WORLD Leprosy Day, observed on the last Sunday of January, was initiated in 1954 by French philanthropist and writer Raoul Follereau as a way to raise global awareness of the disease. The Switzerland-based International Federation of Anti-Leprosy Associations, a federation of 13 international non-governmental organisations set up in 1966, later took the initiative to observe the day to a world free of leprosy. The day’s theme this year is: Ending leprosy related discrimination, stigma and prejudice.
On the occasion, the International Federation of Anti-Leprosy Associations calls out states on using the UN principles and guidelines for the elimination of discrimination against persons affected by leprosy and their family, which were adopted by the Human Rights Council in 2010.
People still look at this disease as a curse and the stigma becomes even stronger in countries where people have not been educated about the disease. The day is aimed at informing and educating the public on the facts of leprosy to reduce the stigma and facilitate inclusion of the affected people in society.
In Bangladesh, leprosy is still a health problem. Although curable with timely and regular treatment and its treatment and test being available free, the disease continues to inflict sufferings on people.
According to the Leprosy Mission International-Bangladesh, about 3500–4000 new cases are detected in Bangladesh a year. About 8–10 per cent of the victims later become disabled for lack lack of timely treatment.
There are a number of problems that may hamper the government’s ‘zero leprosy by 2030’ target. The disease is yet to get priority in the health sector. Budget in this sector is far less than required and there is scarcity of trained human resources for detecting leprosy cases in remote areas.
There is lack of awareness activities to dispel the stigma associated with the disease. A few doctors have experiences of treating leprosy. Treatment facilities are not equally available all over the country. There is also lack of treatment facilities for complex cases.
Other problems also arise with leprosy. People are subjected to discrimination and social exclusion. People are often shunned and isolated.
There are pocket areas where leprosy prevalence is still high. A number of people discharged from treatment are not covered by community-based rehabilitation programmes.
World Leprosy Day also reminds us of the important task that lie ahead. We need to take a holistic approach, caring for the physical, social, spiritual and psychological needs of people affected with leprosy. We should work with the affected people.
We should develop the capacity of people affected with leprosy to help them to do self-advocacy. We need an environment that enables them to achieve improved and sustainable livelihood. Our goal should be to realise a sustainable improvement in the health and socio-economic development of the people disabled by leprosy.
We need to ensure an early active case detection, quality and quick treatment, continuous multidrug therapy supply and counselling for the affected people and their family. Leprosy complication and management and reconstructive surgery are also needed. Provision for assistive devices, good functional referral system, self-care capacity enhancement for the leprosy victims and disability care centre in the community for the affected people are also required.
The government should ensure policy changes. Employers and industrialists should ensure job opportunities for the affected people. It is needed to harmonise any law contrary to human rights granted to all citizens by the constitution and also by the Universal Declaration of Human Rights and the UN Convention on the Rights of People with Disabilities.
We need awareness programme to reduce self-stigma as well as social stigma. It will increase social acceptance of the victims. For awareness, we can use different means such as the mass media, orientation and teaching with people affected with leprosy, federations and associations, seminars with religious leaders, community leaders, human rights activists, national day observation with leprosy message, meetings with different types of stakeholders and slide shows, street play, street rallies and posters with leprosy message.
Md Sazedul Islam is a freelance journalist.
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