for reading.

Photo courtesy of Trygve Utstumo under a Creative Commons License. You can view more images here…