Investigation & Special Reports

Inside Southeast’s Leprosy Settlements: Rejected in society, abandoned by government

From Aloysius Emeka Attah, Onitsha

Leprosy, a chronic but curable infectious disease mainly causing skin lesions and nerve damage, has been an age long sickness often associated with rejection and stigmatization.

Also known as Hansen’s disease, it mainly affects the skin, eyes, and nose and peripheral nerves.

According to the World Health Organisation (WHO), although Nigeria achieved the national leprosy elimination target of less than 1/10,000 population in 1998, factors such as culture, behavioural patterns and social determinants, among others, continue to contribute to an increase in leprosy cases and a poor state of living for individuals with leprosy in Nigeria.

Leprosy remains a serious public health concern in Nigeria, with over 3500 people diagnosed each year and approximately 25% of these patients suffer from one form of disability or the other.

World Leprosy Day is marked every last Sunday of January each year. The Nigerian Medical Association while marking this year’s Day said in a press statement jointly signed by the Chairman, Dr Sebastine Oseghae Oiwoh and Secretary, Dr Ifeoluwa Adetula said that Nigeria was still among the 17 countries that still report more than 1000 cases of leprosy annually.

According to them, the epidemiological data between 2011 and 2021 showed an annual average of 2,754 new cases with 93 per cent of them having the more severe disease that is infectious to others.

They also revealed an average of 8.3 per cent of the new cases are children below the age of 15 suggesting ongoing new infections.

“Of all the new cases an average of 14.3 per cent present with grade 2 disabilities suggesting significant delay in the diagnosis of the disease” they stated.

Throughout history, people afflicted with leprosy have often been ostracized by their communities and families. The Bible in the book of Leviticus 13, 44-48 recorded that those suffering from leprosy are to be declared unclean and made to live apart away from other people.

The level of stigma and disdain experienced by some people living with leprosy is so disheartening as leprosy is seen as the most terrible and despised disease in some areas of Nigeria .

The stigma has long-term negative consequences for people with disabilities, including loss of employment, social ties and reputation, difficulties finding a life partner, divorce and discrimination. As a result, leprosy is frequently referred to as a social killer.

According to a research work by Gabriel Oke, Ifeanyi Nsofor and others, before Nigeria’s independence in 1960, Nigeria had a leprosy prevalence of more than 20% and it was in conformity with existing global thinking and practice at the time that leprosy communities were developed to preserve public health and provide relief to men and women suffering from the disease.

There are about 64 leprosy settlements in Nigeria though some are no more functional. The five southeast states except Imo state has one leprosy settlements each. There is one in Oji River, Enugu state, another in Abakaliki, Ebonyi state , Okija, Anambra State and Uzuakoli, Abia state.

This reporter spent four weeks in the four leprosy settlements in the southeast and saw first- hand, the plight of the inmates, their suffering and government total neglect of the centres over the years. The reporter also observed that the stigma associated with leprosy is sometimes more distressing than the disease itself.

Some of the leprosy patients and those who have been treated and declared free of the disease narrated how they are denied some social and economic opportunities. Some are also rejected by family members and society with such situations having serious repercussions on their psychological health.

At Oji River Leprosy Settlement, living on the bread of sorrow

The reporter’s visit to the Oji River Leprosy Settlement, Enugu state brought to the fore the grim reality of the suffering and anguish which the inmates at the centre pass through. From the lonely footpath that led to the residents and hospital ward of the leprosy victims, the sight speaks glaringly of neglect and abandonment.

Dusty furniture, rickety vehicles abandoned since the old regional governments of Nigeria, leaking roof tops crying for repair welcome one first to the ward where some patients with active leprosy cases were on admission. Others with contoured faces, disjointed legs and hands and with various walking aids and clutches gathered for a meeting that Sunday which the reporter later learnt was convened to discuss how to share the money meant for school fees donated by a philanthropist for some children of the inmates.

There is no sign of government presence in the centre while the basic amenities of life are lacking. A dummy cheque of N200, 000 hanging on the wall donated by former governor of Enugu state, IfeanyI Ugwuanyi during his birthday celebration in 2021 remains the only evidence of state government intervention or assistance to the inmates in the last one decade.

Strolling down to the interior part of the settlement, the reporter met with some of the old among them who have been demobilized either by old age or deep ulcer wounds from the leprosy attack. Some of them are living in ramshackle houses with leaking roofs.

Cut off from humanity for decades

Sitting at the frontage one of the old houses, a relic of Nigeria’s colonial era, was Chinyere Ugwuoke, a veteran among the inmates. Now in her late 70s, Chinyere uses artificial legs having lost her limbs to the devastating effect of leprosy.

She told the reporter that she came into the center in 1972 and has lived in the settlement with no other life outside since then.

Recalling her life journey , she said she was in Aba before she started noticing blisters in her body.

“I’ve spent all my life here so to say because I married a fellow leper here though he is now dead but we have four children. We are in a very harsh condition here. It seems government got tired of us and abandoned us to fate. The church is also trying the much. We depend on charity and no more.

“I’m aged now with no money to take care of my needs while I only sell petty trade here but the capital is no more there. No money to repair the fridge I pray that God will send me vision helpers to change my story” she said.

Chairman of Association of Leprosy Persons at the centre, Benjamin Udeze said the group was formed towards maximizing opportunities for their welfare and interests. In a chat with the reporter, Udeze said no amount of assistance can be enough for them at the settlement

“Living in a colony no be moi moi. I came here 2012 and before my challenge , I was engaged in farming and also planning to pursue higher education but all have been truncated owing to leprosy. The disease disfigured my hands because we didn’t find out on time what was the problem. Though I’m no more on drugs but can’t go back to live a normal life again.

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“To suppress the stigmatic issue, we decided to join here as a family so that if the society rejects you, you don’t reject yourself. Instead of people running away from you when you are in your community, you better stay here and feel at home” he said.

Talking about life in the settlement, Udeze gave a loud sigh and said “Many people don’t want to know that we exist. The hospital here is empty yet we don’t even have access road which can make those on wheelchair to go into town to beg for alms. Who will lead us to the Governor of Enugu state for assistance? The people around him will not even accept our letter to have audience with him.

“Houses are collapsing on our heads here because they are all dilapidated. We turn to beggars in Onitsha before we can feed Obijackson Foundation has been trying for us. We have so many school dropouts because of no money for school fees” he lamented.

Vice Chairman of the association, Romanus Eze from Nkerefi, Enugu State said he has been in the centre since 1983. Now healed but can’t go back home again because of stigmatisation, Eze recalled one incident where one of them went to a canopy to sit during a funeral and lo and behold, everybody scampered leaving only him there.

“To avoid such an embarrassing situation, I’ve decided to live and die here. People dodge you and discriminate against you not minding that leprosy doesn’t spread like that. For over 20 years, I’ve stopped taking the drugs but who will integrate me into the society? He queried sadly.

When the reporter repeated another visit to the centre on a Wednesday, the inmates were in a prayer session with their Chaplain, Rev. Donatus Ezigbo, a priest of the Anglican Communion who manages the centre presently.

Some of them after the prayers were given a plastic bowl each where they dipped their legs into the water inside the bowl

The welfare officer at the centre, Obiageli Igbokwe disclosed that dipping legs in the water known as self-care project (soaking) is a new innovative method of taking care of the wounds.

She said about 34 of the inmates at the centre benefited from the self-care method provided by RedAid where they were given bowl, sponge/soap and blue seal Vaseline which they use in nursing the wounds for healing.

She said that as a welfare officer, she goes out of her way through the assistance of the Anglican Bishop of Oji River, Rt. Rev. Iyke Egbuonu to scout for help for the inmates in various ways like taking care of their medical bills, school fees for their children among others.

Asked how she feels about taking up such tasking job, she said it is a humanitarian work which they decided to undertake for the love of God and humanity.

The Oji River Local Government Control Officer for Tuberculosis, Leprosy and Buruli Ulcer, Emmanuel Omeke in a chat with Saturday Sun confirmed that there are still new cases of leprosy infection while the twin issues of stigma and inadequate government support and funding still compounds the woes of the victims of the disease.

“Just last week, I confirmed two fresh cases of leprosy here. One of them is from Nimo in Njikoka LGA of Anambra State, a young girl of 18 years. When Peter Obi was Governor of Anambra State, he donated a bus to the leprosy welfare association here while Ifeanyi Ugwuanyi as a Governor also gave monetary donation while celebrating his birthday . If the present state government can be giving them monthly financial support, it will go a long way to change their story.

“They live on survival of the fittest. Today, there are about 82 of them here who we call PALS, people living with stigma. They have been cured but are rejected by their people so they can’t go home anymore. They still have scars and deformities from the disease but are no more active carriers” he said.

In Uzuakoli leprosy centre, life is drab and dull

It was a long continuous series of tales of woes and suffering for the inmates at the Uzuakoli Leprosy centre, Abia State when the reporter accessed the place after spending long and tortuous hours owing to the deplorable condition of roads crisscrossing Anambra, Imo and finally berthing at the centre close to Ozuitem in Bende LGA of Abia state.

Established in 1932 and managed by the Methodist Church Nigeria, Uzuakoli Leprosy centre holds some historical records that should ordinarily attract tourist destinations. The famous Ikoli Harcourt Whyte born 1905, diagnosed of Leprosy in 1919 and who led the first ever lepers riot in old Portharcourt , River State later resettled in Uzuakoli centre.

Whyte, a great composer who recorded over 200 evergreen songs spent over 45 years in the centre even after being cured of leprosy, died in 1977 in auto crash and was buried in front of the Chapel of Glory church still standing there today.

While the entrance to the centre wears a new look as the facility also coexists with a hospital, the leprosy centre at the far end of the compound is a rustic world on its own where life is drab, dull and uninspiring.

On the sunny afternoon when the reporter sauntered into the area, there was pin drop silence in the place as if no living soul was inside. Thick overgrown bushes, creaky beds, decrepit toilet facility where rodents and different reptile species engaged in animal dance contest was all there was to see.

With the help of the okada rider that took the reporter to the facility, some noise was made by clapping hands to alert anybody inside that a visitor was around and lo and behold, some of the inmates coughed and started creeping out from their dingy closets.

Saviour Francis Udoh, 38 , from Akwa Ibom narrated to the reporter how he came to the centre after searching for solution for his strange health challenge for years,

“There are no drug in the store here, you fend for yourself. If you have somebody that can give you food, you can go and cook if you have the strength or else hunger will deal with you. I depend on crumbs from people.

Disheveled, skinny with her bones clearly visible , Comfort Iruka from Isukwato Abia state is their mother in the colony as three other men who spoke with the reporter had no wife nor relative staying with them. They confirmed that it is Comfort that actually feeds them most time if she cooks. Comfort said she has decided to take life as she sees it.

Mixed up with the inmates is also a tuberculosis patient, Precious Samuel from Ozuitem, Abia state. She is very pale and dry. With obvious breathing challenges, she narrated her predicament . She said she has taken some drugs for treatment that later developed resistance to the tuberculosis bacteria. She is staying back to continue her drugs in the midst of the lepers.

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When the reporter spoke with the Project Director, Uzuakoli Leprosy Centre, The Rev. Joshua Okpara , he said the management of the centre has done a lot in managing, caring for the inmates and resettling some of the people declared free from leprosy.

He confirmed that some people still staying in the centre till now are those who have been rejected by their people and also confirmed that it was only during the time of Orji Uzor Kalu between 2003 to 2007 that the centre received government attention while successive administrations of Theodore Orji and Okezie Ikpeazu never looked their way in their 16 years combined in office even as they are still looking out for the Alex Otti administration.

Rev Okpara said the centre hosts about 50 inmates presently while they fend for themselves and look up to heaven for help from any charity organization or public spirited individuals.

“The inmate here survive by going into farming even among some of them that have no fingers owing to deformities and amputation from the disease. Considering the prevailing economic situation now, everywhere is so dry and a good number of them are finding it hard to feed” he said.

At Okija leprosy centre, loneliness is a permanent feature

Located along the Onitsha-Owerri expressway while heading towards Ihiala, a small signpost at the expressway leads one to another narrow bush path heading to the Okija Leprosy Centre, Anambra State. In this centre, life is dull and cheerless, no thanks to the same pitiable condition of the inmates.

Gregory Okwuosa has been the longest ‘landlord’ in the centre who takes care of the day to day running of the place with his family. Okwuosa lost his sight 10 years ago after suffering glaucoma and has lived in the centre for almost 30 years. He told the reporter that he has been cured of leprosy and even issued a discharge certificate but because of the deformities already caused by the disease, his people rejected him and he had to settle down at the centre.

“I don’t know whether it is as a result of our location, there is signpost outside but people sparingly visit us. Our children don’t go to school anymore because of school fees. We can engage in poultry farming but we need financial empowerment to achieve that. Except for the Peter Obi administration, no governor has ever remembered us here.

Okwuosa gave kudos also to ObiJackson Foundation and some Okija indigenes in London whom he said have been supporting them and also building a new structure for them.

Okwuosa also praised his wife Onyebuchi whom he recalled agreed to marry him even against the wish of her people and has been supportive all through in his ordeal as a blind survivor of leprosy.

With a blind husband confined to one place, Mrs Onyebuchi is the one that fends for the entire family. To make both ends meet, she is now a labourer at Ogbaru where she goes to farm for people for a fee. If she makes any little money, she uses that to buy foodstuffs and rush home to feed the family.

Another inmate at the Okija centre, Celine Ozor said she was formerly in Oji River centre from where she met her husband, another leper from Ihiala who died 10 years ago. Celina said they later relocated to Anambra centre where she now caters for the three children she had with her late husband.

In a chat with the Director of Public health and Disease control, Ministry of Health Anambra State, Dr Uchechukwu Onyejimbe , he said there are still cases of leprosy in the state but the German Leprosy Tuberculosis Relief group has been assisting the state in eradicating the disease.

Though he said there is no available data handy on the prevalence and success rate of treatment for leprosy in the state, he said the Ministry has been involved in enlightenment programmes about how to detect leprosy and its management through some volunteers.

At Mile Four Hospital Leprosy Unit, Abakaliki, Ebony state, some victims are waiting for death

On the other Sunday the reporter visited the Leprosy Unit at Mile Four Hospital, Abakaliki, Ebonyi state, the inmates were in high spirits singing hymns together. Lined up in the balcony of one of the hospital wards, some of them who are still strong, sang together to God.

But few meters away from the hospital, is the settlement for those who are old and weak from the ravages of the disease. Some of the inmates there said they are already in the departure lounge of their life waiting for death.

One of such is Nwachukwu Odeh from Ezza who is blind and crippled from the effect of the leprosy attack. Nwachukwu caught a pitiable sight to behold as he rolled to a corner of the door when he heard the voice of the reporter. He depends on others to practically feed or do anything. Even his speech is slurred as he managed to talk to the reporter.

“I want to see again. My sight is my biggest problem now since I’ve lost my limbs to the leprosy attack. The Reverend Sisters are trying for us but we are confined to this place waiting for death which will come at God’s appointed time” he muttered

Other inmates like Augustine Alieze from Amaegu Izzi, Josephine Elom from Ezza married to an Ikwo man and Salome Edeh from Eha-mufu, Enugu state all shared their stories of rejection from their kith and kin which has made them to settle at the centre without thinking of going home anymore.

Christian Onwe, Head of Department (HOD) Leprosy Unit, Mile 4 Hospital, Abakaliki told the reporter that their work is more of a charity/ missionary work than that of paid job whose emphasis is placed on the high amount involved.

Onwe confirmed also that the Ebonyi state government has offered little or no help to the centre in terms of catering for the welfare of the leprosy patients while the bulk of the welfare package comes from the Catholic Diocese of Abakaliki and the Missionary Reverend Sisters who take care of the day to day running of the unit.

He said the centre is like a referral centre with cases referred from Uzuakoli, Oji and other parts of the country but the facility is also facing the challenge of the non-availability of the major drug used in treating the multiple-drug therapy for treating active cases.

“We are told that the drug is out of stock now and we have about four people on admission now with active cases. There is need for incentives from government both for the hospital, the staff and the patients too.” he said.

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Bogus state budgets, zero allocation for leprosy cases

A careful perusal of budgets of the four states in the southeast with existing leprosy settlements have shown that the states have zero budgetary allocations for leprosy and its associated issues. From Anambra, Abia, Enugu and Ebonyi, it is the same story all through.

According to Nairametrics.com, Anambra state ranked N0 7 out of 10 states in Nigeria with the least/lowest health budgets for the year 2024. With an approved total budget of N592, 234, 594, 176 for the 2024 fiscal year, the health sector expenditure budget for the year is N23, 271,748,769 representing allocated percentage of 5.47%. While various recipients of the health budget expenditure included Ministry of Health, Indigenous Medicine and Herbal practice, state health insurance agency, Chukwuemeka Odumegwu Ojukwu Teaching Hospital (COOUTH), Oxygen plant etc, there was no single mention of anything for the leprosy centre or leprosy prevention plans in the budget.

But when the reporter encountered Dr Afam Obidike, the Anambra State Commissioner for Health in Awka and confronted him on the observations, he defended the situation and said leprosy matters were covered in the provision made for Neglected Tropical Diseases (NTD) in the budget. He said government doesn’t neglect leprosy matters in the state while some donor agencies like the Carter Group is supporting the government in handling such cases in the state.

For Ebonyi, the state ranks N0 3 among the top 10 states with the lowest allocation to health in Nigeria. With a total budget of N202, 127, 918, 907 for the 2024 fiscal year, the state has a health expenditure budget of a paltry N13, 387, 910,000, a percentage allocation of 6.62%.

Areas of focus in the budget included the School of Health Technology, King David University Hospital, Ebonyi state Health Insurance Agency etc with nothing allocated for leprosy care or elimination programme in the state. The state Commissioner for Health, Dr Moses Ekuma when contacted for comments declined speaking on the matter.

The situation is the same for Enugu State Government whose approved 2024 budget has a total expenditure outlay of N521, 561,386,000.00. Dubbed as “the Budget of Disruptive Economic Growth” with the government policy focus on various sectors like infrastructure and education, a careful perusal also revealed zero allocation to leprosy issues even when the health sector got an allocation of N24, 597, 421,000 for capital expenditure and a total expenditure of N36, 087,011,789.

Contacted for clarification on this seeming negligence, the state Commissioner for Health, Prof. Obi Emmanuel Ikechukwu demanded a written text from the reporter but failed to respond again after repeated calls when the text was delivered to his phone via sms and whatsapp messages.

The Uzuakoli Leprosy Centre is still eagerly waiting for the Alex Otti touch despite the euphoria that greeted the budget of N567.24 billion for the 2024 fiscal year. Christened Citizen budget in Abia , it has a Health budget of N85,295,605,952 Abia state which represents 15.04% of its total budget, demonstrating a strong commitment to improving healthcare services for the people.

Though the budget has been criticized for having a deficit of N319 billion which would be sourced through loans, the reporter’s efforts to find out why the leprosy centre in the state has not received any intervention from the state government met a brick wall as the Commissioner for Health, Prof. Enoch Uche when contacted pleaded for more time to acclimatize having been newly appointed following the controversial ousting of the former Commissioner, Dr Ngozi Okoronkwo.

Leprosy not a hereditary disease, curable – Dr Ahoma, Consultant Public Health Physician

Giving further professional insight on the disease of leprosy and the need for the society to approach the issue in its proper perspective, the attending Consultant DOTS/Leprosy Clinic, Nnamdi Azikiwe University Teaching Hospital (NAUTH), Nnewi, Dr Ahoma Mbanuzuru said there is need for people’s perception towards leprosy disease to change and realize that leprosy disease is not hereditary and is also treatable.

“Leprosy is a chronic communicable disease but it is not hereditary, not genetically or sexually transferred. It can affect both gender and also transcends regional boundaries. It is a bacteria disease in the same family of tuberculosis.

“People should be encouraged to seek treatment on time while those suffering already should not be stigmatized. On the part of government, there is need for general investment in healthcare system” he said.

Government needs to bridge the knowledge gap in leprosy matters- Michael Odama, Programme Officer, RedAid Nigeria

In Enugu, the reporter met with a civil society activist and Programme Officer, RedAid Nigeria, Michael Odama . Michael who was also a victim of leprosy and has seen it all in issues of ignorance about the disease, the effects, the stigma and other challenges told the reporter that in order to bridge the knowledge gap in information about leprosy and how to manage its associated problem, there is an urgent need for the government to include such lessons into the secondary school curriculum.

Michael who narrated a moving story about what he passed through in the course of suffering leprosy disclosed that he dropped out of university owing to the social stigma associated with the disease and it took him extra willpower and hidden grace of God to muster the courage to go back and complete his studies.

He called for the enlisting of those who have been cleared of the disease as Leprosy Champion Ambassadors.

“There is need for more community sensitization because the society is not favorable to leprosy patients. 5 percent of leprosy patients actually graduate from the university, 95 percent others can’t even finish secondary school talk more of proceeding to the university because of the stigma from the deformities.” He said.

It is a crime to discriminate against lepers and former lepers –Human Rights Activist

On the way forward, a human rights activist, Chinedu Mbachu told Saturday Sun in an interview that Freedom from discrimination of any sort on the basis of health ground, gender, ethnic background among others is a fundamental human right guaranteed in Chapter 4 Section 42 of the Nigerian Constitution as well as in the Universal Declaration of Human Rights (UDHR) document which Nigeria is a state party to. He said citizens suffering or cured from leprosy should be assisted to enjoy these rights unhindered.

He also reminded governments at all levels to be mindful of the fundamental objectives of government which they swore to protect in Chapter 2 Section 14 (2)b that explicitly stated that “the security and welfare of the people shall be the primary shall be the primary purpose of government”

“This welfare is all encompassing and no citizen is excluded likewise the lepers and former lepers in various settlements in Nigeria. It is an indictment on the part of government if they are neglected or discriminated against. This is a clarion call for action” he stated.

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