Leprosy: Fight stigma, discrimination to eliminate the disease

IF you witness physical disfiguring in your skin sores, lumps, or bumps that do not go away after several weeks or months, the skin sores are pale-coloured; then consult a doctor soon and get treatment of the disease; because it may be leprosy. Don't be surprised if your near and dear ones leave you alone due to stigma against leprosy! Yes, I really mean it; because it happens! The unacceptable, bitter reality is: due to ignorance, lack of proper knowledge, and misinformation about leprosy resulted in developing high degree of stigma against the disease. The family members and the community like to avoid all contact with leprosy patients! Even globally, studies reveal, one-third of leprosy patients were left by their spouses due to stigma!
In Bangladesh, the social stigma is prevalent even among educated sections of the community. For example, Aduri is a poor girl of 15 years of age. She works as a housemaid. Her employer hears that she is getting treatment for leprosy. The next time while Aduri comes to work, her highly educated employer called her and said, "You don't have to come to work anymore. We don't need your services". This is a form of stigma often called discrimination, also called experienced or enacted stigma. Due to stigma and discrimination, leprosy patients like to get their disease unnecessarily hidden and they are reluctant to get treatment. These are very common in Bangladesh and other leprosy-endemic countries. So, we must stop stigma at any cost to eliminate leprosy.   
Pursuant to the medical science, leprosy is an age-old disease. The records show that leprosy existed even around the period 600 BC. Leprosy is caused by an acid-fast, rod-shaped, slow-growing type of bacteria named 'Mycobacterium leprae'. A Norwegian scientist named Dr Amauer Hansen isolated the bacterium in 1873. After his name, leprosy is also called Hansen's disease. Leprosy is an infectious, communicable and neglected tropical disease (NTD), but it is fully curable. It is actually not that contagious. The incubation period of the disease is long and variable. It affects different people in different ways, according to their immune response. The types of leprosy are: Tuberculoid; Lepromatous; and Borderline.  
A person with leprosy-related nerve-damage may not feel pain when the hands, legs, or feet are cut, burned, or otherwise injured. Without treatment, leprosy can permanently damage skin, nerves, arms, legs, feet, and eyes of the leprosy patients.
 Though Bangladesh has made considerable advances in curbing leprosy; still there are some high endemic geographic areas especially Gaibandha district. The rate of leprosy patients there is more than one case per 10,000 people.  As a result, it is still a public health problem in Bangladesh. Certainly we should feel shame for the national failure for yet to eliminate leprosy in our country! According to the National Guidelines and Technical Manual on Leprosy 2014, in Bangladesh, at present about 3,500 leprosy patients are detected per year in the past few years. The ratio of male female is 1.54: 1. The percentage of child cases below 15 years was around 5 to 6. Among the newly detected cases only 30-32 per cent cases are reporting voluntarily, the manual added.
Research shows that globally, every two minutes, a new case of leprosy is detected and seven out of 10 cases are children. So children are more likely to get leprosy than adults. World Health Organization (WHO) estimates, about 180,000 people worldwide are at present infected with leprosy; most of them are in Asia and Africa.  Many people believe that leprosy is a curse or punishment from God. But that belief is totally wrong. The actual truth: leprosy is caused by bacteria. It is never because of any sin or curse. The prevention of leprosy ultimately lies in the early diagnosis and treatment of those individuals suspected or diagnosed as having leprosy; thereby preventing further transmission of the disease to others.
Fight stigma and discrimination to eliminate leprosy
Leprosy-related documents show that stigma is typically a very deep rooted social process.  It refers to unfavourable attitudes and beliefs directed toward someone or something. The stigma against leprosy not only burdens the affected individuals but also their family members. Stigma affects many aspects of the lives of people affected by leprosy including mobility, interpersonal relationships, marriage, education, employment, leisure activities, and attendance at social and religious functions. The commonly used definition of stigma is: 'A social process that exists when elements of labelling, stereotyping, separation, status loss and discrimination occur in a power situation that allows them'. Stigma can be classified into three types: 1) Enacted; 2) Perceived; and 3) Self stigma.
Considering all those reasons, if the stigmas are not stopped, and negative mindset are not changed, it will be difficult to eliminate leprosy.  Both stigma and fear can only be dealt with through combination of strategies and integrated programs. Human rights, self respect, social justice, principles of privacy and confidentiality and United Nations resolution of 2010 issues should be included with the programs. Education with scientific knowledge and media campaigns help to correct false beliefs and raise awareness of new advances to stop stigma and discrimination to eliminate leprosy.
Important factors to reach the goal of leprosy-free Bangladesh
The government in partnership with the stakeholders through public private partnership (PPP) must work to eliminate leprosy earlier with a strong political commitment and provision of adequate resources. There is concern that women may have less access to health care in some situations. Steps should be taken to ensure that women, girls, and children have adequate access to diagnostic services. Women mobilization for sensitizing about the disease and utilizing their services for awareness generation can be very helpful to reduce stigma.  
The religious leaders are a potential force and religious places can be a platform to bring a social change. Social marketing strategies can change community attitudes to leprosy. WHO encourages integrating leprosy into the general health service. Leprosy patients should be treated in the same outpatient department as those with any other disease. It is for showing the patients and their communities that leprosy is not a 'different' disease.
Matthew S Halder, country director of Leprosy Mission International-Bangladesh said, "Proper integration and coordination between the government and stakeholders are a must to make our Bangladesh free from leprosy. The role of media is very important as an integral stakeholder to disseminate necessary information among the people to fight stigma and discrimination to eliminate leprosy".
A three-day international summit on leprosy was held in Bangkok, Thailand on July 24-26, 2014. The Ministers of Health from the 17 high-burden leprosy countries: Angola, Bangladesh, Brazil, China, DR Congo, Ethiopia, Indonesia, Madagascar, Mozambique, Myanmar, Nepal, Nigeria, the Philippines, South Sudan, Sri Lanka, Sudan and Tanzania, and the stakeholders of all WHO regions attended the Summit. Mr Yohei Sasakawa, chairperson of the Nippon Foundation and WHO Goodwill Ambassador for Leprosy Elimination, cautioned at the Summit that the remaining challenges are becoming increasingly more difficult and complex. Sasakawa further said, "The target populations are living with difficulties in hard-to-reach areas. Moreover, available resources in each country have declined."  
Dr Samlee Plianbangchang, Regional Director, WHO South-East Asia said,  "Our challenge is to sustain the quality of leprosy services and to ensure that all persons affected by leprosy, wherever they live, have an equal opportunity to be diagnosed early and treated by competent health workers. While we've covered a lot of ground in reducing the disease burden in all endemic countries, there is no room for complacency. The final battle against leprosy is yet to be won."
In Bangladesh, we have observed World Leprosy Day this year on the last Sunday in January 26, like other countries in the globe. World Leprosy Day raises awareness in the world.  The Leprosy Day was chosen by Raoul Follereau in 1953 to coincide with the anniversary of Mahatma Ghandi's assassination on 30th January 1948. We should involve and utilize the local government and city corporation representatives while we observe World Leprosy Day every year to disseminate specific information/messages for Behaviour Change Communication (BCC) on leprosy both in rural and urban areas. Also, we need to develop effective, attractive and impressive communication messages against stigma and discrimination through different media to use. 'Celebrities' can be involved in the programs and events.  
State-level media coordination committees can be of great help in planning activities in the state for time-befitting media campaigns. Health promotion activities should be carried out for the people. Experts recommended refocus on gaps and lapses. Programs should also give emphasize for mainstreaming of leprosy issues that can prevent remerging leprosy as a public health problem. Mainstreaming means that all health policy-making and programming by WHO Member States and the Secretariat should integrate gender, equity and human rights.  
We must apply special focus on high-endemic geographic areas within countries through vigorous and innovative approaches towards timely case detection and treatment completion aiming to achieve leprosy elimination at sub-national levels; achieve the global target of reducing the occurrence of new cases with visible deformity (grade 2 disability) to less than one case per million population by the year 2020 or before; monitor the progress towards attainment of targets through a mechanism at the national level with technical support from WHO; explore research areas and continue national, divisional, district level surveillance and share data/information, reports with stakeholders.
The time is now to accomplish the goal of leprosy-free Bangladesh and to show the successes including our other achievements especially in health sectors to the globe.
The writer is a media person and a member of Health Information for All (HIFA), London.
Email: [email protected]