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This Report was researched by the UK Coalition against NTDs and printing funded by GlaxoSmithKlyneUK Coalition against NTDs:Annual Report 2014-15Report for the All-Party Parliamentary Groupon Malaria and Neglected Tropical DiseasesHouse of CommonsThe All-Party Parliamentary Group on Malaria and Neglected Tropical Diseases (APPMG)

UK Coalition against NTDs:Annual Report 2014-15Report for the All-Party Parliamentary Groupon Malaria and Neglected Tropical DiseasesChairman: Jeremy Lefroy MPVice Chairmen: Pauline Latham OBE MP; Lord Rea;Kevin Barron MP; Baroness Hayman GBE, PCSecretary: Fiona Bruce MP Treasurer: Andrew George MPCoordinator: Susan Dykes e-mail susanmdykes@gmail.comwww.appmg-malaria.org.ukThis is not an official publication of the House of Commons or the House of Lords. It has not been approved by either House or its committees. All-Party ParliamentaryGroups are informal groups of Members of both Houses with a common interest in particular issues. The views expressed in this report are those of the Group.

ContentsChairman’s foreword ....................................................................................................................................................iAbbreviations .................................................................................................................................................................iiiAcknowledgements .....................................................................................................................................................ivThe future of NTDs post-2015 – Equity, access and inclusion ................................................................ 1Recommendations....................................................................................................................................................... 3A post-2015 vision for NTDs .................................................................................................................................. 4NTD spotlight: Blinding Trachoma ...................................................................................................................... 5NTD spotlight: Leprosy ............................................................................................................................................. 7Data and surveillance ................................................................................................................................................. 9Research and Development (R&D) to advance efforts against NTDs .............................................10Control and elimination .........................................................................................................................................12Factsheet on common NTDs ...............................................................................................................................13

Chairman’s forewordHouse Of CommonsThe All-Party Parliamentary Group on Malaria and Neglected Tropical DiseasesIf ever we needed a wake-up call to the vitalimportance of tackling infectious diseasearound the world, Ebola has provided it.This devastating disease which, at the time ofwriting, seems mercifully to be affecting fewerpeople each week, has shown us just howimportant it is to help countries developstrong health systems with universal coverage.It has also highlighted the bravery and sacrifice ofthe health workers, who are at the front line ofthe war on disease. I would like to dedicate this– our final report of the 2010-2015 Parliament– to the memory of all those who have giventheir lives in Sierra Leone, Liberia, Guinea andelsewhere in service of their fellow human beings.Strong health systems and dedicated healthprofessionals are key to fighting NeglectedTropical Diseases, as I have learned in thealmost five years I have had the honour ofchairing this All-Party Parliamentary Group.APPG members Pauline Latham OBE MP,Fiona Bruce MP, Fiona O’Donnell MP and I aremembers of the House of Commons InternationalDevelopment Select Committee, which in 2014reported on the UK Government’s investmentand progress in Health System Strengthening.During our inquiry, we were informed by a writtenevidence submission from the UK Coalition againstNeglected Tropical Diseases that a coordinatedhealth systems approach is vital for implementingthe WHO SAFE (Surgery, Antibiotics, Facialcleanliness, Environmental hygiene) strategyto eliminate blinding trachoma by 2020:“Surgical interventions, antibiotic distribution and healthpromotion activities need to be delivered through ahealth system in order to reach trachoma endemiccommunities. However, many trachoma-endemiccountries have a weak health system with evenweaker primary healthcare, as well as little capacityto work across ministries and sectors to delivercomponents such as water, sanitation and hygiene.The current momentum in reinvigorating primaryhealthcare with integration of eye care and healthsystem strengthening provides a real opportunity inthe drive towards trachoma elimination. Currentlyonly 13 per cent of people receive the treatmentthey require for this disease.” (Report: Para 68).And what is true for trachoma is true fortackling all NTDs.Our inquiry also learned of the adverse impactthat shortages of health workers, particularlyspecialists, can have on the fight against NTDs:“… on our recent visit to Sierra Leone, … we heardthat a shortage of doctors, nurses and midwives wasa major obstacle to health system improvement.We heard that a scarcity of specialist expertisewas a major obstacle to tackling conditions suchas neglected tropical diseases. The Global HealthWorkforce Alliance (GWHA) estimates that morethan seven million additional health workers arethat could rise to 13 million by 2035 because ofprojected population growth.” (Report: Para 56).But these continuing challenges should notdetract from the great progress which has beenmade in the past five years in tackling NTDs.Chairman: Jeremy Lefroy MPVice Chairmen: Pauline Latham OBE MP; Lord Rea;Kevin Barron MP; Baroness Hayman GBE, PCSecretary: Fiona Bruce MP Treasurer: Andrew George MPCoordinator: Susan Dykes e-mail susanmdykes@gmail.comwww.appmg-malaria.org.uki

House Of CommonsThe All-Party Parliamentary Group on Malaria and Neglected Tropical DiseasesThere is outstanding cooperation betweengovernment health services, the private sector –who supply billions of treatments free of charge,research institutes, several based in the UK,NGOs and international donors.The donors themselves have shown a greatercommitment to NTDs since 2010. DFID increasedits expenditure from £50 million to £245 millionover the four years from 2011-2015. The USGovernment has also made NTDs a priorityallocating over USD $452.5 million over the sametimeframe. Both governments appreciate just howmuch can be done with relatively small sums tohelp the lives of the 1.4 billion people – morethan a sixth of the world’s population – affectedby these diseases. To put things in perspective,the funding allocated for four years globally byDFID would be enough to run one mediumsizedacute hospital in the UK for just one year.The next Parliament is crucial. Will we maintainthis momentum, or will we see attention drawnelsewhere? I trust that there will be MPs and Peersin the next Parliament who will reconstitute theAPPG on Malaria and Neglected Tropical Diseasesand will continue to make the case to support theefforts to fight NTDs and eventually eliminate them.I would like to thank my parliamentary colleagues,Hayman, Lord Rea, Lord Trees and Lord Stonefor their constant support over the past year.Coordinator of the APPG, has masterminded overthe years. We will miss her work greatly – but shewill always be part of this group. Rt Hon StephenO’Brien MP, the founder of the group, has as alwaysshown great support and encouragement. The workwe have done together would not have been possiblewithout the generous support of our donors whoare listed in this report and on our website. Finally,I am most grateful to Helen Hamilton, Chair of thewho has coordinated the production of this report.“… There is no silver bullet remedy to helping acountry break the cycle of poverty, but investing inthe health of its population offers one of the bestoptions for unlocking economic potential. Withfull support both from national governments andfrom the global community, we can … put an endto NTDs on the African continent [and beyond].”His Excellency John Kufuor, Presidentof the Republic of Ghana (2001-2009).Jeremy Lefroy MPChairman of the All-Party Parliamentary Groupon Malaria and Neglected Tropical DiseasesChairman: Jeremy Lefroy MPVice Chairmen: Pauline Latham OBE MP; Lord Rea;Kevin Barron MP; Baroness Hayman GBE, PCSecretary: Fiona Bruce MP Treasurer: Andrew George MPCoordinator: Susan Dykes e-mail susanmdykes@gmail.comwww.appmg-malaria.org.ukii

AbbreviationsAPPG ............................ All-Party Parliamentary Group on Malaria and NTDsCALL ............................ Challenging-Anti Leprosy LegislationDALY ............................ Disability-Adjusted Life YearsDFID ............................. Department For International DevelopmentGTMP ........................... Global Trachoma Mapping ProjectMDA ............................. Mass Drug AdministrationMDG ............................. Millennium Development Goal(s)NNN ............................ NGDO NTD NetworkNTD ............................. Neglected Tropical Disease(s)SAFE .............................. Surgery, Antibiotics, Face-washing and Environmental HygieneSDG .............................. Sustainable Development Goal(s)STH ............................... Soil-transmitted helminthsUKCNTD .................... UK Coalition against Neglected Tropical DiseasesWASH .......................... Water, Sanitation and HygieneWHA ............................ World Health AssemblyWHO ........................... World Health Organizationiii

IntroductionHouse Of CommonsThe All-Party Parliamentary Group on Malaria and Neglected Tropical DiseasesThe future of NTDs post-2015 – Equity, access and inclusionThis year the UKCNTD welcomed the outcomesof two International Development Committeeinquiries, one on disability and development,and one on health system strengthening.Both recognised the impact NTDs can haveon people’s lives, in terms of their health,their social inclusion and their economiccontribution within their communities.For the UKCNTD, the final All-PartyParliamentary Group on Malaria and NeglectedTropical Diseases report of this Parliamentis a moment to take stock and recognise thehuge strides forward that have been madein combatting NTDs. This is thanks in largepart to the continued commitment of the UKGovernment. Throughout this Parliament theUK has remained a world leader at the forefrontof the fight to end these devastating diseases.This year we’ve seen the harrowing effects ofthe Ebola epidemic in Guinea, Liberia, and SierraLeone, greatly magnified by their weak healthsystems. Ebola has shone a spotlight on theimportance of building health systems to addresschallenges such as insufficient numbers of qualifiedhealth workers, and inadequate surveillanceand information systems equipped to respondrapidly to new and existing health challenges.On the global stage the UK has led the callto ‘leave no one behind’ in the next setof development goals that will be agreedthis year. This call is about ensuring thatequity is at the heart of the wider effortsto eradicate extreme poverty by 2030.Why is this important to the NTD community?In short, because NTDs are diseases of povertyand exclusion. The 1.4 billion people whosefamilies and communities live with the devastatingimpact of NTDs every day do so because theyare left behind in efforts to combat poverty.This year, with a new set of global developmentgoals being agreed upon, there is a once in ageneration chance to address this issue, and getit right. Winning the fight against NTDs wouldnot only benefit individual health outcomes,but benefit programmes designed to improveeducation, nutrition, water and sanitation,maternal and child health and economic growth.The UKCNTD would like to thank the currentUK Government during this parliamentarysession for it’s recognition and commitmentto addressing these debilitating diseases ofpoverty and in particular, former MinistersRt Hon Andrew Mitchell MP and Rt. HonStephen O’Brien MP for their championingof NTDs. We thank Jeremy Lefroy MP for hiscommitment to NTDs as Chairman of theAPPG and through his work as a member of theInternational Development Select Committee.Helen HamiltonChair of UK Coalition against NTDs1

1 6inchildren are atrisk of NTDsNTDsaffect people in149countriesNeglected tropical diseases affect the world’s poorestcommunities. They must remain a global health prioritypost-2015.1.35 billion£245 millionWASHeducationnutritiondisabilityhealth 140 million Credit: Kate Ixer / LEPRA2

Recommendations2015 is a pivotal year for NTDs. As we approach the UK general election, it is crucial that all UKparties make NTDs a development priority for the next UK Government to ensure there is strongcross-party support. The investment made in combatting these diseases to date is paying off and weare starting to make strong progress. It’s now crucial that we protect these successes and continueto build on them in an equitable way.Specifically, the new UK Government should:• Maintain its financial commitment to NTD programmes to support the achievement of theWHO NTD Roadmap goals, through the continued implementation of the 2012 London Declaration.• Ensure that the DFID disability framework and the forthcoming DFID health system frameworksupport a pro-poor NTD response, which delivers prevention, diagnosis, treatment and care formarginalised communities, including women and children, people with disabilities and older peoplein developing countries.• Support the full range of research and development for NTDs, including improved strategies andpartnerships to develop the next generation of treatments, diagnostics, and vaccines, which willcontribute to longer-term elimination goals.• Ensure that the new DFID health system strengthening framework supports country governmentsto equip their health systems to deliver essential NTD interventions.• Promote a cross-sectoral NTD response that supports water, sanitation and hygiene (WASH),nutrition, health, education, maternal and child health and disability partners to collaborate on NTDs.• Promote the partnership model exemplified by the NTD response, which draws on various public,private and civil society competencies including drug donations, technical assistance, donor funding,political commitment and community engagement.• Continue to champion investments for NTDs internationally, by supporting the inclusion of NTDswithin the health goal in the Sustainable Development Goals (SDGs) and within related SDGs suchas those tied to WASH and nutrition.• Highlight the successes achieved with UK Government investment in NTDs, and urge othergovernments and multi-lateral institutions to contribute more to the fight against NTDs.3

A post-2015 vision for NTDsThe international community is moving into thefinal stages of negotiations on the post-2015development agenda to replace the MillenniumDevelopment Goals. In this period there is aunique opportunity to ensure a future frameworkthat includes NTDs in a way that maximiseshealth outcomes and sustains achievementsin NTD control, elimination and eradication.This cannot be done without strong nationalsystems and an equitable approach that deliverscoverage across all population groups.Poverty remains the single most importantdeterminant for NTDs 1 . Ultimately exposure topoverty-associated risk factors and conditionssynonymous with marginalised populations,such as inadequate access to health services,WASH practices, housing and education,allow these diseases to flourish and enablea vicious cycle of disease and poverty.Inclusion of NTDs in the post-2015 developmentframework would represent a global commitmentto NTD control, elimination and eradication. Itwould also embed national commitments, ensureequity in access to health services and cementNTDs firmly within the poverty alleviationagenda, alongside universal health coverage.High quality and equitable interventions forNTDs form an important element of universalhealth coverage. Actions to secure universalhealth coverage must be underpinned byaccess to WASH. This is vital to safeguardand sustain progress made against NTDs,in terms of both NTD prevention and thecare for chronic NTD-related conditions.Progress towards elimination of NTDs alsorepresents an interim indicator for both povertyalleviation efforts and for universal healthcoverage; to achieve elimination of NTDs,national health services must meet the healthneeds of the poorest and most marginalisedsections of their populations. Moreover,delivering on NTD elimination mandates thatother interventions, such as ensuring accessto WASH or improving housing standards,are reaching the right groups and beingachieved in an effective and equitable way.For example, highlighting NTD controlmeasures within WASH programmes orefforts to address malnutrition and morbiditymanagement would ensure that wherepossible, shared solutions are promoted.A woman leaves the clinic, walking on her own after her eye surgery in Nasir in Upper Nile, South SudanCredit: Adriane Ohanesian / Sightsavers.1Aagaard-Hansen J, Lise Chaignat C (2010) Neglected tropical diseases: equityand social determinants In Blas E, and Sivasankara Kurup A, (eds) Equity,social determinants and public health, World Health Organization p137-1574

NTD spotlight: Blinding TrachomaMapping trachoma – getting the full pictureIn late 2012 the Global Trachoma MappingProject (GTMP) was launched. Fundedby the UK Department for InternationalDevelopment (DFID), it is the largestinfectious disease mapping project everlaunched. The project uses innovativemobile technology to map the globalprevalence of trachoma and some ofits determinants, and represents a vitaltrachoma – the world’s leading infectiouscause of blindness. It addresses one ofthe common barriers to effective diseasecontrol – lack of good quality data.The WHO Alliance for the Global Elimination ofTrachoma has set ambitious targets to eliminateblinding trachoma by 2020. However, until 2012,one of the major challenges was the lack ofdata and information to guide efforts to tacklethe disease. To achieve trachoma eliminationgoals, mapping needs to be completed by theend of 2015, so that the GTMP can deliver dataat district level, to inform planning of publichealth interventions and mobilise resources.The mapping has already examined the eyelidsof over 2 million people in 21 countries acrossAfrica, Asia, Eastern Mediterranean, SouthAmerica and the Pacific region and has providedprogramme-ready information for SAFE (surgery,antibiotics, facial cleanliness, environmentalhygiene) implementation for over 165 millionpeople in 1,317 districts. It will also provide thefirst truly global picture of trachoma prevalenceand is guiding efforts to eliminate the disease.Mapping the disease and its determinantsThe WASH and trachoma sectors have a commontarget population—the world’s most marginalisedcommunities, as trachoma is endemic wherepoverty and poor sanitary conditions persist.This population often lacks access to safe reliableservices for health and WASH, and as a result theysuffer disproportionately from debilitating disease.The WHO-endorsed SAFE strategy for theelimination of trachoma is based on measures toboth treat and prevent the disease by addressingmajor risk factors. Risk factors for trachoma includewater shortages, poor environmental and personalhygiene behaviours and conditions, crowdedhouseholds and flies. Each of these risk factors isstrongly linked to inadequate access to water andsanitation. Due to this link, the GTMP collects datasimultaneously on both the prevalence of trachomaand improved and unimproved WASH conditions.Halima Suleiman is a Grader in Nigeria for the Global Trachoma Mapping Project,she is responsible for carrying out eye examinations to check for signs of trachoma.Credit: Tom Saater / Sightsavers5

An innovative approachData for the GTMP are collected by ministryof health field teams on smartphones usingthe open access LINKS application. They aregeo-referenced using global positioning systemcoordinates. Before the data is uploaded to theGlobal Trachoma Atlas 2 it is sent to a secureserver for cleaning, automated analysis andapproval by the relevant ministry of health.The WASH and NTD sectors collect and use datadifferently, which traditionally has posed a challengein mapping efforts. The GTMP methodologyaddressed this by using internationally agreeddefinitions of access to improved/unimprovedwater and sanitation, drawn from the JointMonitoring Programme - the official WHO/UNICEF mechanism tasked with monitoring waterand sanitation progress. This approach ensures thatthe data collected provides national programmemanagers with all the information necessary,both on trachoma prevalence and also waterand sanitation, to plan and deliver effective andsustainable elimination interventions. Moreover,this standardised approach to training and datacollection ensures consistency of quality, and enablescollaboration across national borders, betweentrachoma-affected countries, as well as within them.All four elements of the SAFE strategy must beimplemented for trachoma programmes to besuccessful and for global elimination targets tobe met. If not, trachoma will persist or resurgebecause the risk factors remain. The GTMP haslaid the foundations for quality health services tocombat trachoma, which can only be deliveredthrough planning that is informed by goodquality data. Trachoma stakeholders are unitedaround a common vision – to eliminate blindingtrachoma by 2020 – and the quality and successof this project has leveraged collaboration andsupport from other funders, such as USAID.Delivering accurate, detailed and timelydata, the Global Trachoma Mapping Projectis providing the intelligence to supporttrachoma and WASH stakeholders towork together in partnership towards theelimination of blinding trachoma by 2020.2http://www.trachomaatlas.org6

they can work together to lobby the governmentto invest in development in their communities.This has included improved infrastructure, ensuringolder people and people with disabilities are able toaccess social safety nets, and enabling the youngergeneration to access education and skills training,moving from begging to employment. CALL hasalso worked with the surrounding community usingradio, TV, drama, billboards and magic shows toraise awareness about leprosy and reduce stigma.Over 30,000 people have been involved in the leprosyawareness programme, and as a result people affectedby leprosy are reporting greater social inclusion andimproved access to health care. They are now invited tocommunity meetings and participate in the Gram Sabha(local governance). They have presented memorandumsto the government for village development which haveresulted in new roads, electricity connections, cleanwater, improved sanitation, and the construction ofnew homes. By building their self-esteem and walkingthem through the advocacy process, they are nowagents of change in their own communities and ableto influence others. Working together, they are tryingto change legislation that discriminates against them.Their successes have drawn the interest of othermarginalised groups who now want to learn from them.Leaving No One BehindIt is encouraging that DFID’s new Disability Frameworkand the UN Synthesis Report on the SDGs recognisesthat no-one should be left behind when it comes todevelopment. However, in order for people affectedby NTDs to be included in the development process,and to have equity, access and inclusion, approachesto development need to change. We know thatNTDs are disease of poverty - found among poorand marginalised communities. NTDs are not just ahealth issue, they represent an issue of social justice.As the International Development SelectCommittee recognised, mainstream developmentprogrammes need to actively include peoplewith disabilities, including those with NTDrelateddisability. Empowerment is a long-terminvestment, but it is also essential to combattingNTDs and to support countries and theircitizens to reach their full economic potential.Credit: The Leprosy Mission England & Wales.8

Data and surveillanceMonitoring and evaluating the impact of effortsto combat NTDs is a complex challenge. Thereare more than 1.4 billion people affected by17 different diseases, with a diverse range oftreatment regimens. On the implementationside there are more than 75 countries whosenational governments have developed, national,integrated bringing together programmes; awide variety of development partners, includingUN organisations; multi-lateral; bilaterals; intergovernmentalorganisations; international civilsociety; and community organisations; academicinstitutions and the private sector. Workingtogether, these stakeholders are now poised toimplement comprehensive NTD programmesand achieve success in elimination/control.Challenges for effective surveillance include:• Sensitivity - surveillance systems need tohave sufficiently high sensitivity to detectindividuals with low levels of infection.• Attribution - demonstrating that observedchanges in outcomes are due to theintervention and not other factors.• Community buy-in - NTD interventions needto be acceptable to communities and havetangible benefits. The final audience is thecommunities themselves that are receivingthe interventions, yet this group is oftenneglected in monitoring and evaluating.• Measurability - The use of disabilityadjustedlife years (DALY) provides acommon metric to measure changes inNTDs over time, but estimates are bynecessity based on approximations. It isessential that high-quality data is madefreely available and is regularly updated.The data collection requirements for NTD controlprogrammes can be separated into three stages:1. Monitoring impact of interventionsas they are being implemented.2. Investigating whether programme goalshave been reached (e.g. interruptionof transmission) and thus interventionscan be halted or modified.3. Undertaking surveillance to detectthe re-emergence of transmission.In terms of costs, good surveillance providesexcellent value in the long run, because ithelps target resources efficiently. Sufficientsupport should be allocated to surveillanceefforts, considering the main costs:• Cost for risk-based surveys• Cost of visiting the population unit• Cost per sample• Cost per laboratory diagnosis• Cost for risk assessment• Cost for random surveysSurveillance can have several purposes, includingdocumenting spatial and temporal trends ofdiseases, monitoring the impact of interventions,the identification of (re)emerging diseases,and confirming the absence of a disease. Inelimination programmes specifically, surveillanceshould not only detect and report foci oftransmission but also take responsive action.Maps are an important part of surveillanceefforts, as they visualise data in a more accessibleand straightforward way and can easily highlightwhere resources and interventions are mostneeded. Maps can also show progress overtime, by comparing images from beforeand after interventions, for example.Surveillance should be recognised as keyto disease control and elimination becauseit provides information to guide decisionsabout the nature and scope of interventions.This recognition should be supported byadequate resourcing and prioritisation inNTD programmes, and delivered as part ofongoing efforts to strengthen health systems.Beself Abera is part of a team surveying people in Ethiopiafor the neglected tropical disease trachoma.9

Research and Development (R&D) to advance efforts against NTDsWhy is R&D for NTDs needed?As NTDs are diseases of poverty effortsto control and eliminate them are hinderedby the additional challenges of limited accessto good housing, clean water and sanitation;income available to afford medical services; andtreatment. Seven of the highest burden diseases,including schistosomiasis, lymphatic filariasis, soiltransmittedhelminths (STH) and trachoma, are“tool ready”, with control/elimination programmesequipped with diagnostic, treatment, and followupsurveillance strategies to implement MDAcampaigns. To achieve elimination of NTDs suchas schistosomiasis and STH, investment in newtools and vaccines is required. Indeed, a recentsurvey of almost 400 NTD experts identifiedthe importance of new technologies in reachingLondon Declaration targets for these diseases 4 .For many other NTDs, such as leprosy,dengue, African sleeping sickness, Chagasdisease, and visceral leishmaniasis, vaccines,medicines and diagnostic tests (collectivelyreferred to as products) are either ineffectiveor completely lacking. In these cases, diseasecontrol or elimination will only be achievablewith further commitments to research anddevelopment (R&D). New tools are urgentlyneeded to improve patient care, respond tothe challenge of drug resistance, and enhanceprospects for achieving disease elimination.In the case of sleeping sickness, which continuesto kill in remote or unstable pockets of sub-Saharan Africa, diagnostic tools are inadequate(painful lumbar puncture is the only tool), andwhile nifurtimox-eflornithine combination therapyis an improved optional therapy, it still requiresintravenous infusions 5 . For visceral leishmaniasis,which is prevalent in East Africa, India, and Brazil,invasive diagnostics, long treatment duration (30days), and drug resistance (up to 65% in India) 6pose obstacles to control. For Chagas disease,capacity of technical staff in country to undertake clinical trials and improve implementation of new tools.Credit: Sabin Vaccine Institute4 2013. http://journals.plos.org/plosntds/article?id=10.1371/journal.pntd.0002562http://journals.plos.org/plosntds/article?id=10.1371/journal.pntd.0002562http://journals.plos.org/plosntds/article?id=10.1371/journal.pntd.0002562.5 Trypanosoma brucei gambiense trypanosomiasis: a multicentre, randomised, phase III,6 Reviews 2006;19(1):111-126. doi:10.1128/CMR.19.1.111-126.2006.10

Research and Development (R&D) to advance efforts against NTDsno diagnostic test or cure exists, and safe, effectivedrugs or therapeutic vaccines have yet to bespecifically developed for chronic-stage disease 7 .For the filarial parasitic-worm diseases ofonchocerciasis (river blindness) and lymphaticfilariasis (elephantiasis), which together infectover 150 million people, the standard treatmentof ivermectin (alone or in combination withalbendazole) can lead to serious and permanentside effects such as brain damage or deathin people co-infected with loiasis (Loa loa;African eye worm) 8 . Moreover, currentdrugs kill only the juvenile worms, and notthe adults worms, which continue to infectand will require repeated treatments.Therefore, while continuing to provide existingmedicines for NTD control and prevention,parallel and greatly enhanced R&D initiatives fornew drugs and diagnostics are also necessary.Gaps in NTD R&DAs there is no market for new tools that affectthe world’s poor, there is a great need forincreased funding for NTD R&D in order tohelp sustain momentum for new health tools,advance products currently in developmentand to deliver them to people in need. Thecurrent system for stimulating R&D has failedto deliver new health technologies for diseasesthat affect the world’s poor; there is no moreevidence for this than in the recent outbreakof Ebola which dominated the news in 2014.The establishment of product developmentpartnerships (PDPs), with their ability to bringtogether companies, academia, governmentsand philanthropy to create new medicinesfor the developing world, has helped to fillthis gap. However, funding for NTD R&Dat all stages remains well below the levelsrequired, and funding for late-stage productdevelopment and a full range of neededglobal health technologies is urgently needed.Overall, it has been estimated that at least$1 billion per year over the next 10 years willbe required to put experimental treatments,diagnostics and vaccines in the pipeline throughlarge human trials, and to obtain permissionfrom regulators to introduce them widely.Ultimately, governments capable of providingdevelopmental assistance have a significantrole to play to achieve this level of support.The staggering rates of NTDs, which occur largelyin countries with high rates of instability suggest arole for medical intervention against these diseasesas an important diplomatic tool. Incorporating NTDproduct development into a larger programmeof science and technology diplomacy not onlyserves important humanitarian purposes, butalso creates jobs, spurs business, encouragescollaboration and addresses health needs amongthe poor in high-income countries and middleincomecountries, like the USA, (given it’s recentoutbreaks of dengue and Chagas disease in thesouthern states). Sustained investments in NTDR&D are critical to ensure that the progress madeto date is not squandered and the momentumto ensure these new products reach those inneed is maintained. These new technologies forNTDs play a vital role in the elimination andpost-elimination control measures for NTDs.Despite difficult global economic conditions andthe implementation of austerity measures inrecent years, the UK Government has maintainedits global leadership for NTD R&D (the thirdlargest public funder in this field, after the USand the EC), making good on its promise “notto balance the books on the backs of the poor”.We urge the UK Government to continue tolead the world in this area, and use its position toencourage other donors to invest in innovativetools to treat neglected tropical diseases.Making headwayThrough PDPs, new vaccines are underdevelopment and in clinical trials for several NTDs,including vaccines to combat cholera, hookworminfection, leishmaniasis and schistosomiasis.Additionally, through support from DFID, we haveseen new and more effective therapies availablefor leishmaniasis (2011), sleeping sickness (2013,donated by Sanofi and Bayer) and Chagas disease(2013; a paediatric formulation is now included inthe WHO’s Essential Medicines List for children),which will significantly reduce the prevalence ofmorbidity and mortality from these diseases.7 tre/factsheets/fs340/enhttp://www.who.int/mediacentre/factsheets/fs340/enhttp://www.who.int/mediacentre/factsheets/fs340/en.8 Treatment of Onchocerciasis in Loa loa Endemic Areas: Operational Considerations,11

Control and eliminationMap to illustrate areas identified for control and elimination of NTDs12

Factsheet on common NTDsNTD Symptoms / disabilityChagas disease The disease is caused bya protozoan transmittedthrough contact withthe faeces of an insect,the triatomine bug,known as the “kissingbug”. It can also betransmitted throughblood transfusionand organ transplant.Without treatment, ispotentially fatal followingcardiac and intestinalcomplications.Cysticercosis/TaeniasisTaeniosis/Cysticercosisis a parasitic diseasethat is caused byeating of infectedunder-cooked pork.The parasite developsinto a tapeworm(taeniosis) in the gutof humans causingintestinal disorders butalso the parasite caninvade other organs(cysticercosis) includingthe nervous systemsand cause neurologicalproblems includingepilepsy and can be fatal.Number of peopleat risk globally 1 Global DALY burden100 million peopleare at risk worldwideChagas diseaseis endemic in 21countries acrossLatin America andpatient numbers aregrowing in nonendemiccountriessuch as the UnitedStates, Australia, andEurope as a result ofmigration.0.55 DisabilityAdjusted Life Years 2 .50 million peopleworldwide areaffected cysticercosiscauses an estimated50 000 deaths.0.50 DisabilityAdjusted Life years.Current Methodof treatmentand preventionExisting treatmentshave an unsatisfactorycure rate and canhave toxic side effectsThere is a great needto develop newtreatments for thisdisease.Treatment is with antiepileptictreatments forneurological conditionsand praziquanteland niclosamide forthe tapeworm. Alsoconfinement of pigsand increased foodhygiene combined withimproved sanitationprevent the spread oftaeniosis/cysticercosis.Target for controlelimination and target yearto be eliminatedThe WHO Roadmap forImplementation sets a targetof regional elimination oftransmission though bloodtransfusions by 2015 andintradomiciliary transmissionin the region of theAmericas by 2020.No elimination target hasbeen set for taeniosis/cysticercosis.Percentage of atrisk population WASH:receiving treatment 2 Disease preventionOnly a smallproportion of infectedpeople receiveappropriate treatment.The vector, thetriatomine (‘kissing’)bug, is associated withpoorly-constructedhousing. Althoughvector control is thekey preventive method,good hygiene practicesin food preparation,transportation, storageand consumption arealso recommended toreduce risk of parasiteinfection.Only a smallproportion of infectedpeople receiveappropriate treatment.Prevention requiresstrict meat inspectionregimens, healtheducation, thoroughcooking of pork, soundhygiene, and adequatewater and sanitation bypreventing pig accessto human waste.WASH:Care and disability13

Dengue Classic Dengue:symptoms rangefrom mild fever, toincapacitating high feverwith severe headache,pain behind the eyes,muscle and joint pain,and rash.Severe Dengue:symptoms includesevere abdominal pain,persistent vomiting,bleeding gums, vomitingblood, rapid breathingand fatigue.Human Africantrypanosomiasis(sleepingsickness)HAT is caused by aparasite transmittedby the tsetse fly whichinvades the nervoussystem and causesmental deteriorationand other neurologicproblems and is fatalwithout treatment.Over 2.5 billionpeople – over40% of the world’spopulation – are nowat risk from dengue.This WHO estimateis superseded by theOxford UniversitySpatial Ecology& Epidemiologygroup which putsapproximately 3.9billion at risk.60 million peopleare at risk of beinginfected in 36 Africancountries.264 disability-adjustedlife years per millionpopulation per yearare lost.There is no vaccineor specific medicationfor dengue fever.Patients should seekmedical advice, restand drink plenty offluids. Paracetamolcan be taken to bringdown fever and reducejoint pains. At present,the only method tocontrol or prevent thetransmission of denguevirus is to combatvector mosquitoes.Treatment for severedengue consistsof medical care byphysicians and nursesexperienced with theeffects and progressionof the disease can savelives. Maintenance ofthe patient’s body fluidvolume is critical tosevere dengue care.0.56 DisabilityAdjusted Life Years 2 .Up until 2009, existingtreatments for stage2 of the disease weretoxic or difficult toadminister. In 2009,DNDi and its partnerslaunched the first newtreatment for HAT in25 years.The Global strategy fordengue prevention andcontrol, 2012–2020 aims toaddress a 30-fold increasein global dengue incidenceover the past 50 years.The specific objectives areto reduce mortality andmorbidity from dengue by2020 by at least 50% and25% respectively (using2010 as the baseline).The WHO Roadmap forImplementation sets a targetof country elimination in80% of affected foci by2015.Only a smallproportion of infectedpeople receiveappropriate treatment.Only a smallproportion of infectedpeople receiveappropriate treatment.As the dengue virustransmittingAedesaegypti mosquitoesbreed in man-madecontainers, vectorcontrol measuresinclude covering,emptying, and frequentcleaning of domesticwater storagecontainers, and applyingappropriate insecticidesto outdoor waterstorage containers.WASH does not playa significant role incontrol of the disease.However, commonrisk areas for tsetse flybites that transmit theparasite include watercollection points inforests, and vegetationclose to bathing andwater collection sitesalong river banks.Care for sick patientsrequires clean waterat home and inhealthcare facilities.Advanced diseasemakes wateraccessibilityextremely difficult asaffected individualsrely on assistancefrom others (oftenchildren who areprevented fromgoing to school bytaking care of theirdisabled relatives).14

Factsheet on common NTDsNTD Symptoms / disabilityLeishmaniases The parasite that leadsto infection is calledLeishmania and istransmitted by sandflies.Leishmaniasis hasseveral different forms;visceral leishmaniasis,(which is fatal withouttreatment) andcutaneous leishmaniasisare the most commoncausing disfigurementand stigma.Leprosy(Hansendisease)The disease is causedby Mycobacteriumleprae. The diseaseaffects the skin andnerves and can leadto irreparable nervedamage, impairmentsand disabilities affectinghands, feet and eyes.Number of peopleat risk globally 1 Global DALY burden350 million peopleliving at riskworldwideLeishmaniasis occursin 98 countriesworldwideOver 1 million newcases of cutaneousdiseases annually;significant problems inSyria and Afghanistandue to civil unrest.3.32 DisabilityAdjusted Life Years 2 .ILEP, the umbrellanon-governmentalfederation for antileprosyorganisations,estimates thatleprosy is grosslyunder reported withseveral million casesworldwide currentlyremaining undetected.The number of newcases of leprosyreported during 2013was 215,656 (WHOfigures) from 105countries. Sixteencountries account for95 per cent of thesecases. India accountsfor 59 per cent andBrazil for 14 per cent.It should be notedthat in 2010 a totalof 141 countriesreported a globaltotal of 244 796 newcases of leprosy tothe WHO, 36 fewercountries report in2013. This reductionin countries reportingis one of the reasonswhy reportedcases have reduced.Data on leprosy isincomplete.There is ongoingdiscussion onhow the figure forDisability AdjustedLife Years for leprosyshould be calculated.Previous estimatesare now recognisedto severely underestimatetheimpact of leprosy.It is estimated thatover 3 million havepermanent WHOGrade 2 (visible)disability as a resultof late treatment.Comprehensivedisability statistics arenot available but ILEPrecognise the need toensure that residualmorbidity is identifiedand addressed.Adjusted Life Years2220,000 new cases in2011. India, Brazil andIndonesia account for83% of new cases in2011 An estimated2-3 million remainwith WHO Grade2 (visible) disabilitybut comprehensivedisability statistics areunreliable.Current Methodof treatmentand preventionDiagnosis is difficult invisceral disease, existingtreatments are difficultto administer, toxic, andcostlyDrug resistance is alsoan increasing problem.There is a great needto develop newtreatments for thisdisease.6 or 12 monthsMultidrug therapy(MDT) depending onclassification of disease.Early diagnosis andtreatment is the bestprevention of disability.Prevention – BacillusCalmette-Guérin(BCG) vaccine providessome protectionand trials are alsounderway to roll outchemoprophylaxis usingsingle dose rifampicinfor close contacts. Aleprosy vaccine hasbeen developed andfirst phase clinical trialsare due to commencein 2015.Target for controlelimination and target yearto be eliminatedThe WHO Roadmap forImplementation sets a targetof Regional elimination forvisceral Leishmaniasis on theIndian subcontinent by 2020.WHO Global target ofelimination as a publichealth problem (prevalenceof less than one case perten thousand population)was achieved by 2000.However, there are stillcountries with endemicpockets. The current WHOGlobal Strategy 2011-2015and recommendationof the WHO ExpertCommittee (2010) set thekey target as reduction ofgrade two disability rateper 100,000 population by35 percent by 2015. 2013data published by WHOrevealed that the prevalencerate in 2013 remainedthe same as 2010 dataindicating a lack of progressin reducing disability. TheBangkok Declaration callsfor achieving a global targetof reducing the occurrenceof new cases with GradeII (visible) disability to lessthan one case per millionpopulation by 2020.Percentage of atrisk population WASH:receiving treatment 2 Disease preventionOnly a smallproportion of infectedpeople receiveappropriate treatment.Poor housing andsanitation conditionssuch as poor wastemanagement andopen sewerage mayincrease breeding andresting sites of sandflies, the vector thattransmits the diseasecausingprotozoanparasite. Environmentalmanagement plays apart in vector control.Around 15.5 milliontreated since theintroduction of MDTin early 1980s althoughcoverage with MDTfor all new cases isstill difficult in hardto-reachpopulationsin areas of conflict,nomadic populationsand urban slums.Even once treated,many remain at risk offurther disability, stigmaand discrimination.Although the causeof leprosy, a slowgrowingbacillus(Mycobacteriumleprae) is known, themode of transmissionhas not beenestablished; thereforethere is no establishedWASH-related primaryprevention strategy.As WASH contributesto more hygienicconditions and betterhealth, and thereforea better immunestatus, improvedWASH conditions maymake communitiesand individuals lesssusceptible to leprosy.WASH:Care and disabilityLimited access towater and sanitationcan lead to poorcleanliness and care,which can contributeto the isolation andexclusion of affectedpersons. Cleanwater and hygiene athealth facilities andhomes for woundmanagement.Leprosy can lead topermanent damageto skin, nerves,limbs and eyes.Resulting disabilitiesmake tasks such ascarrying water overdistance difficult.Wound managementthrough self-careusing clean wateris needed to speedup wound healingand reduce disability.People with leprosyare subject to stigmaand exclusion by thecommunity, and canbe excluded fromwater and sanitationfacilities. Limitedaccess to water andsanitation can lead topoor cleanliness andcare, contributingto isolation andexclusion.15

LymphaticOnchocerciasis(river blindness)Severe intermittentfever. Clinicalmanifestations includehydrocele (severeswelling of the scrotum)and lymphodema(swelling of the limbs,particularly legs).Caused by a parasiticworm that is spread bythe bite of a black fly. Itcan cause blindness aswell as debilitating skinconditions includingintense itching and skindepigmentation.1.4 billion peopleliving at riskworldwide.More than 120million people livingat risk worldwideand an estimated25 million infected.2.77 DisabilityAdjusted Life Years 2 .0.49 DisabilityAdjusted Life Years 2 .Annual preventivechemotherapy witheither albendazole anddiethylcarbamazinecitrate (DEC) oralbendazole andivermectin in countriesco-endemic foronchocerciasis for aminimum of 5 years.Morbidity managementthrough hygiene ofaffected limbs andhydrocele surgery.Integrated vectorcontrol particularly inareas where Anophelesis the vector andmalaria is co- endemic(bednet usage).Treatment ofcommunities atrisk of transmission(formerly hyper andmeso endemic) byannual communitydirected treatmentwith ivermectin. Forelimination there isa need to roll outtreatment to areasof low endemicityformerly untreated.The WHO Roadmap forImplementation sets a targetof elimination of lymphaticfilariasis as a public healthproblem by 2020.The WHO Roadmapfor Implementation setsa target of eliminationof transmission usingivermectin by 2020 inselected African countriesand in the endemicfoci in Latin Americaby 2015. Eliminationachieved in Equador andColombia. Elimination ofall transmission in Africaby 2025.41.8% of people atrisk currently receivetreatment. 73 countriesendemic. 5.6 billionpeople treated in 2013.MDA implementedin 60 countriesof which 15 havestopped MDA andstarted surveillance;22 have achieved100% geographicalcoverage and 23 areconducting MDA buthave not reached allendemic areas. MDAhas not started in 13countries consideredas requiring preventivechemotherapy toeliminate LF.65.7% of people at riskof currently receivetreatment.Poorly constructedlatrines facilitatingbreeding of the Culexmosquito vector,which transmits themicroscopic diseasecausingworms fromperson to person.The blackfly vector,which transmits filarialworms, breeds infast-flowing rivers andstreams. The maincontrol measure isinsecticide treatmentof larval breedingsites. Water-flowmanipulation has beenpractised in somecountries for vectorcontrol purposes.Severe forms ofthe disease includeswelling of thelimbs and, in men,of the scrotum, aswell as thickeningof the skin leadingto disfigurement(Elephantiasis).All can lead topermanent disability.People with chronicLF disabilities needto maintain rigorouspersonal hygieneusing large quantitiesof water and soap toprevent secondaryinfection. Peoplewith LF are oftensubject to stigma,leading to povertyand exclusion, andfurther challenges toaccessing WASH.Chronic skin diseasemay lead to soresand wounds; cleanwater and hygieneare essential forgood woundmanagement, athealth facility leveland at home.Visually-impairedindividuals rely onassistance fromsighted people(often children whoare prevented fromgoing to schoolby taking care ofdisabled relatives).16

Factsheet on common NTDsNTD Symptoms / disabilityPodoconiosis Long term exposure toirritant mineral particlesin genetically susceptiblepeople triggers anabnormal inflammatoryreaction, impairing lowerlimb lymphatic function.Schistosomiasis Disease is caused byrepeated infection withschistosome parasites.Symptoms are due tothe body’s reactionto the parasite eggs.Infection in children cancause abdominal pain,haematuria, anaemia,stunted growth andreduced ability tolearn, leading to severedamage of the liverand urogenital tract inadvanced cases.Soil-transmittedhelminthiasesInfestations with 4species of nematodesare collectively referredto as soil-transmittedhelminthiases: Morbidityis related to thenumber of wormsharboured. People withlight infections usuallyhave no symptoms.Heavier infectionscan cause a range ofsymptoms includingintestinal manifestations(diarrhoea, abdominalpain), general malaiseand weakness, andimpaired cognitive andphysical development.Hookworms causechronic intestinal bloodloss that can result inanaemia.Number of peopleat risk globally 1 Global DALY burdenCurrent Methodof treatmentand preventionEstimates are stillincomplete, butrecent mappingsuggests 80 millionpeople living inareas conducivefor podoconiosisworldwide.N/A Prevention of exposureto soil through use offootwear. Morbiditymanagement throughhygiene of affectedlimbs (requires accessto water), bandagingand footwear.249 million peoplerequire treatmentworldwide, at least90% reside in Africa.700 million peopleliving in at risk areas.3.31 DisabilityAdjusted Life Years 2 .Reducing diseasethrough periodic,large-scale treatmentof at-risk populationgroups, includingschool-aged childrento entire communitiesliving in highly endemicareas, with praziquantel(40 mg/kg). Controllingtransmission throughaccess to safe water,improved sanitation,hygiene education andsnail control.890 million peopleliving at riskworldwide.5.18 DisabilityAdjusted Life Years.PreventativeChemotherapywith albendazole ormebendazole andimproved watersanitation and hygiene.Target for controlelimination and target yearto be eliminatedNo elimination target hasbeen set by WHO yet. TheInternational PodocniosisInitiative vision is ‘a worldfree of podoconiosis in ourlifetime’.The current WHO GlobalStrategy for schistosomiasisis to control morbidity dueto schistosomiasis by 2020;to eliminate schistosomiasisas a public health problemby 2025; to interrupttransmission in selectedregions, and in selectedcountries in the Africanregion by 2025.The current WHO GlobalStrategy for soil-transmittedhelminthiases from 2011-2020 is to control morbiditythrough the periodictreatment of at-risk peopleliving in endemic areas. Theglobal target is to regularlytreat at least 75% of allschool-age children at risk ofillness from soil-transmittedhelminths by 2020. Progressmade by each country ismeasured against this target.Percentage of atrisk population WASH:receiving treatment 2 Disease preventionOnly a small proportionof infected peoplereceive appropriatetreatment.Both prevention andtreatment requireaccess to clean waterfor foot hygiene.16.9% of people at riskreceived treatment in2012 (42.1 million).Exposure occurs ininfested freshwaterduring agricultural,domestic, occupationaland recreationalactivities. Controlmeasures include snailcontrol in freshwaterbodies; improvedsanitation; increasedaccess to safe water;hygiene education topromote behaviouralchange to reducecontamination of, andcontact with, unsafewater.31% of pre-school andschool-aged children atrisk of currently receivetreatment.Improved sanitation,especially in schools, toeliminate contaminatedfaeces and urinefrom reaching surfacewater can reduce oreliminate transmission,by preventing wormeggs in faeces andurine from enteringwater. Some speciescan be transmittedthrough animal (cow,buffalo) urine or faeces,necessitating protectionof freshwater fromanimals/animal wastecontact.WASH:Care and disability17

Trachoma A bacterial infectionthat causes repeatedconjunctivitis. Repeatedinfections can turnthe eyelid inwardsmaking the eyelashesscratch the surface ofthe eyeball (trichiasis).Prolonged scratchingof the cornea by theeyelashes can lead toirreversible blindness.Trachoma is the world’sleading infectious causeof blindness.Approximately 232million people live intrachoma-endemicdistricts (WER 2014).0.33 DisabilityAdjusted Life Years 2 .(Global Burden ofDisease Study 2010).The WHOrecommended SAFEstrategy-Surgery ofeyelids, Antibiotics totreat the communitypool of infection,Facial cleanliness toreduce transmissionand Environmentalimprovements toreduce the numberof flies people comeinto contact with. TheWHO recommends2 antibiotics fortrachoma control:oral azithromycinand tetracycline eyeointment.The 2011 WHO Roadmapfor Implementation setsa target of eliminationtrachoma as a public healthproblem by 2020.24% of people at riskof currently receivetreatment (WER 2014).Facial cleanlinessand environmentalimprovement arethe preventivecomponents of theSAFE strategy fortrachoma elimination.Face washing removesthe bacterial dischargefrom eyes andinterrupts transmissionby eye-seeking moscasorbens flies, fingersand fomites. Thisrequires access towater. Environmentalimprovement includesproper sanitation fordisposal of excreta toreduce fly population.TrachomatousTrichiasis (the severeform of the disease,in which surgery isneeded) surgery forblinding trachomarequires cleanwater and hygienicconditions; visuallyimpairedindividualsrely on assistancefrom sighted people(often children whoare prevented fromgoing to schoolby taking care ofdisabled relatives).18

This report was authored with the support of the UK Coalition against Neglected Tropical Diseases.The Coalition is a collaborative effort by UK organisations that are actively engaged in NTD researchand implementation and in advocating for effective and sustainable NTD control programmes.For more information about the coalition contact: Francis Peel (f.peel@imperial.ac.uk)For information about joining the Coalition contact: Joan Fahy (fahy@liv.ac.uk)www.ntd-coalition.orgTwitter @UK_NTD