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!

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