Yes! Leprosy is curable but stigma is hard to cure – WLD 2019
The problem of urban leprosy is considered as one of the important public health issues, that drawn serious attention of urban/municipal health planners in India.
Even today when leprosy is curable, the age old stigma attached to it has not been cured. The stigma is a reality in the lives of the people affected with leprosy that upsets their physical, psychological, social and economic well-being.
Lack of Knowledge and Information, age old beliefs, fear and shame have resulted in stigma of leprosy. It results in irrational behavior towards people affected by leprosy. People still believe that leprosy is a divine punishment for past sins and immoral behavior. Those with leprosy are avoided as they are seen as sinful, and those around them do not want to incur God’s wrath. Since cure for leprosy was not available in the past, contracting leprosy meant life of disability and disfigurement and sure death. Behind the ostracism of those with leprosy and their family members also lies the fear of infection. Leprosy is still believed to be a hereditary disease. Even educated and respected persons can become victims of misconceptions about leprosy. The classic image of a person with disfigured body and bandages: reinforces this belief of physical uncleanliness and moral impurity, thus justifying the ostracism and discrimination.
There are many issues faced by the person suffering with Leprosy and they are:
People affected by leprosy are often ostracized and prevented from accessing community resources (e.g. water) and are excluded from festivals and community gatherings. They are denied education, employment and often lose the freedom to marry a ‘normal’ person. Fear of stigma and discrimination prevents people with leprosy seeking medical treatment for fear of the news going out of the house. They also face discrimination at the hands of health workers, doctors and medical practitioners.
The stigma and discrimination extends to the family members as well. They are treated in similar way and not allowed to function freely in the society. Therefore many families reject the person affected by leprosy for fear of exclusion thus leaving them without family, home and social support networks.
As a result of stigma and discrimination people affected by leprosy often experience a loss of self esteem and dignity and feel fear, shame, hopelessness and guilt. Leprosy often affects the poorest and most marginalized communities who have a history of powerlessness, discrimination and lack of access to their rights and therefore have limited capacity to defend their rights and challenge stigma.
In India, there are several laws discriminating against people affected by leprosy. The British in colonial India passed the ‘Lepers Act, 1898’ which segregated leprosy patients to control spreading of leprosy. With Multi Drug Therapy (MDT) proving cure to leprosy completely, the law was repealed in 1985. Ironically, many laws that were framed on the basis of the ‘Lepers Act, 1898’ are still in force, and they continue to discriminate against people affected by leprosy. There are some laws that directly discriminate against people affected by leprosy. It is pertinent to note that these laws were passed when there was no cure for leprosy. Now that leprosy is completely curable with MDT, there is no justification for these discriminatory laws to exist.
No counties has more laws that discriminate against person affected by leprosy than India, but recent development give hope that change is on the way.
The personal law (Amendments) Bills, 2018, which was submitted to the Indian Parliament on August 10 by Minister for Law and Justice Ravi Shankar Prasad, takes on one of the crueller penalties by looking to eliminate leprosy as ground for the dissolution of marriage or divorce.
Five central laws currently contain such provision: the Divorce Act (1869), the Dissolution of Muslim Marriage Act (1954), the Hindu Marriage Act (1955), and the Hindu Adoption and Maintenance Act (1956).
These are among 119 central and state laws that discriminate on the grounds of leprosy that have been identified by the Vidhi Centre for Legal Policy, an independent think tank in Delhi. Since last year, India’s Supreme Court has been considering a writ petition submitted by the Vidhi centre to uphold the fundamental rights of persons affected by leprosy and repeal all discriminatory laws against them.
Christian, Islamic, Hindu, Buddhist and other religious texts negatively portray leprosy as divine punishment for the sinful and immoral behavior of the person with leprosy. Negative images of leprosy in religious texts are used to legitimize stigma and discrimination against people affected by leprosy in modern society.
Some of the facts about Leprosy in India
WHO defines elimination of leprosy as a prevalence rate of less than 1 case per 10 000 persons
- 85% of new leprosy cases in the world are in India.
- 27 lakhs new cases of leprosy were reported in India during 2013-14.
- 12,043 new cases of leprosy during 2013-14 were children. In 13 states/UT more than 10% of new cases detected were, children.
- 46845 new cases of leprosy during 2013-14 were women.
- A total of 86,000 (0.86 lakh) cases are on record as on 1st April 2014, giving a Prevalence rate (PR) of 0.68 per 10,000 populations.
Chhattisgarh and Dadra & Nagar Haveli have still not achieved elimination.
- To enhance quality of life of leprosy afflicted persons by providing primary level care and provide referrals leprosy centre.
- To eliminate stigma and discrimination among the community in India
The Disease is cured but the stigma attached to it has not been cured
Salini, 42 years married to Raghu from Medchal District of Telangana had noticed skin patches on her face in 2016. Initially she ignored and her husband was not willing to take her to a doctor since the patches are complaint less. Salini having 4 children studying in schools and she was busy with house work and also was working as a daily labour in a nearby brick factory where she used to earn Rs. 150/day.
Those skin patches were growing slowly, new patches appeared in her hands, she had a doubt that her eyes are not closing properly. After repeated requests, her husband took her to a private doctor and diagnose results was allergy and prescribed medicines. But the patches was appearing big, swelling was seen in joints and developed new patches almost all parts of the body, slowly pain developed in her hand and she was not able to hold certain hard things. She stopped going for work, was not attending the kid’s needs, and taking rest all the day. After a lot of pleading by her children her husband took her to another doctor and conducted some tests and treated with ointments and pain killers. Her condition was weak further and after few days she developed fever and shivering. Simultaneously she noticed an ulcer in her right leg and smelling. Besides her physical agony, Salini was even more upset because her husband and children stopped to go near her, one daughter who was at the age of 11 started cooking and was also rearing the cows. Salini’s husband stopped coming to home, he decided to live separate and used to give some money to children for food.
After seeing Salini’s plight, her neighbor took her to ESI hospital since she could not afford to a private doctor any more. The doctors identified her with Leprosy and but was not able to manage her and referred to one of our GLRA supported hospital at Hyderabad, Sivananda Rehabilitation Home which is 120km away.
Salini with the help of neighbor and elder daughter, came to Sivananda, she had undergone tests at the lab, physical examination and many other tests. She was diagnosed with infectious form of Leprosy and also severe reaction. She had been admitted for almost 10 months for multiple complications including disability, none of her family members visited her during her hospital stay, she wanted some moral support from her family at the time she was getting treated, unfortunately nobody used to meet her from her family. Salini was in dilemma where to go after the treatment is over, she realized that she had been abandoned. The psychological stress leads to another episode of reaction leprosy. The hospital staff contacted her family, counseled the family and finally she went back to home after a year. By the time she completed leprosy treatment, patches were started fading, and deformed fingers became functional but she continued to struggle with ulcer in the leg because of loss of sensation. After repeated counseling, her husband agreed staying with her and Salini realized that she cannot work anymore in the brick factory. She will be a dependent to her family and she told this is going be to the worst part in her life without contributing to the needs of the family. But Shalini is thankful to the God almighty and also to the staff at Sivanada for caring her in her most crisis situation.
18 years old Vidhy from a poor family had a swelling on her face. Tests found her with active leprosy and hand with disfigurement. She was getting treated in Leprosy Health Care, Nalgonda. But she was not accepted in the society.
“Being a female it was always important for me to look normal like other girls. When I used to go out to the market people was staring at me as if I am the only ugly girl, so I realized one thing, to live in a society physical appearance matters a lot. Due to living in a poverty life, such disease made me more depressed. My parents aim was only to think about my marriage. Their major concern was that who will marry me, because of the stigma in society, for females such disease is like a curse” she said.
Darshana, a 15 year girl from remote village, born to leprosy affected parents, one among 5 children in a farmer family was studying in grade 10. She also became the victim of leprosy like her parents. Initially she developed a single skin patch in her hand, but over few months its spreads to all over the body.
“Gradually, I was losing focus in my studies. My dream is always to become a teacher, but seeing my condition I stopped studying and I also realized that I am the most ignorant child in my class, so I left out my studies” she said
She was brought to Vimala Dermatological Center with clawing hands and paralyze in face. Positively her treatment is completed and she continued her studies again.