End Stigma: Mission to provide healthcare for Nigeria’s leprosy community
Alheri Community in Yangoji Village, Kwali Area Council in the Federal Capital Territory (FCT) is home to more than 500 people, made up primarily of persons affected by leprosy and their families. The settlement which has 90 apartments was built by the Federal Capital Territory Administration (FCTA) in late 2006. In addition, there are 22 apartments currently being built by the World Bank with support from The Leprosy Mission Nigeria. The settlement also has a primary school, and a clinic. The ‘Mai angwa’ or Village Head of the community and Sarkin Kutare of Federal Capital Authority, Malam Ali Isah, is a 54-year-old man who is originally from Amanawa town in Sokoto State. He says life has not been easy for him and his community. ‘We are all here because of the fear of stigmatisation’, adding that he has not been to Amanawa for more than 30 years, after he realised he had leprosy as a teenager and fled to avoid the stigma’’.
Leprosy which is also known as Hansen’s Disease, is an infectious disease caused by a bacterium called Mycobacterium Leprae. It is transmitted most commonly through coughing and sneezing from an infected person. It mainly affects the skin and nerves and can lead to deformities of a person’s hands or feet. Leprosy is a slowly degenerative disease, that can take several months to years before its signs and symptoms begin to manifest in an infected person. The incubation period is between 5 to 20 years. Leprosy is one of the neglected tropical diseases and according to the World Health Organisation (WHO), more than 200,000 people were infected with the disease globally in 2016 alone, despite it’s elimination as a public health problem in 2000. Leprosy is prevalent in countries within the tropical region, mainly in Africa and Asia. According to the Nigeria Centre for Disease Control, over 3,500 people get infected with the disease every year in Nigeria and about 25% of them go on to develop physical disabilities.
In Nigeria, control and treatment of Leprosy is coordinated by the National Tuberculosis and Leprosy Control Program, with support from partners especially The Leprosy Mission Nigeria, an international non-governmental organisation. As with Tuberculosis (TB), treatment of leprosy is usually free at government hospitals and clinics in leprosy communities, such as the one in Alheri community. However, life after treatment is a big challenge, especially for individuals that have already developed disabilities. “When your fingers and toenails are deformed and you don’t have money, what can you do? That is why we resort to begging,” says an emotional Malam Ali. In addition to feeding, another major challenge Ali mentioned is healthcare. He notes that drugs and other commodities are hardly available in their clinic and as a result they must seek healthcare outside the community whenever they or their family members fall sick. The nurse on duty at the clinic confirms Malam Ali’s complaint, and says the only services offered at the clinic are the provision of Leprosy drugs and ulcer dressing. “If they have malaria or any other disease, we write the drugs for them to go and buy outside”, she said. Routine relief materials (medical supply and food items) are supplied from the Leprosy Mission Nigeria and occasionally from other well-meaning Nigerians, particularly during Ramadan, Eid and Christmas celebrations. They also take community members who need further treatment to the leprosy referral hospital in Chanchaga, Niger State.
Chanchaga Leprosy Hospital is a Niger state government owned specialist centre for leprosy treatment. Built in 1940 by British missionaries, the hospital was transferred to Niger state government in 1976 and for decades has been a referral point for leprosy patients requiring advanced treatment from many states across the country. It is surrounded by two other leprosy communities and farmlands, and is a walking distance from the IBB specialist hospital in Chanchaga, on the outskirts of Minna. The hospital has two wards, eye and physiotherapy unit, and a theatre suite. There is also a laboratory and a dispensary. The hospital is supported by an Orthopaedic workshop, built and managed by the Leprosy Mission Nigeria, which produces assistive devices including wheelchairs, crutches, protective sandals and artificial legs, and distributes to leprosy patients in the hospital and surrounding leprosy communities, as well as to other states in the North West and North Central. “We produce and distribute at least 300 pieces of each of these devices every year and a lot of persons affected by leprosy are benefitting from them,” Mr. Linus Osuchukwu, the head of the workshop, said, adding that with additional funding, they have the capacity to produce more of these assistive devices.
Inside the hospital’s male ward is 57-year-old Abubakar Usman from Borgu town in Niger state. He has been admitted to the hospital for two months because of a severe ulcer on his leg, which most likely developed because he did not have protective sandals. He now gets wound dressings twice a day in addition to other treatment and has been given sandals from the workshop. He is responding to treatment and should be discharged soon. Sitting on a bench outside the female ward is 50-year-old Aisha Mohammed from Mashegu town. The mother of five is also receiving treatment for an ulcer on her right leg, which developed due to the usage of wooden crutches. She is now using new modern crutches manufactured at the orthopaedic workshop. The hospital also provides services to the two leprosy communities on either side of the hospital, according to Malam Bello Umaru, who leads the two communities. Unlike the residents of Alheri community, the Chanchaga community members do not have to seek routine healthcare elsewhere, as services that are not available at the hospital are provided at the orthopaedic workshop.
The Chanchaga community has more than 200 residents, made up of 37 persons affected by leprosy and their families living in 41 mud houses. The communities were established more than 30 years ago by patients who came for treatment at the hospital and chose to continue living there instead of going back to their states, for fear of stigmatisation. Like Alheri community, the Chanchaga community has a primary school which was recently refurbished by The Leprosy Mission Nigeria with support from the World Bank, and a borehole. The community is allowed to farm on the land surrounding them, has been connected with electricity and occasionally receives food items like their counterparts in Alheri. However, their biggest concern, Umaru says, is fear of being evicted by the government, as they are often reminded that the land does not belong to them. According to the state control Officer of the TB and Leprosy control program, Mr. Joshua Yisa, there are no plans to evict them at the moment. There are however, plans to renovate the hospital, whose structures are severely dilapidated.
The World Health Organisation (WHO) reported the number of new cases of Leprosy at 210, 671 globally as at 2017, with Nigeria accounting for 2,447 new cases. However, there is no available data showing the number of people currently living with the disease in Nigeria. What is clear however, is that leprosy is still being transmitted, and due to its nature, could lead to disabilities before diagnosis is confirmed. According to the country director of The Leprosy Mission Nigeria, Dr. Sunday Udo, training of health workers at primary and secondary levels on diagnosis of leprosy and raising their awareness of signs and symptoms of the disease could help improve early diagnosis and reduce progression to disabilities. Because it initially manifests as skin patches lighter than the normal skin colour, symptoms of leprosy are usually misdiagnosed as other skin conditions by health care workers, missing critical points of cure before deformities set in. Tracing and testing people that have come in direct contact with a confirmed case will also reduce transmission. These are areas the Leprosy Mission Nigeria could provide more technical support on, by working with state primary healthcare development agencies, hospital management boards, epidemiological units, and the Nigeria Centre For Disease Control.
Though Leprosy is curable, the damage it causes in the form of disabilities and the stigmatisation it attracts are huge burdens on the persons affected by the disease. Government and organisations such as the Leprosy Mission Nigeria must do more in creating awareness about leprosy, its prevention and challenges faced by persons affected. . On the January 23, 2019, President Muhammadu Buhari signed the bill banning discrimination against persons with disability into law. Full implementation of this law would gradually reduce stigmatisation and discrimination faced by persons affected by leprosy. It would also provide employment opportunities for them. The Nigeria government should include people affected by leprosy into its various Social Investment Programs as first line beneficiaries.
Every year, the last Sunday in January is celebrated as World Leprosy Day. The theme of the 2019 World Leprosy Day is, “Ending Discrimination, Stigma and Prejudice”. We should all play our part to ensure that a preventable disease such as leprosy is wiped off. Mallam Ali and others affected by leprosy should be fully integrated into Nigerian society so they can live life to the fullest. As a nation, we are only as strong as our most vulnerable communities are.
The Discrimination against Persons with Disabilities (Prohibition) Act is now a law! What can you as a citizen do to make sure those living with disabilities have equal access to public amenities?
January 27th was World Leprosy Day. How have you reached out to communities of people affected by leprosy? Let us know on our social media platforms!