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 29. The day was initiated in 1954 by French philanthropist and writer, Raoul Follereau, as a way to raise global awareness of the ancient disease and call attention to the fact that it can be prevented, treated and cured. Later, the initiative to observe the day was undertaken by International Federation of Anti-Leprosy Associations (ILEP). Founded in 1966, ILEP is a federation of 14 international NGOs.
The theme of this year's WLD has been decided as 'Zero Disabilities in girls and boys affected by leprosy' in support of the WHO Global Leprosy Target.
The WLD is an opportunity to advocate for the leprosy victims, including their family members. It also provides us an opportunity to review how much progress we have made in building a society that ensures the rights of the victims.
According to ILEP, leprosy is still being transmitted to children. Children are suffering from lifelong disabilities caused by leprosy. Proactive, early detection and treatment of leprosy must be an international priority, to prevent leprosy being transmitted to children and disabilities developing.
People 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 affected people in society.
In Bangladesh, the disease is still a health problem. Through curable with timely and regular treatment and its treatment and test are free in the country, the disease 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 the country in the recent years. About 10 percent of the victims later become disabled due to lack of timely treatment. Being disabled, they lost earning capacity for their families. But it is possible to check the disability, caused by leprosy, if it is diagnosed and treated quickly.
According to an unofficial estimate, about 3000 to 3500 leprosy patients take medical services from hospitals in the country for two months every year. It means that we have to spend a lot of money for the purpose.
Leprosy is an infectious disease of the skin and nerves. It is transmitted via droplets, from the nose and mouth, during close and frequent contacts with untreated cases. The main symptom of leprosy is disfiguring skin sores, lumps, or bumps that do not go away after several weeks or months. The skin sores are pale-colored. Leprosy is one of the oldest diseases recorded in the world. The disease targets the nervous system, which includes the feet, hands and face, said TLMI-B.
In Bangladesh, people are subjected to discrimination and social exclusion due to leprosy. The effects of leprosy are exacerbated by the negative stigma surrounding the disease, said rights activists.
Leprosy is not a priority for in the government. There are pocket areas where leprosy prevalence is still high. A good number of people Released from Treatment (RFT) are not yet covered by community-based rehabilitation programme.
The WLD 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 should develop the capacity of the victims to do self-advocacy. We need an environment that enables them 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.
We want leprosy expertise retained and further developed. It is needed to ensure early case detection, quality and quick treatment, continuous multidrug therapy (MDT) supply, and counseling (during and after treatment) for the affected people and their families.
Leprosy complication and management (Simple ulcer, reactions and neuritis care) /POD, and Reconstructive surgery are 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.
We should pursue governance and clinical system at all levels of government health system that allows people affected by leprosy to have medical services at all public health centers. Integration at the basic level is understood to ensure space for leprosy treatment in all upazilla health complexes, MDT services and gradual complication management in the government health system.
We want to see a future where access to quality leprosy and other treatment is available through the government to ensure that even if TLMI-B and/or other NGO's are not providing leprosy services, that services will still be provided and accessible at all government health complexes.
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, actively creates opportunity to exercise those rights and takes corrective measures in the case of violation of such rights so that each member of the society can express her/his full potential and live a meaningful life with dignity.
Advocacy is needed for the rights of the victims by the use of different media and in cooperation with other organizations. We can hold lobbying networking and using pressure groups to press for policy change wherever necessary, advocacy with concerned authorities for ensuring enough education on leprosy in MBBS and nursing curriculum for integration of treatment of leprosy, advocacy with government health institutions to get their staff training in leprosy care updated and work for ensuring that the affected people are not deprived of different disabled people's facilities made available for them.
We can also hold advocacy with employers and industrialists for job opportunities for the affected people, advocacy with parliamentarians to harmonize any law anything contrary to human rights granted to all citizens by 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 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 complication are important.
For awareness, we can use different means such as the mass media, orientation and teaching with people affected by 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.
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. It would be a delightful moment for Bangladesh when there is no leprosy in the country.
(The writer, a journalist, can be reached at email@example.com)
Md. Sazedul Islam