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Leprosy victims deserve to live with dignity

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Syed Momenuzzaman   :
The leprosy victims have been neglected by people for a long time due to lack of proper knowledge about leprosy, though they deserve to live with dignity. Besides medical treatment, they need moral support so that they can regain self-confidence and self-respect.       
Though curable and its test and treatment are available for free across the country, leprosy continues to inflict sufferings on our people. Leprosy is a least infectious disease caused by Mycobacterium leprae. Leprosy is not hereditary. Transmission is believed to be airborne through close and frequent contact with an infected, untreated person.
Leprosy mainly affects the skin and nerves. The main symptoms of leprosy include muscle weakness, numbness in the hands, arms, feet, legs, and skin lesions. The skin lesions have decreased sensation to touch, temperature, or pain. They do not heal after several weeks and lighter than your normal skin tone.
"Leprosy is now fully curable with multi-drug therapy (MDT). If not treated in time, it can cause permanent damage to nerves and muscle paralysis in the extremities and face. Annually on an average 3,500 new leprosy cases are detected in the country in the recent years. About 10 percent of them later turn disabled for their failure to take timely and proper treatment", said The Leprosy Mission International-Bangladesh (TLMI-B).
Due to misconceptions about the disease, people affected by it, and even their families, continue to suffer discrimination. The disease still carries a lot of stigma in our society. The concept of heredity, facial disfigurement, mutilation of limbs and a long incubation all contributed to the mystery about its fear and disgust.
The fear leads to the stigma and discrimination, which increases misconceptions about the disease's transmission and treatment. The stigma resulted in discriminatory attitudes and practices that continue to blight the lives of many people. The affected persons face exclusion in many aspects of lives such as mobility, interpersonal relationships, marriage, employment, attendance at social and religious functions.
As long as leprosy transmission and its associated disabilities exist, so will stigma and discrimination. Stigma is a serious obstacle to case finding and to the effectiveness of treatment, which are the major concern of disease control programmes.
A multi-sectoral approach is needed to fight against stigma attached to leprosy. NGOs should be given right space in the eradication campaigns. It is needed to quash the stigma. Stigma should be replaced with images of Honour, Dignity, Self-Confidence, Respect and Creativity. Social Injustice and Discrimination be replaced with a concerted Global Effort aimed at the Restoration of Human Rights.
We need to carry out Information, Education and Communication (IEC) activities to increase community awareness about leprosy to promote voluntary case reporting and minimize social stigma. Voluntary reporting by patients is the most practical and feasible mode of case detection.  
Detecting leprosy patients in the country's remote areas has become a big challenge to eradication programme. Necessary steps are needed to address the problem.
There is a lack of necessary treatment facilities for leprosy patients. Adequate facilities for managing complications of leprosy like deformities/ulcers/lepra reactions are needed. The government should arrange necessary facilities with more sensitive and skilled doctors for the leprosy victims across the country. Uninterrupted supply of MDT drugs and other logistics support need to be ensured across the country.
People who have been infected with leprosy also are entitled to the same rights as everyone else in every spheres of life. In other words, people should not be discriminated against on the grounds of having or having had leprosy.
Following the adoption of the United Nations Convention on the Rights of Persons with Disabilities (CRPD), disability is increasingly understood as a human rights issue. It is also an important development issue.
 (To be continued)
On July 2, 2015, a resolution aimed at eliminating discrimination and the stigma associated with leprosy and to promote, protect and respect the human rights of those affected by leprosy, and their family members was unanimously adopted at the 29th Session of the United Nations Human Rights Council (UNHRC) in Geneva.
At present, leprosy eradication activities has become NGO-dependent. Government support is imperative as it is not possible for NGOs to handle the situation alone. Collaboration between the government and NGOs can bring a positive result. Advocacy and information education communication programmes on leprosy at different levels of the society involving the government and the NGOs would make the eradication programme a success. Joint partnership is important as it may speed up the process of leprosy eradication.
We need a national strategy with a rights-based approach in leprosy services is as follows:
Taking necessary steps for early new case detection and their timely and complete management, quality leprosy services in an integrated setup by qualified health workers, rehabilitation of people affected by leprosy including medical and community-based rehabilitation, reducing stigma and discrimination through advocacy, social mobilization, IEC activities and ensuring social inclusion, strengthening referral centers for complications management, and meaningful involvement of people affected by leprosy in leprosy services and address human right issues.
We should support the victims to overcome the effects of leprosy through physiotherapy, self-care training and other rehabilitation services. We can also help them to transform their lives through the provision of education, vocational training and livelihood support so that they can feed and clothe their family and play a full and dignified part in the life of their community.
Physical rehabilitation includes physiotherapy, occupational therapy, surgery and the provision of appliances like crutches, wheelchairs and prostheses for people with mobility problems.
Livelihoods training and vocational training is for enabling disabled people to access livelihood programmes in their communities.
Community-based rehabilitation means ensuring that people with disabilities are included in the development that is going on in communities.
Training of people with disabilities is to give them skills to break down barriers and stand up for their rights; and of governments and other organisations to ensure they include disabled people in their programmes.
Together we should raise our voice to demand equality for people affected by leprosy, for their rights to be upheld and for prejudice and stigma to be overcome. An enhanced effort, renewed commitment, and an inclusive approach are needed to end leprosy. It is needed to break the chains of leprosy, empower people to obtain healing, attain dignity and be able to lead a full life.
For eradication, we need to detect all the patients timely and bring them under treatment. It is needed to enable every health worker to diagnose and treat leprosy, improve awareness of its early signs, and motivate people to seek treatment, and ensure that all leprosy patients are cured.
The Sustainable Development Goals (SDGs) were adopted in 2015 by the United Nations under the banner '17 goals to transform our world'. One of the most crucial aims of the SDGs is to ensure that no one is left behind. We should work to ensure that those affected by leprosy and persons with disabilities are fully included and benefitted from the development process.
Leprosy victims, mostly poor people, are living in subhuman conditions. It is hoped that the government will attach priority to the leprosy issue, which would help build a better society through eradicating the disease.
 (The writer is a journalist)

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