Saturday, 7 March 2015

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.

Tuesday, 24 February 2015

Parliamentary Launch for UKCNTD's Annual NTD Report

Great strides have been made in the battle against Neglected Tropical Diseases but more needs to be done for the 1 in 5 people whose lives are still blighted by these diseases. This is one of the key messages of the 2014-2015 Report for the All Party Parliamentary Group (APPG) on Malaria and Neglected Tropical Diseases (download ), launched at a special meeting in the UK Houses of Parliamentary on Tuesday 24th February.

The report outlines the advances that have been made over the last 12 months to control and eliminate diseases which affect 1.4 billion of the world’s poorest people through mortality, morbidity, disability and stigma.

NTDs are a key barrier to attainment of global development goals and poverty reduction.

Jeremy Lefroy MP, Chairman of the APPG, said:

“Ebola has shone a spotlight on the importance of building health systems to address challenges such as insufficient numbers of qualified health workers and inadequate surveillance and information systems equipped to respond rapidly to new and existing health challenges. Neglected Tropical Diseases affect the world’s poorest communities. They must remain a global health priority post-2015.”

The Coalition makes eight recommendations. The report encourages the UK Government to:
  • maintain its financial commitment to NTD programmes
  • ensure that the Department for International Development (DFID) disability framework and forthcoming health system framework support a response to NTDs
  • ensure that DFID supports country governments to equip their health systems to deliver essential NTD interventions
  • support the full range of research and development for NTDs
  • promote a cross-sectoral NTD response
  • promote the partnership model exemplified by the NTD response
  • continue to champion international investments for NTDs by supporting the inclusion of NTDs in the Sustainable Development Goals
  • highlight the successes achieved with UK government investment and urge other governments and institutions to contribute more to the fight against NTDs

Good, competent, transparent government, specialist expertise and more health workers are all necessary ingredients to combat NTDs.

Helen Hamilton, Chair of the Coalition said;

“In the last five years of this Parliament much progress has been made. Due to the commitment of the government the UK is a world leader in fighting these devastating diseases. But we need to maintain and increase this investment if we are to achieve the international community's 2020 target of eliminating and controlling these terrible diseases.”

Download the Annual Report from -

For further information about this report, please contact Francis Peel

Monday, 26 January 2015

Integrating Leprosy and Disability into the Sustainable Development Goals

By Charlotte Walker and Francis Peel on behalf of the UK Coalition against NTDs

World Leprosy Day 2015 on 25 January focuses attention on a truly debilitating disease, but whilst world commemoration days often stand in splendid isolation when it comes to development initiatives the same should not be said for leprosy control and treatment programmes. The UKCNTD believe leprosy-affected people and those living with disabilities need to be included in mainstream and NTD-specific development programmes so that they can experience the same benefits as their able-bodied counterparts.
The UKCNTD believe leprosy-affected people and those living with disabilities need to be included in mainstream and NTD-specific development programmes..

Globally one billion people live with a disability, 80 per cent of these in low and middle income countries (DFID 2014).  Disability is a reality for many of the 1.5 billion people living with the consequences of NTDs.

A Human Right

The UN Convention on the rights of persons with disabilities states that people with disabilities have equal rights and must be included in development processes. Yet many development programmes do not include disability, with claims that it is too expensive, does not offer value for money or is simply too difficult to implement.

Interviews conducted by UKCNTD member, the Leprosy Mission England and Wales, with more than 5,000 leprosy-affected people from nine countries across Africa and Asia revealed that although they had seen changes around them, they did not feel they had benefited from the Millennium Development Goals (MDGs).

2015 provides the global community with an opportunity to put this right. In 2016 the MDGs will be replaced by the SDGs (AKA the Sustainable Development Goals), what exactly these goals are is still open to debate but if we are to reduce poverty and improve the health, education and lives of disadvantaged communities we need to ensure no-one is left behind. We need inclusion to be our watchword.

Walking with heads held high

Disability-inclusive development can have truly impressive impacts on some of the poorest and most marginalised communities. An example of this is the EC-funded Food Security for the Ultra Poor in Bangladesh in which a consortia of development partners provided a range of interventions to poor communities in Bangladesh  The Leprosy Mission provided technical expertise and spearheaded the leprosy and disability components of this life-changing project which has seen more than 900 leprosy-affected families (out of a total of 40,000 beneficiaries) benefit from a new source of income.

Leprosy suffer Momina was provided with livestock
 to enable her to earn a living. 
Image courtesy of Leprosy Mission
The majority are women-headed families, some as a result of their husbands being unable to work because of leprosy-caused disabilities.  Others are leprosy-affected women desperately needing an income.  Women living with disabilities are doubly disadvantaged and subject to high levels of abuse (DFID, 2014).

One woman who has faced these issues is Momina, a 50 year mother of four from Gaibandha in northern Bangladesh. When Momina’s husband found out she had contracted leprosy he divorced her and took their children with him.

Despite being shunned by villagers, Momina’s brother gave her a place to stay.  Her feet are numb as a result of leprosy-caused nerve damage and she cannot walk far without developing ulcers that, if they become infected, could result in her lower legs being amputated.  This greatly limits her earning capacity.  But Momina wants to work, not least to repay the debt she feels she owes her brother.

As part of the project Momina was provided with livestock to earn a living and was able to access rehabilitation services including physiotherapy, occupational therapy and the provision of assistive devices including protective footwear, wheelchair and crutches.  70 per cent of people who received these services noticed positive changes in their ability to perform livelihood activities.

Empowering self-help

Another example of this approach is provided by fellow UKCNTD member, Lepra, which in 2014 led on a project supporting 155 self-help groups in Bangladesh with a total of 1,069 members.

All members are leprosy-affected and as well as offering emotional support to one another, they receive training in self-care and, crucially, skills to rebuild lives and incomes. Over the last three years, beneficiary income has increased by one third in the Bogra district of Bangladesh as a result of the groups.

Disability-inclusive interventions such as these empower individuals to hold their heads up high within their communities by providing them with the ability to live a normal life.

For the sake of people like Momina, the UKCNTD, through its members, will be working with policy and decisions makers so that by World Leprosy Day 2016 the SDGs will enshrine a development approach that is truly inclusive and integrated.

Thursday, 22 January 2015

A Pivotal Year for NTDs

The release of the Bill and Melinda Gates Annual Letter includes a call to action for the international development community to prioritise neglected tropical diseases and commit to ending four diseases – guinea worm, elephantiasis, river blindness and blinding trachoma - by 2030.

As Bill and Melinda Gates have emphasised, we’re at a pivotal moment in the fight to combat neglected tropical diseases (NTDs)- which affect over one billion people living in poverty.

Investment in NTDs is a smart bet- they’re known to be one of the ‘best buys’ in global health. The NTD community knows what works to combat these diseases and has a clear and ambitious plan to end the misery and ill health caused by these diseases.

The UK is a world leader in its commitment to the global effort to rid the world of neglected tropical diseases. UK investments by the Department for International have supported world’s largest disease mapping project for trachoma, and support efforts to make guinea worm only the second human disease in history to be fully eradicated.

"We call on all UK parties to make NTDs a development priority for the next UK government."

2015 is a pivotal year for NTDs.  As we approach the UK general election we call on all UK parties to make NTDs a development priority for the next UK government. The investment made in combatting these diseases to date is paying off and we’re making huge strides. It’s crucial now that we protect these successes and continue to build on them.

Wednesday, 16 July 2014

Nigeria champions integrated approach to NTDs at the World Health Assembly

The first six months of 2014 has already seen a number of milestones reached for the international neglected tropical disease (NTD) community, including the successful NTD-focused side event at the 67th World Health Assembly (WHA) in May and the celebration of progress made on eliminating river blindness by the African Programme for Onchocerciasis Control  at the World Bank.  A running theme throughout the discussions at these events has been the importance of taking an integrated approach to eliminating a number of NTDs by the end of the decade.

UKCNTD's Dr Wendy Harrison.
Image courtesy of US Mission
But what does ‘an integrated approach’ mean in practice? It may mean integration of disease specific interventions into broader public health systems, across different groups of diseases, or integration across sectors. Integration is not just another buzzword, but a real approach to effectively controlling this group of diseases.  Both evidence and common sense tell us that we cannot expect to achieve and sustain our NTD control and elimination goals unless we also tackle the underlying causes – namely the provision of safe water, sanitation and hygiene facilities (WASH) and  health care access - and do so in a joined-up way.

One example where integration is yielding results is in Nigeria.  As a country with one of the heaviest burdens of NTDs globally, and one which has successfully launched its ‘NTD masterplan’ (a multi-year national plan to control and eliminate several NTDs under the London Declaration), it offers a wealth of valuable insights.  The WHA side event in May, which was hosted by the Nigerian government and supported by the UK Coalition against NTDs, south-south sharing of learning was central to the discussion.   

Nigeria’s Minister of Health, Professor Onyebuchi Chukwa, and the Director of Public Health, Dr Bridget Okoeguale, highlighted what they see as the foundation of success in combating these diseases: building stronger health systems, equipped to deliver and sustain effective control programmes alongside interventions grounded in a public health approach. To this end, Dr Okoeguale highlighted that Nigeria is working to embed NTD care within primary health care structures to bring together preventive and curative care. She called on the NTD and WASH sectors to work together across departments responsible for Environment, Water, Education, Housing and Media.

This is certainly an approach supported through the Nigerian NTD elimination programme led by Sightsavers, where both local government and global donors such as the UK government aid agency, DFID, have committed funds to control several NTDs.  The success of this programme rides on all parties collaborating under a united goal and sharing knowledge and resources. The programme is designed to support the strengthening of the Nigerian health system alongside delivering targeted interventions to eliminate NTDs.

During the WHA event, this approach was supported by both the World Health Organization and international donors, including representatives from DFID and USAID, who emphasised the investments being made into WASH programmes in NTD endemic countries.  Dr Wendy Harrison, Chair of the UK Coalition against NTDs reiterated the importance of cross-sectoral collaboration to meet the WHO 2020 roadmap goals and the need to embed and standardise monitoring of the impact of NTD programmes on health systems. 

All parties at the event were in clear agreement that cross-sectoral integration is vital and that without access to safe effective WASH and health services, NTD elimination will not be possible.  However, whether or not this happens will depend on the level of political will, leadership and resources dedicated to achieving our goals in a sustainable way.  As the recent  announcement of £39m  by the British Government to help support the elimination of trachoma in highly endemic countries in sub-Saharan Africa reminds us, NTDs have never been as well supported or as prominent on the global health agenda. However there still remains a global $200million per year funding gap that needs to be addressed if we are to meet the ambitious goals of control and elimination as laid out in the 2012 London Declaration.

We need to make sure that we leverage these global commitments and this momentum to achieve our goals in a way that builds systems to provide safe and effective WASH and health services, and delivers on our commitment to control and eliminate these diseases in a sustainable way.

Friday, 9 May 2014

Be part of the NTD discussion at the World Health Assembly on 22 May

The UKCNTD are joining forces with the Federal Ministry of Health in Nigeria to host a special session to discuss the evolution of integrated and cross-sectoral approaches to the control and elimination of NTDs. 
Entitled 'The Power of Integration: Achieving the control and elimination of Neglected Tropical Diseases', this interactive forum will hear from internationally renowned experts, policy makers and donors about current best practices and the latest innovative implementation strategies being employed by endemic country governments and their development partners. 
Speakers include:

Chair: Dr Maria Neira, Director, Public Health and the Environment Department, WHO
Opening: Prof Onyebuchi Chukwu, Minister of Health, Nigeria
  • Dr Bridget Okoeguale, Director of Public Health, Nigeria
  • Dr Dirk Engels, Director, Dept of Control of NTDs, WHO
  • Ministry of Health, Tanzania
  • Dr Wendy Harrison, Chair, UK Coalition against NTDs
  • Nichola Cadge: Health Adviser, DFID
We hope to announce additional high profile speakers in the run up to this event.

For those who will be in Geneva on the 22nd the meeting's vital statistics are:

Time: 12.15 – 13.45
Venue: Room XXIII (23)
Lunch and refreshments will be provided

For those who can't make the meeting you can follow the proceedings live on @UK_NTD

Friday, 11 April 2014

Taking the Neglect out of Neglected Tropical Diseases - Paris 2014

​​Two years after the landmark London Declaration on Neglected Tropical Diseases which set out the ambition to control and eliminate 10 NTDs by 2020, global leaders gathered in Paris yesterday to announce increasing momentum to fight the diseases that put one in six people worldwide at risk of being sickened, disabled or disfigured. 

NTDs disproportionately affect the world's poorest and most vulnerable populations. Since the London Declaration which put the collective weight of 13 leading pharmaceutical companies, global health organizations, private foundations, and donor and endemic country governments behind a new push to reduce the global burden of NTDs—the partnership has made strong progress in ramping up efforts to reach the World Health Organization (WHO)'s goals to control or eliminate a number of these diseases by the end of the decade.
Researchers in Africa assess worm prevalence in child samples through microscope

The gathering coincided with the release of a new report highlighting gains over the past two years, including pharmaceutical companies meeting 100 percent of requests for drugs, and endemic countries taking ownership of NTD programmes.

"The tremendous progress we have seen over the past two years is proof of the power of partnerships and the generosity of companies that made commitments under the London Declaration," said Dr. Margaret Chan, Director-General of the WHO, who spoke at the event.

"Together with the governments of endemic countries, we are fast approaching the goal of controlling or eliminating many of these ancient causes of human misery. This is a pro-poor initiative that is improving the lives of more than a billion people."

Funding Announced for School-Based Deworming

The day's big announcement saw the commitment of a $120 million fund to combat soil-transmitted helminths. These intestinal worms are among the most common infections found among children living in poverty and they severely impact on child health, nutrition and learning abilities.

Jamie Cooper-Hohn, Chair of Children's Investment Fund Foundation (CIFF) announced that, "CIFF is now committing an additional US$50 million over the next five years to implement large-scale systematic approaches to deworming in a number of countries, with the hope that, ultimately, we can break the transmission of worms and achieve the vision of: every child, everywhere, free from worms forever."
Other organisations also announced their commitment to rid children of worms including:
  • The World Bank - committing US$120 million toward the goal of NTD control and elimination in low-income countries in Africa, including funding for school-based deworming efforts.​ 
  • The Bill & Melinda Gates Foundation - investing US$50 million to explore the feasibility of interrupting transmission and mitigating the risks of drug resistance, as well as the most effective cross-sector approaches.
  • Dubai Cares - designing programmes that will integrate nutrition, WASH (water, sanitation and hygiene) and deworming interventions in schools to increase student enrollment and learning outcomes.
  • The Global Partnership for Education - collaborating with the World Bank to assist education sectors in developing countries to deliver donated deworming drugs to children.
  • The World Food Programme working to ensure deworming is provided to millions of children as part of current school feeding programmes.

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