Leprosy is one of the leading causes of permanent physical disability. Though Bangladesh has achieved a lot of success in many areas of health services, it is yet to defeat leprosy. Leprosy is not only a physical disease, but also a social disease and a big cause of discrimination.
All leprosy-affected people are made victims of stigma and discrimination and they are shunned by the society, which hampers their daily lives, livelihood, and treatment, thereby putting their lives at risk. Discrimination, harmful stereotypes and stigma in the community, family, schools and the workplace prevent healthy relationships and social interactions.
A report by the World Health Organization (WHO), places Bangladesh in sixth amongst the 23 highly leprosy-hit countries in the world, and Bangladesh is 10th in terms of the number of people with disability caused by leprosy, in the world.
According to the National Leprosy Program (NLP), though annually about 3000 to 3500 new leprosy cases are detected in Bangladesh, the real number is likely to be double the figure.
Leprosy resulting in disability
Disability is often a consequence of leprosy, especially if it is not diagnosed early enough. Due to the lack of timely, quality treatment, people suffering from leprosy eventually become impaired. Common disabilities caused by leprosy include loss of mobility in hands and feet, painful ulcers and infections, and even avoidable blindness.
According to The Leprosy Mission International-Bangladesh (TLMI-B), about 6-8% of leprosy patients later have disabilities when not treated. Besides, 5% of the patients face the problem of loss of sensation in their hands initially, and later become challenged due to the lack of treatment.
Leprosy is a chronic, progressive bacterial infection caused by the bacteria, Mycobacterium leprae. It primarily affects the nerves of the extremities, the skin, the lining of the nose, and the upper respiratory tract. The disease produces skin ulcers, nerve damage, and muscle weakness. If it isn’t treated, it can cause severe disfigurement and significant disability.
It is not so straight-forward for a leprosy patient to take medication as many complications may arise. If the medication is not managed properly, it may also cause disabilities. Disability caused by leprosy may be kept under check if the patients receive reconstructive surgery at the initial stage. This highlights the need for there to be proper arrangement of reconstructive surgery at the medical colleges.
Disability caused by leprosy can be more burdensome as it spreads further stigma, while disability caused by other reasons, do not spread as much stigma.
We have the “Persons with Disabilities Rights and Protection Act 2013” for protecting the rights of impaired people, but the matter of leprosy- related disability is not mentioned in it. Hence, those who develop disabilities due to leprosy are deprived of these services offered by the government. The authorities concerned need to take the necessary steps in order to amend the act and include those with disabilities due to leprosy in the criteria, ensuring they are entitled to government facilities.
Changing perceptions and taking an initiative
Leprosy related disabilities hamper the daily overall life of the victims due to the surrounding stigma, and because the victims often fail to contribute to family and society, becoming entirely dependent on them. Finding no other alternative, they are forced to take to the streets, begging for livelihood.
Addressing the leprosy issue is in our national interest because the disability caused by it causes humanitarian, health, and economic problems for our country.
The disease is treatable and its tests and treatment are available for free in the country. It is necessary to take steps for the treatment of leprosy complications, including reconstructive surgery, at district level hospitals and the country’s medical colleges.
Mass awareness campaigns involving media stations across the country can play an important role in bringing the affected people under timely treatment and establishing their rights. We need to concentrate on community-based rehabilitation, advocacy, capacity building, education, and stigma reduction.
It is necessary to take steps so that people with disabilities can have livelihoods by arranging livelihood training and vocational training to enhance their skill. It is important to ensure that people with disabilities are included in the country’s development.
Bangladesh is committed to eradicating leprosy by 2030. Adequate financial allocation in the national budget is essential to turn the government's pledge into reality. We have to act now to accelerate towards zero leprosy infection and zero leprosy disability as per the vision of WHO Global Leprosy Strategy 2021-2030.
The country’s Disability Act should be inclusive by keeping the provision of leprosy related disability in it, which can pave the way for access to government services for those impaired due to leprosy.
Let us pledge to work together to make Bangladesh a better place for all by defeating leprosy.
Md Sazedul Islam is a freelance journalist.