Leprosy in India

Context

Recently Supreme Court has directed centre to bring positive laws to end the stigma and discrimination against Leprosy.

About Leprosy

• Leprosy is one of the oldest diseases known to man. East Africa is the more likely place of origin of leprosy.
• Leprosy also known as Hansen’s disease (HD), is a chronic infection caused by the bacteria Mycobacterium leprae and Mycobacterium lepromatosis.
• Leprosy is not highly infectious. It is transmitted via droplets, from the nose and mouth, during close and frequent contacts with untreated cases. Untreated, leprosy can cause progressive and permanent damage to the skin, nerves, limbs and eyes.
• In 1982 multi drug therapy (MDT) consisting of Rifampicin, Clofazimine and Dapsone were identified as cure for leprosy on recommendation of WHO came into use.

Fast facts

• India has the largest number of new Leprosy cases globally (58%).
• 34 states and UTs achieved elimination out of 36 States/ UTs.
• Only the state of Chhattisgarh and the UT of Dadra & Nagar Haveli were yet to achieve elimination.
• In 2005 India achieved the goal of elimination of leprosy, defined as less than 1 case per 10,000 populations.

Brief timeline

Pre-Independence

• 1898 – The central government passed Lapers Act, which provided legal provision for forcible confinement of leprosy sufferers in India, but the Act was not enforced.

Post-Independence

• 1955 – National Leprosy Control Programme (NLCP)
• 1982 – Introduction of Multidrug therapy (MDT) in  Phases
• 1983 – National Leprosy Eradication Programme.
• 2005 – Elimination of Leprosy at National Level achieved by India
• 2012 – Special action plan for 209 high endemic districts in 16 States/UTs
• 2012 – Under the 12th five-year plan, India intends to start WHO child-to-child policy under which school students will be taught to identify patches on the skin of their classmates.

Issues with leprosy in India

• Persisting discrimination against people affected by leprosy.
  • There is lots of myths, socio-cultural beliefs, and the stigma attached to leprosy
• Lack of awareness about its cure
• Presence of obsolete laws
  • There are a total of 295 obsolete laws, including an 1898 Act which discriminates against leprosy affected people.
  • Hindu Marriage Act considers leprosy a ground for divorce.

• Many employers terminate the employment of persons under Industrial Disputes Act, 1947.

• Many States in India prohibit leprosy patients from running in local elections and deny them employment privileges and benefits.

National leprosy elimination Programme

Objectives

• Early detection through active surveillance by the trained health workers (ASHA)
• Regular treatment of cases by providing Multi-Drug Therapy (MDT) at fixed in or centers a nearby village of moderate to low endemic areas/district;
• Conducting health education and public awareness campaigns to remove social stigma attached to the disease.
• Appropriate medical rehabilitation and leprosy ulcer care services.

In 2005, India was officially declared to have eliminated leprosy when new cases fell to less than 1 per 10,000. But this rose number of new challenges

Challenges

• Undetected new cases
  • After 2005 the reporting of new cases is voluntary which may lead to many cases being detected late or people getting treated after disability has set in
• State National Leprosy Eradication Programme units have become diluted with the inclusion of leprosy into the public health programme
• Leprosy health workers were made multipurpose workers with additional responsibilities of HIV and tuberculosis control
• The presence of leprosy in children
• The use of term “elimination” also leads to confusion among general public and to many even in the medical profession.
• Short duration drug trials
• The NLEP in its recent evaluation have acknowledged that there are cases occurring in the community and detection capacity is not matching the level and intensity of disease occurrence
• Since 1982 same three drugs constitute MDT for leprosy is being used which increase the chances of emerge of resistance to these drugs

Law commission report on Leprosy Law

• Shows concern over new leprosy cases every year
• Suggests repeal of discriminatory legal provisions. It listed for abolition personal laws and Acts on beggary.
• The report says Indian law is contrary to UN General Assembly resolution of 2010 on the elimination of discrimination against persons with leprosy.
• Obstacle associated with Social Stigma

Eliminating Discrimination against Persons Affected by Leprosy (EDPAL)

In 2015, Law commission has drafted the Bill Eliminating Discrimination against Persons Affected by Leprosy (EDPAL). Main feature of bill

• Measures against discrimination
• Repeal and amendment of certain laws (e.g. persons eligible for legal aid under the Legal Services Act, 1987)
• Land Rights
• Right to Employment
• Educational and training opportunities
• Right to Freedom of Movement
• Social Awareness
• Welfare Measures

Global efforts

• In 2010, the United Nations General Assembly unanimously adopted a Resolution on the Elimination of Discrimination against Persons affected by Leprosy
  • The resolution sought the abolition of laws, rules, regulations, customs and practices that amounted to discrimination,
  •  It wanted countries to promote the understanding that leprosy is not easily communicable and is curable.
• WHO launched global leprosy strategy 2016-20 titled ‘acceleration towards a leprosy free world’

Recent Initiative

• In 2016 government passed the Repealing and Amending Act to repeal lepers act 1898
• The SPARSH Leprosy Awareness Campaign (SLAC) was launched to promote awareness and address the issues of stigma and discrimination.
• Recently government brings Personal Law Bills 2018 to remove leprosy as a ground for divorce or separation.
• It seeks to amend five Acts. The Divorce Act, 1869, the Dissolution of Muslim Marriage, Act, 1939, the Special Marriage Act, 1954, the Hindu Marriage Act, 1955, the Hindu Adoptions and Maintenance Act, 1956.
• Bill is also meant to provide for the integration of leprosy patients into the mainstream.

Way forward

• There is a nationwide survey to get an estimate of the number of unaccounted leprosy patients
• In India Most often the first lesion to appear is a skin patch and patients often seek help or are referred to a dermatologist. So dermatologist should be trained diagnose and treat leprosy including its complications
• The social marketing approach has much potential in improving community health education program and patient services.
• Monitoring of drug resistance in leprosy is need special importance.
• Long-standing stigma associated with Leprosy and the archaic laws applicable to them needs to be removed.
• Government, NGOs and private agencies need to work together.
• Continued training, skill development and best practice needs to be evolved to provide quality diagnosis and treatment of leprosy.