Ensuring Onchocerciasis Control is more than just “Skin Deep” by Ending the Neglect of Onchodermatitis

Louise Hamill, Michele Murdoch, Mathias Esum, Jerome Fru, Samuel Teghen, Ernestine Wasso, Anicetus Suireng, Peter Enyong, Mark Taylor, Joseph Turner, Samuel Wanji

The COUNTDOWN team in Buea, Cameroon, are working hard to ensure that the assessment of skin disease caused by onchocerciasis is firmly embedded within the alternative onchocerciasis control strategies they are developing. The work, led by Professor Samuel Wanji, Dr Joe Turner and Professor Mark Taylor, aims to implement these alternative strategies for the control and elimination of  river blindness (onchocerciasis) in South West Cameroon. Onchocerciasis control in South West Cameroon has been sub-optimal using conventional approaches (Wanji et al., 2015), and so new, alternative strategies are urgently needed.

Onchocerciasis is a parasitic disease, caused by worms which are transmitted by the bite of infected blackflies. Untreated, onchocerciasis leads to progressive visual impairment and eventually irreversible blindness, as well as severe itching and a range of serious skin complaints, collectively known as onchodermatitis. Efforts to control this debilitating disease have used several different approaches over the past five decades.

Previous Approaches to Onchocerciasis Control

Early onchocerciasis research concentrated on blindness, and the first large-scale control programme, the Onchocerciasis Control Programme (OCP, 1974 -2002) successfully targeted the blackfly vectors in 11 West African countries with known high rates of onchocercal blindness. However this meant that, compared to blindness, there was comparatively less data available about the incidence, severity and geographic distribution of onchodermatitis. In an attempt to address this, a study was conducted across seven different rainforest sites in five African countries, all with known low rates of onchocercal blindness. The study revealed that 28% of the population aged 5 years and above had one or more forms of onchodermatitis (Murdoch et al. 2002). This work was pivotal in the decision to establish onchocerciasis control programmes in similar communities; those with a significant burden of onchodermatitis but which had previously received low attention because of low prevalence of onchocercal blindness. The African Programme for Onchocerciasis Control (APOC) was launched in 1995, and used community-directed treatment with ivermectin in 16 countries with predominantly onchocercal skin disease. Updated estimates of the health impact of APOC show that, because of the very large number of people with onchodermatitis, skin disease was, and is, more important in contributing to the overall burden of onchocerciasis than eye disease (Coffeng et al 2014). Therefore, skin disease must be central in any approach to the control of onchocerciasis going forward.

Alternative Approaches to Onchocerciasis Control in Cameroon

The main alternative control strategy that will be implemented in South West Cameroon is test and treat with doxycycline. A smaller sub-study will look at the effect of combining doxycycline with localised vector suppression. Previous work has shown doxycycline is highly effective against onchocerciasis (Turner et al., 2010). To monitor the effectiveness of these approaches, parasitological, dermatological, health economic and social science data will be gathered. Due to the lack of data around onchodermatitis generally, and particularly data on the response of onchodermatitis to doxycycline, the team identified collection of additional data on the presence of onchodermatitis as a priority.

Strengthening Onchodermatitis Detection Capacity

With this in mind, COUNTDOWN arranged a training visit from consultant dermatologist and leading expert on onchocercal skin disease; Dr Michele Murdoch. Professor Wanji and Dr Murdoch led a week long intensive programme of classroom teaching and clinical training for nurses from endemic areas, to enable them to better recognise signs of onchodermatitis.

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Dr Murdoch and some of the team who participated in the week-long training workshop

During the taught component of the workshop, the team learnt about the morphology and terminology of skin lesions, the clinical classification of onchodermatitis, and other common skin complaints. The collection of data on itching was explained and practiced through role play. In addition, there was opportunity for the team to practice form-filling for clinical signs using clinical slides of cases.

Although the severity of symptoms varies from person to person, onchodermatitis is classified into five main categories. Dr Murdoch taught the team how to recognize the characteristics of these five categories. Briefly, they are:

  • Acute papular onchodermatitis: itchy papules (small bumps) are present on the skin and some swelling, is also possible. These itchy papules can cover large areas of the body.
  • Chronic Papular Onchodermatitis: itchy papules which are larger than acute papular onchodermatitis, often around the waist and hips. Hyperpigmentation, whereby the skin takes on a much darker colour, may also occur.
  • Lichenified Onchodermatitis: hyperpigmented skin plaques, accompanied by intense itching
  • Atrophy: similar to premature aging of the skin, resulting in loss of elasticity with excessive wrinkling and dryness.
  • Depigmentation: also known as leopard skin, is when pigment (colour) is lost from entire patches of skin, with spots of normal colour around hair follicles.

Read the full description of the classification of skin disease here: (Murdoch et al., 1993).

After the taught component of the workshop concluded, the team undertook three days of practical clinical training. Consenting volunteers from communities where onchocerciasis is known to exist underwent preliminary screening for skin complaints prior to the week’s training commencing. Individuals with skin complaints were then asked for further consent to volunteer in the training. Dr Murdoch conducted examinations on these individuals, and clinical signs were demonstrated and discussed with the three nurses in a teaching setting. The nurses also conducted observed skin examinations themselves and examination techniques and observations were discussed and reviewed. The ability of the nurses to accurately detect onchodermatitis compared favourably with that of Dr Murdoch by the end of the week. When the implementation begins, these nurses will be part of the field team who travel to endemic areas and survey communities for onchocerciasis infection. The increased knowledge and capability they gained will have a lasting impact on their capacity to correctly diagnose onchodermatitis in the future.

The Bigger Picture: Research and Policy on Skin NTDs

In the past, the onchocerciasis research agenda was dominated by efforts to eliminate blindness; reprioritisation of onchodermatitis within a framework for addressing onchocerciasis morbidity in general would help redress this balance. This could be done in conjunction with other skin NTDs, such as the integrated approach to managing skin NTDS proposed by Mitja et al., 2017. As they outlined, initial assessment of individual endemic skin diseases is a crucial first step towards implementing an integrated management strategy for skin NTDS. The work of COUNTDOWN in South West Cameroon can directly feed into this initial assessment. Furthermore, as a visible, outward sign of disease, skin symptoms, associated ill health and stigma, and the impact they have on general well-being, may be more important to the patient than, say, their parasitological status. Assessment of skin symptom severity over time or in response to treatment allows better assessment of the added impact any such treatment may be having, and is less invasive than standard parasitological measurements. This should be of paramount importance when formulating or revising control strategies at the national and international level.

This work is not only important for individuals who are affected by onchodermatitis, but more broadly to raise awareness of NTDs which cause skin disease, and to provide up to date evidence on their control. Evidenced based policy and planning is becoming increasing important in all areas of health research.  Given the number of NTDs recognised by the WHO which can give rise to acute or chronic skin presentations (table 1), the assessment of skin disease in sub-Saharan Africa should be afforded higher priority on research agendas, particularly due to the lack of programmatic data surrounding their distribution, severity and management.

NTD Associated skin pathology
Onchocerciasis Severe itching, nodules, onchocerciasis related dermatitis (onchodermatitis); acute or chronic papular dermatitis, lichenified onchodermatitis, “leopard skin”/depigmentation, skin atrophy, hanging groin
Lymphatic filariasis Lymphoedema, elephantiasis, hydrocele, secondary bacterial infections
Cutaneous leishmaniasis Multiple skin ulcers, papules, nodules, plaques, scarring
Leprosy Skin patches, nodules, thickened nerves, damaged skin, permanent damage and disfigurement of eyes, nose, limbs, fingers
Buruli ulcer Skin ulcer
Yaws Ulceration, damage to skin, bone and cartilage
Mycetoma Subcutaneous mass with sinuses and discharge, destruction, deformity and loss of function in infected areas

Table 1: summarised from Mitja et al., 2017

Evidence on onchodermatitis is scarce, but not completely absent; Ozoh et al. performed two cross-sectional surveys of onchocercal skin disease at baseline and after 5 or 6 years of annual ivermectin treatment and found profound reductions in itching and all forms of onchodermatitis (Ozoh et al. 2011). An earlier study found that annual ivermectin treatment reduced skin symptom severity and prevalence, however there was no additional benefit when  3- or 6-monthly ivermectin treatment regimens were compared with annual treatment (Brieger et al. 1998). Re-analysis of pre-control data from Nigeria confirmed significant levels of itching and onchodermatitis in an area which was already known to have high rates of onchocercal blindness (Murdoch et al 2017), and demonstrated a strong correlation between parasitological indicators and risk of onchodermatitis. The burden of onchodermatitis uncovered by these studies shows why gathering evidence on the prevalence and severity of skin symptoms is so important. Otherwise, assessment of skin disease caused by onchocerciasis has been relatively neglected by control programmes. Data on skin disease before, during or after the implementation of mass drug administration programmes is not routinely reported, so this represents a real gap in our knowledge. The COUNTDOWN work in Cameroon will lead the way in bridging this gap, generating evidence to enable future research and policy agendas to prioritise assessment of NTD skin diseases appropriately.

On top of the direct and devastating physical impact of skin NTDs, recent work quantifying the mental health burden of Lymphatic Filariasis in patients with skin symptoms and their caregivers (Ton et al., 2015) showed how skin diseases have a serious impact on both a mental and physical level. COUNTDOWN has brought together parasitologists, health economists and social scientists to generate data on the overall burden, physical, mental and financial, of onchocerciasis on an individual and community level. Finally, skin presentations in onchocerciasis are a chronic presentation of the disease, they indicate a long-term infection that has progressed over the course of a lifetime. Lifelong infection with preventable infectious diseases is exactly what the targets set out by the Sustainable Development Goals and London Declaration are trying to eliminate. Tackling this “chronic pandemic” of avoidable disease and suffering caused by NTDs (Molyneux et al., 2016) is a necessity. Prioritising onchodermatitis and other skin NTDs provides an easy and effective means to do this.

COUNTDOWN is leading the way in implementing the well-established clinical grading scale to monitor the impact of doxycycline treatment, and providing a model through which onchodermatitis can be prioritised during such treatment programmes. If successful, this approach could be easily transferred to other endemic areas, and be used to monitor new drug regimens that are currently being developed. The knowledge transfer and capacity building achieved during the week-long workshop in collaboration with Dr Michele Murdoch is another important step towards increasing the profile of skin NTDs and moving towards integrated management strategies.

 

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The World NTD Summit Highlights & Schistosomiasis Discussions

by Prof. Russell Stothard – COUNTDOWN Director

The importance of the international activities that took place last week at the global summit on NTDs cannot be easily overstated. Hosted by the World Health Organisation (WHO), the second global partners meeting took place on the 19th April with several previous international pledges and commitments reaffirmed, alongside announcements of new ones. From a UK-perspective, the Minister of State for International Development the Rt Hon. Lord Bates stated that DFID will double its efforts on control of NTDs. This will be secured by allocation of additional funding of up to £360 million over the next five years. Bill Gates, who was in attendance welcomed this news which was later mentioned in his speech at Royal United Services Institute for Defence and Security Studies in London.

The Fourth WHO Report on NTDs was launched at the NTD summit. This recognised the achievements of the past decade on Neglected Tropical Diseases (NTDs), the need to sustain the momentum towards the 2020 WHO Roadmap Targets, and called on partners to facilitate the availability of funds and resources needed beyond the 2020 perspective. Progress being made for each NTD was listed and new vector control strategies were highlighted by discussing the draft of the WHO Global Vector Control Response 2017–2030. This argued that a “One Health” approach was much needed exploring the human–animal health interface and commonalities in water, sanitation and hygiene measures. The latter sets a broader challenge for integration within and across the current health system, especially in interpretation of what universal health coverage exactly means.

From a personal perspective, two things were particularly pleasing. First, to note was the entry of NTDs Control into the Hall of Fame of the Guinness Book of Records by achieving the “Most Medications Donated in 24 hours (multiple venues)”. Collectively this was evidence of a tremendous group effort in international goodwill where an incredible number 207,169 292 doses of donated medicines was made possible through the efforts of Bayer, Eisai, Gilead, GSK, J&J, MSD, Merck KGaA, Novartis, Pfizer, Sanofi, as well as, the Bill & Melinda Gates Foundation.

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Dr Ifeoma Anagbogu at COUNTDOWN Nigeria Launch 15.03.2017

Second, COUNTDOWN Nigeria’s lead at the Federal Ministry of Health – Dr Ifeoma Anagbogu, was one of the finalists for the Leadership Award during the Women in Focus dinner. Dr Anagbogu who worked extensively to make Nigeria Guinea-worm free, leads the NTD Division within the Nigeria Federal Ministry of Health. Other categories for the Women in Focus awards included Inspirational Award, Community Champion Award and Exceptional Service Award.

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Dr Uche Amazigo at COUNTDOWN Nigeria Launch

Prof. Uche Amazigo who is one of the main chairs of the Nigeria NTD Steering Committee was nominated for Exceptional Service, for dedicating most of her research and career to the elimination of NTDs as seen in her participation and leadership in scaling-up the innovative Community-Directed Treatment.

In a musical celebration of these awards, the NTD community was very fortunate to have the Béninoise soulstress – Angelique Kidjo, perform on stage.   

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Angelique Kidjo performing at the Women in NTDs celebration

From the 20 – 21st April, disease-specific sessions took place at the Hotel Continental. It was a delight seeing several COUNTDOWN colleagues attend and present their work. During the second session on schistosomiasis as organised by the Global Schistosomiasis Alliance (GSA), I outlined our recent work on developing a framework for environmental surveillance. This clearly sets the scene to evaluate the much-needed scale-up in, and expansion of access to praziquantel by drawing into focus the transmission dynamics within the environment.

In a further attempt to do so, the GSA created a lakeside stir by having a large inflatable worm “invade” Geneva as part of their #makeschistory initiative.  More broadly, further COUNTDOWN work was featured within brochures of the special edition of Infectious Diseases of Poverty dedicated to “Schistosomiasis research: providing the tools needed for elimination”, sponsored by the GSA.

Furthermore, copies of the report on the recent Towards Elimination of Schistosomiasis Conference in Cameroon were also available for appraisals.

During open discussions, I became aware for example that while the surveillance for Lymphatic Filariasis and STH were becoming integrated as set within the Transmission Assessment Survey (TAS), integration of intestinal schistosomiasis however, was not. This fragmentation seems counterproductive for the key diagnostic to be used. Kato-Katz faecal sampling detects both STH and Schistosoma mansoni infection. It seems a little short-sighted to ignore such synergies for there could be significant cost-savings to be made within future co-surveillance. Answers to this question might be found within the DeWorm3 initiative.

So, we now observe that space with interest, hoping that newly emerging disease-specific silos are quickly broken down.

COUNTDOWN Nigeria: A Model for Conducting Implementation Research

Dr Obiageli Nebe, Phillip Okefu Okoko, Ruth Dixon, Laura Dean

COUNTDOWN is a research consortium dedicated to investigating the cost-effective, scale up of sustainable solutions necessary to control and eliminate the seven most common Neglected Tropical Diseases by 2020. In Nigeria, the COUNTDOWN project is a collaboration between the Federal Ministry of Health (FMOH), the Kaduna & Ogun State Ministries of Health, Liverpool School of Tropical Medicine (LSTM) and Sightsavers. COUNTDOWN is supporting implementation research, the outcome of which will provide the evidence needed for policy and or programme change to enhance coordination and programme delivery. Activities began in Nigeria in September 2016.

To maintain the COUNTDOWN ethos of multidisciplinary equitable collaboration, we have ensured to build a partnership in Nigeria that focuses on the following areas:

Early Involvement of key stakeholders in a genuine and trusting partnership

It is important to secure the full commitment of the Federal and State Ministries of Health to the vision and goals of the project and buy-in into the outcomes, increasing likelihood of taking up key findings that may inform policy.

Advocacy meeting with the FMoH, Sightsavers Nigeria Office and LSTM were held before any project activity. All partners were involved in development of timelines, planning and project conceptualisation and all were on the panel during team recruitment.

The programme was launched on the 15th March 2017 receiving unanimous endorsement by the NTD Steering Committee and the COUNTDOWN Nigeria team being formally invited to the join the Research Sub-committee.

Having a multi-disciplinary and cross-sectoral team

Issues are not one dimensional; they are influenced by social, political, health, economic, operational and cultural factors. A multidisciplinary multi-sectoral team allows a holistic approach and adaptability to country’s needs.

The COUNTDOWN team is led by the Federal Ministry of Health and includes social scientists, health economists, a research uptake officer (embedded in FMoH), and a research manager/officer. The collaboration includes LSTM bringing technical guidance and Sightsavers the perspective of large scale implementing partner.

Identify research needs that will address implementation issues in the local context

Implementation research is not a “one-size fits all”; countries and contexts are different with varying challenges to NTD control and elimination programs. Research that addresses a genuine need is more useful and more likely to be taken up resulting in positive programmatic impact.

The preliminary phase of COUNTDOWN Nigeria has been a thorough and robust qualitative situation analysis of the NTD programme. It involves perspectives of Federal, State, Local Government Area (LGA), Primary Health Care (PHC) and Community Directed Distributors (CDDs)/Teachers involved in NTD programme delivery. Two States of Nigeria – Kaduna and Ogun – have been purposively selected as the focus of COUNTDOWN Nigeria and the situation analysis as they represent two very different NTD implementing environments. Key informant interviews (38) and participatory action research workshops (18) have been completed in 3 LGAs of each State. Data is currently being analysed to provide a full contextual understanding of each study area and inform research question development for the main study. Full scale research will begin late 2017.

Maintaining effective and collaborative partnership

Research questions and implementation environments evolve. Only when partnerships are truly collaborative, can teams adapt together keeping research focussed and relevant.

The Nigeria COUNTDOWN team is led by the Federal Ministry of Health who have, and continue to take an extremely active and engaged role in planning, decision making and data collection. Open dialogues and honest communication have facilitated an evolving relationship between all three partners and successful resolution of any issues. At the recent partners meeting in Yaoundé (March 2017) all partners were present including 4 participants from FMoH. Dissemination meetings for the situation analysis are planned for mid-June 2017, scheduled to allow feedback from each State to be inputted before Federal dissemination workshop. Dissemination of situational analysis will be followed by an evidence synthesis workshop and research planning meeting where questions will be formulated and planned and which all partners will attend.

Linking to the global agenda

It is important to “be informed as well as informing”. By working in tandem with the global agenda and being current on wider sectoral issues, contributions to the evidence base can be more valuable to more people and non-duplicative.

The team is working in the context of the “Leave no one behind” global agenda and the Nigerian national slogan “End the neglect of NTDs”. COUNTDOWN is a multi-country project where all country teams regularly get together for cross-country learning events. COUNTDOWN Nigeria has incorporated into the situation analysis a pilot of the new World Health Organisation (WHO) Gender, Equity and Rights Tool with results presented at the WHO Strategic and Technical Advisory Group meeting in Geneva (17th Feb 2017). Results have also been included as part of a submission for an Equity Symposium at the American Society of Tropical Medicine and Hygiene. Early findings of the situation analysis have already been discussed at international forums such as Towards Elimination of Schistosomiasis (TES) conference in Cameroon (March 2017).

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Dr Akinola Stephen – COUNTDOWN Nigeria Research Officer for Ogun State presenting at the TES Conference in Yaoundé, Cameroon

Conducting multidisciplinary implementation research can be complex, but is essential for cost effective scale up of NTD control and elimination interventions. We hope by using the guiding principles identified here that we can learn lessons to be taken forward to address some of the key bottlenecks currently faced by the NTD programme in Nigeria. Through the generation of our strong multidisciplinary team, we also hope to make recommendations for the success of cross-discipline and cross-country effective and equitable research partnerships.

Read about COUNTDOWN Nigeria’s recent launch via – https://countdownonntds.wordpress.com/2017/04/06/countdown-launched-in-nigeria/

We will also be attending the NTD Summit organised by WHO and held at their headquarters in Geneva, Switzerland from 19 – 22 April 2017.

For more information about Nigeria’s Department of health, visit – http://www.health.gov.ng/index.php/department/public-health

COUNTDOWN Launched in Nigeria!

If you want to go fast, go alone; if you want to go far, go together: Collaboration in Research

by Pamela Bongkiyung, Prof. Russell Stothard & COUNTDOWN Nigeria Team

It was an auspicious moment when the COUNTDOWN programme was launched in Lagos – Nigeria, during the 18th Neglected Tropical Diseases (NTDs) Steering Committee Meeting, which took place from the 13th – 15th March 2017.

The Steering Committee gathered experts from the academia, the Federal Ministry of Health, the State Ministries of Health, Research Triangle Institute (RTI)/ENVISION, Evidence Action, End Fund, MITOSATH (Mission to Save the Helpless), Helen Keller International, Health Partners International, Sightsavers, HANDS (Health and Development Support Programme), Amen Health Foundation, NIMR (Nigerian Institute of Medical Research), WHO (World Health Organisation), eHealth Africa and COUNTDOWN of course.

The sub-committees which presented at the main steering committee meeting, ranged from research, technical review, NTDs- WASH (water, sanitation & hygiene), elimination & verification to advocacy & resource mobilization. Discussions had in the meeting ranged from donor priorities to country’s needs. Should the country accept funders choice of disease even if the burden was heavier elsewhere; was one of the questions pondered.

With an introductory presentation from COUNTDOWN’s Nigeria Country Director, Dr Sunday Isiyaku, the Steering Committee soon understood that the project’s focus is to leave no one behind given its multidisciplinary approach and incorporation of health economics. Dr Isiyaku highlighted COUNTDOWN’s implementation research that will investigate cost-effective ways of up-scaling NTD control. Not forgetting the pertinent role played by community drug distributors (CDDs) and in this case, two CDDs from Kaduna state who have served for over 15 years; Dr Isiyaku, reminded the Steering Committee of what communities can achieve when they are committed as seen in the case of the dedicated CDDs from Kaduna.

Kaduna CDDs

Community Drug Distributors (L-R): Joseph Umaru & Shittu Baba

Dr Isiyaku tendered a request for the Research Sub – Committee of the NTD Steering Committee, to play an advisory role to the COUNTDOWN Nigeria project. This was endorsed by all chairs of the NTD Steering Committee.

COUNTDOWN’s Director – Prof. Russell Stothard, in his opening speech, informed the group that COUNTDOWN is not just about one disease or partner but a multitude of partnerships working together with a major task of breaching the gap between researchers and policymakers at the federal, state and international levels.

COUNTDOWN’s priority in Nigeria is to conduct a situational analysis in the two focal states – Kaduna & Ogun, which should reveal the challenges that need to be addressed to cost-effectively scale-up NTD programmes and ease integration into the health system whilst strengthening it. In addition, gaps will be identified in line with successes that will form the basis for the next stage of the research.

The launch of COUNTDOWN Nigeria elucidated cheers but also injected an element of hope as shown in the enthusiasm expressed by Prof. Adenike Abiose, Prof. Uche Amazigo and Dr Margaret Mafe – all members of the NTD Steering Committee. COUNTDOWN Nigeria was touted as the programme that would breach the evidence research gap left by the end of APOC (African Programme for Onchocerciasis Control) as seen in its multi-partner and cross-border approach.

It soon became evident that there is a fervent desire within the Nigerian NTD community for collaboration and knowledge sharing in tackling hotspots of NTDs, an action already embodied by COUNTDOWN. In the Research Sub-Committee’s recommendations to the Steering Committee, evidence-based research is encouraged in its terms of reference. It is no longer enough to produce endless research, evidence-based research is emphasised.

Activities are already being integrated at the federal, state, local government areas (LGAs) and community levels to include advocacy and resource mobilization. There is a push for this to be reflected in state NTD Masterplans to help fund NTD activities within the country. In East Africa, advocacy has a long tradition and is entrenched in most non-governmental development organisations. Realisation is dawning on the need for advocacy to become civil society driven. The point is to encourage buy-in from communities and major stakeholders within Nigeria. For some programmes like UNITED Consortium for NTDs, engaging civil society organisations to be active participants for advocacy, provides a basis for their exit strategy.

Why advocate and mobilise for funds? We all know donors will not give forever and given the recent changing political climates and donor priorities in main funders’ countries’, the Nigerian NTD community are preparing themselves for when donor fatigue sets in.

By the time funds from advocacy and mobilisation activities in Nigeria stream in, we hope COUNTDOWN’s implementation research can provide some solutions that will put the funds raised through advocacy, to good use and move the NTDs agenda that closer to elimination.

You can access the Storify of our tweets for the launch from @NTDCOUNTDOWN and @COUNTDOWNNG from here.