A young boy from the Philippines with leprosy. The chronic disease is curable, and if treated in time disabilities related to the disease can be averted. Courtesy: moyerphotos/CC By 2.0

By Elisio Muchanga
MAPUTO, Jul 30 2018 (IPS)

In the first six months of this year, the southern African nation of Mozambique has already registered 300 more cases of leprosy, some 951 cases, than it registered for the whole of 2017.

The country, which had previously eliminated the chronic disease in 2008, is receiving funding from the Nippon Foundation—a non-profit philanthropic organisation from Japan that is active in many countries across the globe in eliminating leprosy—to provide free multi-drug therapy (MDT) to leprosy sufferers. Leprosy is curable, and if treated early enough disabilities related to the disease can be averted. But treatment can take between six to 12 months.

The chair of the Nippon Foundation and the World Health Organisation (WHO) goodwill ambassador for leprosy elimination, Yohei Sasakawa, recently visited the country to assess Mozambique’s progress in identifying and treating leprosy.

He told IPS that the increased attention by health authorities on relatively new endemic diseases such as Malaria, HIV and Tuberculosis (TB) may have contributed to the increase of new leprosy cases in the world.  This is despite the fact that treatment for the disease remains free. The WHO has provided MDT for free since 1995 thanks to initial funding from the Nippon Foundation.

Sasakawa said that while the WHO has indicated that a prevalence rate of one leprosy case per 10,000 inhabitants indicates elimination of the disease, “this indicator is simply a milestone. Eradication has not yet been achieved, so we must continue to work towards eradication and elimination.”

Excerpts of the interview follow:

Inter Press Service (IPS): There has been a massive decline in the prevalence of leprosy following the global implementation of MDT in the 1980s by the WHO. However, there are still over 200,000 new leprosy cases recorded every year. And we have seen the emergence of multi-drug resistant leprosy in recent years. How has this affected the prevalence rate?

Yohei Sasakawa (YS): Both in the past and now, MDT is supplied by our foundation and distributed free of charge. Although the medication continues to be distributed free of charge, there are many patients with HIV, Malaria and TB, and these diseases get more attention from ministries of health than leprosy. This fact increases new cases of leprosy. There was a complication caused by multi-drug resistant leprosy, which also contributes to the increase in the number of patients, but it is a very small number, a much lower percentage.

IPS: How can Zero Leprosy be achieved?

YS: It starts from talking about the disease by using a social approach, because leprosy is a social problem. So the leaders of a country, teachers in schools etc, must work to spread the knowledge that leprosy is a curable disease. It is possible to cure with the correct treatment, which starts with the diagnosis of the skin. (Initial symptoms are patches of skin that are paler than normal.) If this message is spread exhaustively, for sure leprosy will be zeroed.

IPS: Do you find it difficult to reach the level of Zero Leprosy?

YS: Achieving Zero Leprosy is not such a difficult process. As I have said, we just need an exhaustive dissemination of the message that it is possible to treat the disease and that the medication is free at health centres. This is the only way that Zero Leprosy will be reached because this disease is not so difficult to diagnose, it is easy to identify.

IPS: Treatment of leprosy costs nothing. But we are seeing a shift towards complacency about the disease among government policy makers, and hence an increase in the prevalence of the disease in some areas. This is unfortunate. Why is this the case? And how do we address this?

YS: Leprosy is not a medical disease it is a social problem. This disease has no symptoms like pain, and this fact alone makes some people chose not to go to hospital when they come across spots on their skin etc. But with time, deformation takes place and then the person feels ashamed to go to hospital because of discrimination… For a long time, history has shown that people with leprosy were highly discriminated against.

And this discrimination still exists quite strongly amongst almost every population…I had the opportunity to see in Nampula (northern Mozambique) that those recovered from leprosy work as volunteers in the search for other people with leprosy in need of treatment. I think this is very good and would be even better if it were spread throughout the country.

The chairman of the Nippon Foundation and the World Health Organisation (WHO) goodwill ambassador for Leprosy Elimination, Yohei Sasakawa, recently visited the country to assess Mozambique’s progress in identifying and treating leprosy. Credit: Elisio Muchanga/IPS

IPS: What concrete actions is your foundation carrying out, especially in Africa, to eliminate leprosy.

YS: Over the last 40 years the foundation has been working to provide the necessary assistance to people with leprosy through the WHO, and we will continue providing this assistance.

In Africa, specifically in countries with cases of leprosy, I try to talk to the top leader, the president. I explain the situation to them in order for them to take action. I think in talking to presidents it makes it easier for a ministry of health to get a bigger budget and carry out its activities.

The number of people with leprosy is much lower than those with HIV, Malaria and TB. So it is very difficult for the government to allocate a larger amount to the ministry of health to tackle this disease, and this is not prioritised. So I go to these countries and ask the government to increase funding to the ministry of health to combat the disease.

IPS: Your foundation has given support to many countries towards eliminating leprosy. What is the feedback from these countries and what can be taken as model or case for success?

YS: The feedback is very positive. We are experiencing a significant reduction in cases of leprosy with countries declaring themselves free from leprosy, although there are new cases. India is a great example, the country has the greatest number of leprosy sufferers in the world—about 70 percent of the world’s cases of leprosy are in India—and the work that has been developed there is positive.

However, one concrete case of success was in Indonesia where I met a girl who developed the disease at 18 and was cut off from her family. I had the opportunity to have a meal with this girl, and that gesture demystified that leprosy was a cursed disease.

IPS: As part of efforts to sustain the quality of leprosy services and reduce the burden of leprosy in the world, the WHO has recognised the important contribution that people affected by leprosy can make. What have some of the contributions that you have seen that have positively affected leprosy services?

YS:  Well, India, you know that this country has a massive number of people with leprosy, and many of those who have been treated and recovered from leprosy have nothing to live on and end up begging on the streets.

I spoke to the Dalai Lama to see what we can do for these people. He wrote a book, sold it and donated the money from the sale of the book to our foundation. Later we created an association to support people affected by leprosy by giving them a small pension. We also provide microfinance and teach people how to make their own living.

We also offer university scholarships to the children of people who have recovered from leprosy, but this type of support, unfortunately, only happens in Ethiopia and India.

IPS: Why only in these countries?

YS: I don’t know. What a pity (it is limited). We also wanted to do the same in Indonesia. Now here in Mozambique, from what I understand, there is no a colony where only people with leprosy live. But if people get together and form an association, maybe we can offer support. I understand that those recovering from leprosy want to work but do not have the opportunity. We can help create this opportunity.

IPS: Your foundation managed to lobby the United Nations to pass a resolution for the “elimination of discrimination against persons affected by leprosy and their family.” How do you measure the result of this lobbying today with regards to the commitment and actions from member states?

YS: It is true that we have been able to mobilise countries and pass this resolution, but what happens is that this rule contains its principle and guideline but has no penalty. Some countries have included this rule in their policies but unfortunately there are only a few countries that have done that.

Recently, a leading rapporteur was elected by the Directorate of Human Rights (in the U.N. Human Rights Office of the High Commissioner), and will have to visit countries and see why they are not complying with the U.N. recommendation of 2010.

IPS: There still remains significant stigma attached to the disease. And the stigma placed upon people with leprosy has been considered one of the greatest social injustices. In some parts of Africa people with leprosy are still separated from society, when research and science proves there is no need to. How do we overcome this?

YS: In fact there is discrimination against leprosy sufferers and this is difficult to remove from people. Stigma and discrimination are ancient and deeply rooted. So it is not only with my efforts that we are going to end this stigma, we need to have the participation of all of us working together to change this situation.

Excerpt:

World Health Organization goodwill ambassador for Leprosy Elimination and chair of the Nippon Foundation, Yohei Sasakawa (left), holds the hand of a leprosy patient. Sasakawa visited Mozambique’s rural Namaita Centre to assess the progress of leprosy patients. The Nippon Foundation has been providing funds and medication in order to eliminate leprosy in Mozambique. Credit: Elísio Muchanga/IPS

By Elisio Muchanga
NAMPULA PROVINCE, Mozambique, Jul 28 2018 (IPS)

It takes Faurito António, 42, from Lalaua district, Nampula Province, two hours to reach his nearest health centre in order to receive the drugs necessary for his treatment of leprosy. António, whose foot has become affected by the muscle weakness that occurs when leprosy goes untreated, says this long walk while ill is the reason why many don’t continue treatment – which can take between six to 12 months.

“There are people who drop out of treatment for alleged fatigue from going long distances to gain access to a hospital,” he tells IPS of the rural distribution of Mozambique’s health centres.

In the deeply rural and poor northern province of Nampula, some six million people, according to the Mozambique ministry of health, are serviced by one health centre in each of the 23 districts.

The lack of development—many of the villages in the region do not have electricity or even paved roads—also often makes these centres difficult to access.

This southern African nation was in a 16-year civil war that ended in 1992 and ranks 181 out of 188 countries on the United Nations Development Programme’s Human Development Index, sharing its place with conflict-ridden South Sudan. World Bank data shows that more than half, 63 percent, live below the poverty line of USD1.90 a day.

A source in the health ministry says that on average, about 5,000 people are treated in Nampula’s health centers, leaving the remaining population without access.

Distances to Health Care Centres

Nampula Province was ranked in a study as one of the areas with the highest number of villages located 60 minutes away from a health centre. The province’s main 500-bed Nampula Central Hospital, in Nampula City, serves a population of approximately 8.5 million from the three provinces of Nampula, Cabo Delgado and Niassa.

This province has the most cases of leprosy in the country. In the first half of this year, the ministry of health registered a total of 553 cases, most of them from the districts of Lalaua, Meconta, Mogovolas and Nampula, in Nampula Province. This was followed by Zambezia and Cabo Delgado with 121 and 84 new cases respectively.

Leprosy is a chronic disease. Initial symptoms are patches of skin that are paler than normal, and this makes the disease difficult to diagnose. But if left untreated, the World Health Organization (WHO) says it “can cause progressive and permanent damage to the skin, nerves, limbs, and eyes.”

Last year, Mozambique’s national director of public health, Francisco Mbofana, raised concern that the disease was still going undiagnosed and untreated. Club Mozambique quoted him as saying that often patients appeared for the first time at health centres already suffering from second degree malformations “where mutilations of their fingers and toes are evident.”

The disease, which is transmitted via droplets, from the nose and mouth, during close and frequent contact with untreated cases, is curable with multidrug therapy (MDT), and early treatment averts most disabilities. The WHO has provided MDT for free since 1995 thanks to intial funding from the Nippon Foundation. The Nippon Foundation, a non-profit philanthropic organisation from Japan, is active in many countries across the globe in eliminating leprosy, including here in Mozambique.

The MDT treatment that António is on was donated by the Nippon Foundation and is available for free for all leprosy patients across the country.

António has been on the therapy for two weeks now, and says that he can report an improvement.

A community in Mozambique’s Nampula Province listen to a talk about identifying and treating leprosy. This province has the most cases of leprosy in the country. In the first half of this year, the ministry of health registered a total of 553 cases, most of them from the districts of Lalaua, Meconta, Mogovolas and Nampula, in Nampula Province.Credit: Elisio Muchanga/IPS

Promoting early identification of the disease through education

Unlike António, Ermelinda Muelete, 23, was fortunate enough to have been diagnosed early on when white patches appeared on her body. But Muelete, who had been on medication for the disease for some weeks, stopped the treatment because she felt that the patches on her skin were not going away quickly enough.

But she regrets the decision.

“I want to return to the treatment,” she tells IPS from the Namaita Centre, a small clinic in Mozambique’s district of Rapale, Nampula province. Muelete says that while members of the small rural community here have not rejected her outright, she felt that some of their attitudes and actions discriminated against her.

But this Thursday Jul. 26, as a small rally was held in the area to sensitise people about the disease, she felt more confident.

The WHO goodwill ambassador for Leprosy Elimination, Yohei Sasakawa, visited Namaita Centre to evaluate how funding from the Nippon Foundation, of which he is chair, has been able to assist treating Mozambicans with leprosy.

The foundation has been on the forefront of combatting the disease. In 2013, along with WHO, Nippon Foundation held a leprosy summit during which 17 countries that reported more than 1,000 new cases a year issued the Bangkok Declaration to reaffirm their commitment to achieve a leprosy-free world.

Here in Mozambique, the foundation has provided both funds and medication to the health ministry to implement post-elimination interventions at community level in the endemic districts of the central and northern parts of the country, especially for the active search for patients for early diagnosis and treatment. The Nippon Foundation initiative, which began last year, will continue until 2020.

According to Sasakawa, the process of diagnosis of this disease has been difficult, because the symptoms can take a significant time to present and they are not specifically painful. This long incubation period, on average five years, but in some cases up to 20 years according to WHO, means that people don’t always seek treatment immediately.

However, he challenged communities to be vigilant, and to try to identify if their relatives have any skin discoloration so that they can be referred to a hospital for screening and treatment.

“In fact, the appearance of white patches on the patient’s body is one of the main forms of suspicion that may lead to a specific diagnosis to determine the disease,” he says.

“Do not take long with symptoms of leprosy you have to see a doctor in the nearest health centre to get treatment, which is free.”

In addition to providing money and MDT, Nippon Foundation also support public awareness campaigns that sensitise local populations about leprosy, how to identify it and where to receive treatment.

In rural areas, poor understanding of the disease makes it difficult for people to identify it and obtain necessary treatment. Only nine percent of the country’s 28 million people have internet access, according to the World Bank data.

So the education rally made a difference to Muelete.

“Now I don’t feel rejected because of my situation. I feel strong to overcome discrimination and go ahead with the treatment,” she says.

The struggle to eliminate leprosy

Sasakawa says that Nippon Foundation has been struggling to eliminate the disease. There over 210,000 new leprosy cases registered globally in 2016, according to official WHO figures from 145 countries.

Mozambique had been declared free from leprosy in 2008. However, a few years later, it experienced an outbreak of the disease.

The country’s health minister Nazira Abdula, says that just in the first six months of this year, Mozambique registered about 951 new cases of leprosy, compared to 684 cases in 2017.

“The cases may increase, but mini-campaigns are foreseen in the provinces that register some cases of leprosy,” she says from her office in Maputo as she received the foundation delegation.

Manuel Dias, a community leader in Namaíta reiterated the request for support to combat leprosy.

“We ask Mr. Sasakawa to continue bringing the leprosy drug here in Namaíta, because there are many people suffering from this disease.”

Sasakawa reaffirmed his commitment to continue supporting communities with a view to eradicating the disease, particularly in rural areas.

• Additional reporting by Nalisha Adams in Johannesburg