Md. Sazedul Islam

World Leprosy Day (WLD) is annually observed around the world, including in Bangladesh, on the last Sunday of January. This year, it will be observed on January 30. WLD is an opportunity to celebrate people, who have experienced leprosy, raise awareness of the disease, and call for an end to leprosy-related stigma and discrimination.

According to World Health Organization (WHO), the theme of WLD this year has been selected as ‘Unity for Dignity’. The theme stressed on unity in honouring the dignity of those who have experienced leprosy.

WLD was initiated in 1954 by French philanthropist and writer Raoul Follereau to raise global awareness of the ancient disease, especially its socio-economic ramifications. Later, the initiative to observe the day was undertaken by International Federation of Anti-Leprosy Associations (ILEP). Founded in 1966, Switzerland-based ILEP is a federation of 13 international NGOs united to create a world free of leprosy.

The WLD provides us an opportunity to review how much progress we have made in building a society that ensures the rights of the leprosy victims.

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 WLD 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 a national problem but it is always pushed in a corner. The issue has been sidelined more during the outbreak of Covid-19. Through curable with timely and regular treatment and its treatment and test are available for free in the country, leprosy continues to inflict sufferings on our people.

According to The Leprosy Mission International-Bangladesh (TLMI-B), annually on an average about 4,000 new cases are detected in Bangladesh in the recent years. About 10 percent of the victims later become disabled due to lack of timely and quality treatment.

Bangladesh’s leprosy burden ranks fourth-highest in the world. Every year about 3000 leprosy sufferers are affected by complications that require specialized treatment in hospital. If not diagnosed and treated quickly, leprosy can result in debilitating disabilities, and depression. The human suffering resulting from the physical deformities and related social problems are immense.

Leprosy is an infectious disease caused by specific type of bacteria that targets the human body’s nervous system. It generally affects the hands, feet and face. It is believed to spread through extensive exposure to the bacteria causing it. The day aims to not only educate people about the disease, but to draw attention to those affected by it.

There are a number of problems, which are hampering the eradication of leprosy in Bangladesh. Leprosy is yet to get priority to the government, budget in this sector is far less than requirement, and there is scarcity of trained manpower for detecting leprosy cases in the remote areas.

There is lack of awareness raising activities for dispelling stigma over the disease. As the doctors have less experience on leprosy, they find it tough to treat patients. Treatment facilities are not equally available all over the country. There is also lack of treatment facilities for complex cases in the country.
Although easily curable today and rare in developed countries, the disease is surrounded by stigma. Infected people are often discriminated against and ostracized, leading to a lack of access to appropriate medical care, treatment, and even denial of basic human rights.

Leprosy has caused immense human sufferings when the affected remained untreated. Leprosy is not only a medical issue, but also a social issue because of stigma and discrimination that the disease attracts. People are subjected to discrimination and social exclusion due to leprosy. The effects of leprosy are exacerbated by the prejudice surrounding the disease. People are often shunned and isolated by those around them.

Since leprosy massively affects the world’s underprivileged people, the world is beginning to conveniently forget about the disease. World Leprosy Day aims to increase public awareness of leprosy to enable people to seek treatment and live a life of dignity. The day reminds us of the important tasks that lie ahead. We need to take a holistic approach, caring for the physical, social, spiritual and psychological needs of people affected by leprosy. We should work with the affected people, many of whom have few rights.

We need an environment that enables the victims to achieve improved and sustainable livelihood. Our goal should be to realize a sustainable improvement in the health and socio-economic development of the people disabled by leprosy. It is needed to ensure early active case detection, quality and quick treatment, continuous multidrug therapy (MDT) supply, and counseling (during and after treatment) for the affected people and their families.

We want to see a future where access to quality leprosy and other treatment is available through the government to ensure that even if NGOs are not providing leprosy services, that services will still be provided and accessible at all government health complexes.

Adequate budget is needed for the eradication of leprosy. Specific district-wise financial allocation is important, because district Civil Surgeons can easily utilize the money for anti-leprosy activities in their respective areas.

We need advocacy to develop and promote an enabling and sustaining environment in the community/society that acknowledges and respects individually and collectively the basic human rights of every member of the society, including people with leprosy and disability. We need awareness programme for reducing self-stigma as well as social stigma. It will increase social acceptance of the victims. Awareness and capacity building of the families of affected people on leprosy and leprosy complications are important.

We need to work so that the affected people in Bangladesh can be included into general society with equivalent access to resources, services, rights and dignity in society, which will eventually lead to a Bangladesh without leprosy.

In 2016, WHO launched the Global Leprosy Strategy titled ‘Accelerating towards leprosy-free world’ aiming to reinvigorate efforts to control leprosy and avert disabilities.

The Bangladesh government is sincere about eradication of leprosy. While addressing a national conference on leprosy in Dhaka in December 11, 2019 Prime Minister Sheikh Hasina called for ending discrimination against leprosy victims and make Bangladesh leprosy free by 2030.

TLMI-B hoped that leprosy issue will get priority and effective steps to be taken following the Prime Minister’s speech. It would really be a delightful moment for Bangladesh when there is zero leprosy in the country.

The writer is a freelance journalist.