of leprosy

In this article, Himanshi Srivastava of Amity Law School, Lucknow discusses the laws against discrimination of Leprosy.

What is Leprosy (Hansen’s Disease)?

It is a severe chronic disease of skin and nerve damage of ears, arms and legs of the body. The disease is caused by bacillus (rod-shaped) bacteria called mycobacterium leprae.

In this disease people may experience:

  • Pain areas: the eyes or foot;
  • Skin: Loss of colour, lumps, small lumps, ulcers and redness;
  • Sensory: Reduction of sensation of touch, reduced temperature sensation;
  • Additional problem: Nerve injury, physical deformity, raising foot problem.

Leprosy is a disease which is spread since ancient times. It is one of the recorded oldest disease in history. According to WHO, the first ever known reference of leprosy is from 600 B.C.  It is common in countries like U.S.A, South California, Africa and other territories of U.S.

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TYPES OF LEPROSY

According to Ridley-Jopling System. It has six- classification based on severity of symptoms:

  1. Intermediate Leprosy: A few flat wounds that sometimes can be heal by themselves and can appear to be more severe type.
  2. Tuberculoid Leprosy: A few flat wounds that can be big and numb, that can involve nerves, can heal on its own and is persistent.
  3. Borderline Tuberculoid Leprosy: Wounds similar to tuberculoid but smaller and more numerous, less nerve enlargement, revert to tuberculoid, or any advance form.
  4. Mid-borderline Leprosy: Reddish Plaques, moderate numbness, swollen lymph glands, may regress, and is persistent.
  5. Borderline Lepromatous Leprosy: Many wounds including flat wounds, raised wounds, raised bumps, plaques, and may persist,
  6. Lepromatous Leprosy: Many wounds with bacteria, hair loss, nerve involvement, limb weakness, doesn’t regress.

HOW DOES LEPROSY SPREAD?

It spreads through the contact with the mucus of an infected person. This usually occurs when the infected person sneezes or coughs. The disease isn’t highly contagious. But the constant contact with the untreated person can lead to contracting leprosy.

The bacterium responsible for leprosy multiplies very slowly. The disease has a time period (the time between infection and therefore the look of the primary symptoms) of up to 5 years. Symptoms might not appear for as long as twenty years.

Despite initial discovering mycobacterium leprae (the microorganism that causes leprosy) in 1873, leprosy analysis scientists still don’t completely perceive how leprosy is unfolded.

Most scientists believe that leprosy is spread from person to person in infected metabolism droplets.Whereas this might be a technique during which leprosy is spread, more than fifty percent of the those that develop leprosy have not confirmed contact with an infected person. Factors that will influence how leprosy is spread include:

  • Environmental conditions
  • The degree of susceptibility of the person
  • The extent of exposure.

How Is leprosy spread to household Contacts?

People who live within constant family as an individual with untreated leprosy|infectious disease have an eight-fold enhanced risk of developing the disease. this can be because of genetic factors concerning condition and/or prolonged intimate contact. It’s necessary to note that the partner is the least-at risk family member. The those who are at the best risk of leprosy transmission are:

  • Parents of someone with infectious disease
  • Children of someone with infectious disease
  • Brothers or sisters of someone with infectious disease.

Other attainable Modes of how leprosy is spread:

Leprosy can’t be spread from a mother to her unborn baby, and other people cannot get leprosy through sexual contact.

Why there should be the laws in our Country for Elimination of Discrimination against Leprosy?

In 2014, India had the largest number of latest leprosy cases globally (58%). From 2005 till 2014, the National leprosy Eradication Programme (NLEP) recorded a rate of 1.25 to 1.35 lakh new cases each year. A majority of those are youngsters, who are vulnerable with isolation and discrimination at a young age.

Although leprosy could cause irreversible disabilities, with medical advances, it’s currently a very curable disease. However, a serious obstacle is that the social stigma related to leprosy, and lots of persons affected by leprosy still be outcast from society. Another downside is that of Indian laws, which still directly and indirectly discriminate against persons tormented by leprosy.

In 2010, the United Nations General Assembly unanimously adopted a Resolution on the Elimination of Discrimination against persons tormented by leprosy, accompanied by Principles and tips listing out measures to boost the living conditions of such persons. In addition, the United Nations Convention on the Rights of Persons with Disabilities, 2007 (“UNCRPD”) promotes, protects and ensures the total and equal enjoyment of all human rights and basic freedoms by all persons with disabilities.

India has signed and sanctioned the UNCRPD, and is additionally a member of the United Nations General Assembly that unanimously passed the Resolution on the Elimination of leprosy. However, the Indian government has taken no action to modify or repeal any leprosy laws, or to eliminate discrimination against persons tormented by leprosy. this can be currently an urgent need, and is the focus of this report of the Law Commission.

Accordingly, along with its report and proposals on the issue, the Law Commission has prepared a model draft legislation, titled “Eliminating Discrimination Against Persons affected by leprosy (EDPAL) Bill, 2015”. This draft law contains principles of equity and equal protection before law that must be guaranteed to all persons affected by leprosy or members of their family. It also seeks to promote the social inclusion of persons affected by leprosy and their family members through affirmative action.

Background of the Bill of 2015

There are several laws that are 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 support, bar them from contesting elections, provide for charging higher life insurance premium from them, stop them from travelling in trains, getting driving licences, etc. For an extended time, people and organisations operating within the field of leprosy were vocal about the requirement for repealing these discriminatory laws to finish the legal discrimination being faced by people affected by leprosy.

But it was The leprosy Mission Trust India (TLMTI) who struck while the iron was still red-hot! TLMTI has already identified 14 laws that discriminate against people affected by leprosy. In september 2014, the Modi government decided to repeal obsolete laws within the country. Seizing this chance, TLMTI took the issue of repealing discriminatory laws with the Law Minister of India, and had a series of conferences with the Law Commission of India. With TLMTI’s persistent awareness raising initiatives and lobbying, the Law Commission submitted its report for ‘Eliminating Discrimination against Persons affected by Leprosy’ (Report No. 256 dated april 7, 2015) to Mr D.V. Sadananda Gowda, Hon’ble Minister for Law and Justice, Government of India.

Justice A.P. Shah, Chairman of the Law Commission of India in his above-mentioned report, under para 1.8 states, “The 20th Law Commission took note of the commendable efforts of TLMTI in addressing the considerations of Persons affected by leprosy through its awareness and support initiatives”. TLMTI succeeded in creating the law makers of this country stay awake and notice of the injustice dispensed to people affected by leprosy.

LAWS FOR ELIMINATION OF DISCRIMINATION AGAINST LEPROSY

The Law Commission of India has submitted its Report No. 256 on “Eliminating Discrimination Against Persons affected by Leprosy” to the Union Minister of Law and Justice on 07.04.2015. The report additionally provides a model draft law to eliminate discrimination faced by Persons affected by leprosy.

The key aspects of the draft law are as follows:

  1. Repeal and amendment of certain laws: Besides the repeal of the Lepers Act, 1898, the Law Commission recommends the repeal of discriminatory provisions in various personal laws. It also recommends including persons affected by Leprosy among the list of persons eligible for legal aid under the Legal Services Act, 1987.
  2. Measures against discrimination: The Law Commission recommends that persons affected by leprosy and their family members must not be discriminated against in any institution. It also guarantees to such persons the right to access healthcare, adequate housing, education, employment and other such basic amenities.
  3. Land Rights: Persons affected by leprosy are usually made to relocate to “Leprosy Colonies” in India, but they do not have land rights, and are constantly under fear of eviction. The Law Commission recommends that title and ownership of property in Leprosy Colonies should be legalised, and if land rights cannot be given, alternative settlement options must be explored.
  4. Right to Employment: Many employers misuse existing employment laws to terminate services of persons who are diagnosed with Leprosy. The draft law prohibits the termination of employment of such persons solely due to their association with Leprosy.
  5. Educational and training opportunities: The Law Commission recommends that the draft law should ensure the admission of Persons affected by Leprosy and their family members in schools, colleges and other institutes, as educational qualifications are necessary to allow them access to employment opportunities.
  6. Appropriate use of Language: The use of the term ‘leper’ and similar terms carries negative connotation, hampers efforts for the inclusion of Persons affected by Leprosy into society, and affects their sense of dignity as human beings. The Law Commission recommends that the term ‘leper’ and other such terms in all government and private documents should be replaced with ‘persons affected by Leprosy’ or a similar term.
  7. Right to Freedom of Movement: The draft law ensures that persons affected by Leprosy are guaranteed the right of travel in public transport and the right to obtain a driving license.
  8. Concessions during treatment: The draft law seeks to provide relevant concessions and monetary benefits to persons affected by Leprosy who are undergoing treatment, for their travel, lodging during treatment and medicines.
  9. Social Awareness: Creating awareness regarding the cure and transmission of Leprosy is the best way to address the discrimination and stigma against persons affected by Leprosy and their family. The Law Commission recommends that awareness about the disease, its treatment and curability should be conducted through campaigns and programmes in schools, hospitals, government institutions and private establishments.
  10. Welfare Measures: The draft law imposes specific duties upon establishments to execute certain welfare measures to foster an environment for financial and social growth of persons affected by Leprosy and their families. It also creates Central and State Commissions to strictly enforce such measures, and provides for accountability measures in case of non-enforcement.

EDPAL Bill to EDPAL Act – The long journey


A Bill will become an Act only it’s passed by both the houses of the Parliament. No political party can oppose passing of EDPAL Bill. but during this age of vote-bank politics, which political party will show interest in an insignificant body, like people affected by leprosy, who cannot influence election results?
Even when EDPAL Bill is passed, its implementation is an uphill task. The responsibility to implement varied recommendations lies with different ministries and departments of the government, like Law and Justice, Health and Family Welfare, Social Justice and empowerment, Housing and urban poverty Alleviation, Labour and Employment, Panchayati rule, Railways, Rural Development and a number of different ministries and departments. Who will take the lead in lobbying for getting EDPAL Bill passed and implemented for the good thing about people affected by leprosy?

It is not as easy as we predict. As an example, Rajya Sabha Committee on Petitions had submitted its report (Hundred and thirty-eighth report) on action taken by government on observations/recommendations on a petition signed by Shri Ram Naik, former Union Minister of fossil oil and natural gas and 5 others, praying for integration and management of leprosy affected persons on 22nd November, 2010. There is specific time frame for each and every ministry/department to require action on each issue mentioned in the petition. Over four years later, we discover that no progress has been made.

Conclusion

Leprosy is one of the foremost misunderstood diseases of the world, it poses some distinctive challenges in its management and elimination. A careful examination of the theoretical and sensible approaches of the past will give important insights for the future. to reduce the burden, it’s important to develop a holistic and multi-pronged approach that has key policy changes, a public education campaign, sustainable livelihood programs, skill coaching workshops and bringing in alternative medical stakeholders to generate employment, determine interventions to dispel stigma and mainstream the affected people. Policymakers, health professionals, civil society and public health activists, every one of them has to act as a change agent through their mimetic, legislative and activists roles to win the war against leprosy.

Reference

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