Thought for World Leprosy Day - The Leprosy Mission

by Katherine Jones, Media and Communication Officer, The Leprosy Mission England and Wales.

World Leprosy Day is commemorated every year on the last Sunday in January. The day was chosen to coincide with the anniversary of Mahatma Gandhi's death in 1948. Gandhi was himself a champion of people affected by leprosy.

Leprosy is just one of many NTDs that still threaten millions of people worldwide today. Like other NTDs, it is usually the poorest and most marginalised who are most at risk. The Leprosy Mission is working with other NTD-focused organisations, including ILEP, World Health Organization, Novartis Foundation and Leprosy People’s Organisations as part of the Global Partnership for Zero Leprosy, a consortium striving to end this ancient disease.  The focus is around 3 main goals:

ZERO TRANSMISSION – ZERO DISABILITY – ZERO DISCRIMINATION

That leprosy transmission is stopped - over 200,000 new cases of leprosy are diagnosed worldwide every year, that is one person newly diagnosed every two minutes.

That the lifelong disabilities caused by the late detection of leprosy are prevented - over six million people worldwide suffer from serious physical impairments or mental illness caused by leprosy, many of whom require surgery or rehabilitation.

That the laws and practices that actively discriminate against people affected by leprosy are repealed or stopped - 157 laws across 29 countries actively discriminate against people affected by leprosy. Read more about leprosy related stigma and discrimination here from ILEP (the International Federation of Anti-leprosy Federation).

Within each of the Three Zeros, critical concerns need to be addressed if leprosy is to be defeated in our lifetime. 

We need investment in research to develop a cost effective early diagnostic test and to train both public and private sector health workers to recognise and treat leprosy. Government commitment to active case detection and early diagnosis is essential to stop the transmission of the disease. This must be achieved, ideally using cross NTD approaches, if we are to prevent impairments and lifelong disabilities - particularly in children.     

Recent data from the World Health Organization, shows that the proportion of children newly diagnosed with leprosy (out of the total of all people newly diagnosed) is a shocking 9%. This indicates that the transmission of infection is recent and ongoing in many poor communities. Yet it seems likely that the percentage is significantly under reported due to limited active case detection, and, that Government data collected for leprosy in children is based on a child age of under 15 years and not 18 years as per the UN Convention on the Rights of the Child.  We are failing our children.  

This World Leprosy Day, The Leprosy Mission calls on Governments, NGOs, Alice Cruz (The UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy), the World Health Organization, the Global Partnership for Zero Leprosy and ILEP members to address this under-reporting of children affected by leprosy and ensure the accurate reporting of child cases (under 18 years). Only when we have the correct data will programmes be able to assess the true situation and ensure services reach children most at risk; children like Mahendra.

Mahendra

In 2015 Mahendra's leg was amputated when he was 15

Mahendra is from Janakpur in the south-eastern Terai region of Nepal. Like most of the Nepalese population, his family farm for a living.

At 10 years’ old, he developed cracked, dry skin on his feet and lost the sensation in his toes. The cracks gradually enlarged, became infected and developed into ulcers which did not heal. His family took him to over 20 private hospitals to try to treat the condition, but the diagnoses were wrong, and the treatments didn’t work. Meanwhile his ulcers worsened, and he developed clawed fingers. By 14 years’ old, he had already lost several toes. He finally received a diagnosis of leprosy at Lalgadh hospital.

Upon receiving the diagnosis, Mahendra was rejected by his father and told not to return home from Lalgadh. He said, “my father hated me. He thought he would catch leprosy from me. He didn’t want me around.”  So, he stayed at Lalgadh where he was treated with multi-drug therapy. Although treated for the disease, the lack of sensation in his feet worsened and he continued to injure himself. At the age of 15, he suffered a severe fracture and was referred to The Leprosy Mission’s Anandaban hospital (for more information see Heal Nepal).

Mahendra was assessed by the doctors at Anandaban and told that the injury and tissue infection was too severe to be repaired or treated. He needed an amputation below the knee. 

In 2018 Mahendra had plastic surgery to his hand

After several months, he was ready to return home with a prosthetic limb made at the hospital. He hoped that his father would accept him, but he didn’t think it was likely.

Despite repeated phone calls, Mahindra’s father will not permit him to return home.

When Mahendra leaves Anandaban Leprosy Hospital, Neal, he will move to a leprosy community outside Kathmandu. However, his damaged hands may make it difficult for him to earn a living.  

Leprosy is classified as a Neglected Tropical Disease by the World Health Organization.

Leprosy is a mildly infectious, chronic disease caused by a slowly growing bacterium, Mycobacterium leprae. It can be completely cured by antibiotics known as multidrug therapy or MDT. If left untreated, leprosy causes immense physical suffering and disability, such as nerve damage, blindness and disfigurement of the face and limbs. Its characteristic lack of sensation can lead to injury and loss of fingers, toes or even limbs. The impairments, social stigma and discrimination often mean those affected experience poor mental health.

Interventions are wide-ranging and holistic, not just addressing the disease itself but also ensuring social inclusion and quality of life.  As well as medical work, areas of activity include counselling, housing, water, sanitation, education, employment, advocacy and empowerment.

The Leprosy Mission (TLM) is an international Christian development organisation striving to defeat leprosy and transform lives. It serves people affected by leprosy, other neglected tropical diseases and disability.  The England and Wales office currently focuses its work in 10 countries where leprosy remains both a chronic disease and a social challenge: Bangladesh, Ethiopia, India, Mozambique, Myanmar, Nepal, Niger, Nigeria, Sri Lanka and Sudan.

TLM works with organisations that are specialised in other NTDs to develop joint approaches to disease and disability prevention. NTDs which can be treated easily alongside leprosy include: lymphatic filariasis, trachoma and Buruli ulcer.  

How the NNN is bringing sectors together to beat NTDs and achieve health for all

by Prof KH Martin Kollmann, Leah Wohlgemuth

In 2016, in order to define how stakeholders can work together to implement cross cutting approaches, the Neglected Tropical Disease NGO Network (NNN) published The BEST framework: A comprehensive approach towards NTDs. This framework provides NTD stakeholders with a comprehensive conceptual approach for NTD programming and details the diverse cross-sectoral efforts needed to reach control, elimination and eradication targets. 

Prof KH Martin Kollmann

BEST, an acronym for Behaviour,Environment, Social inclusion and Treatment and care, moves away from mass-treatment-focused medical approaches, such as preventive chemotherapy, and integrates the broader causes and social effects of NTDs. As a conceptual framework, BEST promotes human rights based comprehensive and inclusive NTD work that is based on cross-sectoral collaboration and an effective continuum of care from promotion to prevention, treatment, rehabilitation and care. As such it includes the cross cutting components of Water, Sanitation and Hygiene (WASH) as well as Disease Management, Disability and Inclusion (DMDI) as central to success and sustainability.

This paradigm shift requires engaging with and working holistically with a broad range of development stakeholders. It includes actively involving people affected by NTDs at all stages of programs, from conception and planning to implementation, monitoring and evaluation, and embedding cross-sectoral approaches and systems thinking into NTD work. To support this transition a range of NNN cross cutting groups, such as the WASH Working Group and the DMDI Working Group, have been established, bringing together a diverse range of stakeholders to share experiences, develop tools and identify preferred practices for comprehensive programming.

Through the DMDI Working Group, strategies are in development to improve and mainstream the inclusion of people affected by NTDs and other marginalized groups in all work. These complement and support other stakeholders’ efforts to design participatory and inclusive programs in accordance with the BEST framework. 

A key priority of the WASH Working Group is the promotion of "inclusive WASH", an approach to increase universal access and the active and meaningful participation of affected people. Inclusive WASH recognizes that marginalized and vulnerable people bring a unique insight to NTD programs and should be consulted at all stages of NTD programs to make them accessible and inclusive. People who have experienced disease, disability, stigma and social exclusion take the programs closer to the communities they are designed to benefit. This helps to ensure that infrastructure, such as hand and face washing stations and latrines are accessible and appropriate to people with disabilities. 

Furthermore, because WASH activities to prevent diseases like trachoma, schistosomiasis and soil transmitted helminths are often conducted in schools, careful planning is required to ensure children with disabilities, who are often excluded from schools, can access interventions and participate in these programs. 

Leah Wohlgemuth

Sharing lessons between these groups has led to a stronger understanding of the importance of social inclusion and more systematic engagement of disabled persons and women in WASH and NTD programs. Organizations seeking to use the BEST framework can learn from these experiences and engage in these platforms to increase program effectiveness. 

Similarly, through task groups on “Indicators, Mapping and mHealth”, “Interventions”, “Mental Wellbeing and Stigma”, “Participation, Inclusion and Human Rights” and an upcoming group on “Livelihoods”, the DMDI Working Group is working on strategies and resources, such as guidelines on mental health and NTDs in collaboration with WHO. A dynamic cross-cutting NTDs, Morbidity and Disability (NMD) toolkit, which addresses the urgent need for quality data on disease complications and other aspects of disability among NTD affected persons, is available online. 

The success of such cross cutting groups is evident as more stakeholders working on NTDs look to engage partners working across sectors and adopt cross cutting approaches. Over the last year, three new NNN cross cutting groups have formed, on Skin Related NTDs, Integrated Vector Control and Conflict and Humanitarian Emergency. Further information on these cross cutting issues is also being shared on infoNTD, an online portal dedicated to making cross cutting NTD resources easily available.  

The importance of cross-sectoral collaboration and cross cutting approaches are also being increasingly recognized by donors who have started to specifically include details about behaviour, environment and social inclusion along with preventive chemotherapy and morbidity management in their funding requirements. For partners who are developing comprehensive and inclusive programs, this provides the opportunity to mobilize additional resources, build the evidence and enhance advocacy as the value of such holistic NTD work to broader development issues is more and more recognised. 

Comprehensive and inclusive NTD programs move beyond achieving direct progress on Sustainable Development Goal 3.3, calling for an end to NTDs. Through cross-sectoral collaborations, comprehensive approaches to NTD programs will play a vital role in the achievement of other SDGs relating to poverty (SDG 1), quality education (SDG 4), gender equality (SDG 5) and clean water and sanitation (SDG 6). The BEST framework provides an important opportunity for the NTD community to leverage broader development benefits and contribute to the strengthening of health systems.  This enhanced systematic engagement of affected people, cross-sectoral partners and the NNN working groups, will help to expand and forge new partnerships, develop and refine strategies to ensure that programs remain effective and efficient in reaching the world's most marginalized people. 

About the authors: 

Leah Wohlgemuth is Chair of the WASH Working Group and Regional Technical Advisor at Sightsavers

Professor KH Martin Kollmann is Chair of the DMDI Working Group and Senior Advisor NTDs at CBM

This blog was originally published by the International Coalition for Trachoma Control to mark Universal Health Coverage Day 

The economic impact of Neglected Tropical Diseases on Women and Girls: exploring the evidence

UKCNTD briefing paper, April 2017 

Background

 

Women and girls are disproportionately affected by NTDs due to both biological and social factors, and tend to shoulder the burden of caring for family members affected by these diseases. NTDs further exacerbate existing inequalities and the impact of NTDs can compound stigmatisation and increase barriers to inclusion faced by women. This is likely to have a profound impact on the economic prospects of women and girls, and, by implication, on their communities and societies.  

The new ambition catalysed by Agenda 2030 to ‘leave no one behind’ and eliminate poverty makes clear that interventions to achieve this must begin with the poorest communities and those excluded from society and from accessing all services. Achieving shared prosperity and sustainable development is impossible without addressing the rights and health of women and girls – and this is certainly true for the SDG target of ending the epidemic of NTDs. To deliver on this health and development commitment, it is essential to address the particular impact of NTDs on women and girls. To redress health inequalities and their determinants the NTD community must protect and promote the health and rights of women and girls. 

This brief uses currently available evidence to take stock of the economic impact of NTDs on women and girls and draw attention to the consequences and costs of failing to address these impacts at appropriate points in their lives, to formulate policy recommendations and programme solutions. A fully-referenced report will be made available at a later date.

Evidence on Economic Impacts of NTDs 

 

The economic impact of NTDs on the lives of women and girls is multi-faceted and intimately linked with their social status and roles within society.

Stigma 

 

Many NTDs cause highly visible and stigmatising effects, such as deformation and scarring. Reasons for stigmatisation are similar across conditions, and include fear of contagion, being a burden on family, and the inability to fulfil gender roles. Stigma significantly affects the social and economic prospects particularly for women, both in terms of family life and formal employment. Emerging evidence suggests women are often particularly marginalized by stigma resulting from NTDs. In a qualitative study of lymphatic filariasis, women reported avoiding or delaying treatment, being shunned by partners, losing work opportunities and losing marriage prospects and career aspirations due to stigma and disability. Beliefs around aetiology of disease mean women are often thought to be to blame for their illness. In women, urinary schistosomiasis is considered to be a venereal disease with associated stigma, while it is considered a sign of virility in young men.

Reproductive and Maternal Health 

 

Anaemia is a common complication in pregnant and breastfeeding women, and is exacerbated by certain NTDs, leading to adverse maternal outcomes, low birth weight and infertility. NTDs can also increase the risk of HIV infection. Onchocercal skin lesions have been shown to significantly reduce duration of breast feeding due to itching. Although lymphatic filariasis itself does not generally affect perinatal outcomes, women with lymphatic filariasis have been reported to have poorer outcomes on account of being the least favoured wife in polygamous families, with resulting poorer access to antenatal and maternal health care.

The reproductive cycle can also be a substantial obstacle to accessing treatment programmes, compromising the health of both mother and child. The links between birth weight, breast feeding and overall infant health and development are well-established. Caring for children, as well as for sick family members, is often the responsibility of women, shortening their working day and restricting the types of economic activity they can participate in.

Accessing Treatment

 

In many settings where women are subject to a disadvantaged position in the household, they also have limited autonomy, limited ability to access resources and to access care outside the home. Consequently, women are known to access formal health services less frequently than men, despite having similar or higher burden of disease.  Accessing formal care can be difficult for women due to household responsibilities. This complicates treatment of certain diseases, for example leishmaniasis, where inpatient and/or daily outpatient visits may be required to manage toxicity. Inability of women to attend leads to higher morbidity and mortality. Stigma associated with leprosy also means male family members can be reluctant to escort women to formal health services, leading to poor treatment compliance. 

When accessing formal health care, women may face issues of staff demanding bribes, being rude and condescending, blaming women for their own ill health, and failing to provide a private environment for consultation. Cultural attitudes to physical examination mean lesions on breasts and genitalia, e.g. from lymphatic filariasis, can remain undetected as only arms and legs are examined. Some, but not all, treatments available for NTDs are safe for women who are pregnant and/or breastfeeding; however, lower skilled health workers are often not confident about these restrictions. Many women opt to skip treatment during pregnancy and breastfeeding, and as this can take up a significant proportion of their reproductive years, this means many women repeatedly miss treatment and are susceptible to more severe complications.

Women reportedly have a greater tendency to access informal care such as traditional healers, particularly for stigmatised NTDs such as leprosy, but also other stigmatised conditions such as TB and certain gynaecological conditions. However, methods of treatment for cutaneous leishmaniasis can include use of battery acid, gunpowder, petroleum and hot metal objects, which can exacerbate disfiguration and lead to tissue necrosis.

Summary 

 

The impact of NTDs on women and girls is embedded in the social structures around them. Stigma related to disfigurement and fear of contagion leads to social isolation and limited prospects for employment or marriage. Deteriorating socio-economic status in turn can lead to greater risk of contracting NTDs and suffering adverse outcomes. This vicious cycle is illustrated below.

Cycle of events linking NTDs, clinical, 
social and economic outcomes

 Click to download this briefing paper [pdf]

This briefing paper was prepared by David Tordrup on behalf of the UKCNTD

Partnership and progress – building systems to achieve neglected tropical disease elimination

Huge progress has been made in the past four years in the fight against neglected tropical diseases, but the NTD community has a daunting challenge ahead if it is to meet elimination targets. What can be done to combat this?

The Uniting to Combat NTDs report Reaching the Unreached- Fourth progress report of the London Declaration on Neglected TropicalDiseases released today centres on partnership and progress.

It reflects what has been achieved and what’s worked, as well as underlining areas the NTD community must focus on to continue to deliver progress.

We know that addressing these diseases can unlock major reductions in health inequality and pave the way to better health for the world’s poorest people. 

By joining forces to fight NTDs, partners have come together to make huge strides in the four years since the London Declaration was signed and the successes, highlighted in the UTC report launched today are truly extraordinary: 

• We are reaching more people than ever with much needed treatments - in 2015 alone 2.4 billion tablets were donated, leading to 1.5 billion treatments.
• Our understanding of the disease burdens grows stronger with each disease and country that is mapped – most notably we have now mapped the world for trachoma in the largest infectious disease mapping project ever undertaken, with 2.6 million people examined with WHO-standardised Global Trachoma Mapping project methodologies in 29 countries (representing a population of 224 million). 
• We’ve seen global political acknowledgement of NTDs with their inclusion for the first time in and international development framework under Sustainable Development Goal 3 on good health and well-being. 
• In 18 of 37 countries endemic for LF MDA has been stopped and we’re now into a post-MDA surveillance phase. 

Yet despite these staggering achievements, if we continue along the current trajectory we’ll struggle to reach global targets to eliminate these horrendous, painful and often debilitating diseases.

The London Declaration recognises the importance of advancing research and development for the next generation of interventions for NTDs. As we approach elimination for some NTDs we will need more sensitive technologies to diagnose the last few cases. Having a full arsenal of tools including drugs, diagnostics and vaccines, to complement existing treatment will be critical in the drive to achieve elimination.

The question is: what can be done to safeguard the huge gains we have made to date and address the barriers that stand between meeting our targets?

In 2012 Margaret Chan, Director General of the WHO, noted that, "If adequate sustainable capacity is not built into national health plans and strategy, it is unlikely that such a large number of endemic countries will simultaneously be able to scale up their programmes."

It is well recognised that strengthened health systems are vital to maximising the impact of current and future investments in NTDs. But addressing this challenge in practical terms is tough. 

Strengthening national systems

In many countries ravaged by NTDs national systems struggle to support the delivery of donated treatment or to reach communities with surgical interventions or hygiene promotion and behaviour change services. They face understaffing, inadequate resources and must contend with challenges such as migration and a paucity of services in rural areas.

Elimination requires broader system strengthening alongside new treatments and data collection, yet understanding the complex interactions of targeted NTD programmes and opportunities to engage with efforts to build health systems is exceedingly challenging.

Responding to the Sustainable Development Goals

To truly respond and contribute to the achievement of the Sustainable Development Goals we will need to continue this evolution and focus on new areas, including: equity in service delivery; building surveillance systems that will deliver and endure; and embedding actions to address the social and environmental risk factors that allow these diseases to flourish in the first place.

Staying ahead of the game

Health system strengthening within an NTD context is vital to address systems barriers to achieving elimination and to support scale-up of services and sustain progress. To stay ahead of the game in driving progress we need to agree and pursue clear pathways to health system strengthening.

The NTD community needs to continue to contribute to efforts to strengthen systems to create the right environment to achieve the elimination of NTDs and ensure that those systems are strong enough to sustain elimination.

Report Launch: Investments in Neglected Tropical Diseases are one of the Best Buys in Development

Third progress report since the London Declaration on NTDs shows strong endemic country leadership, calls on partners to scale up efforts in order to reach WHO targets.

London, United Kingdom, 25 June 2015 — A new report by Uniting to Combat NTDs highlights dramatic health and economic benefits from investing in combating neglected tropical diseases, making it one of the best buys in development.

The report, entitled Country Leadership and Collaboration on Neglected Tropical Diseases and launched today in London, comes on the heels of increased attention to NTDs at the World Health Assembly and inclusion in the recent G7 Leaders’ Declaration. The report finds that countries are increasingly taking ownership of NTD programmes, have started providing new funding and are pursuing innovative approaches to combat these devastating diseases. Yet while these new methods have produced substantial progress, further scale-up is necessary to reach the World Health Organization’s (WHO) 2020 targets.

“It is encouraging to see increased state-level engagement and strong leadership towards ownership of national control programs,” said Dr. Dirk Engels, WHO Director of the Department of Control of Neglected Tropical Diseases. “Sustained political commitment, innovative domestic financing and greater coordination can bring about game-changing treatments and care to millions of people and improve the prospects of achieving WHO’s goal of universal health coverage against NTDs.”

Helen Hamilton speaking at the UKCNTD co-hosted afternoon

of debate and presentations by leading stakeholders from the 

NTD community

Helen Hamilton speaking on behalf of the UKCNTD, said “This report recognises that investments in NTDs are truly a health and development ‘best buy’. NTDs affect over a billion people worldwide, so it’s absolutely crucial that we step-up investment and political commitment to reach our 2020 goals.

With the Sustainable Development Goals (SDGs) set to be agreed later this year, 2015 is a once-in-a-generation opportunity to embed efforts to tackle NTDs in a global framework. The UKCNTD is committed to working with the new UK government to champion the fight against these devastating diseases on the global stage.”


Country Leadership and Collaboration on Neglected Tropical Diseases is the third progress report since a diverse public-private coalition of partners endorsed the 2012 London Declaration on NTDs, committing to achieve the WHO’s 2020 targets for 10 NTDs: diseases of poverty that that affect one in six people worldwide.

NTD Programmes Provide an Enormous Return on Investment

NTDs keep children out of school, parents out of work, and cause stunting and impaired brain development, locking societies into endless cycles of poverty. According to the report, if countries achieve WHO’s 2020 targets, healthier citizens would generate an estimated US$623 billion in increased productivity between 2015 and 2030 – meaning that for each $US1 invested in NTD scale-up, endemic countries would see productivity gains of US$51 from 2015-2020 and US$184 for 2021-2030.

The report also shows for the first time the full burden of illness, disability, and deaths caused by NTDs, finding it at the same order of magnitude as the “Big Three” diseases: HIV/AIDS, tuberculosis and malaria.

Affected Countries are Increasingly Leading the Fight against NTDs

Endemic countries are increasing domestic funding for NTDs and innovating to find new ways to deliver critical drugs. In doing so, they are improving coverage rates and making strides toward eliminating these diseases, with many already achieving elimination goals for individual diseases.

Key statistics:

• Global coverage is increasing: approximately 785 million people (43% of at-risk populations) were reached with at least one drug, compared to around 35% in 2008.
•  126 cases of Guinea worm disease were reported in 2014, a staggering 99.99% drop since 1986. Only 5 cases have been reported so far in 2015. 
• Of the 81 countries endemic for Lymphatic filariasis (LF), 25 countries (31%) are no longer in need of mass drug administration (MDA), including 10 which have successfully eliminated transmission. 
• Fewer than 4,000 new cases of human African trypanosomiasis (also known as sleeping sickness) were reported to WHO last year, the lowest level in at least 75 years.

Since December 2014, 27 Ministers of Health pledged to take ownership and increase local investment in NTD efforts as part of the Addis Ababa NTD Commitment. Several countries have already taken on primary responsibility for financing their NTD programs: Bangladesh and the Philippines pay for 85% and 94% of their NTD programs, respectively, and Honduras recently became the first Latin American country to launch a national NTD programme fully financed by the government.

"The global effort to control and eliminate neglected tropical diseases must be led by the countries themselves,” said Kesetebirhan Admasu, Minister of Health, Ethiopia. “Through the Addis Commitment, and with the support of the international community, we will do whatever is necessary to see an end to these terrible diseases."

Global Coalition, Including Private Sector, Champions New Way to Help World’s Poorest

The backbone of these efforts is a diverse and committed public-private partnership that champions a new way of improving the lives of the world’s poorest people. As part of this partnership, pharmaceutical companies have donated 3.5 billion NTD treatments since the launch of the London Declaration and are committed to donate about $17.8 billion worth of NTD drugs through 2020, making it the largest drug donation programme in the world. Since 2012, there has been a 36% increase in donated drugs.

“Debilitating illnesses like lymphatic filariasis are on the retreat, partly due to public-private partnerships that help make sure donated medicines and essential healthcare reach those who need them most,” said Andy Wright, vice-president for global health programmes at GSK and chair of the Partnership for Disease Control Initiatives. “These collective efforts provide a powerful blueprint for working together to free communities from the burden of disease and enabling them to thrive.”

Other partners are collaborating to find innovative ways to advance NTD progress. This includes the Global Trachoma Mapping Project, the largest infectious disease mapping exercise in history; the formation of a Global Schistosomiasis Alliance to improve coverage for the disease and galvanize progress; an NTD modelling consortium aimed at better understanding effective control strategies in particular settings; and innovative research into new drugs, diagnostic tools and operational approaches.

Confronting Challenges

Despite progress, the report identifies several areas where progress must be accelerated:

• Coverage rates: While more people are being reached, improvement in many places remains too low to achieve set goals. A scorecard released with the report shows progress against schistosomiasis lags behind other diseases despite the availability of a simple treatment.
• New diagnostics and tools: Reaching WHO roadmap targets for a number of these diseases relies on new diagnostics and tools, some of which are still in development, underscoring the importance of prioritizing research and development.
• Funding: Scaling up programmes to address these gaps requires additional funding. The report cites an annual delivery funding gap of US$200-300 million between now and 2020. The WHO estimates that low- and middle-income countries could fully fund their share of universal coverage against NTDs with less than 0.1% of domestic spending on health.

"We have known for some time that investing in NTDs is a best buy in development,” said Lisa Rotondo, Project Director at RTI International. “There are still challenges ahead, but the NGO community is committed to reaching the targets established by WHO, and we welcome additional collaborators in support of endemic countries."

G7 leaders commit to the NTDs fight

The G7 Summit was held in Krün, Germany on June 7–8, 2015.

The Coalition is delighted to report that the Leaders Declaration developed following the Summit discussions included the following paragraphs on Neglected Tropical Diseases:

Click image to download Declaration

"We commit ourselves to the fight against neglected tropical diseases (NTDs). We are convinced that
research plays a vital role in the development and implementation of new means of tackling NTDs. We will work collaboratively with key partners, including the WHO Global Observatory on Health Research and Development. In this regard we will contribute to coordinating research and development (R&D) efforts and make our data available. We will build on efforts to map current R&D activities, which will help facilitate improved coordination in R&D and contribute to better addressing the issue of NTDs. We commit to supporting NTD-related research, focusing notably on areas of most urgent need. We acknowledge the role of the G7-Academies of Science in identifying such areas. In particular, we will stimulate both basic research on prevention, control and treatment and research focused on faster and targeted development of easily usable and affordable drugs, vaccines and point-of-care technologies.

As part of our health system strengthening efforts we will continue to advocate accessible, affordable, quality and essential health services for all. We support community based response mechanisms to distribute therapies and otherwise prevent, control and ultimately eliminate these diseases. We will invest in the prevention and control of NTDs in order to achieve 2020 elimination goals.

We are committed to ending preventable child deaths and improving maternal health worldwide, supporting the renewal of the Global Strategy for Women’s, Children’s and Adolescents’ Health and welcoming the establishment of the Global Financing Facility in support of “Every Woman, Every Child” and therefore welcome the success of the replenishment conference in Berlin for Gavi, the Global Vaccine Alliance, which has mobilized more than USD 7.5 billion to vaccinate an additional 300 million children by 2020. We fully support the ongoing work of the Global Fund to fight AIDS, Tuberculosis and Malaria and look forward to its successful replenishment in 2016 with the support of an enlarged group of donors. "

Download The Full Declaration

Triple jeopardy: tackling the discrimination facing girls and women with leprosy

Girls and women with leprosy are triply discriminated against because of their gender, the disabilities that can result from the disease and the impact of its stigma is the key message of a new report by the International Federation of Anti-Leprosy Associations (ILEP).

The report which is published on 6th March 2015  highlights practical actions which need to be taken so that healthcare systems cease to fail girls and women by detecting leprosy early enough to prevent disability and remove barriers to inclusion in society.

“Triple jeopardy: tackling the discrimination facing girls and women with leprosy” emphasises that women in some countries are less likely than men to be diagnosed early.  Improved access to diagnosis and treatment are essential for a better outcome.

The report warns that the new United Nations Sustainable Development goals, due to be agreed in October 2015, will fail in their aim to “leave no one behind” if discrimination against girls and women affected by leprosy is not tackled.  They have become invisible and lost their rights to health, education, employment and to marry and have a family.

Late detection and diagnosis is caused by the lack of access to information, education and literacy.  A very real fear that the stigma of leprosy can lead to rejection by the family and wider community can result in girls and women ignoring or hiding their early symptoms.

“When I got this disease, the attitude of the family and society changed completely.  They deserted me, which made me heartbroken even more and made me think, why is this happening?”

Rachana, Lokdoot (Community Health
 Ambassador) with  Lepra in India

Rajobala Dutt lives at The Leprosy Mission’s Purulia snehalaya (mercy home) in West Bengal, India, where older people affected by leprosy who have nowhere else to go are cared for.

She said:  “Someone told my husband my symptoms were that of leprosy and that he should take me away from the village and leave me to die.  He was told by the villagers that he had to choose between his wife and living in the village.  If I remained he would not be allowed to use the water or get employment.  So my husband told me to go away and die somewhere and that he would dig the grave.”

Thankfully Rajobala came into contact with The Leprosy Mission and her leprosy was treated.