Inside Nigeria’s ‘neglected’ Leprosy community

Alheri community, on the Abuja-Kogi expressway, is one of the few remaining clusters of people suffering from leprosy in Nigeria.

Located inside Yangoji Village, Kwali Area Council in the Federal Capital Territory (FCT), Alheri is home to about 2,000 people, primarily made up of leprosy infected persons and their families.

The settlement was originally launched with 90 apartments built by the Federal Capital Territory Administration (FCTA) in 2006. About 50 more apartments have been added since then through initiatives such as the World Bank and the Leprosy Mission Nigeria partnership. The settlement has a primary school, a clinic and few other basic amenities.

Just like most lepers inhabiting the settlement, the ‘Mai Angwa’ or village head, Ali Isah, has lived a better part of his life in leprosy clusters. On Saturday, he narrated to PREMIUM TIMES how he left his hometown, Amanawa, in Sokoto State, due to stigmatisation and neglect at a very young age.

“None of us are originally from this village. We left our families and hometowns to come live in this kind of place because of the stigma that comes with our condition,” Mr Isah, 57, said noting that he has not visited his hometown in more than 30 years.

All things good at the beginning

In sheer nostalgia, he recalled how the settlement was flagged off in pomp and pageantry in 2006 during the Olusegun Obasanjo administration with Nasir El-Rufai as the FCT minister.

“Before we came here, we used to stay in a small piece of land given to us at Area1 in Abuja by the chief of Garki. One day, Malam El-Rufai visited, he saw how well organised we are, so he went back and arranged with the federal government and this settlement was mapped and built for us,” the village head said with the help of an interpreter.

He said when they first moved, everything was going good. “We were getting weekly supply of food and medicine. Our children were attending the school in the settlement for free.”

Mr Isah said when they first moved, there were about 500 lepers and their families. He said each leper received N6,000 each from the government every month.

Just like many Nigerian initiatives which have been scuttled due to lack of sustenance, life started getting hard for Alheri settlers at the end of the Obasanjo administration. The succeeding governments did not sustain the initiative.

The hand water taps meant to serve the community stopped working for many years, leading to a lack of potable water, until some aid organisations constructed boreholes for the community.

The lepers and their families now have to fend for themselves. They were left at the mercy of foreign missions, NGOs and concerned individuals who from time to time visit and give them relief packages.

Things got worse with the COVID-19 pandemic.

“When COVID-19 came, there was lockdown so no longer get food items from those visiting us. we cannot even go out to fend for ourselves or get our drugs. It was a difficult situation”, Mr Isah said.

He said there were no drugs left in the shelves in their clinic. The village head said when the lockdown was lifted, they made several attempts to get the attention of the government but the situation has remained the same.

“We have been neglected for long”.

Leprosy in Nigeria

Leprosy is one of the major neglected tropical diseases.

The disease reached near elimination back in the year 2000 when the World Health Organisation’s target of less than 1 case per 10,000 people was achieved worldwide after years of global effort. The health agency then delisted leprosy as a public health threat.

Nigeria, which established a National Tuberculosis and Leprosy Control Programme back in 1989 to actively identify cases of leprosy, was among countries that achieved WHO’s benchmark at the time.

But since then, there has been a gradual resurgence of the disease and it is increasingly becoming a public health concern mostly because it has been almost forgotten.

According to WHO, more than 200,000 people were infected with the disease globally in 2016 alone.

According to the Nigeria Centre for Disease Control, over 3,500 people get infected with the disease every year in Nigeria and about 25 per cent of them go on to develop physical disabilities.

Also known as Hansen’s disease, leprosy is caused by a bacterium that spreads through the body slowly. Infection occurs by breathing in droplets in the air and usually involves long-term contact with someone who has the disease.

Left untreated, leprosy can cause irreversible damage to hands, feet, and eyes, potentially leading to paralysis, blindness, and amputations.

Due to stigma and the belief that leprosy is caused by a curse, patients are often ostracized from their communities leading to them finding themselves in clusters such as Alheri.

Neglected and forgotten

A combination of antibiotics used in an approach known as multidrug therapy, or MDT, has made this ancient disease curable.

The treatment is usually free at government hospitals and clinics in leprosy communities, such as the one in Alheri community and drugs are meant not to be sold.

These drugs have increasingly become scarce at the clinic in Alheri since the Obasanjo regime.

With COVID-19 disrupting several top health priorities and targets such as HIV, malaria and cancer, it was no surprise when Mr Isah said they stopped getting routine relief and drug supplies since the pandemic began.

Without drugs and proper treatment, the lives of infected persons that have already developed disabilities are increasingly at risk.

“When your fingers and toenails are getting deformed and you don’t have money and drugs to treat ulcers, you may die through infections from other disease”, Sanusi Dangote, a community member, said.

Ulcer is a common feature in leprosy patients. The trophic or chronic plantar ulcer of leprosy is one of the principal causes of disability and deformity.

The Alheri clinic was closed Saturday afternoon when PREMIUM TIMES visited. Community members said there were no drugs on the shelves.

The village head said they resorted to begging to be able to get drugs and food supply from the main Kwali town.

Intervention

Alheri residents hued in relief on Saturday when the Christoffel-Blindenmission (CBM), arrived the community.

CBM is an international Christian development organisation, committed to improving the quality of life of persons with disabilities in the poorest communities of the world.

It has been a while since the community received relief packages from such an organisation, the village head said.

Emeka Duru, the CBM programme officer, said they came to the community to mark the Neglected Tropical Diseases (NTD) day by sharing food items and Personal Protective equipment (PPE) for protection against COVID-19 to the people.

“Today is NTD day. Diseases such as leprosy and elephantiasis are seldom neglected in the sense that there are no big funders and government commitment to eliminate them. This is we are focused in these areas”, he said.

The official said CBM launched the Nigeria Inclusive WASH and COVID-19 project to help mitigate the suffering of communities of Persons With Disabilities (PWDs) such as Alheri.

“We are here to raise awareness about unhygienic practices that can cause these diseases and to share palliatives and PPEs to the community,” he said.

Mr Duru said what made matters worse for Alheri residents is the consistent lack of sustainability of initiatives by the government.

“A regime will come in and start a programme but their successors will come and abandon such programmes because they want to initiate their own programmes. This is not good because when this happens, those already benefitting from the programme will suffer.

“We want the world to know there is a settlement like this that has been forgotten. They need help from not just the government but NGOs and concerned individuals.”

World Leprosy Day

World Leprosy Day is celebrated on the last Sunday of January every year with the aim of raising more awareness about a disease that many people believe is extinct. It is not only the disease that is overlooked, but also those affected by it such as the Alheri community.

The theme of the 2021 campaign is “Beat Leprosy, End Stigma and Advocate for Mental Well-Being”.

After Nigeria met the WHO benchmark in 2000, efforts against leprosy faltered and investment diminished heavily as the disease stood no chance against the likes of HIV/AIDs, tuberculosis, and malaria which has remained top priorities.

The number of new cases of Leprosy were 210, 671 globally as at 2017, with Nigeria accounting for 2,447 new cases.

There is no available data showing the total number of people currently living with the disease in Nigeria but what is clear is that leprosy is still being transmitted, and due to its nature, the disease could lead to disabilities before diagnosis is confirmed.