This article is written by Tushar Gerewal who is pursuing a Certificate Course in Media and Entertainment Law: Contracts, Licensing and Regulations from LawSikho.

Leprosy and its causes

Leprosy (also called Hansen’s Disease) is a chronic infectious disease caused by Mycobacterium Leprae, a slowly multiplying, rod-shaped bacillus. The bacillus was first discovered by a Norwegian doctor Gerhard Armauer Hansen in 1973.

Symptoms of leprosy

A person affected by leprosy may show the signs like pigmented, reddish and/or pale skin, hands and limbs becoming numb or loss of sensation and feeling in a particular patch of skin. 

The bacteria multiply slowly, resulting in a long incubation period ranging from five years to twenty years. With the passage of time, the deformities develop in two-stages, namely:

Grade I disability

This is the initial phase of the bacteria affecting the peripheral nervous system leading to the loss of sensation. 

Grade II disability

The disability becomes severe in this stage as the impairment becomes more visible; as the eyes, skin and limbs get damaged permanently.

Transmission and types of leprosy

An untreated patient of leprosy might spread the infection via his mucus, released while sneezing or coughing. The possibility of finding an undiagnosed leprosy patient is ten times more amongst persons of the same household in comparison to the general population. The reason for the same is that frequent contact with the person affected by leprosy increases the chances of spreading infection.  

Following factors shall also increase the chances of transmitting infection:

1. Living in insanitary conditions;
2. Malnutrition;
3. Lack of personal hygiene.

There are two main brackets under which leprosy can be categorised:

1. Lepromatous– In this form of leprosy, the infection spreads easily if the individual is not given treatment or there is inadequate treatment. Thus, it is the severe form of leprosy in comparison to the other form. 
2. Non-Lepromatous– A synonym of non-severe form of leprosy, the infection does not spread easily from the patient to the others.

According to the Law Commission of India’s Report No. 256, in India most of the people affected by leprosy fall under the non-lepromatous bracket.          

Detection of leprosy cases in India

To eliminate leprosy, timely detection and treatment is the need of the hour. This as a result, helps to reduce the number of cases; thereby reducing the level of deformities developed in the affected patients. 

In 1985 India recorded about 7,30,540 cases of Leprosy. The objective of NLEP (National Leprosy Eradication Program) was to eradicate leprosy as a public health issue. The World Health Organisation (WHO) defines ‘Eradication’ as the situation when the prevalence falls below 1 case per 10,000 people. After the introduction of Multi-Drug Treatment (MTD) in 1985, the number of cases reduced to 1 case per 10,000 people by 2005. The same was an outcome of door-to-door surveys and other similar drives with the aim of administering MTD.

After India’s subsequent declaration of leprosy not being a public health issue anymore, leprosy was made a part of the general health care system. As a result, between 2005 and 2014, leprosy cases increased at a rate of 1.25 to 1.35 lakh every year. The year of 2013-14 alone witnessed a rise of 1.27 lakh new cases.

In 2015, the Law Commission of India in its Report No. 256 observed that the although MTD kills 99.9% of the leprosy bacterium in its very first dosage, it requires continuity, regularity and supervision. Accordingly, the emphasis was laid on early detection of the cases with immediate treatment through MDT to improve the situation.    

The stigma and discrimination

According to the 2019 data of the World Health Organisation, India reported a decrease in the number of cases. In the year 2016-17, the country reported 1,35,485 cases. This number reduced to 1,20,334 cases in 2017-18.

It is appreciable that the government’s efforts and the authorities have cured the disease to a great extent. But we have still not cured the stigma and fear prevailing in the society till date. 

It is due to the social stigma and fear of getting isolated from the society that a person affected by leprosy does not get himself diagnosed in the early stages. The National Leprosy Elimination Program (NLEP) also found the same to be the cause for undetected cases and low voluntary reporting. 

The disease of Leprosy is a two-sided sword. Firstly, the fear of isolation and loss of social interaction chains a person from undertaking treatment. Secondly, the resultant impairment and permanent disfigurement of the body, in the long run, further aggravates the situation. Leprosy is also considered a punishment from God in many societies which also acts as a hindrance. 

Apart from the social stigma attached to the disease, the persons affected by leprosy also become a victim of discrimination. The disfigured limbs, facial features or the affected visible skin areas lead to constant, unwelcoming attention in public places. It subjects the person affected by leprosy to feel guilty and victimised. The thought process of the individual is affected to a great extent as there develops a feeling of shame, trauma, low self-esteem and hopelessness. 

It has been observed that majorly the poor are affected by leprosy (due to malnutrition, weak immunity and unsanitary living conditions). The loss of employment opportunity is also a way in which such persons are discriminated against. As a result, they are subjected to begging to maintain themselves, thereby compromising living a life of dignity.  

The Law Commission of India in its 256th Report observed that the ones who are affected by discrimination majorly are children. Apart from being isolated from society and family members, they are also isolated from the opportunities of growth and education.        

It was further observed by the commission that approximately 850 Leprosy colonies are present in the country. The people suffering from leprosy are abandoned by society and even from their loved ones in some cases, leading to the establishment of these colonies.          

In the matter of Maharashtra State Road Transport Corporation v Uttam Shatrughan Raserao, the Hon’ble Bombay High Court has observed that as leprosy is a curable disease today, emphasis should be laid on the treatment and rehabilitation of the person affected by leprosy.

The Hon’ble Supreme Court in the case of Pankaj Sinha v. Union of India in 2014 had noted that leprosy still remains a stigmatic disease in the society due to lack of empathy from the concerned authorities. Further, it is this stigma which affects human dignity and the concept of humanity.

Should leprosy be included in the Rights of Persons with Disabilities Act?

The Law Commission of India in its 131st Report on Leprosy took into consideration eleven points for the purpose of empowering the persons affected by leprosy. One point of consideration revolved around the introduction of an amendment to the legislations that were not in consonance with the interests of the persons affected by leprosy. 

In the 256th Report, the Law Commission of India observed that The Persons with Disabilities Act, 1995 under Section 2(i)(iii), the term ‘disability’ includes a Leprosy-cured person. 

Section 2(n) of the Act of 1995, defines ‘leprosy-cured person’ as an individual who has been cured of leprosy but is suffering from:

1. loss of sensation in hands or feet as well as loss of sensation and paresis in the eye and eye-lid but with no manifest deformity.
2. manifest deformity and paresis but having sufficient mobility in their hands and feet to enable them to engage in normal economic activity.
3. extreme physical deformity as well as advanced age which prevents him from undertaking any gainful occupation.

According to TLMTI, the term ‘Leprosy-cured’ in the Act fails to include the people who are not detected or currently undergoing treatment of leprosy. In other words, the term leprosy-cured becomes very restrictive. 

The Law Commission in its Report No. 256 had recommended that the term leprosy cured required to be eliminated or required a broader interpretation to cover every category of people affected by leprosy.

In the immediate next year, The Rights of Persons With Disabilities Act, 2016 was enacted. Para one of the Schedule to the Act and Section 34(c) consider leprosy as a part of the locomotor disability. Unfortunately, due to reasons unknown, no amendments to the definition have been made so far as prescribed by the Law Commission and TLMTI. The said provision of the present Act remains the same as of the earlier one.

In light of the recommendation of the commission and observations of TLMTI, it is important that the provision of the Act concerning the persons affected by leprosy is broadened. The current provisions apply to a limited number of persons only.  

Outcomes of the said inclusion

As seen above, the present Act still has a very limited scope which should be broadened. The following shall be the outcome of the said inclusion:

1. It shall ensure that the provisions shall apply every individual who is detected and is suffering, who is has been cured and also who is undetected. 
2. If an amendment to the provisions of the Act is introduced, subsequently the laws discriminatory will also need to go through the required amendments.  
3. Accordingly, it shall also help to create a better situation for the persons affected by leprosy.

Conclusion

Leprosy is one of the most stigmatised diseases that leads to discrimination and social exclusion of the person so affected. A considerable number of cases go undetected due to the widespread stigma and fear of isolation from society. The persons affected by leprosy are discriminated due to their disfigured appearance and wrong notions about the transmission of the disease. Often, they are denied employment opportunity, are victimised and are subjected to a life of seclusion. 

The 256th Report of the Law Commission of India recommended that the provisions of The Persons With Disabilities Act, 1995 should be broadened to include every category of a person affected by leprosy and not just a person cured of leprosy. Unfortunately, due to reasons unknown, proposed amendments to the definition have been made to The Rights of Persons With Disabilities Act, 2016. 

The recommended amendment is of vital importance as it shall lead to the recognition of all the persons so affected. It shall result in better and timely delivery of justice along with the possibility of the subsequent amendment to the other discriminatory laws containing provisions of leprosy.

References

• https://www.who.int/health-topics/leprosy#tab=tab_2
• https://dghs.gov.in/content/1349_3_NationalLeprosyEradicationProgramme.aspx#:~:text=Since%20then%2C%20remarkable%20progress%20has,National%20level%20in%20December%202005.
• https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4925770/
• https://www.who.int/lep/resources/Guide_Int_E.pdf
• https://www.who.int/lep/mdt/en/#:~:text=The%20drugs%20used%20in%20WHO,of%20both%20types%20of%20leprosy.

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