SPECIAL REPORT: Leprosy patients, care givers tremble as key donor pulls out of Nigeria

THE LEPER’S TALE

Mustapha Abdullahi, a resident of Egabi in Kaduna State, has been battling leprosy for over eight years.

The 42-year-old, down with hives on his skin and severe deformity on both limbs, is a patient at the National Tuberculosis and Leprosy Centre (NTBLC), Saye, in Zaria, Kaduna State.

The centre is the major facility for the treatment of leprosy in Nigeria, a disease that still afflicts thousands across the country. In 2015 alone, 2,892 persons were diagnosed with the disease in the country, according to the non-profit, Netherlands Leprosy Relief (NLR).

“I first noticed a lump on my right foot toe in 2009 but I approached it with laxity. As the lump enlarged, I applied herbal supplements on it”, Mr. Abdullahi told PREMIUM TIMES during our reporter’s visit to the facility where he is receiving treatment.

He was able to manage the symptom with herbal medicine for a year; but when the disease progressed relentlessly, he abandoned his job as an Islamic teacher when he became an outcast in the community.

“I could not face the stigma and I lost everything – I lost my job and my wife and friends abandoned me. The only support I had was from my family who continued to take care of me.

“When I could no longer endure the plague of sores on my skin and without understanding the cause, I went to 44 Army Reference Hospital, Kaduna. After examining me, they gave me a drug which name I don’t even know.”

The drug did not work. The sores continued to spread across his body. It seemed the hospital had no idea what ails him.

“I was then referred to Jan Kwanu, now Bingham University Teaching Hospital, Jos,” Mr. Abdullahi said. “But my condition was beyond their competence to treat so I was given a quick referral to the Leprosy Centre, Saye, where I was diagnosed with leprosy.”

It was at the centre that the Islamic scholar finally found reprieve.

He told PREMIUM TIMES how the drugs the facility gave him for free contained the spread of blisters on his skin. But the delay in seeking help from the centre had allowed irredeemable damage to his nervous system and the thin tissue lining his nose.

Mr. Abdullahi is nevertheless grateful that his condition stabilised.

Mustapha Abdullahi

But his benefactor – the leprosy centre – is now faced with serious challenge of its own. The major source of its funding was severed when the Netherlands Leprosy Relief (NLR), the main donor for leprosy treatment in Nigeria, announced it was pulling out of the country.

NLR is a Dutch NGO, which does not receive any funds from the Dutch Government, but relies mainly on donations from Dutch individuals (and lately complemented by donor funds).

The organisation has operated in Nigeria since 1974 and has funded NTBLC since 1992.

WHY WE PULLED OUT

The Country Director of NLR, Lex Merlijn, told PREMIUM TIMES his organisation had to stop funding the centre after suffering severe loss of income.

Mr. Merlijn said NLR Nigeria spent ₦5billion on leprosy control activities in Nigeria.

“The amount spent so far has been dazzling because it comes from private donors in The Netherlands who want to do good for their fellow humans,” the official said.

“The income from Dutch individuals has gone down severely, that is why NLR has decided to continue only in five countries and cease operations in Nigeria and Vietnam.

“NLR Nigeria has encouraged the Nigerian government to take ownership of the leprosy programme by providing a so-called Innovation Fund for nine states in the North Central/North East.

“The state controlled programmes are encouraged to develop tailor-made pilot projects which address early case detection. This is a bottom-up approach in which the State TB (Tuberculosis) and Leprosy control programme has the initiative and develops her own strategy for early case detection,” Mr. Merlijn said.

CARE CHALLENGES

Though the facility in Zaria is government-owned, most of its equipment and other materials were donated by local and international partners and donors.

Figures from the budget office of the federation show that the federal government budgeted N454 million and N491 Million to the centre in 2015 and 2016 respectively. The proposed budget for 2017 is, however, N517 million.

Health Minister, Isaac Adewole at the treatment Centre, Yangoji Leprosy Community
[Photo: Kapital FM]

Officials at the centre said the funds earmarked for the centre each year are usually far short of what is required to run such facility. So the centre had always relied substantially on donations and grants to survive.

“The government only pays salaries and overhead allocation for day to day running of the centre,” an official said, asking not to be named because he had no permission to discuss the matter with journalists.

“The situation here is as bad as any other health care centre in the country. We have been surviving through international donors who provide the drugs, care giving material for patients, and even sponsor training programmes for staff and community health workers.

“The NGO (NLR) has been supporting in terms of capacity development, patient care, logistics (drugs, vehicles and computers) and provision of equipment and maintenance and also provides technical support to training activities.

“The government needs to get more involved in the care of its citizens. It is one thing to establish the centre, it is another to make sure that everything needed for the smooth running of the centre and patients’ treatment is available.

“It is as bad as having casual staff because of shortage of manpower. The government should employ more hands because the work load is too high. Capacity development of staff has been low and we have been excessively depending on international partners in sponsoring candidates for training.

“Now that they (the NLR) are pulling out, we don’t know what the situation will be.”

The NLR, in collaboration with the centre, has worked in nine states in the north-central and north-east geopolitical zones to train persons affected by leprosy.

Traditional healers and traditional birth attendants were also trained on how to detect leprosy and where to refer patients to.

Mr. Merlijn, the country director, said the training teams worked in “areas where leprosy is often detected, where children are diagnosed and persons already have visible deformities (grade 2 disabilities, G2D)”.

Abdullahi Dalhatu, a medical officer at the centre, said the organisation was now in a dilemma regarding how to find money for treatment of patients since the major funding partners had pulled out.

“People come here from all over, not just from the North,” Mr. Dalhatu said. “We have referrals from all over the country, they come from as far as Lagos, Benin among other places.

One of the patients at the Leprosy centre

“Treatment is meant to be free, the donor pays for the MDT (multi-drug therapy) drugs. It does not pay for other materials for treatment and drugs to treat complications such as ulcer and of ailment generated as a result of the disease. We have to get these material and needed drugs so we are not delayed in the treatment we want to give.”

He said with the cash crunch facing the facility, it had now resorted to asking “patients to collect funds from their relations and staff to contribute for their treatment, especially when in urgent cases.”

“Funding is the major issue facing the facility, the institution does not have money to take care of the cases diagnosed,” he said.

Clement Adesigbin, another medical doctor at the centre, said it had been difficult getting most of the patients to purchase drugs for their treatments because most of them are very poor.

“In fact, leprosy and poverty are conjoin twins; that is why some people call it the disease of the poor,” he said.

A PLEA FOR HELP

Officials and social workers at the leprosy centre are calling on the Nigerian government and members of the public to come to the aid of the patients.

Mr. Dalhatu said there was an urgent need for government, and philanthropists to assist in the treatment and re-integration of the patients back into the society.

“Most of the patients are poor and cannot fend for themselves,” he said. “Most don’t want to leave the centre because of the free care and treatment they receive. It is even worse when they are deformed, they get stigmatised by society that does not want anything to do with them.

“They often come back with cases of severe ulcers which most times require medical attention.”

Mr. Dalhatu urged the government to take ownership of treatment, training and re-integration of the patients into society.

“There should be a community-based care where they will be incorporated into the community. Philanthropists and well-meaning Nigerians, especially legislators from constituencies with high prevalence of leprosy, should make rehabilitation of the treated patients a priority in their constituency projects.

“The stigmatisation needs to be stopped. The government needs to create awareness on the disease and make people know that they can be accepted into society,” he said.

A matron at the centre, Hajara Liman, said stigmatisation remained a huge problem most patients face even after treatment.

“Most people don’t want to have anything to do with them believing they are not yet cured and might get infected if they have close contact with them,” Ms. Liman said.

“This has made most of them refuse leaving the centre after treatment, and some return after finding it hard outside because of discrimination and stigmatisation in spite of their skills. They always come back because they know they will always get acceptance and free food here.

“Though we encourage them to learn some survival skills like fish farming and poultry keeping here at the centre, they need financial and technical support to live within the community,” she said.

If these are done, Ms. Liman said, inmates like Mr. Abdullahi would be able to return to his old job as an Islamic teacher, and live freely in Egabi, where he grew and built a family.