Question Time on Neglected Tropical Diseases (NTDs): The COUNTDOWN has begun!

By Susie Crossman, Liverpool School of Tropical Medicine As part of the COUNTDOWN launch we gathered together a group of international NTD experts (David Molyneux, Lorenzo Savioli, Moses Bockarie, Alan Fenwick, Margaret Gyapong, Kamal Kar and Tim Martineau) for a lively chat on the priority areas in the response and some pressing issues that need further exploration. Our colleague Sally Theobald ably chaired the event.

Sally – We are moving from the Millennium Development Goals towards the Sustainable Development Goals (with a focus on universal health coverage). What opportunities does the new international policy environment offer for NTDs?

Lorenzo – The Millennium Development Goals were set up for communicate about health NTDs were not identified as big issues. The environment has since changed, and NTDs are much more visible. The most recent World Health Organisation NTD report draws our attention to the 2020 and 2030 goals that have been set in this area. I think COUNTDOWN is an opportunity to help WHO set new deadlines which we don’t yet have for certain diseases, such as Schistosomiasis. NTDs are an important issue in family health at the moment.

David – One of the most important things in the new WHO report is the reference to universal health coverage. I take a practical view that we have vast drug donations that companies have agreed to provide for a very long time but they are all on the WHO essential medicines list. Billions of tablets are available and the uptake of drugs is not very big – in some cases, drugs are going to pass their expiry dates. If countries had to buy these drugs and  they were not donated,  it would cost them billions and yet they are still not prepared to commit 25¢ per person per year to deliver them. In the context of cost, the unit cost of delivery of 25¢ is only 1% of health expenditure of the poorest African countries. If you look at the WHO health financing document for Liberia, Mali and Malawi, the total expenditure is $26 per person per year. So a 1% commitment from countries would deliver all of these donated drugs. Availability of these products is highly relevant in terms of access to medicines in universal health care aside from of the impact they are having on transmission and morbidity. I believe these diseases are integral to universal health care. Let us remember we are talking about the poorest quarter of the planet who are essentially do not have any medicines and I’m eager to make the association between poverty and NTDs – it’s a critical issue in terms of advocacy on the Sustainable Development Goals. The most important thing is, that NTDs are written in the document that emerges from the process. Without that, we don’t have any platform at all.

Sally – NTDs affect socially excluded, poor, marginalised communities and they are critical to universal health coverage and we need the investment in the health systems, structures and support to make sure that they are appropriately addressed. If we think about social determinates, can I ask how you see gender, equity, poverty and disability shaping access to preventative chemotherapy and morbidity management? What are the issues there?

Margaret – Strengthening health systems is critical. Programmes are run vertically and multiple NTD programmes further overburden the systems. It would be useful to focus on the entire system so that drugs can reach those they are supposed to reach. In terms of social determinates and equity, COUNTDOWN represents a unique opportunity for us to be able to look at these issues in detail – in terms of who is exposed, how they are exposed, the ages of people exposed and issues to do with uptake of the different interventions that are coming. It is important to remember that women and men play differ roles. We need a lens to look objectively, to be able to address these issues to different groups of people and in relation to the way they are exposed to ill health.

Sally – Looking at the different themes of COUNTDOWN, one common area that cuts across all of them is the critical role that community based drug distributors’ play – reaching out to communities and being at the forefront of Mass Drug Administration (MDA) and preventative chemotherapy.

Tim – With community health workers the question is, why are they doing this, what’s in it for them? I consider them as part of the health workforce and with all people working in the health workforce, how do we recruit them, how do we retain them and how do we refresh the supply? Most importantly, how do we support them to do their work? Very often community health workers are a simple extension of the health system. They may be asked to do health promotion and behaviour change work or they may be community activists to get people working together, and these varying tasks require support. It is very important to ensure they are well connected to the formal health system. You need community health workers the most where the system is the weakest and the connection can be difficult to make.  It is not just training them up but making sure that the support mechanisms are in place. However you are employing the distributors or community health workers, what incentives they get will impact on the entire system and how those community health workers work for other people.

Moses – What is clear about the value of community health drug distributors is how they have become important people. Community drug distributors involved with the delivery for NTDs have helped a lot in terms of delivery for other diseases such as bed nets for malaria, so they are important on many levels.  They form the centre of cross-sectorial approaches and issues around the Sustainable Development Goals.

Sally – When we talk about integrated services within and beyond NTDs, what is appropriate, acceptable and feasible? There are opportunities for cross-sectorial action between health, nutrition, sanitation, education, Ministries of gender, youth and community services.

Kamal – The BMJ says that the greatest innovation of the century was sanitation – yet 2.6 billion people do not have access to basic sanitation. Outside agency-led NTD control must change and should move into a community-led system. There has to be inter-Ministry coordination and institutional coordination.

Sally – We need to empower communities to develop structures and systems that support and respond to their needs. There is a requirement to understand lives and livelihoods of those affected, to hear their voices and perspectives and feed those into ongoing policy and practise as well as those at the front of the health system like community health drug distributors.

Lorenzo – Sometimes countries implementing NTD programmes are not aware that in the meantime there is UNICEF large scale chemotherapy going on in parallel. For example, in Cameroon we have been able to involve the vaccination days with the preventative chemotherapy activity. I praise DFID for supporting the COUNTDOWN proposal to help understand why preventative chemotherapy targets have to be set and where the problems are. We should applaud DFID and propose that they, together with the USA continue to fund large scale chemotherapy treatment and other NTD research. In COUNTDOWN it’s not one individual but a group of skilled people from within LSTM and the affected countries themselves that are putting together collective thinking to answer these questions. It is so important that the outcome from all of these activities becomes policy by involving WHO and UNICEF.    We are sure we need to go beyond 2020 and we need to understand all the social science problems. It is not a static system, the situations and people change, and it is a system that changes all the time so understanding the underlying mechanisms is really crucial.

Sally – COUNTDOWN will be conducting research embedded in context that is not there simply to gather dust on library shelves or within computers but to have impact – on policy, on practice, and ultimately on the livelihoods of those individuals affected.

Alan – For Schistosomiasis, we have gone through a number of phases. GSK and Johnson and Johnson between them are donating 600 million tablets to deworm children and they are just not being applied for – applications are less than half for the number of tablets available. Merck donations have increased year by year – this year 100 million tablets to treat 50 million individuals will be made available but it’s still only 25% of individuals affected. Next year Merck are committed to donating 250 million tablets and that is enough to treat 100 million children so we have a huge shift in balance. It is critical that we all work together to ensure that those donations are used efficiently and effectively. Only two countries bilaterally support the implementation of NTD programmes so we have got to increase political will and increase resources so that we can make sure we use the drug donations.

Tim – While we can get help from experts, we all have to get engaged with research uptake right from the beginning of our research.  Research uptake is everybody’s business.

Margaret – Twenty years ago the research division was set up within the Ministry of Health in Ghana so that academic research would interact with programme implementers and policy makers to inform what the issues are and do the research to meet that is needed. COUNTDOWN, is making the difference because unlike other projects the researchers are working with the programme people to ensure that whatever is done is taken up and used.

Russ Stothard – Why have UNICEF forgotten Schistosomiasis in their management of childhood illnesses?

Lorenzo – Schistosomiasis is the second largest disease after malaria and there will be no agriculture development in Africa unless Schistosomiasis is under control. Schistosomiasis is always falling off the policy table especially for pregnant women. The use of, and access to praziquantel, for children under five and the issue of Schistosomiasis is the neglected of the NTDs in Africa and it is unacceptable. This is the big problem for Schistosomiasis control and I hope COUNTDOWN can tackle this.

Mark Bradley – The drug donations from the various industry partners form the foundation upon which universal health coverage and the sustainable development goals are going to be built. National health systems will have to take over responsibility, not just for the delivery, but for the procurement and entire process as time goes on. These donations are not there forever. What is important coming out of the research and the application of the research from COUNTDOWN, is to advise national governments on how to revise their investment models towards NTDs. That is what you want to be working towards. If you can do that in an effective manner, then you make huge contributions to universal health coverage and to the Sustainable Development Goals.

Jutta Reinhard-Rupp – Schistosomiasis has gained great momentum. The disease is difficult to understand – inflammation after many years is difficult to relate to the worm and the infection that occurs as a child.  I don’t know if COUNTDOWN would have been possible 10 years ago, what is happening now is that there are more organisations becoming interested to understand Schistosomiasis.

David – In terms of research uptake, in 1901 Ronald Ross recommend the use of bed nets for the control of malaria and it took a very long time for bed nets to be used globally. When you look at NTDs, you see really very rapid technical progress in some areas, for example, the rapidity that ivermectin got taken up by onchocerciasis programmes from the time it was registered. There is a tension between rapid research uptake and adequate research and we see this in the deworming debate. For COUNTDOWN we have five years which is not a very long time. What are the processes required to get something taken up fast? There is some conservative resistance in some quarters to be innovative to get things done. Many countries depend on the World Health Organisation for direction but now this is becoming a constraint because of the need to go through guidelines development

Lorenzo – It is not just a statement by WHO once that changes things, it’s the repeated statements in and speeches. Resolution deadlines can go completely unnoticed if nobody mentions it! WHO has to be involved in research uptake but they also need to be made aware that there is a constituency shouting out there.

Mark Taylor – We haven’t been able to encourage countries to invest in NTDs even though the drugs are there to distribute. I don’t think we ever will as they will never be a priority in these countries. Where I think we should focus, is getting extra financial resources for implementation. The British tax payer and the US tax payer donate funds for implementation. How can we engage other rich countries to provide the funds, to allow these countries to implement and deliver these drugs?  Why hasn’t this happened so far?

Moses – This is a question that African’s have been addressing. Dr Roungou (Director of APOC) came up with an exciting and successful idea to say to counties, do you realise that the drugs that are being donated to your countries for free are worth $30 million? So then a country provides $3 million to get them distributed, and countries have started putting that money in.  Yes, other countries should be getting involved in the global effort. Nigeria has donated $5 million and Ghana $1 million so it is just a case of posing the question – do you realise that so much is given and 1% more could produce results?

Anthony Bettee – COUNTDOWN is going to re-strengthen the community – if you look at the community, they are the bearer of NTD programmes. If you take a programme into a community and they are not involved you are not going to get anywhere – you need to engage the community right away to succeed. For Liberia we have Ebola and we have to understand the programme to see where we can go.

Mike Osei-Atweneboana – The supply of drugs is not going to be forever and there will come a point when these drug companies are not going to supply the drugs. Our Governments are going to have to put some money in to buy drugs and that is going to be a big challenge.   The principles that COUNTDOWN are using fits perfectly, because I have been with some research groups and consortiums and you do not find such a variety of expertise. The best we can get is lots of biomedical scientists and we throw in one social scientist! Here we have health economists, social scientists, and health systems all coming together with implementation and biomedical research scientists to make sure all the holes that are in research uptake are plugged; that all the loose ends are tight so there is enough ability to pick up the research that has been carried out straight away. It is just like having a production line and a ready-to-buy market so you just produce and it is bought. While the work is going on, the research uptake system is prepared to absorb what is being carried out in implementation to make sure that whatever we need for COUNTDOWN to reduce, and to bring the disease to an end, happens. We need to hurry, as African scientists, to make sure that we put in our maximum to hasten acceleration so that the time the drug companies say we are no longer producing and when our Governments say we do not have the money, at that time we have been able to accelerate the COUNTDOWN and kill these NTDs. I think COUNTDOWN is positioned and we, as African scientists and implementation programme managers, should take this with all the vigour that we can to make sure we are able to bring these NTDs to an end.

Kamal – That is absolutely correct and ensures you make the work demand driven. There is a saying in India, “those who know it, do it; those who cannot do it, teach others; and those who cannot teach, they take up research which nobody understands!” The scientists in the African nations must wake up and see it cannot be dictated from those countries where the diseases do not occur. It has got to be country specific and the political will has to be there for that to happen.

Ravi Ram – The research is focused on implementation and COUNTDOWN is well positioned because prioritises research uptake. We need to look at southern civil society because that will be critical to research uptake. You have good representation from Governments in COUNTDOWN but getting southern civil society involved will yield new information about whether there are certain groups that are being marginalised. We have seen a gender differentially in either treatment or exposure to NTDs and I think we’ll find out more about intersectionality – not just gender but other elements of power whether its ethnicity or linguistics that affect how groups are exposed to NTDs and the prevalence of NTDs.

Imelda Bates – An advantage that COUNTDOWN has is around strengthening laboratory systems, surveillance and diagnosis. From work with the World Health Organisation we have very clearly shown that global NTD laboratory networking is really non-functional and very weak. Within COUNTDOWN I am sure there are opportunities for going right the way from point of care testing in communities’ right up to the national and international level. It seems a unique opportunity for COUNTDOWN to be able to strengthen systems at least for laboratories in a very concrete way and I wonder what the panel thought about whether that would be an added value to the programme.

Moses – The CNTD has a lab in Sierra Leone where the technicians were trained in Ghana and it’s clear how helpful these networks can become.

Alan – It is clear there needs to be a structure of employment for these people and there is no point in training a lot of people unless there are jobs for them.

Closing Comment Mark Taylor – I acknowledge the recognition of funders and stakeholders that we still need research to run in parallel with implementation if we are going to eliminate these diseases. Also the need for multidisciplinary teams, and this is probably the biggest multidisciplinary team that has been put together within Liverpool School of Tropical Medicine, and you need this to be able to deliver complication solutions to these problems. This is a real consortium that comes together and really wants to work together to overcome the barriers we face in NTDs. The COUNTDOWN has begun!

COUNTDOWN launches in Liverpool with a special guest from Liberia by @sci_ntds

By Alan Fenwick, Imperial College

The presence of Dr Anthony Bettee at the COUNTDOWN launch was poignant because he had flown from Liberia. In two weeks, providing there are no new cases, Liberia will be declared Ebola free. However during the last 9 months almost 200 health workers have paid the price for their dedication and loyalty and lost their lives to Ebola infection. Despite this tragic result Liberia is ready to restart treatment of schistosomiasis and STH. We wish them well.

Other speakers included Nana Biritwum and Margaret Gyapong who were both brilliant. Louis Albert Tchuem Tchuente gave the Cameroon perspective.

The project will be directed by Professor Russell Stothard and I hope he thrives and grasps this exciting DFID funded research project.

Official COUNTDOWN Launch

By Julie Irving, Liverpool School of Tropical Medicine

COUNTDOWN partners gathered together today for the official launch of the programme. After a week of productive and enjoyable inception planning workshops, it was a valuable culmination of reflections of the current partner country situations, bottlenecks to Neglected Tropical Disease (NTD) control and planning for multidisciplinary priority areas.

COUNTDOWN is a unique programme for Liverpool School of Tropical Medicine in particular, as it brings together multiple staff from across our Deaneries, Clinical Sciences and International Public Health, and Parasitology and Vector Biology. All of whom are excited and enthusiastic to be working together on this cross disciplinary programme, funded by The Research and Evidence Division (RED) of The Department for International Development (DFID).

The consortium has representation from the UK, USA and Africa, with the aim of generating knowledge about the realities of increasing the reach of NTD interventions, in different contexts. It was motivating and moving to hear about the different settings and stages of integration of NTD programmes in Ghana, Cameroon and Ebola affected Liberia. All partners have been very engaged when sharing ideas and experiences both good and bad. I am looking forward to delving deeper into each country scenario and the NTD world, learning from our partners and supporting research uptake, programme and research management.

At the launch Sally Theobald moderated a panel discussion: ‘Situating COUNTDOWN in the Wider Neglected Tropical Disease and Health System World’ which stimulated a lot of audience participation. There was a real sense of collaboration and commitment from all stakeholders in support of COUNTDOWN’s ultimate goal, Implementation themes and approaches. In order to take forward the current needs and prioritises of our country partners and the wider international community.

The issue of sustainability and future drug supply was a hot topic, as there will come a time when drug companies are no longer going to supply medicines for free. There was much reference made to big challenges in getting Governments to invest money. This stressed the importance and necessity of the work COUNTDOWN will undertake. Our consortium is unique in bringing together a vast variety of skill sets and expertise from biomedical, health economics, social science and health systems.

To quote Mike Osei-Atweneboana:

“The best that has gone before has included a lot of biomedical scientists and one social scientist thrown in. COUNTDOWN will come together to look at all the gaps that can be addressed and exploited through research uptake, tying all the loose ends and ensuring research is picked up straight away. It’s like having a production line and a ready to buy market, so you can produce and quickly export. While the research is going on, the research uptake system is prepared to absorb what is being carried out in implementation.

We need to hurry as African scientists to make sure that we put in all our maximum, to hasten and accelerate, so when the drug companies say that they are no longer providing the drugs, and Governments say they don’t have the money, we have been able to accelerate and kill these Neglected Tropical Diseases. COUNTDOWN is excellently positioned and we as African scientists, implementation researchers, and programme managers should take this on with all our vigour, so that we can to bring these diseases to an end.”

For me one of the most crucial take home messages was the importance of working together with all stakeholders, at all levels of the health system and political environments. It has been an impressive start to the COUNTDOWN consortium, and an exciting start to my new position in support of the programme. I’d like to take this opportunity to thank everyone who has contributed to the last week of COUNTDOWN meetings, as I have already taken a great deal from all the discussions and presentations. I look forward working with you all over the next five years “Calling time on Neglected Tropical Diseases.”

COUNTDOWN in Nigeria

By Russell Stothard, Liverpool School of Tropical Medicine

A first dialogue with future partners

COUNTDOWN has been in Nigeria for a busy round of meetings. These ranged from establishing first dialogue with international partners (UNICEF/WHO) and national agencies (Federal Ministry of Health), to NGOs (FHI360, Sightsavers, Helen Keller International etc.), with academia (Bingham University) and clinical medicine (Zankli Medical).

I found this series of consecutive meetings truly informative. Above all, they revealed the sincere politeness and etiquette to be found in Nigeria, especially by those whom have dedicated their professional lives to the study of tropical medicine and the control of Neglected Tropical Diseases (NTDs). This gentle hospitality often gets somewhat overlooked with pre-trip concerns about presidential elections or terrorist activity.

Why NTDs in Nigeria?

In our original DFID tender, we did not feature direct activity in Nigeria. This was primarily due to budget constraints. But this view has been revised through our discussions with DFID and other donors and we now believe it is important to develop supportive activities in Nigeria, and these are ear-marked to take place in the latter half of our programme.

It must be remembered, as I often heard on my visit, that Nigeria is a very big place, with a large population. Coordinating activities across the many States of Nigeria is really challenging, and what I saw was that they are each doing their level best with limited resources available. Clearly COUNTDOWN should help orchestrate additional support across the international donor landscape to ensure that Nigeria has the resources they deserve.

Towards an expanded partnership

Nigeria has fully functional National Plan for Control of NTDs, with supportive documentation, which has been honed with regular updates and amendments by research-led activities. I met the central team, headed by Ifeoma Anagbogu, and they are rich in knowledge and experiences on-the-ground. Talking with this team and hearing their insights into bottlenecks in the delivery and sustainability of control was a rare privilege. Potential solutions to these challenges ranged from addressing treatment coverage in schools where there local school enrolment is low, to identifying better ways to sustain, reward and further incentivize Community Drug Distributors (CDDs). Imagine the scale – Nigeria has 774 local government areas (LGAs) with several hundred CDDs typically on the books within each LGA alone – this adds up to about half a million volunteers!

Being based in FHI360 for the week meant I was also fortunate to have direct discussions, with several people including the Deputy Country Director Robert Chiegil, elaborating the connection between schistosomiasis and reproductive health/HIV. It is very easy for me to be passionate about this issue and stress the importance of female and male genital schistosomiasis in Nigeria. We quickly identified that there is a treatment gap in provision of care for mothers and their young children with schistosomiasis. Could FHI360 help with the distribution of praziquantel and albendazole as an additional level of care provided to their patients in high endemic areas? I hope so.

There is a real knowledge gap here and we need to better measure the clinical burden of disease as elaborated in the Female Genital Schistosomiasis conference last month, and ensure treatment for all infected. COUNTDOWN is in a really unique position to develop a West Africa research theme to reprioritise urogenital schistosomiasis. Hopefully this will have effects on gender, marginalisation and stigmatisation all in one go. Isn’t that something we should be excited about achieving?

Another busy month

This coming month of March is going to be busier than ever for COUNTDOWN. Rachael and Sally have now recruited two new staff for social science themes (who I hope to convince about FGS!), and from the 9th March we have our inception planning workshop for Cameroon, Ghana and Liberia. With Rachael, Susie has been busy securing travel and local arrangements to look after our guests and colleagues.

COUNTDOWN will launch on the 12th March within the LSTM. I am especially delighted that Ifeoma will join us by video-link that day as a further step to develop activities in Nigeria. To close, we have a lot to look forward to and thank colleagues, especially Pauline, for making the necessary arrangements for this trip to Abuja to happen.