Neglected Disabilities – Leprosy – Disabled Peoples' International (DPI)

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What is Leprosy?

Leprosy is one of the oldest diseases known to mankind and people affected by it continue to be rejected and neglected by society due to its outdated image of being contagious and disfiguring. However, today it is curable with antibiotics.

Leprosy is a chronic infection caused by the bacteria Mycobacterium leprae and Mycobacterium- lepromatosis and is often known as Hansen’s disease (HD). It causes severe, disfiguring skin sores and nerve damage in the arms and legs.

In the 1980s, an effective cure for Leprosy was developed and now it is completely curable through Multi-Drug Therapy (MDT). Nevertheless, people affected by the disease and their kin continue to be marginalized by the mainstream society.

Geographical distribution of new leprosy cases, 2017

Source: World Health Organization, 2018

Disabled Peoples’ International and People Affected by Leprosy

Most people think Leprosy is just a health and not a disability issue. Nevertheless, there is a significant population that has disability due to Leprosy and consequentially they face grave barriers in effective participation in society. To make the situation worse, there are discriminatory laws that prevent people affected by Leprosy from participating on an equal basis in society, and yet they are not well represented in the disability rights movement, nationally and globally.

Disabled Peoples’ International (DPI), the only cross-disability organization in the world, thus aims to include people affected by Leprosy in the disability movement and aims for inclusion of person’s affected by Leprosy in DPI from the 22 high prevalent countries. DPI also hopes to create greater awareness and visibility about issues of persons affected by Leprosy amongst the larger national and international disability movement. Disabled Peoples’ International (DPI) has members and associates in 20 out of the 22 countries with high prevalence of Leprosy.

The Nippon Foundation

The Nippon Foundation of Tokyo, Japan, is one of the most esteemed non-profit organizations in the world, supporting organizations and governments in achieving the basic human rights, and promotes development of the human resources needed to guide our world to a better future.

The Nippon Foundation has championed the cause of Leprosy, together with its related agency, the Sasakawa Memorial Health Foundation. They have been a long standing donor to the WHO Leprosy programme for many years, and thus have played a decisive role in Leprosy elimination. Contributions from The Nippon Foundation and the Sasakawa Memorial Health Foundation have enabled WHO to provide free Multi-Drug Therapy (MDT) treatment to Leprosy patients in 85 countries and have financed special programmes and field activities throughout the world.

Due to the organization’s continued success and contribution in eradication of Leprosy, the Chairman of The Nippon Foundation, Mr. Yohei Sasakawa has been chosen to be WHO’s Goodwill Ambassador for Leprosy Elimination.

(For more information visit http://www.nippon-foundation.or.jp/en/ .)

Leprosy: Effects on human body and mind

The initial signs of leprosy on human body include patches of skin which generally look lighter in complexion than normal. In some cases people may face nodules on the skin. At times, the affected person and even the doctors find it difficult to diagnose and in fact in other times, people are misdiagnosed. Leprosy, if not treated within time, it disables the sensory nerves in hands, feet, eyes and parts of the face which eventually means even at the time of injury, an affected person would feel anything and the injury may go unnoticed.

Further, if Leprosy is left untreated, the may result in weakening of muscle and paralysis, clawed hands (a condition when fingers weaken and curl up), foot-drop (a condition when feet lifting muscle fail to work properly). Moreover, Leprosy can cause the paralysis of the eyelids. There have been instances when the people experience reactions to leprosy causing bacteria, even during the inactivity of the bacteria. Pain, sickness, swelling of the skin and fever are some of the effects cause due to such reactions. Due to myths and superstition related to leprosy, people affected with Leprosy face lifelong stigma even from their families. They face seclusion from communities, loss of jobs, and dignity.

The Global Appeal – To End Stigma and Discrimination against Persons Affected by Leprosy

For much of its long history, leprosy was feared as a contagious, disfiguring disease with no cure. The first effective treatment emerged several decades ago, and with the advent of multidrug therapy (MDT) in the 1980s, some 16 million people have recovered from the disease. Since 1995, MDT has been available free of charge through the World Health Organization (initially with funding from the Nippon Foundation and subsequently via donation from Novartis).

Some 200,000 new cases of leprosy are reported worldwide each year and efforts continue to further tackle the disease as a medical issue. Despite progress on the medical front, leprosy remains a deeply stigmatizing disease. In various parts of the world, the discrimination that people affected by leprosy encounter limits their opportunities for education, employment and marriage, forcing them and their family members to live on the margins of society.

Responding to the appeals made by The Nippon Foundation and its Chairman Mr. Yohei Sasakawa, the government of Japan took an initiative to submit draft resolutions to the Human Rights Council and the United Nations General Assembly, which adopted resolutions in 2010 that include a series of principles and guidelines to combat this phenomenon, but much remains to be done.

Every year, in conjunction with World Leprosy Day (the last Sunday in January), Mr. Yohei Sasakawa, who also serves as WHO Goodwill Ambassador for Leprosy Elimination, and Japanese Government Goodwill Ambassador for the Human Rights of Persons Affected by Leprosy, leads a Global Appeal to End Stigma and Discrimination against Persons Affected by Leprosy. The Global Appeal is designed to raise awareness of the obstacles that people affected by leprosy live with, and call for an end to the discrimination they face.

Each year, the Global Appeal is endorsed by key constituencies:
- 2006 -World leaders including Nobel Peace Prize laureates the Dalai Lama, former US President Jimmy Carter, Archbishop Desmond Tutu and Elie Wiesel;
- 2007 – Representatives of persons affected by leprosy from 13 countries;
- 2008 – Major human rights organizations such as Amnesty International and Save the Children;
- 2009 – Leaders of the main religious faiths;
- 2010 – Top executives from companies including Toyota, Virgin Management, Tata Group, Johnson & Johnson, Renault and Novartis;
- 2011 – Heads of over 100 leading universities;
- 2012 – World Medical Association and the medical associations of 50 countries;
- 2013 – International Bar Association and 46 bar associations in 40 countries;
- 2014 – National human rights Institutions from 37 countries and 2 regions;
- 2015 – International Council of Nurses and 132 national bodies;
- 2016 – Junior Chamber International and its branches in 130 countries;
- 2017 – Inter-Parliamentary Union representing 173 members;
- 2018 – Disabled Peoples’ International with it’s 130+ Member National Assemblies spread across 7 regions.
(For more information on the previous Global Appeals, you can go to the link: http://www.nippon-foundation.or.jp/en/what/projects/leprosy/appeal/ .)

Global Appeal 2018

Global Appeal 2018 saw a partnership of The Nippon Foundation and Disabled Peoples’ International (DPI). About 91 Member National Assemblies (MNAs) of DPI from around the world endorsed the Global Appeal and pledged to bridge the gap between the disability and the Leprosy sectors by integrating people affected by Leprosy into the larger disability movement and by aligning the advocacy initiatives to end the stigma and discrimination faced by people affected by Leprosy. The DPI Global Chair and the Regional Chairs represented DPI at the launch of the Global Appeal 2018 on Tuesday, 30th January, 2018 at Shahjehan Ballroom, Taj Diplomatic Enclave from 10am to 12:00pm.

The event was also co-organized in collaboration with DPI’s Member National Assembly (MNA) in India, National Centre for Promotion of Employment for Disabled People (NCPEDP) – a cross disability, not-for-profit organisation working as an interface between Government, Industry, International Agencies and the Voluntary Sector towards empowerment of persons with disabilities in India and with a mandate to encourage employment of disabled people, increase public awareness on the issue of disability, empower disabled people with knowledge, information and opportunities and ensure easy and convenient access to all public places. For more information, please visit: www.ncpedp.org.
- Global Appeal 2018 Declarations
- Global Appeal 2018 Photos
- Global Appeal 2018 Report
- Video Messages:
Rights of Persons Affected by Leprosy

The centuries old stigma attached to people affected by Leprosy represents one of the gravest forms of social injustice suffered by any one group of human beings.

Article 1 of the Universal Declaration of Human Rights states: “All human beings are born free and equal in dignity and rights.” This includes every person affected by Leprosy in the whole wide world- nevertheless social, economic and legal discrimination still persists for people affected by this disease.

For society and governments to live up to Article 1 of Universal Declaration of Human Rights, it is imperative that the inherent rights of people affected by Leprosy are acknowledged and upheld.

Eradicating this issue will help in realizing a society where the fundamental rights and dignity of every human being is recognized and enjoyed by its citizens including persons with Leprosy and disabilities.

Achieving a UN Resolution

In September 2010, the UN Human Rights Council unanimously adopted a resolution in which it appreciated the principles and guidelines for the elimination of discrimination against persons affected by Leprosy and their family members. By December 2010, the resolution was adopted at the UN General Assembly, wherein it encouraged Governments, national human rights institutions, intergovernmental organizations and the United Nations system, to consider the Principles and Guidelines while formulating, implementing and measuring policies concerning persons affected by Leprosy and their family members.

Principles and Guidelines: Key Points

Principles: Persons affected by Leprosy and their family members should be treated as people with dignity and are entitled to all human rights and fundamental freedoms.

Guidelines: States should ensure:
- no discrimination on the grounds of Leprosy
- equal protection and equal benefit of the law
- special attention to rights of women, children and other vulnerable groups
- reunification of families
- access to education
- employment and vocational training opportunities
- full inclusion and participation in the community
- voting rights
- removal of discriminatory language
- access to public places
- same standard of healthcare enjoyed by persons with other diseases
- adequate standard of living
- formulation of policies and plans of action to promote respect for rights and dignity.
- Resolution adopted by the United Nations General Assembly on Elimination of discrimination against persons affected by Leprosy and their family members
- “Draft set of principles and guidelines for the elimination of discrimination against persons affected by Leprosy and their family members”
(Available on the United Nation’s Human Rights Council Website)

Prevalence and Status of People Affected by Leprosy

There is a general assumption that Leprosy has been eradicated. However it must be noted that there are about 200,000 new cases of people getting Leprosy each year and there are several active Leprosy colonies in the world, where people do not have access to many facilities and are still being seen as outcasts.

According to data collected on Leprosy by WHO, 22 countries have been identified as “global priority countries” for Leprosy. (See Global leprosy update, 2015: time for action, accountability and inclusion – Weekly epidemiological record 2 SEPTEMBER 2016, WHO )

Out of the 22 ‘global priority countries’ for Leprosy, 12 countries have reported more than 1000 new cases in 2016:
1. Angola
2. Bangladesh
3. Brazil
4. Comoros
5. Cote d’Ivoire
6. Democratic Republic of Congo
7. Egypt
8. Ethiopia
9. India
10. Indonesia
11. Kiribati
12. Madagascar
13. Micronesia (Federated States of)
14. Mozambique
15. Myanmar
16. Nepal
17. Nigeria
18. Philippines
19. South Sudan
20. Sri Lanka
21. Sudan
22. United Republic of Tanzania
Leprosy continues to be stigmatized in almost all Leprosy-endemic countries. This, combined with any physical limitations in functioning, can have a profound negative effect on a person’s social participation. The stigma is such that often whole families are affected. Many of the manifestations of stigma are violations of human rights specified in the Convention on the Rights of Persons with Disabilities (CRPD).

Excessive barriers created by governments, schools, hospitals, communities, companies, organizations and religious institutions, have also stripped Leprosy patients of their dignity from time to time. Limited or no access to social services, enforced isolation and discrimination in the job market and education are just some of the ways in which people affected by Leprosy have suffered.

Map showing the prevalence of leprosy at the start of 2012

In 2016, WHO launched the “Global Leprosy Strategy 2016–2020: Accelerating towards a leprosy-free world” to strengthen efforts for leprosy control. The Global Leprosy Strategy 2016–2020: Accelerating towards a leprosy-free world

The strategy focuses on avoiding disabilities, especially among children and targets: 1) Zero disabilities among new paediatric patients, 2) A grade-2 disability rate of less than 1 case per 1 million people, 3) Zero countries with legislation allowing discrimination on basis of leprosy. The Global Leprosy Strategy 2016‒2020 is based on the following 3 core pillars:
1. Strengthen government ownership, coordination and partnership
2. Stop leprosy and its complications
3. Stop discrimination and promote inclusion
In the same year, WHO also published an Operational Manual to help facilitate the adaptation and implementation of the Global Leprosy Strategy 2016‒2020 providing guidance to managers of national leprosy programmes (or equivalent entities): Operational Manual 2016 – Global Leprosy Strategy 2016−2020

In 2017, the Global leprosy programme published its Monitoring and Evaluation Guide–Global leprosy strategy 2016-2020. This Programme takes the lead in expanding the network for surveillance of leprosy drug resistance which is a key intervention under the Global Leprosy Strategy.: http://www.who.int/lep/resources/9789290225492/en/

In 2018, WHO published Guidelines for the Diagnosis, Treatment and Prevention of Leprosy which provides state-of-the-art knowledge and evidence on leprosy diagnosis, treatment and prevention based on a public health approach in endemic countries and targets policy-makers in leprosy or infectious diseases in the ministries of health (especially but not limited to endemic countries), nongovernmental organizations, clinicians, pharmaceutical companies, donors and affected persons. These Guidelines were prepared by WHO with the funding support received from The Nippon Foundation.: http://www.searo.who.int/entity/global_leprosy_programme/documents/9789290226383/en/

(For more information, please visit the Leprosy page: http://www.who.int/lep/en/ and the Neglected Tropical Diseases page: http://www.who.int/neglected_diseases/en/ on the WHO website)

The 1st UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members

Ms Alice Cruz, a Portuguese national and trained anthropologist and researcher with experience in the biosocial aspects of Leprosy, was appointed as the 1st UN Special Rapporteur on the ‘elimination of discrimination against persons affected by leprosy and their family members’ in 2017.

Ms. Cruz is a (external) Professor at the Law School of University Andina Simón Bolívar in Ecuador and has worked with the Brazilian non-profit organization Movement for the Reintegration of Persons Affected by Hansen disease (MORHAN) where she was involved in the organization of the First International Symposium on Leprosy and Human Rights (Rio de Janeiro, 2012). Having vast experience in the field of Leprosy, she was an integral part of the process of elaboration of the WHO Guidelines for Strengthening Participation of Persons Affected by Leprosy in Leprosy Services and served as a member of the International Leprosy Association’s Council from 2014 to 2016.

The United Nations Human Rights Council adopted a resolution for creating a role of Special Rapporteur on the ‘elimination of discrimination against persons affected by leprosy and their family members’ in June 2017. Part of the Special Procedures of the Human Rights Council, Special Rapporteurs are independent experts appointed by the Human Rights Council to examine and report back on a country situation or a specific human rights theme. This position is honorary and the expert is not United Nations staff nor paid for his/her work.

The Special Rapporteur on the ‘elimination of discrimination against persons affected by leprosy and their family members’s mandate includes reporting on progress made by UN states for the effective implementation of the Principles and Guidelines for the elimination of discrimination against persons affected by leprosy and their family members (approved at the General Assembly in 2010); engaging in dialogues with states and other stakeholders with a view of enforcing the human rights of persons affected and their families; and raising awareness of the rights of persons affected by leprosy.

This is the 1st ever position of a UN Special Rapporteur for Leprosy issues and was possible due to the high level advocacy of the Government of Japan and their Ambassador in Geneva, the Advisory Group, the Sasakawa Memorial Health Foundation and the Nippon Foundation that worked on turning the idea of this special role into a reality.

(For more information, visit: https://www.ohchr.org/EN/Issues/Leprosy/Pages/AliceCruz.aspx )

India and Leprosy

India declared elimination of Leprosy as a Public health problem in December 2005 indicating that at a national level there were less than 1 per 10,000 cases on treatment (as per the government statistics).

However, 60% of new Leprosy cases in the world are in India, with the number of Leprosy patients with disabilities having jumped from 2 per cent-3 per cent to 4.6 per cent between 2014 and 2015. But, a momentous victory seems to be in the coming, with the government announcement of the world’s first Leprosy vaccine, developed in India

To identify the reasons behind the increasing number of new Leprosy cases with disabilities, a study was undertaken by GLRA India along with the Indian Council of Medical Research in the states of West Bengal, Gujarat, Maharashtra, Delhi and Andhra Pradesh. The research which concluded in July found 90% of Leprosy patients with disabilities ignored initial symptoms such as skin patches, along with loss of sensation or numbness, as they felt the symptoms were minor and would disappear.

Many correlations suggested say that, because the burden of Leprosy has come down over the years, the ability to recognize Leprosy as a major cause of disability has also come down.

In order to bring Leprosy in the public domain, the Sasakawa India Leprosy Foundation (SILF) has initiated the ‘Forum of Parliamentarians to Free India of Leprosy’ in 2012. Headed by ex-Railway Minister, Mr. Dinesh Trivedi, the forum cuts across party lines and aims to free India of Leprosy. The members offer their good offices and influence in the legislature to raise awareness about Leprosy and bring changes that would ensure the basic human rights of the Leprosy-affected. They further also facilitate link up of Leprosy-affected people in their constituencies with the existing national and state government welfare schemes.

There are laws still in India that discriminate against people affected by Leprosy. These laws allow Leprosy as a ground for divorce, discriminate against people affected by Leprosy who resort to begging for livelihood, bar them from contesting elections, provide for charging higher life insurance premium from them, stop them from travelling in trains, obtaining driving licences, etc. This legal battle still persists. The Law Commission under Justice A.P. Shah submitted its report for ‘Eliminating Discrimination against Persons Affected by Leprosy’ (Report No.256 dated April 7, 2015) to Mr. D.V. Sadananda Gowda, the then Hon’ble Minister for Law and Justice, Government of India. This report also contains a draft Bill, titled, ‘Eliminating Discrimination against Persons Affected by Leprosy (EDPAL) Bill, 2015’ (read the full document here ) for repealing all laws discriminatory towards people affected by Leprosy.

The key aspects of the draft law are as follows:
1. Repeal and amendment of certain laws
2. Measures against discrimination
3. Land Rights
4. Right to Employment
5. Educational and training opportunities
6. Appropriate use of Language
7. Right to Freedom of Movement
8. Concessions during treatment
9. Social Awareness
10. Welfare Measures
Advocacy is underway in repealing the 119 discriminatory provisions across Central and State laws against people affected by Leprosy in India.

In February 2019, the Indian Parliament passed a bill removing leprosy as a ground for divorce under five personal laws including the Hindu Marriage Act

Gandhi Peace Prize to Mr. Yohei Sasakawa .

Chairman of the Nippon Foundation, Mr. Yohei Sasakawa was conferred with the International Gandhi Peace Prize for 2018, for his immense contributions towards eradicating Leprosy in India and across world. The International Gandhi Peace Prize is given to individuals and institutions for their contributions towards social, economic and political transformation through non-violence and other Gandhian methods. Mr. Sasakawa is serving as the World Health Organization’s Goodwill Ambassador for Leprosy Elimination since 2001. His primary focus has been India which is home to 60 percent of world’s total population affected with Leprosy. Over the years, Mr. Sasakawa has visited historically segregated colonies in India to fight stigma against the people affected with the disease.

Photo caption: Shri. Ramnath Kovind, Hon’ble President of India conferring Mr. Yohei Sasakawa with Gandhi Peace Prize, 2018

Study report on Identification and Validation of Leprosy Colonies in India

Study report on Identification and Validation of Leprosy Colonies in India

Quick & Useful Links on Leprosy
1. Organizations:
2. Partnerships/Campaigns:
  - Global Appeal
  - Global Partnership for Zero Leprosy
  - DPI India’s #EndLeprosyDisacrimnation #LeprosyFreeMinds Campaign to Repeal 119 Discriminatory Laws against people affected by Leprosy in India: @ncpedp_india & @NCPEDP
3. Reports:
4. PPT/Word Presentations on Leprosy Issues:
  - PPT presentation on the Role of Indonesia’s Leprosy and Disability Care Movement by Mr. Hermen Mangaradas Hutabarat at the 3rd AP CBR Congress, Japan.
  - PPT presentation on the “Status of People Affected by Leprosy with regards to Political Participation” at the South Asia Regional Disability Rights Dialogue on Political Participation, Sri Lanka.
  - “The Eye of Exclusion” by Mr. Jose Ramirez Jr. at the side event on leprosy titled, “Voices of People Affected by Leprosy” on 10th June, 2015 at the CoSP 8 at UN Headquarters, New York
  - “Inclusion is a Matter of Justice” by Dr. P.K. Gopal at the side event on leprosy titled, “Voices of People Affected by Leprosy” on 10th June, 2015 at the CoSP 8 at UN Headquarters, New York
  - PPT presentation on the Global Situation on Independent Living for Persons Affected by Leprosy by Mr. Jose Ramirez Jr. at the Zero Project Conference 2015, Austria:
  - PPT Presentation on ‘The Role of CBR/CBID in a Humanitarian Crisis for People Affected by Leprosy’ by Mr. Mohamedi Mtumbi and Ms. Jameelat Lyimo from Tanzania Leprosy Association (TLA) at the 6th CBR Africa Conference held in Zambia from 7th to 11th May, 2018.
  - PPT Presentation Disability inclusion in local governance system and disaster risk management (Experience in Myanmar) by Mr. Hla Min Tun from the Leprosy Sector in Myanmar and Mr. Nyi Nyi Lwin from TLMM at the 2nd International Conference on Disability and Disaster Risk Management in Bangladesh from 15th to 17th May, 2018.
  - Presentations made during the National Conference on Leprosy and Disability held in New Delhi, India on 30th and 31st January, 2018:
    - Role of international and national agencies in eliminating Discrimination and Stigma against people affected by Leprosy by Dr. Erwin Cooreman, Team Leader – Global Leprosy Programme, World Health Organization (Regional Office for South-East Asia)
    - Role of international and national agencies in eliminating Discrimination and Stigma against people affected by Leprosy by Dr. Anil Kumar, Deputy Director General (Leprosy), National Leprosy Eradication Programme + Video clip of Pledge being taken + Video Clip of Hon’ble Prime Minister of India, Mr. Narendra Modi on Leprosy Eradication in India
    - The Experience of the Hansen’s Disease History Project in the Philippines by Dr. Maria Serena I. Diokno, Professor of History, University of the Philippines
    - Empowering the movement of people with disabilities – Nothing about us without us by Carmen Lucia Lopes Fogaca, President, National Organization of the Physically Disabled of Brazil (ONEDEF) and Advisor, – National Council for the Rights of Persons with Disabilities, Ministry of Justice of Brazil
    - A look into in the past to change the future of people affected by Hansen’s disease by Francisco Faustino, Member, National Coordination, MORHAN and Member, Leprosy Commission of the Human Rights Secretariat, Ministry of Justice of Brazil
    - Leprosy is not a problem but the result of the mindset: Inclusive Leprosy Forum is real education medium towards good understanding of leprosy by Paulus Manek, Chairman, PerhimpunanMandiriKusta (PerMaTa) Indonesia
    - Sharing Experiences on Eliminating Discrimination against People Affected by Leprosy and Mainstreaming Leprosy Issues in Myanmar by U Soe Win, person affected by Leprosy from Myanmar and Dr Zaw Moe Aung, Country Director, TLMM
    - Best Practices on eliminating discrimination against people affected by Leprosy and mainstreaming Leprosy issue into the larger disability movement by Mohammed Kamal Uddin, Ex-President and Chief Advisor – Advisory Board, Disadvantaged People’s Association (DAPA)
5. Videos:
6. Advocacy (India):
  - 138th Report of Parliamentary Committee Report for Integration and Empowerment of Persons affected by Leprosy 2010
  - Background Note on the National Conference on Leprosy organised by the National Human Rights Commission (NHRC) on 17th April, 2015
  - Major Recommendations of the National Conference on Leprosy organised by the National Human Rights Commission (NHRC) on 17th April, 2015
  - Eliminating Discrimination Against Persons Affected by Leprosy (April 2015) – Report No. 256 submitted by the Law Commission of India
  - Registration of persons affected with Leprosy for Aadhar cards:
  - Compilation of 119 discriminatory laws against people affected by Leprosy in India
  - Compilation of 119 discriminatory laws against people affected by Leprosy in India (State-wise)
  - Supreme Court Order (10th September, 2018) on the PIL filed by Vidhi Centre for Legal Policy for repealing the 119 discriminatory laws against people affected by Leprosy in India
  - Submission filed by Vidhi Centre for Legal Policy in compliance of the directions issued by Supreme Court on 10th September, 2018
  - Supreme Court Order dated 14th September, 2018 on the PIL – Pankaj Sinha vs. Union of India and others
7. Media Coverage:
(DPI aims through its programme interventions, media campaigns, conferences, to ensure the conversation on Leprosy continues not just within the disability movement, but in the larger public domain as well.)