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oldest diseases known to mankind and people affected by it continue to be rejected and neglected by society due to its outdated image of being contagious and disfiguring.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.

Disabled People’s 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 People’s 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 persons with Leprosy in DPI from the 18 high prevalent countries. It also hopes to create greater awareness and visibility about issues of persons with Leprosy amongst the larger national and international disability movement.

Disabled People’s International (DPI) has members in 15 out of the 18 countries with high prevalence listed above.There are no members in Myanmar, Brazil and South Sudan. 14 out of these 18 countries have ratified the CRPD as on 15th August 2013.

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 its continued success and contribution in eradication of Leprosy, the chairman of The Nippon Foundation, Mr. YoheiSasakawa has been chosen to be WHO's Goodwill Ambassador for Leprosy Elimination.

Latest initiatives of The Nippon Foundation:

  1. International Leprosy Symposium at the Vatican
    Held on June 9-10 and jointly organized by the Pontifical Council for Health Care Workers, The Good Samaritan Foundation, and The Nippon Foundation, this was the Vatican’s first international and interfaith symposium on Leprosy, hosted to enhance awareness of Leprosy and dispel the discrimination that people affected by the disease face.
  2. Announcement of the Global Appeal on 26th January, 2016
    Partnering with Junior Chamber International (JCI), the Global Appeal sought to promote activities by young people to preserve the harsh history of the disease as a legacy of humanity, and was attended by Prime Minister Shinzo Abe and Yasuhisa Shiozaki, Minister of Health, Labour and Welfare. The Global Appeal will provide an opportunity for people around the world to gain a proper understanding of Leprosy, and think and take action to eliminate prejudice and discrimination towards the disease. On the occasion, The Nippon Foundation also held the Hansen's Disease History as Heritage of Humanity symposium, upon taking responsibility for the operation of the National Hansen’s Disease Museum.

For more information on The Nippon Foundation click here Opens in a new window

Rights of Persons Affected by Leprosy

For centuries, the 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.

(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.

Following 18 countries have prevalence rate of more than 1000 cases per year:

  1. Angola
  2. Bangladesh
  3. Brazil
  4. China
  5. Democratic Republic of Congo
  6. India
  7. Ethiopia
  8. Indonesia
  9. Madagascar
  10. Mozambique
  11. Myanmar
  12. Nepal
  13. Nigeria
  14. Philippines
  15. Sri Lanka
  16. South Sudan
  17. Sudan
  18. United Republic of Tanzania

Leprosy is still 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 2011

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, 58.85% of new Leprosy cases in the world are in India,with the number of Leprosy patientswith disabilities having jumped from 2 per cent-3 per cent to 4.6 per cent between 2014 and 2015.

However, 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 Leprosypatients 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 recogniseLeprosy 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 hereOpens in a new window) 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

Useful Links on Leprosy

  1. The Nippon Foundation : Opens in a new window
  2. Association of People Affected by Leprosy(APAL) India Opens in a new window
  3. The Global Appeal:Opens in a new window
    http://www.nippon-foundation.or.jp/en/what/projects/leprosy/appeal/Opens in a new window
  4. Leprosy today:Opens in a new window
    http://www.who.int/wer/2013/wer8835.pdf?ua=1Opens in a new window
  5. Human Rights of People Affected by Leprosy: Opens in a new window
    http://www.ohchr.org/EN/HRBodies/HRC/AdvisoryCommittee/Pages/Leprosy.aspxOpens in a new window
  6. Interview with Javed Abidi on Leprosy: Opens in a new window
  7. Report on the National Conference on Leprosy and Disability in India: Word File Opens in a new window
  8. 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 FileOpens in a new window
  9. Mr. Javed Abidi's interview with Civil Society Magazine Opens in a new window
  10. Baseline Report on Discriminatory Laws against Persons Affected by Leprosy - A Compilation of Efforts and Progress made to Repeal/Amend the Laws Word File Opens in a new window
  11. Press Release on Leprosy:
  12. Mr. Javed Abidi's Interview with Express Healthcare Magazine Opens in a new window
  13. Leprosy In Our Time PPT FileOpens in a new window
  14. "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 PPT FileOpens in a new window
  15. "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 FileOpens in a new window
  16. Background Note on the National Conference on Leprosy organised by the National Human Rights Commission (NHRC) on 17th April, 2015 PPT FileOpens in a new window
  17. Major Recommendations of the National Conference on Leprosy organised by the National Human Rights Commission (NHRC) on 17th April, 2015 PPT FileOpens in a new window
  18. Press Release - Law Commission of India Submits its Report on Leprosy Laws Opens in a new window
  19. Eliminating Discrimination Against Persons Affected by Leprosy (April 2015) - Report No. 256 submitted by the Law Commission of India PPT FileOpens in a new window
  20. Registration of persons affected with Leprosy for Aadhar cards: PPT FileOpens in a new window
  21. 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 FileOpens in a new window
  22. 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. PPT FileOpens in a new window
  23. News Articles:

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.