Eradicating Leprosy Is A Distant Thought: Here’s Why

By Robin Michael:

Leprosy is a disease which still strikes fear in the societies as a mutilating, disfiguring, contagious and incurable disease. Because of the horrifying nature of the enigmatic physical disfigurement and since no cure was discovered until the 20th century, leprosy has, for centuries, been a highly stigmatizing disease. Though leprosy is not a disease of the poor, yet it affects poor to a much greater extent because of their social and economic vulnerability. The stigma attached to leprosy leads to loss of employment even before manual labor becomes more difficult due to disability, which often results from late or no treatment. It also leads to exclusion from society, causing physical and emotional distress.

Even to this day, when leprosy is completely curable with MDT (multi drug therapy), some parts of India uphold the belief that leprosy is a divine curse, a punishment of the past sins, and a result of immoral sexual behavior.

With effective implementation of National Leprosy Eradication Programme (NLEP) the government has been able to bring down the incidence of Leprosy in the state from 124 per 10,000 of population in 1983, to 0.5 per 10,000 at present. The declaration of elimination generated a widespread impression that leprosy is no more a health or social concern.

In India 2010-11, a total of 1,26,800 new leprosy cases were detected and put under treatment, among the new cases detected in 2010-11, the proportions were: Multi Bacili cases (48.58%), female (36.20%), children (9.83%) and grade II disability (3.10%). In India, one new case is detected every 5 minutes, including 10,000 new leprosy affected children every year.

Proportion of Child cases were more than 10% of new cases detected in 9 States/UTs viz. (i) Andhra Pradesh 11.96% , (ii) Maharashtra 12.34%, (iii) Bihar 15.75%, (iv) Tamil Nadu 15.72%, (v) Puducherry 16.90%, (vi) D&N Haveli 18.54%, (vii) Sikkim 12.50%, (viii) Karnataka 11.03%, and (ix) Kerala 11.92% .

LEPRA India, a voluntary organization working towards providing treatment, care, socio economic rehabilitation & fights stigma and takes up advocacy issues for the leprosy affected people. LEPRA India has pioneered the concept of Referral Centre. It runs 8 centers in AP out of which 3 are in Hyderabad. The referral centre is envisaged to address the needs of patients referred from primary health centers, health providers and community and private health providers. They provide a range of specialized service like, treatment of complication in leprosy-affected persons e.g. reactions, neuritis and ulcers; provision of specialized appliances for disability care e.g., microcellular rubber (MCR) sandals, grip aids and spectacles; physiotherapy for persons referred for reconstructive surgery.

It has also listed out central and state acts which openly discriminate against the people affected by leprosy.

1. The Dissolution of Muslim Marriage Act 1939, Section 2 (vi), grants divorce if the spouse has been insane for a period of two years or is suffering from leprosy or a virulent venereal disease‟.
2. The Industrial Disputes Act 1947, Section11, provides for termination of service of workmen on the grounds of continued ill-health. This needs to include safeguards protecting leprosy-affected persons.
3. The Orissa Municipal Act 1950, Section 16 (A) (5), disqualifies any person from being elected if they are of unsound mind or are a leprosy or tuberculosis patient. Section 17 (1) (b) states that a councillor shall cease to hold his office if he becomes of unsound mind or a leprosy or a tuberculosis patient. The Orissa Gram Panchayat Act 1964, Section 25 (1) (e), disqualifies any person from being elected or nominated as a sarpanch or any other member of the gram panchayat if they are a deaf-mute or suffering from tuberculosis or an infectious type of leprosy. The Supreme Court ruling in the case of Dhirendra Pandua vs State of Orissa & others (2008) has upheld judgments of an Election Tribunal and the Orissa High Court that leprosy patients cannot contest civic election or hold a municipal office in the State of Orissa. However, the Supreme Court has observed that the legislature may seriously consider whether it is still necessary to retain such provisions in the statutes.
4. The Special Marriage Act 1954, Section 27 (1)(g), states that divorce can be granted if a partner has been suffering from leprosy for at least three years, the disease not having been contracted from the petitioner.
5. The Hindu Marriage Act 1955, Section 13 (iv), gives grounds for divorce if a partner has been suffering for at least three years from avirulent and incurable form of leprosy. Section 10 (1) states that judicial separation can be granted if a partner has been suffering from a virulent form of leprosy for at least one year. A committee has been appointed for repealing these clauses.
6. The Hindu Adoption and Maintenance Act 1956, Section 18 (c), states that a Hindu wife is entitled to live separately from her husband without forfeiting her claim to maintenance if he is suffering from a virulent form of leprosy.
7. The Life Insurance Corporation Act 1956, Section 12, provides for charging of very high premium rates to leprosy-affected persons.
8. The Rajasthan Municipality Act 1959, Section 26 (9), and the Rajasthan Panchayati Raj Act 1994, Section 19 (F), declare leprosy patients ineligible to contest elections.
9. The Indian Divorce Act 1869, Section 10(1), states that a marriage can be dissolved on the grounds that a partner has been suffering from a virulent and incurable form of leprosy for at least the previous two years.
10. The Indian Railways Act 1989, Section 56, gives power to railway authorities to refuse to carry persons suffering from infectious or contagious diseases. This does not specifically exclude leprosy.
11. The Rehabilitation Council of India Act 1992, Section 2 (C), does not cover all the disabilities associated with leprosy under its definition of „handicapped‟.
12. The Chattisgarh and Madhya Pradesh Panchayat Raj Act 1993, Section 36 (1) (H), bars any leprosy patient who spreads infection from becoming a member of a panchayat.
13. The Andhra Pradesh Panchayati Raj Act 1994, Section 19 (2) (B), disqualifies leprosy-affected persons and deaf-mutes from becoming members of panchayats.
14. The Persons with Disabilities Act (Equal Opportunities, Protection of Rights and Full Participation) 1995, Section 2, includes “leprosy cured” under the term „disability‟, but not leprosy-affected persons who have not yet been cured. “Disability” also refers only to medical disability, and does not recognise the social and economic hardship caused by stigma.

Discrimination, and in particular discrimination against a particular category of people, is the worst kind of human rights violation. Such categorizations are a creation of human mind. Disease is a condition of being human. It could happen to anyone. Simple because some people have suffered from leprosy, they are put in a certain category and treated miserably. This is thoroughly against the concept of human rights that should be enjoyed by all human beings, whatever their situation is and wherever they are.

Although significant progress has been made in controlling the disease and reducing the disease burden, much remains to be done in order to sustain the gains and further reduce the impact of the disease, especially the burden due to the physical, mental and socioeconomic consequences of leprosy on persons affected and their families.

The main challenge is to sustain the quality of leprosy services and to ensure that all persons affected by leprosy, wherever they live, have an equal opportunity to be diagnosed and treated by competent health worker.

It is about time we all reiterated our commitment to eradicate leprosy.

(Note: The use of words such as “leper”, “LAPs”, “PALs” to portray persons affected by leprosy in media is not appropriate, as recommended by the United Nations Principles and guidelines for the elimination of discrimination against persons affected by leprosy and their family members.)

[box bg=”#fdf78c” color=”#000″]About the author:

Robin Michael works at LEPRA Society as Manager Fundraising.[/box]