Home Letters World Leprosy Day: Ending Discrimination, Stigma, Prejudice By Lateef Ositelu

World Leprosy Day: Ending Discrimination, Stigma, Prejudice By Lateef Ositelu

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The word leper was historically used to refer to someone who suffered from leprosy, a bacterial illness that affects the nerves, skin, and respiratory tract. Although, it was originally used a medical term the Greek root is lepros, “scaly”, today the world leper is generally considered to be offensive. We should also remember that the biblical ten lepers who were made whole by Jesus. However, it was not their fault that they were lepers; whereas it was thought that most people contracted leprosy as a punishment from God for their sins. Lepers that were poor had to carry begging bowls. Societies considers them burden because they could not work.

Globally, on Sunday, January 26, the World Leprosy Day(WLD) will be commemorated. The world is raising awareness of the disease that many people believe to be extinct. But my clinical knowledge about Leprosy was very shallow. I hitherto presumed, it is an ancient contagious and deadly disease acclaimed to have existed as far back 500BC and that it can be curtailed only by isolating the affected person in a colony to prevent infecting  people globally.

I became cognizant of leprosy disease proper in 2018 when I was one of the officials of the Chapel of Glory, Ogun State Christian Pilgrims Welfare Board, led by the Chaplain, Pastor Julius Oderinde to present food items among others to lepers Colony, Iberekodo, Abeokuta. There I got wind of the havoc leprosy disease had caused humanity and how it is cable of wrecking socio-economic development of nation if not checked, particularly about the general negligence in Nigeria, prompted me to crave for public awareness and support from well-meaning Nigerians on the reemergence of the disease and the need for Government at all levels to put in place effective surveillance as well as control measures.

In a document from National Tuberculosis and Leprosy Control Programme, Nigeria is among the seventeen countries in the world that are still reporting more than 1,000 new cases of Leprosy annually. Despite achieving the World Health Organization’s (WHO) elimination target of less than one person per 10,000 populations at national level in 1998, with these significant pockets of Leprosy disease, its endemicity remain at sub-national level across the country. These pockets are mostly located in 19 states which include; Ogun, Akwa-Ibom, Adamawa, Bauchi, Benue, Borno, Cross River, Ebonyi, Jigawa, Kaduna, Kano, Kebbi, Kogi, Niger, Sokoto, Taraba, Yobe, and Zamfara, while cases in other states are in cluster.  It is estimated that 4000 leprosy cases occur in Nigeria annually and Ogun State is one of the states where Leprosy cases are being notified every quarter of the year. An average of 30 cases of Leprosy is found yearly, meaning that there is still active transmission of the disease in our Communities which could be tackled effectively if government can intensify more effort on public awareness and adopt active approach mechanism of detecting the disease before spreading.

Recent clinical findings showed that most of the victims of this disease do not believe that they were infected because they do not understand its symptoms at early stage due to poor public awareness. Most of the victims were treating something else for too long only to discover a full blown leprosy with evident of fingers numbs among other symptoms. Nigeria with estimated population of over 250 million citizens should not be caught unaware from silent reemergence of leprosy in the Society.

Although there is World Leprosy’s Day, established in 1954 by a French philanthropist called Raoul Follereau which is observed on the last Sunday of January every year to commiserate with the victims of this disease with major objective of creating public awareness about the contagious disease, to mitigate stigma against the victims and to inform people that the ancient disease is easily curable in 21st Century due to discovery of potent drugs among other clinical therapy. But government at all level should leave such a global day only in the hands of Non- Governmental Organizations (NGOs), but to effectively partner with other donors and also put in place a Special Leprosy Committee to drive the awareness campaign effectively in primary and secondary schools across the nation with the spirit of educating the younger ones on the disease and charging them on healthy living.

Though, Leprosy is now known as Hansen’s disease, rechristened after Norwegian Scientist, Dr. Gerhard Henrik Amauer Hansen who discovered the growing bacterium known as Mycobacterium Leprae in 1873 as the cause of the illness. Initially before this breakthrough, people do not have a clear glimpse of the actual cause of the disease. The exact cause of the disease is wrapped in mysteries and theories that surged from curse from God or punishment for one’s own sins or related to the law of Karma or attack of witchcraft or demonic wind-spirit or hereditary, insect bite or sudden climate changes.

According to Webster’s Third New International Dictionary, Leprosy is a chronic disease caused by infection with an acid- fast bacillus (Mycobacterium) and characterized by formation of nodules on the surface of the body and especially on the face or by the appearance of tuberculoid macules on the skin that enlarge and spread and are accompanied by the loss of sensation followed by the involvement of nerves with eventual paralysis, weakening muscle and production of deformity and mutilations. Experts further disclosed that leprosy is a contagious disease that causes, severe skin sores disfigurement, nerve damage in the arms, legs, nose, eyes, and skin area of the body and that the disease comes in light coloured or red skin patches with reduced sensation, numbness in hands and feet.

Method of transmitting the disease from one person to the other is through airborne droplets from coughing or sneezing of untreated person. The disease has been around since ancient times, often surrounded by terrifying negative stigma with incurable myths and mutilations. Medical experts revealed that, incubation period varies from person  to person, while it might take about three to six years in some people before the  symptoms appears after coming in contact with the bacterium, it takes 20 years in others before the symptoms finally appears. This long incubation period makes it very difficult for doctor to determine except through diagnosis called Skin biopsy. But the concern is to detect this disease early in time before escalating and causing irreparable bodily damage to unsuspecting Nigerians.

By and large, the disease is now completely curable but great numbers of people are not only unaware of the disease but also suffering silently from this curable disease due to reduced and lackadaisical governments stand, poor public awareness and continued public flare stigma attached to the patients like ‘Inu igbo Ladete n gbe’, meaning – a lepers abode is in the isolated settlement, further worsened their health situation, as people regard them as dreadful personality making them more despair without support in life. An expert disclosed that, those that are living in Lepers colony have been treated and are completely healthy, but the challenge is the left over physical disabilities which are evidences of being victims of the bacterium. What the treated patients need, are the socio- economic support, financial aids and proper integration into normal life. But the challenges has been consistent poor awareness on the disease at the grassroots, People still believe that the disease is highly contagious and without cure.

Today, patient of new leprosy cases are no more isolated in colony unlike old practice, they are now being treated like normal patient with free clinical therapy and drug at various health facilities. This is due to discovery of modern drugs like Dapsone, Rifampicin and Dofazamine and the adoption of Multi Drug Therapy (MDT) that cures leprosy patient in a- 12 month dose, just like the discovery of antiretroviral drugs to stem HIV/AIDs endemic in the society today.

Mr. Pius Ogbu, an expert and the Operations Manager, Leprosy Mission Nigeria said leprosy is regarded as defeated disease and people do not regard it as dreadful bacterium again and coupled with the World Health Organizations (WHO) declaration in 1998 that Nigeria had achieved the global health body’s target of reducing the proportion of leprosy patients to below one case per 10,000 people, led to loss of interest at sustaining the tempo of surveillance and people assumed the disease will die a natural death which doesn’t work that way.

One of the shocking facts is that, there are records of new surges of the disease across the world which portends great danger for innocent people. What this requires is the collective action from federal and state governments even the general public to wake up to their responsibilities and continue to create awareness about this bacillus before it back fire. Let’s change the notion being carried about that leprosy is completely eradicated’, not that success had not be recorded, but the notion will continue to cause negligence and promote care free attitude about the disease in the society.

In reality, Leprosy still affects millions of people, between 200,000 and 300,000 new leprosy cases have been detected globally every year since 2005, according to World Health Organization. In 2016, Nigeria recorded 2,576 new cases, of which 149 were children. Around 2,000 new cases were reported each year. In 2017, over 7 percent of these were children and 15 percent came with visible disabilities, evidence of ongoing transmission and late diagnosis, which is dangerous.  With this development, Nigeria is now ranking third among African countries with highest burden of leprosy after Ethiopia and democratic Republic of Congo.

Findings showed that the disease might begin to pose new danger to humanity again due to late report of new cases. Medical experts say those that are not treated on time might in between the period spread the disease. It was discovered that, human body is the only host of the M. Bacterium, the airborne disease can exist. And can be transmitted through coughing and sneezing from untreated person.  It has the ability to live for two to three days outside the host body. Just like the case of 23 year old Chidinma Nmadubuike from Southeast Nigeria, who was later diagnosed of the disease after six years of visiting hospital and traditional healers that the baffling sores and lesions doted across her body were symptoms of leprosy and by the time she was finally diagnosed her face was already deformed. Experts opined the disease during this long period, might have escaped into the air within the environs to cause havoc.

Experts are worried that Nigeria could be facing a re-emergence of leprosy at a time global health spotlight and funding focus on disease like HIV, malaria, among others. According to Mr. Joshua Okpara, Project Director, Uzuakoli Leprosy Centre, Southeast Nigeria said government is no longer responding to assist in the control of the disease. Most of the support we got now is from churches, individual donors among others. And the disease is still silently active because we are recording new cases, but we will not relent at contributing our quota at stemming the spate of Leprosy, though it is considered a high risk disease but advance in medicine has made it completely treatable.

Ending stigma is critical in the fight to end leprosy. Not only does stigma lead to the exclusion of and discrimination towards people with leprosy, it can also prevent people from seeking treatment when they suspect something is wrong – leading to a greater likelihood of avoidable disability, and of transmitting the disease over time. In contrast, early detection and treatment can prevent the development of disability and destroy the harmful bacteria that cause leprosy.

“Stigma and ignorance about leprosy are still major hurdles in stopping new patients’ treatment,” says Experts. “All of us need to help raise awareness of this preventable disease and to counter ignorance and discriminatory attitudes.”

In her response, the Ogun state Leprosy Programme Manager, Dr. Oguntayo Esther, said the present Administration of Governor Dapo Abiodun is very much aware of the havoc the disease can cause and has not relented at ensuring that the M. Bacterium disease is being well monitored by Leprosy Desk Officer (LDO) across the twenty Local Government Areas of the state.  She listed some of the current Leprosy Control activities in the state which include; Mini Leprosy Eradication Campaign (mini-LEC) a passive case finding strategy of searching for leprosy cases through German Leprosy Relief Association (GLRA) support, free diagnosis service and free treatment and case management with drugs from National Tuberculosis and Leprosy Control programme and attending to Leprosy patients in 306 health facilities across the state.

However, there are still a lot of challenges facing the Leprosy control programmes in Nigeria as documented by National Strategic Plan Leprosy Control, this include Non-release of funding, dwindling financial support from partners, reduced capacity to manage Leprosy, lack of  awareness creation on Media, no structured advocacy with resultant low Government  commitment, Low awareness about the diseases in the community, inadequate Information, Education and Communication Materials, Limited engagement of community members for social mobilization in most states and limited funding for leprosy

There are also innovative strategies for improving Leprosy case finding reported from some states that participated in the review. The best practices include the engagement of traditional healers, PMVs, TBAs, private health facilities, LOGGING UNTO THE POLIO campaign to conduct house to house awareness creation on Leprosy symptoms and signs, contact examination of contacts of index cases. These approaches were not all known to the National Leprosy programme. Henceforth, it will be more appropriate for take the lead in coordinating and ensuring that all endemic states implement these innovative strategies.

Nigeria has recently signed the National Health Bill into law. This bill seeks to allocate 1 percent of the funds generated into the consolidated revenue account of the federal Government for primary health care. The Leprosy can leverage funds from the National primary Health care for effective Leprosy control. The political commitment and non-release of Government funding at all levels has hampered leprosy control in the Country but this change with the recent Governments attitude there is hope that there would be improved political and financial commitment from Government.

We can jointly observe 2020 World Leprosy Day together by ending discrimination, stigmatization and prejudice against people with Hansen’s disease, and share with friends and family members that leprosy is now a completely curable disease.

Ositelu, Of Ministry of Information & Strategy, Ogun State, Nigeria

Can be reached via; adegbenroositelu@gmail.com or 08035495562

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