Lepra

Lepra is a UK-based international charity working to beat leprosy. Since being founded in 1924 they have helped to diagnose, treat and rehabilitate people affected by leprosy. Lepra currently works in India, Bangladesh, Zimbabwe and Mozambique. In 2017-2018, Lepra reached over 301,000 people directly through diagnosis, treatment and care. They reached a total of 1.7 million people through health education and other events to raise awareness of neglected diseases.[1]

Throughout Lepra's history, the reigning British monarch has always been Lepra's patron. King George VI became the first of the Royal family to sponsor children through their adoption scheme at the time but Queen Elizabeth II became Patron of the British Empire Leprosy Relief Association (BELRA) in 1952 following his death. The Duke of Gloucester KG GCVO is the current Vice President of Lepra.[2]

Lepra is a member of the International Federation of Anti-Leprosy Associations (ILEP),[3] a federation of  international non-governmental organisations committed to creating a world free of leprosy[4] and of The UK Coalition against Neglected Tropical Diseases,[5] a collaborative partnership between UK organisations actively engaged in the implementation and research of neglected tropical disease control.[6] Other partners of Lepra include Lepra India, London School of Hygiene and Tropical Medicine, the World Health Organization, and the BIG Lottery Fund, as well as a range of corporate partners.[7][8]

Founding Principles

Lepra was founded in 1924 on two principles that at the time set the organisation apart.

Firstly, Lepra believed that leprosy was surrounded by superstition and myth, incorrectly leading to prejudice and isolation for those affected by leprosy. In contrast being “evidence-led” was put at the centre of the organisation's policies and practice.

Secondly, Lepra was established as a secular charity. Open to all faiths and beliefs and favouring none above another.

These principles remain at the core of the organisation, 95 years on.

History

Lepra's history started in 1923, when Major General Sir Leonard Rogers, ex-Indian Medical Service, agreed to join Rev. Frank Oldrieve in forming a new association.[9] Sir Leonard Rogers had been working on a treatment for leprosy based on chaulmoogra oil for several years and had recorded good results.[10] On 12 July 1923, the British Empire Leprosy Relief Association (BELRA) was constituted at a meeting at the India Office presided over by Viscount Chelmsford.

Belra

On 31 January 1924, the British Empire Leprosy Relief Association was officially founded by Rogers and Oldrieve, with the financial help of Sir Frank Carter, a Calcutta businessman and philanthropist.[11] BELRA was inaugurated by the Prince of Wales (later King Edward VIII) at The Mansion House in London. The association boldly stated its aim as “to rid the Empire of leprosy.” It was set up as a medical organisation, spearheading outpatient work instead of the traditional method of (compulsory) segregation. From his experience, it was clear to Rogers that it was important to treat leprosy in its earliest stages, and that the segregation system caused people to hide the illness for as long as possible.[12] King Edward VI became the first Patron.

Significant Moments in Lepra's History and Contributions to the Fight Against Leprosy

1928 – A pamphlet entitled ‘Leprosy Notes’ is begun to share information on the disease.

1929 – Dr Robert Cochrane took over from Oldrieve and began his long association with BELRA by becoming its Medical and General Secretary.

1930 – ‘Leprosy Notes’ becomes ‘Leprosy Review’ a more scientific journal to encourage and disseminate the use of evidence led work with people affected by leprosy.

1931 – At the International Leprosy Congress in Manila, BELRA is recognised as the ‘First leprosy prevention organisation’.

1935 – A Child Adoption Scheme is launched as a method of raising funds for treatment of children as inpatients of leprosy hospitals. Child patients are connected with a particular UK sponsor.

1945 – BELRA is one of the first organisations to methodically trial Dapsone as a treatment for Leprosy and record its impact.

1947 – The Royal family adopt children through BELRA's Child Adoption Scheme.

1948 – Dapsone is announced as a cheap and effective cure for leprosy.[13] Dapsone is still used as part of multi-drug therapy for leprosy.[14]

1951 – In 1951 Dr Robert Cochrane becomes Leprosy Adviser to the UK Ministry of Health.[15]

1952 – The Queen becomes patron of BELRA.

1953 – BELRA establishes the first leprosy research centre in Eastern Africa. The site for the East African Leprosy Research Centre was chosen to be within the grounds of the Itesio Leprosarium in Kenya. In 1959 the name of the centre was changed to Alupe.[16][17] The Centre is now known as The Centre for Infectious and Parasitic Diseases Control Research (CIPDCR) and is one of the 12 centres of the Kenya Medical Research Institute (KEMRI).[18]

1956 – The Queen visited the Oji River Leprosy Settlement in Nigeria, accompanied by the Duke of Edinburgh.

1957 – At the Annual General Meeting, following the decolonisation process of the British Empire, the Association changes its name to the British Leprosy Relief Association, retaining the abbreviation BELRA.

1959 – At Ongino Leprosarium, in Uganda, the first made-to-fit shoe is tried out to take the pressure off ulcerated feet.[19] Providing people affected by leprosy and LF with protective footwear is one of the key activities of Lepra to this day.[20][21]

1961 – BELRA is instrumental in the development of Clofazimine (B663), which to this day remains a part of the multid drug therapy used for multi bacillary leprosy.[22][23]

1962 – A mobile exhibition van starts touring the UK, promoting BELRA's work.[24]

LEPRA

1964 – The Association changes its short title from BELRA to LEPRA.

1965 – The High Commissioner for Malawi and LEPRA's President, Viscount Boyd, approved an agreement on the Malawi Pilot Leprosy Control project, which then begins work.

1974 – LEPRA moves its headquarters from London to Colchester, where its offices are still based today.

Other Achievements from 1975 Onwards

1975 – As a result of research, LEPRA becomes one of the first associations to use multidrug therapy for treating leprosy, to increase effectiveness and minimise drug resistance.[25]

1976 – LEPRA becomes a full member of the International Federation of Anti-Leprosy Associations (ILEP).

1984 – LEPRA's diamond jubilee is celebrated with a service of thanksgiving at All Hallows by the Tower church, London. It is attended by the Queen and the Archbishop of Canterbury Robert Runcie.[26]

1990 – LEPRA starts its BOLEP project in Sonepur, Odisha, India, which had the highest prevalence of leprosy in the world at the time.[27] The project continues to this day.

1992 – LEPRA funds research into a new surgical technique to restore sense of touch and temperature to damaged feet and hands, in cooperation with the Royal College of Surgeons in London and a leprosy centre in India.[28]

1996 – Lepra is chosen to be the partner charity for the BBC Children's Television Blue Peter Appeal. The appeal raises more than £2.8 million.[29]

1998 – LEPRA extends its work by applying its expertise and skills to helping people with tuberculosis and HIV/AIDS.[30]

1998 – LEPRA receives a National Lottery Charities Board award.

1998 – LEPRA achieves “Investors in People” status.

1999 – The ‘Quest for Dignity’ competition is held asking young artists to portray the leprosy theme in either picture or sculpture form. The Queen and the Duke of Edinburgh attend the award ceremony at the Royal Geographic Society. Neelima Reddy received her award from the Queen as the winner of the picture competition.

1999 –The Blue Peter Health Research Centre is officially inaugurated in Hyderabad, India in December.[31]

2000 – The first mass drug administration for Lymphatic Filariasis took place.

2000 – LEPRA introduces health education vans in India, taking health education into communities.[32]

2000 – At the request of the government of Bangladesh, LEPRA takes over the responsibility for leprosy control work in Sirajganj and Pabna districts.[33]

2000 – In an extraordinary spirit of international co-operation, LEPRA joins together with the World Health Organisation, ILEP, governments of major endemic countries and other major organisations in the Global Alliance against leprosy.[34][35]

2003 – LEPRA's International contribution to the fight against leprosy is recognised at the Third Meeting of the Global Alliance for the Elimination of Leprosy (GAEL) in Yangon, Myanmar.

2004 – Leprosy Review, is cited as one of the top five tropical medicine journals as referenced by the Institute of Scientific Information.

2006 – Lepra establishes the system of "health camps" in Bangladesh to test for TB.[36]

2011 – A new study from the Blue Peter Health Research Centre identifies new biomarkers to detect TB early in HIV-positive people.[37]

2012 – LEPRA begins self-support groups for those affected by LF and leprosy.

2013 – LEPRA is re-branded with the speech bubble, and a lower case name, Lepra.

2014 – A private dinner in the State Apartments at Kensington Palace is held to celebrate Lepra's 90th Anniversary.

2016 – The Patron's Lunch is held in The Mall – Lepra is one of the charities invited to take part.

2017 – Lepra's Museum is officially opened by Kate Anderson, Gt. Niece of Sir Frank Carter, one of Lepra's founding members.

2017 - Lepra publishes an article in Leprosy Review showing the need for a return to an active case finding strategy in endemic countries to reduce the numbers of people affected by leprosy.[38]

Lepra

In 2013, LEPRA was re-branded as Lepra and in 2014 celebrated its 90th birthday. This was celebrated with a special anniversary edition of its quarterly magazine Lepra News, including a timeline of many of Lepra's achievements over the years.[39]

LEPRA India

LEPRA Society is a partner of Lepra, serving the needs of people affected by leprosy across India. While its history dates back to 1925, when Lepra started working in India, it was established as an independent Indian NGO in Hyderabad in 1988 to comply with Indian law.[40] Lepra and Lepra Society remain closely linked through governance and institutional structures and are a single consolidated charitable entity.

On 3 August 1989, LEPRA Society of India held its inaugural meeting in Hyderabad.[41]

Where Lepra works

Lepra is an international charity and, as of 2019, works in India, Bangladesh, Zimbabwe and Mozambique. Lepra's international office is based in Colchester, England.

Over the years, Lepra has worked in countries around the world, including India, Nigeria, Sierra Leone, Zimbabwe, Brazil, Uganda, Kenya, Zanzibar, and Malawi.

India

India carries at least 60% of the global leprosy burden. It is estimated that two million people are living with long-term effects of the disease.[42] Additionally, people with leprosy still experience prejudice in India and there are several laws that discriminate against them.

Lepra, through Lepra Society, works in seven Indian States, namely Telangana, Andhra Pradesh, Jharkhand, Odisha, Madhya Pradesh, Bihar and Delhi. Lepra's projects in India, include comprehensive referral centres where self-supporting groups in rural areas, across health education, bespoke footwear for disability, active case finding, livelihood support, reaction treatment and support, mental health counselling, health education, reconstructive surgery and training. Hyperbad in Telangana is home to the Blue Peter Public Health Centre, which combines high quality research with clinical practice.

Bangladesh

Bangladesh is one of the poorest and most densely populated countries in the world. Additionally, it is prone to natural disasters, such as annual flooding. Mosquitos, carrying diseases, breed in the wet and flooded areas. As a result of this and the high population density, half the population of Bangladesh is at risk of lymphatic filariasis.

Bangladesh is poorly equipped to deal with these health problems as there is a serious shortage of health workers. A 2011 estimate shows there are only 3 doctors and 1 nurse per 10,000 people in Bangladesh. Most of these health workers are concentrated in urban areas, while most of the population lives in rural areas.[43]

Lepra currently works in 11 districts in the north of Bangladesh, including Bogra, Sirajganj, Pabna and Natore.

Mozambique

In Mozambique, Lepra is working in partnership with the Netherlands Leprosy Relief (NLR) in the Zambezia province. Zambezia is the second most populous province in the country. In 2014, an NLR team visited Zambezia and noted that the government of Mozambique was facing challenges implementing the national health policy on neglected tropical diseases. It was also found that self-help groups which had been facilitated by Lepra until 2010 had not continued without external support.

In collaboration with NLR, Lepra is focusing on building the capacity of staff as well as strengthening the control programmes for NTDs. The aim of these projects is to find cases of leprosy and LF before disability sets in, as well as helping those who already have a disability to reintegrate into work and society.

This work in Mozambique combines NLR's experience in the provinces of Nampula and Niassa and Lepra's experience in Bangladesh and India.

What Lepra does

Lepra takes an integrated approach to reducing the incidence and impact of leprosy, lymphatic filariasis. Lepra tackles the diseases, but also aims to enable people to improve their livelihoods and overcome disability, discrimination and prejudice.[44]

The following are some of the many ways in which Lepra helps people fight disease, poverty and prejudice.

Diagnosing and treating leprosy

One of Lepra's core activities is the diagnosis and treatment of leprosy. When a doctor, health worker or health volunteer suspects someone has leprosy, Lepra will test skin sensations to determine whether the person can feel their skin being touched with cotton wool, feather or a ballpoint.[45]

Another way to determine leprosy infection is by taking a skin smear from a nodule on the skin. The skin smear is only positive, however, if many leprosy bacilli are present, meaning that the patient is heavily infected.

Leprosy is treated by multidrug therapy (MDT), a combination of Dapsone and Rifampicin for six months in the case of low infection - "Paucibillary". For higher infection levels, "multi-bacillary", Clofazimine is added to the MDT and the treatment period is lengthened to 12 months.

Early diagnoses and active case finding

Lepra also recognises the importance of early detection of leprosy. Delayed diagnosis can cause life changing disabilities due to nerve damage from the disease.[46][47] Late detection also increases the likelihood of leprosy spreading through the community.[48]

Lepra's active case finding method involves a screening of people around an infected person. While previous methods focused specifically on people sharing a household with a person affected by leprosy, Lepra focuses on both household members and 20-25 households around an index-case and conducts systematic screening of communities, schools or other places where endemicity is thought to be high.

Lymphatic filariasis

Lymphatic filariasis is a parasitic disease contracted through the bite of an infected mosquito. It causes swelling of body parts and altering of the immune system. As a result, LF can lead to severe deformities, debilitating fever and damage to the lymphatic system. Walking can become very difficult and painful, and swollen feet are vulnerable to injury. This can make it impossible for a person with LF to work for several days, pushing them into poverty. Stigma surrounding the disease also means people with LF can be shunned and isolated from their family and community.

Although there is no cure for LF, Lepra implements a number of strategies to make the disease manageable for those affected. They travel to remote communities to teach self-care techniques to reduce swelling and pain. If feet are already severely deformed, Lepra provides people with custom-made protective footwear.[49]

Health education and health worker training

In many of the places where Lepra works, basic health information is often lacking, both for the general public and for health workers. Lepra tries to remedy this by providing health education and health training.

Health education vans are used by Lepra to bring health messages to people living in the most remote and most rural areas. These vans visit villages to educate people about maintaining good health and informing them about the symptoms of leprosy, LF and other prevalent diseases.[50]

Lepra also undertakes health education in schools, teaching children the symptoms of leprosy so they can recognise the disease not only in themselves, but also in their families. School visits are also an important step in dispelling leprosy myths and the stigma surrounding the disease.[51] In 2017-2018, Lepra reached more than 155,000 children in India, Bangladesh and Mozambique.[52]

Lepra works with governments to improve health worker training, providing them with knowledge of neglected diseases and making them more accepting of people affected by them. Lepra also trains traditional doctors to recognise the symptoms of leprosy and other neglected diseases, so they can refer patients to government facilities where they will receive correct treatment.[53]

To fill in the gaps in the health service, Lepra also works with community health volunteers who are trained to recognise symptoms and work in their own communities to spread health messages, follow up on cases, and refer suspected cases of illness to the correct health facilities.[54]

Advocacy and fighting prejudice

People with leprosy or other diseases such as lymphatic filariasis don't just face physical challenges – they often also have to deal with stigma and prejudice from their communities, the government, or even their families. People may have their children taken away, suffer physical or psychological abuse, or are shunned or even exiled. Such stigma often remains long after a person has been cured.[55] This can lead to social isolation, depression, and even suicide. Studies show that 50% of people with leprosy will face depression and anxiety.[56][57] Many people who have leprosy or used to have leprosy are forced to live in leprosy colonies across India and Bangladesh, isolated from their families and communities.[58]

Social stigma is a consequence of ignorance and the existence of many myths and misconceptions about leprosy, its causes and the existence of a cure.[59] Lepra aims to fight prejudice and stigma by providing health education to the general population, as well as health worker training.[60] They also provide support to people who face leprosy and other diseases, such as counselling services at the Munger Referral Centre.[61]

Beside discrimination from their communities, people with leprosy and disabilities in India still face several laws that discriminate against them in terms of employment, marriage, and other areas.[62][63] As a result, people showing symptoms or effects of the disease are unable to work and/or are denied government benefits, meaning they have to beg for money in order to survive and support their families.[64]

Lepra is actively working with national and state networks of people affected by leprosy and disability across India and Bangladesh to fight such discrimination. They help them advocate for and claim their own rights, such as their rights to land as well as disability and old age benefits, but also teach them about their basic human rights, and find opportunities for them to directly meet with government representatives and local authorities.[65]

Self-help groups

Diseases and disability are both causes and consequences of poverty. In combination with prejudice and discrimination, many people with leprosy and disability lose their jobs, meaning they often have to beg for money in order to support themselves and their families. Increased health care costs can also push families deeper into poverty.[66]

To help people improve their livelihoods and climb out of poverty, Lepra has set up several self-help groups across India, Bangladesh and Mozambique. These groups advise people on how to best help themselves with health care and income generation.

At each meeting, members of the self-help groups make a small financial contribution to a group fund. This fund is then used to provide members with an interest-free business loan to finance business initiatives such as a local shop, goat rearing, or tailoring. Members of the group are also trained in group management skills, self-care, or advocacy skills, as well as given the knowledge and skills needed to work themselves out of poverty.[67]  

Community disability care and protective footwear

Lepra teaches people how to care for their disabilities, so they are not left unable to work, and also provides people with protective footwear so they can get around more easily.

Lepra organises self-care camps in local communities where people can learn how to care for their disabilities through cleaning and physiotherapy techniques that they can then do at home. People with disabilities are invited to demonstrate to others how they can prevent infection and reduce the severity of their disabilities. One simple solution is washing and soaking wounds on a daily basis. Organising these self-care camps in communities means people gain a better understanding of the symptoms and treatment of disease and disability, reducing prejudice and stigma.[68]

Lepra also provides basic self-care kits to people free of charge. These kits include a bar of soap, anti-bacterial ointment, cream to prevent fungal infections, and a towel.[69] In 2016-2017, Lepra trained 43,300 people in self-care techniques to improve overall hygiene, keep affected body parts infection free and reduce swelling. This is almost 60% more than the year before.[70]

Due to nerve damage, people with leprosy are vulnerable to injuries, potentially leading to severe damage to fingers, toes, hands and feet. LF can cause severe swelling in the feet and legs, making it difficult to walk as well.[71]

Lepra provides people with leprosy and LF with specialist, made-to-fit shoes, carefully designed for each individual. Shoes provide comfort, encourage healing of wounds and ulcers, and prevent further injury and disability. But a pair of shoes can also contribute to restoring a person's dignity and removing stigma within the community.[72][73]

Several shoe technicians are working in clinics and referral centres, while Lepra also has a few shoe vans driving across India providing the service to local communities.[74] Making one pair of shoes only takes one hour and they come in many different designs. In 2016-2017, 37,500 pairs of protective shoes were created, although it is estimated that many more people are still in need of shoes to protect their feet.[75]

Referral centres

Lepra started setting up referral centres when people with leprosy were not ‘allowed’ into hospitals or did not receive proper treatment due to stigma and doctors not specialising in the disease.[76] Now, Lepra's referral centres provide services in areas where health facilities are lacking or unable to manage neglected diseases like leprosy or LF, and the disabilities they can cause.[77] The services offered at these referral centres include testing, treatment, disability care, physiotherapy, ulcer care, reconstructive surgery and counselling to people affected by diseases as well as their families. Many of these centres also have their own shoe technician available, manufacturing and supplying protective shoes[78] to people with disabilities.

Lepra runs their referral centres in partnership with state and national health systems. They are often located in government health centres and hospitals. Ultimately, the aim is to hand them over to governments to ensure their sustainability.[79]

One such referral centre is the Munger Referral Centre in India, which was set up in 2005. The Munger Referral Centre. In 2016, Lepra started a project at the Centre focussing on approaches for tackling disability, disability management and inclusion when it comes to leprosy and LF.[80] Other referral centres can be found in India in Delhi and Andhra Pradesh.[81]

In April 2014, Lepra opened its first referral centre in Sirajganj district in Bangladesh. The centre provides health and disability care and employment opportunities, and will build awareness of basic human rights amongst the community in order to challenge prejudice against people affected by diseases and with visible disabilities.[82]

Research and innovation

Lepra is one of the world's leading authorities on leprosy. Over the years, Lepra has conducted pioneering research in the treatment of leprosy and has been at the forefront of developing a cure and trialling a multitude of drug treatments.

Today research still forms an important part of Lepra's work, carrying out both scientific and field research to further knowledge of neglected diseases and the effects they have on poor communities.[83]

Recent research has focused on active case finding, disability aids, diagnostic tools and the mental health needs of those affected by leprosy.

Blue Peter Health Research Centre

In 1996, Lepra was chosen to be the partner charity for the BBC Children's Television programme Blue Peter in their ‘Bring and Buy Sale’ for leprosy. The appeal raised more than £2.8 million.[84] In December 1999, the Blue Peter Health Research Centre is officially inaugurated in Hyderabad, India. To this day, the Centre remains an excellent training and treatment facility for those with leprosy. It offers a unique combination of high-quality research and clinical practice.[85] Lepra also conducts research into the impact of diseases on the economic and social well-being of those affected, allowing the organisation to design projects responding to community needs in more effective ways.[86]  

Leprosy Review

Each quarter, Lepra publishes Leprosy Review, an English-language scientific journal on leprosy. The open-access academic journal includes original papers on all aspects of leprosy, from research into medical, physical and social aspects of leprosy to information relevant to leprosy control.

A forerunner of Leprosy Review, named Leprosy Notes, was first published in 1928. In its first issue, Rev. Frank Oldrieve, as Secretary of the Association, writes that the hope is “that leprosy workers in the British Empire will find these notes of service.” He also invites readers to write in with any notes “on the results obtained from the various treatments that are being tried.”[87] In total, seven issues of Leprosy Notes are published across two years.[88]

In 1930, the first issue of Leprosy Review is published, a larger and expanded version of Leprosy Notes, with Dr Robert Cochrane as its first editor. Its aim was to “meet the need for a quarterly periodical giving interesting and practical details to workers, especially to those who have made no attempt to specialise exclusively in the field of leprosy.”[89] In 2004, Leprosy Review was cited as one of the top five medicine journals by the Institute of Scientific Information.[90]

The Leprosy Notes of 1928 and 1929 as well as all Leprosy Review issues from 1930 to 2001 were made freely available online thanks to the Full Text Leprosy Project, an initiative of the Lauro de Souza Lima Institute of Secretary of Health of São Paulo, in cooperation with the Latin American and Caribbean Center on Health Sciences Information and The International Journal of Leprosy.[91] Issues from 2002 onwards are available on Lepra's website.[92]

Vision and values

Lepra's vision is to be a leader in reducing the incidence and impact of leprosy and other neglected diseases, and enabling children, women and men affected by leprosy, lymphatic filariasis (LF), to transform their lives and overcome the prejudice which surrounds these two diseases.

Lepra is committed to five values that guide their work.[93] They strive to be:

  • People centred
  • Transparent and accountable
  • Innovative and demonstrating bold leadership
  • Effective and efficient
  • Collaborative

Lepra's Ambassadors

Lepra currently has four ambassadors who help to support and promote their work:

Fiona Duby

Fiona Duby has more than 40 years’ experience of working in 29 countries in Africa and Asia in health and development programmes in both the public and the private sector. She was awarded an MBE for services to Bangladesh in 1992 and an OBE for services to Nigeria in 1999. She saw the effects of leprosy on people's lives amongst the poorest while travelling through Africa. In 2000, she was invited to join Lepra's Board of Trustees and after 15 years welcomed the opportunity to become an Ambassador. She hopes to use her experience to help raise awareness.[94]

Victoria Hislop

Victoria Hislop is an author best known for her best-selling novel The Island, which tells the story of one family's history with the island of Spinalonga – Greece's former leper colony.[95] Victoria became Ambassador for Lepra in 2013 and has been to India to visit Lepra's projects.[96] She has shared her own experience of seeing Lepra's care to the whole person in an integrated, practical and dignified way and has stated that one of Lepra's strengths is its strong relationships with local health networks.[97]

Stuart Miles

Stuart Miles was one of the Blue Peter presenters at the time when Lepra was selected as the charity for Blue Peter's annual fundraiser in 1996. Stuart has since visited projects, helping to raise awareness of leprosy and Lepra's appeals.[98]

Stuart Paver

Stuart Paver is the managing director of Pavers; the shoe company has helped to fund the Lepra shoe vans in India that produce custom-made protective footwear for people with disabilities.[99] The footwear enables people to walk without fear of injury, regaining their confidence to return to work. In 2018 Stuart became a Lepra ambassador and continues to raise awareness of leprosy

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