Science Communication in a changing technological landscape: COUNTDOWN at the ISNTD Festival

By Pamela Bongkiyung

Science communication has been garnering attention of recent and in a very positive way. There is a renewed focus on communicating its intricacies and complexities to a non-specialist audience so that society remains informed. It is against this backdrop that the International Society for Neglected Tropical Diseases (ISNTD) organised this festival bringing together organisations from the creative arts and global health communities to explore various ways to enable transformative change in discussing neglected tropical diseases (NTDs). Imran Khan, the Head of Public Engagement at the Wellcome Trust kickstarted the event with the connection of science and society , raising a clarion call to communicate research with emotion, given that how people think and feel is just as important as what they know.

Improving engagement with patients or research end-users’ by keeping them at the heart of creativity was a theme illustrated through the works of McCann Global Health, who use commercials to drive demand for health; using corporate & social language, narratives and family stories to communicate strong public health messages. For some, using virtual observations to ensure medication adherence for successful treatment results is becoming the norm for patients as shown by the Behavioural Insights Team.

The importance of providing context to information was presented by the Institute of Development Studies who created a platform during the Ebola outbreak in Sierra Leone and Liberia in 2013/2014 to inject context in discussions relating to the situation. The group brought together anthropologists who looked at concerns through the local prism and not from reports published by the international media which most times was not reflective of concerns by locals on the ground. Important of all, was the realisation of the necessity to build data that can create a link between the grassroots and policymakers, advocated by Margaret Olele of the American Business Council. How can you translate the nuances of culture to connect the people, Margaret asked?

But challenges do exist in communicating about global health. We should be maximising all available media platforms to amplify messages, advocated Alan Tennenberg, Chief Medical officer at Johnson & Johnson. The company is becoming a partner of choice to head soil-transmitted–helminths elimination campaigns and they work with multiple partners across sectors to realise their strategies and desired impact.

IBM through their corporate social responsibility programme is using their in-house design thinking to bridge communication gaps. It encourages observing, reflecting and repetition ensuring that community stays at the heart of science. This message was echoed by The Mentor Initiative who are first responders when disasters strike and stay on long after other NGOs have left; to build capacity through engaged communication of the science using various methods.

It was great to learn that the Japan Global Health Innovative Technology (GHIT) is taking great strides to join the NTDs world in an innovation and drug research capacity, with an awareness of what is culturally appropriate for the various places they work in. Claude Oeuvray from The Merck Global Institute was right when he said: ‘when you think global, you have to think of emerging diseases.’

The workshops that followed centred rightly on taking the science to the people with highlights on the tools and production strategies available. Key messages revolved around creativity in communicating science and public health messages to communities. How to use data for social good came up constantly be it in video story-telling or in how to collect data for easy synthesis.

One of the key workshops was on ‘Writing for Impact’ which was led by Zoe Mullan, the Editor of The Lancet Global Health. Participants of this session had some major takeaways on key things to note when moving from research to publication. Some are highlighted below:

  • The mantra in research publication is REWARD which is an acronym for ‘Reduce Research Waste and Reward Diligence)
  • Use the Strobe Checklist for observational studies
  • Research should tell a story and their titles should be informative and concise
  • Abstracts are very important as they are the first thing that editors read. State the aim of the research prominently by responding to the question: why am I doing this work?

You can find more tips here.

Looking at the road ahead and embedding lessons learned, Lisa Russell who is a film director advocated the need to change the narrative of global health and make story-telling responsible, not just about soundbites, as there are people behind the stories who appreciate their stories not defining what they become in the future. COUNTDOWN’s approach to dismantling big scientific concepts in a changing communication science landscape was presented by myself. It provided an insight on balancing our act whilst communicating science to inform, educate and empower the communities in which we work and ourselves. It called for science communication to move beyond passive communication of messages but push for a more transformative outcome in the lives of those these messages touched.

Many attending the festival admitted to being struck by a new thought as the day progressed. Jamie Guth from Global Health Connections was right when she emphasised the post-truth era in global health. She advocated for science communications moving beyond evidence as evidence remains only one component of persuasion. She called on all to consider using Aristotle’s art of persuasion which incorporates ‘logos, ethos and pathos’.

To understand the changing demands on science communications professionals further, you can read this report from a recently attended workshop organised by STEMPRA.

Share your experiences working in this sector in the comment section and join us on social media for further interactions.

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How do STH control programmes move forward? By balancing guidelines and recommendations for future proofing on-the-ground experiences!

By Professor Russell Stothard

The week before last the Strategic and Technical Advisory Group (STAG) at WHO-Geneva convened to discuss the performance of Neglected Tropical Diseases (NTDs) control programmes and plan for WHO 2020 and SDG 2030 targets. Within the NTDs, important helminth diseases include the soil-transmitted helminthiases (STHs), a diverse group of species of gastrointestinal nematodes. Many of these worms are found across the world, and sometimes transmission cycles can be zoonotic. For example, the giant roundworm Ascaris is ubiquitous across the world, especially where WASH (water, sanitation & hygiene) is inadequate and food safety poor. Lesser known perhaps is that worms are still endemic in the UK and historically infected our 15th Century King, Richard II.  Adult Ascaris worms again recently captured international media attention being found within  the North Korean soldier and defector. This indicated his inadequate access to deworming medications which in other parts of the world is more equitable and can be received through primary health services and/or preventive chemotherapy (PC) campaigns. The origins of PC can be traced back over 100 years, beginning in the USA with actions on hookworms, while today supporting the scale-up of PC for STH with appropriate integration of broader actions on NTDs is an imperative of COUNTDOWN.

On the 29th September 2017, the WHO published a new guideline on the implementation of PC programmes for STH seeking to update those guidelines gone before. While this new guideline has much merit, it inadvertently recreates disease-specific silos and overlooked the need for integration of STH within NTD control in general. This spurred me to write a commentary with colleagues that was published in April’s PLoS NTDs in an attempt to open a broader debate on needs for integration. The guideline’s infirm stance on health equity does little to provide programmatic guidance on practical issues for those implementing control. For example, what is the best method to reach those most vulnerable to STH with which drug delivery system – how much are we prepared to cost? We were happy that our article generated a response pointing towards the valuable role the research community has to offer and raised our awareness of two new forthcoming treatises on the impact of deworming by Serene Joseph et al. in press within PLoS NTDs.

To regress poverty and impoverishment, there is no single ingredient (e.g. guideline) or recipe (e.g. recommendations) but rather a careful consideration on how the future world might judge us if our actions on worm control were curtailed or even stalled. We advise that STH control programme managers should value all evidence and balance this with their own experiences on-the-ground to better guide them.

COUNTDOWN’s Research and Stakeholder Engagement Approach: Reflections from an Interactive Panel

By Professor Sally Theobald, Professor Margaret Gyapong and Dr Theresa Hoke

COUNTDOWN recently held its Annual Partners Meeting from 19th – 21st March 2018. Partners who make up the research consortium came from Cameroon, Ghana, Liberia, Nigeria, the UK and the USA congregated at the Liverpool School Of Tropical Medicine. As part of this meeting, a lively panel on stakeholder engagement and policy influence was led by the Ghana Social Science lead – Prof Margaret Gyapong. Panellists included programme managers (Dr Benjamin Marfo, Neglected Tropical Diseases [NTDs] Programme Manager from GHS, Ghana); social scientists (Kim Ozano from LSTM); health economists (Fred Sosu from UL-PIRE in Liberia); parasitologists (Dr Mike Osei-Atweneboana from the Council for Scientific and Industrial Research in Ghana), Prof Samuel Wanji from the University of Buea in Cameroon and Theresa Hoke from FHI 360 in the USA.

Here’s what we learned:

(1) To build inclusive partnerships and sustain action, stakeholder engagement means going beyond the usual suspects, for example:

a) When developing alliances with the health sector, we need to work at all levels and think about opportunities to maximise leverage. Dr Benjamin Marfo has been developing links with the Ghanaian parliamentary sub-committee on health to enhance political commitment to NTDs. He has also worked with training institutions and alliances of doctors and health care workers to make sure Female Genital Schistosomiasis is put on and stays on the agenda.

b) Given NTDs are shaped by the social determinants of health, there is a need to build multi-sectoral partnerships. In Liberia, the NTD Ambassador Dr Evelyn Kandakai used to be the Minister of Education and is well placed to support these linkages. Work from COUNTDOWN Nigeria also shows how links with education are important and that these need to be fostered at all levels including with parent-teacher associations who are critical partners for smooth delivery of MDA within schools.

c) The use of participatory methods is powerful. For example, use of transect walks – which include a walk through a community to better understand how information is shared and networks happen–has brought about new ideas for community engagement in rural Nigeria. One novel example was working with motorbike drivers. In all communities; community drug distributors (CDDs), chiefs, religious leaders have been part and parcel of agenda-setting and the research process.

d) Media partnerships remain critical. Supporting ‘embedding’ of journalists in the realities of the NTD programmes as exemplified in training organised by partners in Cameroon – and the experiences and challenges of CDDs and affected communities–has produced an engaged and passionate group of journalists who can “make noise”.

Partnership and active engagement across the research cycle (and not classic passive dissemination at the end of a process) support ownership and relevance of research. Trust and relationships are essential for heightening the likelihood that research evidence gets applied. So is being creative, developing and sharing a range of research products (think beyond the academic paper here!)

(2) To be impactful, implementation research should:

a) Respond to obstacles NTD programmes are facing: Why are people not taking drugs? Why do hot spots still exist and what are the best strategies to address these? How can we best develop and implement alternative strategies?

b) Dialogue with NTD programmes and other stakeholders—including some unconventional partners –on key emerging issues from research and how best to address them. For example, the gender of the CDDs can shape the extent to which they can access/not access individuals within households in Nigeria; men are more likely to be missed in MDA campaigns in rural Ghana and are also less likely to adhere to drug regimens

c) Have impact, and the panel identified different examples here:

i) Research findings from the COUNTDOWN situational analysis were used to inform the development of Liberia’s first ever-NTD health promotion strategy.

ii) The participatory action research process in Nigeria has built the capacity of the Federal ministry of health and will directly feed into and shape the next round of MDA so that it better responds to community and front-line health worker realities and constraints.

iii) Successful research testing interventions that bridge programs that don’t normally work together has laid groundwork for co-implementation of programmes for example joint planning and distribution of bed nets between the NTD and malaria programmes in Ghana.

When asked if there was a chance that the research results from COUNTDOWN will be taken up and used, the answer was a resounding yes! Thoughtful, active engagement with stakeholders will help to stimulate an appetite for evidence-based innovations and will strengthen trusting partnerships for research impact.

 

COUNTDOWN at the Royal College of Pathologists: Emerging and Neglected Tropical Infections

By Professor Russell Stothard

A dear departed colleague of mine from the London School of Hygiene & Tropical Medicine (LSHTM), Dr David Ellis, often used to tell me his favourite medical joke – 

“What’s the difference between a physician, a surgeon and a pathologist? The physician knows everything and does nothing. The surgeon knows nothing and does everything. The pathologist knows everything, but always a week too late”.

David died in 2012 aged 90 but throughout his varied career, he was a proud member of the Royal College of Pathologists.

In life, David had many colourful stories and as a young man he worked with the eminent pathologist Howard Florey during the first trials of Penicillin in Oxford during WW2. He danced ballet with Marlene Dietrich in the opening scene of Hitchock’s Stage Fright in 1950 (but that’s another story), and whilst in charge of LSHTM’S Electron Microscope Unit from 1975 made many important discoveries. David was one of the very first to characterise Ebola virus, a pathogen that many of us in COUNTDOWN now know well and was regularly seconded to Porton Down to provide biosecurity advice to the UK Forces.

With this in mind, I was very honoured to be invited to present at the Royal College of Pathologists on their emerging and neglected tropical infection day. The meeting echoed many of David’s interests, from use of antibiotics to emerging viral diseases, and I was delighted to present our recent COUNTDOWN research.

The first talk by Dr Colin Brown (Public Health England), introduced key topics in the practice of medical bacteriology in the UK: epidemiology of Mycobacterium chimaera associated with open heart surgery, the UK-rise of scarlet fevers with group A Streptococci, outbreak vaccination strategies for pertussis control and emerging antimicrobial resistance in general. Taking a more international perspective, emerging viral diseases were discussed by Professor Daniel Bausch (LSHTM), who now heads the UK Public Health Rapid Support Team, as he recounted his experiences in West Africa, providing support during the recent Ebola Virus Disease outbreak. As many of us know, this was supported by UK-AID and many staff from both UK Schools of Tropical Medicine. The theme was also expanded on by Lieutenant-Colonel Emma Hutley (Royal Army Medical Corps), who helped oversee setting up diagnostic laboratories in Sierra Leone. These provided essential services for patient blood screening, transfusion needs and pathogen detection illustrating the cornerstone role of effective pathology services in real time needs. The latter was especially important to confirm or exclude viral infection.

A later talk by Professor Mathew Fisher (Imperial College London), shed new light on the current problems of antifungal management and treatment of fungal disease either found in the blast wounds of servicemen from soil-contaminated shrapnel or in the lungs and bodies of those with opportunistic infections in London. Mat highlighted his airborne sampling apparatus for fungal spores sited on St Mary’s rooftop, a few floors above Sir Alexander Fleming’s laboratory where he first discovered mould juice to have antibacterial properties, although it was Florey et al. who pioneered its clinical implementation.     

A key but often an under-appreciated part of pathology is study of medical parasites, especially those in the tropics. In contrast to the acute nature of either bacterial or viral infections; medical parasites on the other hand are often chronic, difficult to control and inflict disease in tens of millions. I presented on recent work within COUNTDOWN and highlighted the importance of female genital schistosomiasis (FGS). A quick show of hands of revealed only 3 of the audience had heard of the condition, but one reported she had seen it several times in the UK upon referral from perplexed surgeons who had encountered suspicious cancer-like masses in the Fallopian tubes and uteri of their patients undergoing surgery, which later turned out to be schistosomiasis granulomata (neoplastic masses around trapped schistosome eggs).

The discussions, reminded me of David’s joke, so I made extra effort to feature our work in of FGS in Ghana, Cameroon  and the importance of the international workshop we organised in South Africa three years ago. All of which is starting to raise more awareness, hopefully outside of pathology to FGS; and allow NTD programmes to change tactics through more enlightened discussions and better align themselves with key sustainable development goals, leave no one behind.

Making change happen does not come quickly and there is no short route to rapid policy change but a quick review of our recent activities in Ghana reveal there is much to be hopeful for. Furthermore, this year at our annual partners meeting in Liverpool I hope to see our carefully nurtured seedlings of COUNTDOWN research start to flower, to bear fruit and to nurture lasting policy change with more equitable NTD interventions.     

Don’t be alone, don’t be afraid: Partnerships fostered between the NTD Programme and Communities in Liberia

by Karsor Kollie, Laura Dean, Anna Wickenden and Sally Theobald

This was an exciting and historic event to celebrate World Leprosy Day.  It was the first-time that people affected by these diseases came together to increase awareness of the integrated approach to morbidity management and launch the LF/Onchocerciasis MDA programme in Liberia. This created an important space for patients to meet many others for the first time, and further strengthen these exchanges with each other will have impact on many levels.

Patients in Attendance

Ma Grace, Pa Abraham and Pastor Joseph stood strong to tell their testimonies of life with either Lymphatic filariasis (big foot) or leprosy in Maryland County, Liberia. Their inspiring journeys of overcoming challenges and being part of community life meant that they were important advocates for the NTD programme, bringing much needed visibility and inclusion of people affected. Their key educational messages to their peers – others from Maryland with lymphoedema or leprosy, school children and community health volunteers and community health workers were:

  1. Don’t be alone, don’t be afraid, speak to others;
  2. Visit the health centre and
  3. Take your drugs.

Zero disability

Community health volunteers and community health workers play a critical interface role in NTD and other health programmes, linking communities and health systems. One community health support supervisor, shared her experiences of contributing to “Ending the Neglect and Stigma: to achieve zero disabilities in girls and boys affected by NTDs” (the theme of the day’s event). They also explained how they provide psychosocial and medication support. This important cadre of “foot soldiers” was appropriately celebrated. They also demonstrated how to measure clients and distribute medicine.

Karsor Kollie, director of the NTD programme and COUNTDOWN country manager, provided awareness and education on the different focus NTDs such as Buruli ulcer (everlasting sore), lymphatic filariasis (big foot/big water bag), Leprosy and Onchocerciasis. He broke down complex concepts into clear digestible chunks and the audience were really engaged. We also heard from Dr Evelyn Kandakai, ambassador for the NTD programme and former Minister of Education in Liberia. She began by thanking the audience for maintaining peace in the recent elections. She then had three key messages 1. Be a friend to people affected by NTDs, 2. Cooperate with programme work and 3. Make Liberia environmentally friendly. She asked the audience to “put their arms around the Ministry of Health and Karsor Kollie”.

Dr. David Ross, CEO – Task Force on Global health, launched the CNTD-supported, DFID-funded, Mass Drug Administration against Lymphatic Filariasis/Onchocerciasis in Maryland County. This included several participants including the NTD Director, former Deputy Chief Medical Officer (DCMO) and Director of Community Health taking part. They were measured using the height pole, given the appropriate number of pills, and swallowed the mectizan and albendazole to demonstrate that the medicines are safe, and everyone can safely take them.

Reflecting on the day, it was great to see partnerships celebrated at different levels of health systems. The emphasis on the critical role of patients, communities and Community Health Volunteers (CHVs) and the importance of their ownership and agency was refreshing and important. Strengthening these partnerships will be critical in meeting the challenges ahead.

Swiss TPH Winter Symposium 2107: Helminth infection – from transmission to control

By Professor Russell Stothard

Unlike the UK where there are two schools dedicated to tropical medicine, there is only one in Switzerland and located in Basel. The Swiss Tropical and Public Health Institute (Swiss TPH) is affiliated with the local university and has over 800 people from more than 70 nations working on infectious and non-communicable diseases. Internationally, the Swiss TPH has a large global foot print which has grown since its foundation in 1943.

Like the Liverpool and London Schools, the Swiss TPH has a fascinating history. Its first director – Rudolph Geigy, is widely recognised as a true pioneer of the control of vector-borne diseases. Today the institute still oversees two field stations in Côte d’Ivoire and Tanzania, originally founded as the Centre Suisse de Recherches Scientifiques (CSRS) in Adiopodoumé and the Swiss Tropical Institute Field Laboratory (STIFL) in Ifakara. The institute actively supports many interventions globally that assuage disease in low and middle-income countries.

To highlight the best of current research and control activities, each year the Swiss TPH organises a winter symposium on a topic of international interest. This year the 2-day meeting’s theme was dedicated to medical helminthology; a lot of ground was covered within a packed programme. Much of it featured implementation research that fostered interdisciplinary studies and as such, I was honoured to represent COUNTDOWN. I highlighted our research across those neglected tropical diseases amenable to preventive chemotherapy and during my keynote presentation. I discussed some of our most recent publications on gender, blogs and presentations on soil-transmitted helminthiasis and schistosomiasis as well as the growing importance of science communications in general.

With today’s changing lifestyles and needs to process information, it is critical to demonstrate how modern media tools can showcase and raise awareness of research uptake. This can be viewed as exploring a combination of new distribution channels alongside older ones that embed implementation research into adaptive health system programming and policy change. For example, I was able highlight our recent paper on WASH which was particularly opportune for our co-author Yael Vellerman was in attendance. I chaired the session where Yael presented her recent activities in WHO, whilst currently seconded from Water Aid, she discussed issues pertaining to scale-up of WASH-related interventions. I illustrated our collaborative steps, starting with platform discussions at COR-NTD, in revealing research and policy gaps. This gave better context to the need for cross-sector collaboration in development of appropriate indicators for surveillance of health and environmental change. More generally, an overview report of this meeting is featured within the Swiss TPH website likely with more detailed outputs to follow as several papers presented will later result in peer-reviewed manuscripts.

While there were many powerful examples of cross-talk and complementation of methods in implementation research, I want to highlight a few. Exciting new methods to measure children’s physical fitness and physio-social needs before and after de-worming were presented by Professor Markus Gerber; better clinical management of liver cancers alongside eco-health approaches in the environment to curtail transmission of opisthorchiasis were excellently illustrated by Professor Banchop Sripa.

From my perspective, I found this meeting a very fertile field to sow the seeds of research uptake and future collaboration which is needed to advance towards WHO 2020 targets and 2030 Sustainable Development Goals.

 

Mind the Gap: Lessons from over two decades in Gender Mainstreaming on NTDs

by Professor Sally Theobald, Pamela Bongkiyung & Laura Dean

Gender matters in the world of Neglected Tropical Diseases (NTDs). What is gender? The World Health Organisation (WHO) defines gender as ‘socially constructed roles, behaviours, activities and attributes that a given society considers appropriate for men and women, and people of other genders.’

Following the meeting ‘Women and Girls in Focus: Ensuring NTD Programmes Achieve Gender Equality and Empower Women and Girls’ in July 2016, a group of experts and researchers from programme, donor, policy, educational institutions came together to discuss how to further the gender mainstreaming agenda within NTDs.

Because of this meeting, a paper just published in the British Medical Journal of Global Health entitled ‘20yrs of Gender Mainstreaming in Health: Lessons and Reflections for the Neglected Tropical Diseases Community’, was conceptualised. In the paper, the authors extrapolate lessons on gender mainstreaming from the past two decades; showing how addressing gender inequities can strengthen NTD programmes.

The first lesson that can help researchers, policy makers, practitioners to address gender power relations most relevant to their work is tailoring the gender framework to help make the focus on gender explicit. The authors provide an example of how gender frameworks could support the delivery of MDA.

Given that gender does not operate in isolation, the second lesson is taking on the challenge of intersectionality. Privilege, power and inequity which could be due to age, nationality, ethnicity, religion, sexuality, disability and socio-economic are the multiple axes through which gender is experienced. Some of these factors play a role in enabling or preventing access to MDA. Due to stigma and lack of perceived need, affected people stay hidden within their communities. Access is further limited or non-existent for people with disabilities.

Community drug distributors (CDDs) who are the backbone of NTD programmes. Who gets chosen as a CDD is shaped by gender power and participation; and is our third lesson. CDDs are selected by their communities as trustworthy people. The selection process appears equitable on paper but can have the unintended consequence of reinforcing gender and social hierarchies within communities.

The fourth lesson is the need to unpack gender and power dynamics at household level as this impacts delivery of NTD programmes. CDDs are embedded within the communities and possess a strategic understanding of the social and cultural norms, they are in a good position to be agents of social change for health outcomes.

The final lesson from the paper focuses on bringing a critical gender lens to data always. The authors emphasise that care be taken in how data is disaggregated, avoiding the pitfall of making certain groups invisible especially those who face multiple challenges in accessing care and treatment.

During the International Federation of Anti-Leprosy Associations meeting on 18th October 2017, some of the authors of the paper (Prof Sally Theobald & Ms Laura Dean) from the COUNTDOWN programme at Liverpool School of Tropical Medicine; delivered a keynote on gender mainstreaming as could be applicable to the leprosy programmes. They used this engagement platform to share insights on the importance of gender to the health system, given that the latter is not gender neutral and plays a key role socially in how health needs, outcomes and experiences are achieved and met. Here is the Storify of the social media interactions of the keynote.

COUNTDOWN worked with the WHO in trialling a Gender, Equity & Rights (GER) tools in Northern Nigeria with our partners Sightsavers, based in Kaduna. A presentation on the findings of this process was delivered at the WHO headquarters in February, 2017 and was well-received. It is helping to guide and inform WHO’s policy in incorporating gender into various programmes.

To read more on COUNTDOWN’s engagement on issues related to gender, equity and rights, read the below:

HOW CAN WE MAKE UNIVERSAL HEALTH COVERAGE TRULY UNIVERSAL? EQUITY, GENDER, DISABILITY, AND NTDS by Prof Russell Stothard & Kate Hawkins.

Share your experiences working in this sector in the comment section and join us on social media for further interactions.

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http://countdowncameroon.org/

Impact of NTDs: Beyond the Patients

by Maureen Ayuk Tembei, Sally Theobald, Russell Stothard & Samuel Wanji

The burden of neglected tropical diseases is mainly discussed from a patient-centric perspective, however, there is a wider impact where these diseases touch the lives of those providing care and support. In this blog, we explore and expand upon broader issues of the Neglected Tropical Diseases (NTDs) burden and care drawing from experiences of work in Cameroon and the international literature.

  1. Catastrophic health expenditure for NTDs at household level

NTDs such as onchocerciasis and lymphatic filariasis (LF) lead to low economic productivity, catastrophic health expenditures, low quality of life, social stigma and isolation of affected persons and their households’ due to disabilities related to these diseases. The physical challenges associated with these conditions contribute to large productivity losses as most patients are of working age. The economic cost of managing the disability associated with these diseases are overwhelming and compounded by productivity losses (both paid and unpaid work). Household members suffer from financial losses trying to treat household members affected both directly and indirectly. Direct cost of treating these diseases (medical and non-medical costs) added to the productivity losses (economic, domestic and academic, e.g. dropping out of school leading to loss of knowledge) at household level for both patients and caretakers can be devastating.

Maureen Blog on Beyond Patients 1
Children dropping out of school to take care of affected family members.  Photo Credit: Carter Center.

 

So far, the impact of NTDs have been focused on patients, ignoring the significant impact these diseases have beyond patients to their family members. These diseases interfere with household consumption of economic and domestic (household chores and leisure) activities thereby reducing their ability to attain good health (WHO, 2009). Households of affected persons may reduce their consumption by liquidating household savings or assets thus, diminishing their opportunities to generate financial and physical capital. These household health expenses at times go beyond World Bank recommendation for catastrophic health expenditure being 10% of household income. This was evident in a leprosy economic study in India rising by up to 40% of household income (Chandler et al. 2015).

Maureen Blog on Beyond Patients 2

Buruli Ulcer  Photo Credit: Dr S Etuaful, Ghana

A study on the household cost management of another debilitating NTD; buruli ulcer at Akonolinga in Cameroon demonstrated a direct cost of €59.3 constituting 25% of household annual earnings for treatment of the disease while indirect productivity cost for both patients and family members was €64.4 (Koen et al. 2008). Also, Koen et al. reported that 63% of households cease to provide social and financial support for patients as a coping strategy.

Maureen Blog on Beyond Patients 3

Podoconiosis (Non-filarial elephantiasis) Photo Credit: Maureen Tembei

An economic study in Ethiopia on podoconiosis, an NTD with disability comparable to that of LF revealed direct treatment costs being equivalent to US$143 per patient per year excluding productivity losses and family impact. Studies in Cameroon on the household economic cost of podoconiosis (Tembei et al. 2018), revealed US$142 of household income being consumed annually for direct treatment of the disease constituting 40% health expenditure. Most NTDs are likely to impose catastrophic health expenses at household level.

2) Social Aspects of NTDs

Added to the economic burden, NTDs affect quality of life of affected households socially by reducing productivity, marginalization and causing stigma (Mousley et al. 2013) for both patients and their family members. Results from studies in Cameroon demonstrated almost equivalently low levels of quality of life and high levels of stigma, among podoconiosis and leprosy patients (Tembei et al. 2018).

Maureen Blog on Beyond Patients 4

Leprosy (Hansen’s Disease)  Photo Credit: Maureen Tembei

Social consequences are not only limited to isolation and exclusion from community events but also include; difficulties in finding employment, gaining education and getting married. Overcoming these consequences are vital activities for both social and economic well-being (Tora et al. 2014). Neglected Tropical Diseases are also quite stigmatizing in endemic areas and experiences are shaped by gender roles and relations (Desta et al. 2003; Kloss et al. 1997) and generation (Davey et al. 2007) in different ways both for patients and their family members. Some degree of stigma towards leprosy and podoconiosis affected households was observed in Cameroon (Tembei et al. 2018), implying that perceptions towards stigma related to NTDs are not limited to the patients but can also have repercussions for family members and caretakers within the household. This thwarts efforts to effectively treat and prevent NTDs as it negatively impacts health seeking behaviour of patients and act as a barrier to appropriate care from health workers and their local healers.

 

3) Sustainable Development Goals 2030: Leaving no one behind

Talking about “Leaving no one behind” means everyone should have the right to direct access to healthcare opportunities expressed in the SDGs. Narrowing down to NTD perspective, COUNTDOWN has within its portfolio, four (4) key NTDs with high prevalence and amenable to preventive chemotherapy in sub-Saharan Africa namely onchocerciasis, lymphatic filariasis, schistosomiasis and soil-transmitted helminthiasis. Among these NTDs, onchocerciasis and lymphatic filariasis have debilitating disabilities with devastating social and economic burdens not limited to the patients but extending to family members. Less well-known are the consequences of urogenital schistosomiasis, especially in women where the disease may cause infertility and sub-fertility taking away some of their more important choices in life.

Maureen Blog on Beyond Patients 5

Figure 1: A wider impact of NTDs: Economic and social impacts of NTDs extending beyond patients to family members within the household.

COUNTDOWN as a multi-disciplinary research consortium is devoted to bringing forth research-based evidence on the economic and social burdens of these NTDs to inform and influence health policy. Therefore, we are saying that as a commitment to meeting the 2030 SDGs of leaving no one behind, health strategies targeting control and elimination of NTDs should not be limited to the patients only but, should consider extending to all those affected directly or indirectly by these diseases at the household and community level.

4) Way Forward

Beyond the scope of COUNTDOWN (improved access to public health interventions for these NTDs including prevention), morbidity management and disability prevention centres are likely to result in economic returns to affected families. Another approach to this would be through subsidized health insurance for these economically vulnerable households. Affected households may benefit from such schemes so they are better financially protected. Moreover, rehabilitation and economic empowerment through skilled and unskilled labour for the disabled patients might serve as an economic relief to their family members while socially integrating them gradually into their community and society.

 

 

It is Global Handwashing Day! What does this mean for Neglected Tropical Diseases?

by Pamela Bongkiyung, Prof Russell Stothard, Prof Louis-Albert Tchuem Tchuente

Today Sunday, October 15th, we celebrate Global Handwashing Day, a day dedicated to global advocacy on increasing awareness and understanding on washing hands with soap, thereby preventing several communicable diseases. This awareness it is hoped will increase participation and save lives from preventable diseases.

Since the campaign launched in 2008, it has garnered enough support to be celebrated in over 100 countries with over 100 million people participating each year. The Global Handwashing Day aims to:

  • Foster and support a global and local culture of handwashing with soap
  • Shine a spotlight on the state of handwashing around the world
  • Raise awareness about the benefits of handwashing with soap

According to a 2014 UNICEF report on Levels & Trends in Child Mortality, diarrhoea accounts for 9 per cent of leading causes of death among children under five. Each day, nearly 1,000 children die due to preventable water and sanitation-related diarrhoeal diseases. Diarrhoea is easily transmitted where poor hygiene and sanitation are rife. Pneumonia, diarrhoea and malaria accounted for 1.3 million of under-five deaths in sub-Saharan Africa and roughly half a million in Southern Asia in 2014. Accelerating the reduction in under-five mortality rates is possible through expanding preventive and remedial interventions.

As far back as 2010, UNICEF developed an advocacy pack to inform and support planning of activities to raise the profile of WASH (Water, sanitation and hygiene) in schools around the world. This pack was created as part of its campaign ‘Raising Clean Hands: Call to Action for WASH in Schools’.

But what has all this got to do with Neglected Tropical Diseases(NTDs)? For those in the NTD world, this day is of great significance as handwashing is a good habit to develop for a sustainable and long-term control on preventing infection or re-infection with diseases such as soil-transmitted helminthiasis (STH). According to the World Health Organisation (WHO), around 1.5 billion people are infected with STH worldwide. STH are caused by infection with the roundworm (Ascaris lumbricoides), whipworm (Trichuris trichiura) and hookworms (Ancylostoma duodenale or Necator americanus). They are among the commonest infections especially those living in poverty.

These STH diseases thrive in warm, tropical environments, where sanitation is inadequate. Parasite eggs and larvae are excreted in the faeces of infected individuals which contaminate the environment, particularly the soil. People are infected through ingestion of roundworm or whipworm eggs on contaminated foods or by direct skin penetration of hookworm larvae from the ground.

When individual children harbour large numbers of these worms it can lead to bowel obstruction and iron deficiency anaemia which, over time leads to malnutrition and growth impairment.

Improving hand hygiene before eating and safe disposal of faecal material is important. The 6th goal of the Sustainable Development Goals (SDGs) which continues the legacy of the Millennium Development Goals (MDGs) states: ‘ensure clean water and sanitation for all’. WHO estimates at least 1.8 billion people around the world use a source of drinking water that is contaminated by faeces. With 2.4 billion having limited to no access to basic sanitation services such as toilets or latrines, we can see how lasting control of STH is a challenge.

SDG Banner - Health in the Global Era

Reason why handwashing and WASH in general are crucial to the elimination of NTDs. The latest Guideline: preventive Chemotherapy to control soil-transmitted helminth infections in at-risk population groups published by WHO last month, emphasises long-term solutions to STH require improvements in water, sanitation and hygiene. The Fourth WHO Report on Neglected Tropical Diseases titled ‘Integrating Neglected Tropical Diseases into Global Health and Development‘, indicates that providing safe water, sanitation and hygiene is critical for preventing and providing care for most NTDs but tends to be neglected relative to its importance. The report warns that without concerted effort to improve access to safe WASH, diseases will return to higher prevalence levels.

The COUNTDOWN programme which is multidisciplinary in its make-up has tackled this issue by participating in discussions with intersectoral partners to engage in knowledge-brokering and taking a collaborative approach to knowledge share in the process. In the current health environment where capacities are distributed, coming together to seek solutions to universal problems such as these, is paramount. The COUNTDOWN team has recently published a paper in Trends in Parasitology entitled “Tailoring water, sanitation and hygiene (WASH) targets for soil-transmitted helminthiasis and schistosomiasis control.

You can read more from COUNTDOWN relating to STH here.

How can you participate in the global handwashing movement? Choose from this Lazy Person’s Guide to Saving the World or share with us your experiences working in this sector in the comment section and join us on social media for further interactions.

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Partner Website: http://countdowncameroon.org/

 

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!

To find out more about our research visit our partner website: http://countdowncameroon.org/

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