How Nigeria’s neglect of leprosy stalls effort to eradicate disease

With over 2,000 cases reported annually, Ripples Nigeria’s KELECHUKWU IRUOMA visited the Leprosy Centres in Okija and Oji River to find out how the country was managing the disease. His findings show that Nigeria still has a lot to do in order to eradicate the menace.

Forty-two years ago, Gregory Okwuosa was fishing in the Ulasi river at Okija in Anambra State of southeast Nigeria when a sharp tool pierced the sole of his left foot. The foot developed sores and lesions. The following day while also going to fish, he stepped on a porcupine whose coats of sharp spines stabbed the same foot, exacerbating the injury.

He started treatment and thought it was a minor injury that would easily heal. Months passed, the sore and lesions did not heal, rather they continued to expand. Soon, the leg pain was accompanied by a serious fever, numbness, and body pain. He visited traditional medicine practitioners, but nothing changed until he was then advised to visit the Okija Leprosy Centre.

“It was here I was diagnosed with leprosy and the doctors treated my wound and cured me of the disease,” he said.

Unfortunately, the disease deformed Okwuosa’s left foot and 30 years later, he lost his sight. “I can’t see anymore and that is the only problem affecting me now,” the 62-year-old said bitterly as he removed the red face cap on his head, and placed it on a bench he was seated on.

Leprosy is a chronic infectious disease caused by Mycobacterium leprae that spreads through the part of the body mostly affecting the skin, the peripheral nerves, mucosal surfaces of the upper respiratory tract, and the eyes.

Though mentioned in the Bible and Quran, thousands of people still believe the disease is of the past while over 200,000 people are diagnosed with the disease every year globally.

A combination of antibiotics known as Multidrug therapy (MDT) has made the disease curable. A global health campaign meant that by the year 2000, the hope was that the World Health Organization’s target of less than one case per 10,000 people had been achieved worldwide.

To meet this target, Nigeria established the National Tuberculosis and Leprosy Control Programme (NTBLCP) in 1989, where it campaigned about the disease, identified cases, and administered MDT. Nigeria, however, met the WHO target in 2000. But 20 years later, there is a rise in leprosy in Nigeria.

The rise of leprosy in Nigeria

Thirty-six-year-old Margaret Njideka was selling at the popular Onitsha main market in Anambra State when she started to have constant stuffy nose, body ache, and weakness of the body. She took drugs, but the pains persisted. She then started to have sores and lesions all over her body.

“I have been trying other medicines not knowing what it was until someone told me to come to the Oji River Leprosy Center in Enugu State,” said Njideka, who is currently on treatment.

It took Njideka five years to discover it was leprosy she had. There are many Nigerians with leprosy without knowing. It is only when they start to develop symptoms they start to look for a solution.

In the last five years, there have been over 2000 cases reported annually in Nigeria with the recent figure being 2,494 recorded in 2019, according to data released by the Nigerian office of the German Leprosy and TB Relief Association.

“There is a risk of a resurgence,” said Dr. Sunday Udo, director of the Leprosy Mission Nigeria. “If nothing is done, leprosy could bounce back. Over the last 15 to 20 years, the number of new cases is not seeing any significant reduction. Nigeria is still among the highest-burden in the world and that is based on countries that report more than 1000 new cases every year,” he added.

He said the effort by the Nigerian government is not enough.

“The amount of energy being put into leprosy control has diminished,” he continued. The government is doing much more in other diseases such as malaria and HIV, but not leprosy. They have shifted away from leprosy.”

More children less than 15 years of age are now found with leprosy. This, according to Dr. Joseph Chukwu, the medical adviser of the German Leprosy and TB Relief Association, should worry the Nigerian government.

“This is unacceptable,” he lamented, saying there are still leprosy patients in various communities that are yet to be detected.

46-year-old Nkechi Ossai who was admitted into the Oji Leprosy Center in 1988 for leprosy and has remained in the facility admitted that government has shifted its focus and has failed in the quest to eradicate leprosy in Nigeria.

“When I came here at 14 over 30 years ago, the treatment was very good and serious. They treated us well because the medical doctors treating us were foreigners. We were being treated for free and they gave us complete treatment.”

“The government is not looking after us”

Leprosy patients in Okija leprosy and Oji River leprosy centers are not happy the government is not doing enough to help them. When they were diagnosed with the disease, some of them lost their means of livelihood as they relocated permanently to the centers for treatment.

They claim the government only provides MDT, ignoring other drugs they require to treat other complications caused by the disease.

“The government is not looking after us,” said Chidozie Malunze, a 45-year-old leprosy patient who has been at the Oji leprosy center since 2007.

“I treat myself. I have not finished my treatment because I still have a wound on my leg. I only hear with my ears that the treatment being provided by the government is completely free but since I came here in 2007, I have been buying drugs for my treatment with my own money,” he said angrily.

Malunze, who has three children, lost everything he had since he was diagnosed with the disease. He skips treatment due to the lack of money to buy drugs needed to treat the wound in his left foot.

“We look after ourselves,” he said bitterly as he looked at his deformed foot. The government is not doing as it says. If the government can help us to provide all drugs for our treatment, it will help us. They are not looking after us at all. I am suffering here,” he complained.

Celina Ozor from Ihialla has been at the Okija center for over 40 years. She was formally at the Oji River Leprosy Center before she moved to Okija, where she continued treatment as it was closer to her hometown in Ihiala.

She has been cured of the disease but she is yet to leave the center because of the eye problem she developed and the pains she feels on her knee joints.

According to her, “The problem we are having here is that there are no government representatives that come here to look after us. Hunger is killing us.”

The only drug that is being administered for free is what Njideka said comes from Germany. “Apart from that, every other medicine I use, I buy with my own money. I take drugs for eyes, pains and to reduce the rashes I have. So, it is very difficult. It is family and friends that are supporting me.”

The dilapidated state of leprosy centers in Nigeria

The Oji River Leprosy Center, which has been in existence for over 50 years is now in dilapidating condition as the center lacks maintenance. When Ripples Nigeria visited the center, some of the rooms lacked beds.

“Our building isn’t good again and we do not have good beds and blankets,” said Ossai. “We do not use the bathroom and toilet anymore. Some of us bath outside. It is the churches that are helping us to maintain the center. We are all Nigerians. The government should remember us. We are not animals. Let them come to our aid at the Oji River Leprosy Center.”

At the Okija Leprosy Center, the building is now dilapidated, some of the walls in the rooms, and doors are completely off. They also do not have power supply as they live in darkness. Water is another challenge. The only time they have access to water is during the rainy season.

“Armed robbers used to attack us here,” added Okwuosa. “The government needs to fence our center and put a gate for us. It was the beating by the armed robbers that exacerbated my eyes problem, leading to the loss of my sight.”

They got tired of waiting for the government to provide security for them in a government facility, so they decided to hire a security operative to protect them from armed robbers and thugs.

“We pay him N15,000 monthly and with the assistance of the people and church groups, we pay him. Since he came, we have not experienced armed robbery. But we want the government to provide security for us.

At the Oji leprosy center, there is a laboratory building meant for medical tests and examinations of leprosy patients, the lab has been abandoned and it is now covered by weeds and locked up. It has not been in use for years.

Efforts to speak to the National Tuberculosis & Leprosy Control Programme on this issue was futile.

Living during the COVID-19 pandemic

In February, Nigeria recorded its first COVID-19 case, and then in March, the federal government announced the lockdown, grounding economic activities in most parts of the country. Living during the period, according to the patients, was difficult as markets were closed and no businesses were going on. Individuals who normally brought food items for them could not do so during the lockdown.

“Since the COVID-19 started, it has been hard. We do not have food anymore to eat and the Church groups that bring food for us we didn’t see again due to the coronavirus pandemic,” said Okwuosa.

Njideka said the pandemic has made things difficult in all areas, especially in terms of food and drugs. “Now the drugs are very expensive in the market,” she said bitterly as she scratches her body.

The pandemic also affected the process of finding new cases of leprosy as people who have developed leprosy symptoms are scared of going to the hospital due to COVID-19 and stigmatization fear.

Stigmatization lives on

Stigmatization has continued to be a challenge in the fight against leprosy. Patients still frown at the way they are rejected and discriminated against in the society. There is a lack of advocacy against the stigmatization of people living with leprosy.

“Everything is all about understanding,” Njideka said. “I thought it was hereditary. It was later I knew someone could develop it. There are many discriminations. I will go to the market to buy something, somebody will just shift from me and that kills my spirit.”

The word leper continues to be used by people referring to leprosy patients. Dr. Udo said to end stigma and discrimination, the word must stop being used.

“Stigmatization is the last frontier in the fight against leprosy,” Udo added. “Even if we treat everybody, people will still be afraid to go close to them. It is the historical antecedents. Many things are not true about leprosy. Stigma is a complex and complicated phenomenon that we have to take seriously.”

On how to combat stigma, he said people will have to be educated about it. What makes people scared of it is only when they see people with deformities. He said three approaches are being adopted to fight leprosy: one is to deal with the issue of transmission; to take care of the disabilities and the zero discrimination.

Malunze has the desire to start a business immediately he is declared leprosy free but he is scared that people will stigmatize him. “It is hard to sell anything or do business because leprosy has destroyed our skins. So it is hard to work.”

One factor Dr. Chukwu said is making it difficult to detect leprosy early is stigma. “Even if we go to the communities and send out information that if they see deformities, it could be leprosy and those concerned should come forward. But they refuse to come forward because they do not want to be identified as people who have leprosy. So the fear of discrimination is there.

“They continue to hide. It is when they begin to have deformities, they start to reach out, which may be already late.

“Any limbs or fingers that have been lost can no longer be recovered,” Chukwu said.

There is still work to do to engage communities and make sure all available media channels, including churches, are used to get leprosy patients out.

He explains that leprosy is not a disease that someone can easily get. “I can have leprosy infection and my immunity will be good to control it. About 95 percent of human beings, even if they get infectious, may not get the disease. That way you’re right to say it is not easy to get it.”

Way forward

The government needs to step up its control programme. Udo said the Leprosy Mission Nigeria in collaboration with two other organizations and the Nigerian government will launch a post-exposure prophylaxis programme this year that will be administered to individuals who are at risk of getting the disease.

“Those who have been detected, their contacts will be traced and given the medication so they do not get leprosy. We found out that the cases of leprosy are higher among contacts who get the disease,” he said.

Right now, Okwuosa still lives with his five children at the Okija Leprosy Center. He wants the government to show commitment in the fight against leprosy in Nigeria and provide rehabilitative packages for treated patients.

“I am begging the government to come to our aid,” he pleaded. “I learned carpentry and I want to be making cabinets for people but I do not have money to start. I need support.”

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This report was made possible by the Civic Hive Media Fellowship 2020 under the EU-funded Rule of Law and Anti Corruption (RoLAC) programme being implemented by the British Council and BudgIT.

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