Tedros Adhanom Ghebreyesus, Director-General of the World Health Organization, standing with Yohei Sasakawa, WHO Goodwill Ambassador for Leprosy Elimination, at the 75th World Health Assembly in Geneva, Switzerland in May 2022. Sasakawa was honored at the Global Health Leaders Awards.

By Joyce Chimbi
Nairobi, Jun 7 2022 (IPS)

When Yohei Sasakawa visited a remote village in Cameroon, he found 23 people living there.

Of the 23, three were affected by leprosy and were shunned by their families. Even in such a small community, people experience stigma and discrimination because of leprosy.

Yet this is not a unique story, says Sasakawa, the WHO Goodwill Ambassador for Leprosy Elimination. This is the story of persons affected by leprosy, where there are more than 100 laws globally that discriminate based on the disease.

In his journey to at least 122 countries, he found that the story of persons affected by leprosy is characterized by stigma, discrimination, and ostracization.

Against this backdrop, Sasakawa had a message of hope and encouragement during the sixth ‘Don’t Forget Leprosy’ campaign webinar series titled, Elimination of Leprosy: Initiatives in the Americas and Africa.

Yohei Sasakawa, WHO Goodwill Ambassador for Leprosy Elimination during one of his many visits to communities where people affected by leprosy live. Credit: Joyce Chimbi

He said that eliminating leprosy was “in its last mile. A sustained push is much needed in spite of and because of ongoing challenges including COVID-19 pandemic as well as the myths and misconceptions around leprosy”.

“India has the highest number of leprosy cases, but they have also targeted to eliminate leprosy by 2030. This is an ambitious goal. I am encouraged by ongoing efforts, commitment, and passion to eliminate leprosy.”

With the universality of leprosy’s challenges in mind, under the Sasakawa Leprosy Initiative, the WHO Goodwill Ambassador, the Nippon Foundation, and Sasakawa Health Foundation work in a coordinated approach to achieve a leprosy free world.

Dr Carissa Etienne, Director, Pan American Health Organization, regional office for the Americas of WHO, stressed the need to sustain the fight to achieve zero leprosy cases by 2030. She called for a doubling of efforts. The Global Leprosy Strategy 2021 to 2030 is both a health and economic strategy because it aims at promoting Sustainable Development Goals (SDGs).

The webinar provided a platform for health officials, NGOs, and representatives of organizations of persons affected by leprosy. Participants heard how countries in the Americas and Africa are stepping up prevention initiatives in keeping with WHO guidelines to accelerate the annual decline in new leprosy cases.

Experts stressed that innovative approaches are much needed to sustain leprosy case detection, contact tracing, and treatment, especially against the backdrop of COVID-19, which continues to shift attention from the disease.

Speakers stressed that a WHO-recommended regimen of timely screening and treating eligible contacts with single-dose rifampicin was vital. When the single dose is given as post-exposure prophylaxis to contacts of newly diagnosed patients, it results in a 50 to 60 % reduction in the chances of developing leprosy over the next two years.

WHO recorded a total of 202,185 new leprosy cases globally in 2019. India, Indonesia, and Brazil register the highest number of new leprosy cases – more than 10,000 cases each.

Worldwide, 13 other countries reported 1,000 to 10,000 cases each. The Americas recorded 29,936 new cases, with Africa following closely with 20,205.

The webinar was held in line with the Global Leprosy Strategy for 2021-2030, on track with the new road map on neglected tropical diseases. New cases must reduce to about 63,000 globally.

Dr Carmelita Ribeiro Filha Coriolano from the Brazilian Ministry of Health spoke extensively about the spread of new cases in the Americas in 2020.

Coriolano provided a detailed sociodemographic profile of new leprosy disease cases and physical disability indicators picked up by the Department of Chronic Conditions and Sexually Transmitted Infections Health Surveillance Secretariat. She noted that Brazil recorded the highest new cases of leprosy in 2021.

In Africa, too, the cases remain a cause of concern.

“In 2015, leprosy was eliminated as a public health concern in Angola. But the disease is still very much a priority because the most recent data shows 797 new cases were detected,” says Dr Ernesto Afonso, National Leprosy Program Coordinator, Ministry of Health in Angola.

Dr Joseph Ngozi Chukwu, medical advisor, German Leprosy Relief Association in Nigeria, updated the epidemiological situation, leprosy case management, achievements, and lessons learned.

“Over 30,000 persons are estimated to be living with leprosy-related disabilities across Nigeria,” he said.

Lucrecia Vasquez Acevedo, President, Felehansen-National Federation of the Associations of the Persons Affected by Leprosy in Colombia, said the stigma continued.

“We cannot forget about leprosy because of the myths, misconceptions, and lies created around leprosy. It is important to teach other people the truth about leprosy. During the pandemic, we learned how to use technology to teach and overcome the challenges of access to information presented by the pandemic,” says Acevedo, suggesting that the same should apply to leprosy.

Professor Takahiro Nanri, Executive Director, Sasakawa Health Foundation, facilitated a question-and-answer session, providing an opportunity to respond to questions from the participants. During the session, issues of myths, misconceptions, and stigma arose as they remained an obstacle to eliminating leprosy.

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Participants from organisations focused on assisting Hansen’s disease-affected people from Asia, Latin America and Africa with World Health Organisation (WHO) Goodwill Ambassador for Leprosy Elimination, Yohei Sasakawa (centre pink shirt) pictured in 2019. Participants were attending the Global Forum of People’s Organisations on Hansen’s disease in Manila, Philippines, which was sponsored by the Sasakawa Health Foundation and The Nippon Foundation. Credit: Stella Paul/IPS

By Stella Paul
HYDERABAD, Jan 29 2021 (IPS)

Lilibeth Evarestus of Lagos, Nigeria doesn’t like the concept of handouts — she is against the idea of thinking of leprosy-affected people as weak.

Yet, for several months now, Evarastus – a human rights lawyer and founder of community welfare organisation, Purple Hope Foundation – has been spending a lot of time on the road, distributing food items and hygiene products among the leprosy-affected people in her community.

It’s because the COVID-19 pandemic has increased the challenges that the leprosy-affected community face: deep and widespread stigma, discrimination, misinformation, unfounded fear, besides living with the disease itself.

“If we want to really strengthen them and support them, we have to go to the people of the community where they are, instead of expecting them to come and get the help,” Evarastus tells IPS.

COVID 19 and leprosy-affected people

The economic, social, and health impacts of the COVID-19 pandemic, which has so far infected over a billion people and killed more than two million worldwide, have led to a significant increase in the need for humanitarian aid and social protection measures globally. According to experts, people affected by leprosy have been especially impacted by the worst consequences of the pandemic, largely because of pre-existing vulnerabilities and economic insecurities.

According to a report published by Global Partnership for Zero Leprosy (GPZL), 76 percent of leprosy-affected people in 26 countries have been adversely affected by the pandemic. These range from disruptions in their leprosy-elimination programmes to a loss of livelihood.

In Jharkhand, eastern India, the poorest leprosy-affected people, especially those living with disabilities, were forced to beg on the streets when India went into a nationwide lockdown to contain the spread of the coronavirus. This is according to Atma Swabhiman – a charity based in the city of Dhanbad, Jharkhand.

“Access of health services during COVID-19 period has become a challenge leading to further deterioration of health of people affected by leprosy specially elderly, with deformities and are on regular medication. Many are not being able to procure medicine in the absence of the money,” Shailendra Prasad, head of the charity, tells IPS.

The big gaps: drugs, medicare

On Jan. 27 and 28, members of leprosy-affected organisations from Asia, Africa and Latin America gathered online to share their experiences of dealing with COVID. It was organised by the Sasakawa Health Foundation of Japan, which has been working to support and strengthen leprosy-affected people’s organisations worldwide.

But in Brazil, where COVID-19 cases have surpassed 9 million and a new study by Sydney’s Lowy Institute ranked the South American nation with the worst response to the pandemic, leprosy-affected people are reporting a shortage of Multi-drug Therapy (MDT) supplies, which is crucial for the treatment of leprosy or Hansen’s Diseases. The reduced supply is due to the disruption in transportation and distribution caused by the pandemic and subsequent lockdown, said Faustino Pinto – a community leader from the Brazilian leprosy-affected people’s organisation, MORHAN.

However, according to the GPZL report, 13 other countries across the world have also experienced delays with in-country supply, distribution, and/or shortages. Some have also experienced challenges in accessing MDT because of travel restrictions and there is also a shortage of drugs for side-affects of the treatment.

Standing together

But the leprosy-affected community and their programme partners are also drawing strength from the fact that the community hasn’t seen a specific spike in the number of COVID-related deaths.

“We are fortunate that till today nobody has died in our community (in Bogra) from COVID-19,” Shahid Sharif, head of Bogra Federation, tells IPS. Sharif credits this to the federation’s early warning and awareness-generation activities. “As soon as we learnt of the pandemic, we started educating our community members about washing hands with precautions like washing with soap and wearing masks as soon as we heard of the pandemic. We also distributed soap and masks, besides dry rations like rice, dal etc,” Sharif says.

However, when it comes to social stigma, the community has remained as vulnerable as ever.

In Tanzania, where the president has ruled out purchasing any coronavirus vaccines, citizens have been rushing to buy health insurance to secure themselves against any possible health challenges. 

But people affected by leprosy cannot access this facility as health insurances are not sold to them, Fikira Ally, an activist from Tanzanian Leprosy Association, tells IPS.

“Those affected by leprosy have no access to this. This is important because it is a human right issue. Everyone would need this once in their lifetime and I request the authorities to look into this,” explains Ally.

Community leader Maya Ranavare is from Maharashtra – the worst COVID-affected state in India with nearly 2 million cases and over 150,000 deaths.  Ranavare tells IPS that people still continue to look at leprosy as more infectious and scarier than the coronavirus.

“The whole world has been in lockdown, flow of life has been disrupted but still most people follow the social distancing only because there is a government rule. But the same people maintain social distancing from a leprosy-affected person even when there is no scientific reason to do it,” Ranavare says.

Calls to end stigma and discrimination

Some, however, are optimistic of ending the social stigma if the community has better access to education, healthcare and economic sustainability. “We can change the minds of the entire community, but we need a sustained support, until we have become truly empowered,” says Ally.

Yohei Sasakawa, the World Health Organisation (WHO) Goodwill Ambassador for Leprosy and chair of the Sasakawa Health Foundation, has renewed his call for ending the stigma against leprosy-affected people.

“I believe we will achieve a world without leprosy one day. But along the way, we need to realise an inclusive society in which everyone has access to quality treatment and services, and a diagnosis of leprosy no longer comes with a possibility of devastating physical, social, economic or psychological consequences,” Sasakawa said in a pre-recorded speech to mark World Leprosy day on Sunday, Jan. 31.

Excerpt:

Her experience and the chance "to help strengthen Colombia, the world, and my family" through participating in the Global Forum of People's Organisations on Hansen's Disease, sponsored by the Nippon Foundation and the Sasakawa Health Foundation, was like "rising from the ashes" for Lucrecia Vazques from Felehansen Colombia. Vazques' family was hit hard by leprosy, with not only herself, but her son and one-month-old granddaughter being afflicted. Credit: Ben Kritz/IPS

By Ben Kritz
MANILA, Sep 10 2019 (IPS)

The Global Forum of People’s Organisations on Hansen’s Disease, which was attended by members of people’s organisations from 23 different countries, wrapped up in Manila, Philippines, today Sept. 10 after four days of discussion and deliberation.

The main outcome was a set of recommendations, which included participants stating that those affected by the disease should have more inclusive roles in the global campaign against leprosy.

Asked to share his impressions of the forum with his fellow participants, Joshua Oraga, who is a member of ALM Kenya, a local Hansen’s disease non-profit, told the audience, “We should all familiarise ourselves with the WHO [World Health Organisation] guidelines on strengthening the participation of persons affected by leprosy in leprosy services. That should be our creed, because if you look at that document, you will see that we are the only stakeholders who have an end-to-end role.”

He said that those affected by leprosy or Hansen’s disease had a role in overcoming stigma and discrimination.

“We have a role in the promotion of equity, social justice, and human rights, we have a role in addressing gender issues, we have a role in the dissemination of information, education, communication…. We have a role in advocacy, we have a role in counselling and psychological support, we have a role in training and capacity-building, we have a role in referral services, we have a role in resource mobilisation…. So, we are everywhere!”

Oraga’s enthusiastic impressions in a way defined the outcome of the forum organised by Japan’s Sasakawa Health Foundation (SHF) and The Nippon Foundation (TNF), which support elimination of the disease globally and provide information and awareness about the disease through their dedicated website titled Leprosy Today.

The recommendations will be presented on the first day of the International Leprosy Congress (ILC), which is also being held in Manila from Sept. 11 to 13. The recommendations addressed increasing awareness of Hansen’s Disease among the public and governments, calling for greater government support for people’s organisations’ advocacies, taking a larger role in helping to form anti-leprosy policy, and working to build sustainability and more effective networks among organisations spread around the world.

Participants at the Global Forum of People’s Organisations on Hansen’s disease from Asia, Africa and Latin America try to reach a consensus on issues related to leprosy-affected people. Credit: Stella Paul/IPS

A true people’s forum

To Dr. Takahiro Nanri, Executive Director of SHF, the real value of the recommendations lies not in their details, but in the manner in which they developed.

Nanri noted that the forum’s carefully-planned agenda was quickly thrown off-schedule by the spirited discussions among the participants. “The people really led the forum, and did the work they wanted to do, and I am very happy about that.”

“The recommendations were good ones, but what I think is really important is the process we saw,” he added.

Oraga was likewise pleased and motivated by his experience. Oraga, who had leprosy as a youth, said, “This is the first time I have had the opportunity to take part in a meeting at this level, so imagine my excitement and happiness to be able to come here.”

Oraga also expressed his gratitude for the work that Yohei Sasakawa, World Health Organization’s (WHO) Goodwill Ambassador for Leprosy Elimination and chairperson of TNF, has done over the last four decades. Sasakawa’s foundations have contributed over USD200 million in financial support for the WHO’s Global Leprosy programme. He also advocated for discrimination and stigmatisation against people affected by Hansen’s disease to be included in the United Nations human rights agenda. The resolution was passed in 2010.

“He has done so much for leprosy around the world, and personally I am grateful. Just think of it, because of Mr. Sasakawa, in three years, maybe leprosy will just be like any ordinary sickness,” Oraga said.

Lucrecia Vazques of Felehansen, Colombia also felt the forum was an extraordinary experience. “It’s been wonderful,” she told IPS through a Spanish translator. “It is like resuscitating after a hard moment.”

Vazques’s bubbly personality belies her own difficult experience with Hansen’s disease, which not only afflicted her, but her one-month-old granddaughter and her son, who was diagnosed first.

“It was hard,” Lucrecia said. “I had no knowledge whatsoever.We thought we would die.”

“But there was something to fight for, and to live for, and here I am. This forum means rising from the ashes. And if I had the choice, I would rise from the ashes again, and I would be right here, to help strengthen Colombia, and the world, and my family,” she said.

Looking ahead

But there is much work to still do.

“Because this was a people-led forum, it gives us direction. As you know, our resources are not limitless. We have an obligation, but it is of course better if we can maximise our efforts, and the recommendations help,” Nanri said.

Nanri reiterated the value of the “process” that he saw evolve during the forum, particularly in the context of the Joint Campaign on World Leprosy Day 2020, which will be observed on Jan. 26 next year.

“This was a step. You don’t go from the ground to the 10th floor in one jump. So now the first step has been taken. The next step is to get the groups around the world to do the activities at the same time,” which is the goal of the joint campaign. “When these recommendations are presented at the ILC, the next step can begin,” he said.

By Stella Paul
MANILA, Sep 10 2019 (IPS)

Octogenarian Yohei Sasakawa has travelled to more than 90 countries across the globe; from areas of conflict, to the jungles of Brazil, shaking hands, hugging and washing the feet of Hansen’s disease-affected people. His message is simple: Stop stigmatisation and eliminate the disease.

Sasakawa, who has spent more than 40 years working towards elimination of Hansen’s disease, is the World Health Organization’s (WHO) Goodwill Ambassador for Leprosy Elimination and chairperson of The Nippon Foundation (TNF). Since 1975, TNF and its sister organisation, the Sasakawa Health Foundation (SHF), have contributed over USD200 million in financial support for the WHO’s Global Leprosy programme. Both foundations support elimination of the disease globally and provide information and awareness about the disease through the Leprosy Today website.

Sasakawa told IPS in an exclusive interview that he does not believe in sitting in “air-conditioned rooms” looking at data and making decisions about the elimination of the disease. “That will not be helpful to people. You must go to the actual site. That is why I travel across the world — even if it’s scorching deserts or the jungles of Brazil or areas that are difficult to reach or even areas that are dangerous.”

Sasakawa, who says that discrimination and stigmatisation against people affected by Hansen’s disease was the original human rights violation, advocated for this to be included in the United Nations human rights agenda.

Yohei Sasakawa, the World Health Organization’s (WHO) Goodwill Ambassador for Leprosy Elimination and chairperson of The Nippon Foundation, has dedicated more than four decades towards eliminating Hansen’s disease and putting an end to the stigmatisation that people affected by the disease face globally. Courtesy: Sasakawa Health Foundation/The Nippon Foundation

In 2010, his efforts bore fruition when the United Nations General Assembly Resolution on elimination of discrimination against persons affected by leprosy and their family members and accompanying principle and guidelines was passed.

“If you look around us, there are multiple issues in front of us. When it comes to leprosy, people discriminating against people started in the age of the Old Testament. So it goes back a long time in our past history. So I think leprosy is the origin of human rights violation because of the fact that it started such a long time ago,” the recipient of the 2019 Order of the Rising Sun and 2018 Gandhi Peace Prize winner told IPS.

He said that 60 percent of the more than 210,000 new global leprosy cases for 2017 originated in India, adding that India’s Prime Minister Narendra Modi had made a strong commitment to make 2030 the year of zero leprosy in the country.

Sasakawa is currently in Manila, Philippines, to attend the TNF/SHF-sponsored Global Forum of People’s Organisations on Hansen’s Disease, which is being held Sept. 7 to 10. He will also deliver a keynote address at the 20th International Leprosy Congress (ILC), which takes place Sept. 11 to 13.

Through his work Sasakawa has met more than 150 national leaders, including presidents and prime ministers, sharing his message and gaining their support and commitment to eliminate leprosy.

However, he stressed, that his efforts alone would not eliminate the disease and called on the youth to “take action in their own countries” and encouraged them to begin discussions for solutions on social media platforms.

“I would definitely ask young people to join me on this journey.”

Excerpt:

Participants at the first Global Forum of People’s Organisations on Hansen’s Disease which began on Sept. 7 in Manila, Philippines, play a game to build better connectivity among themselves. Credit: Stella Paul/IPS

By Ben Kritz
MANILA, Sep 7 2019 (IPS)

Organisations of people affected by Hansen’s Disease or leprosy agree that a global network of volunteer groups is key to eradicating the disease, but concrete steps need to be taken to move the idea from an often-discussed concept to a reality.

“I don’t think anyone here is not convinced about the importance of a network,” Dr. Arturo Cunanan Medical Director of Culion Sanitarium and General Hospital told attendees following a workshop on volunteers and networking at the Global Forum of People’s Organisations on Hansen’s Disease in Manila on Sept. 7. “But we need to put our foot forward.”

Artur Custodio Moreira de Sousa, who heads Brazil’s Movement for Reintegration of People Affected by Hansen’s Disease (MORHAN), led the workshop and firmly agreed with Cunanan’s observation, but was more upbeat.

“This forum exists because the network already exists,” Sousa said, speaking through an interpreter. “The idea exists, the network is created, the work needs to continue to solidify and formalise it.”

Sousa conducted the workshop at the forum organised by Japan’s Sasakawa Health Foundation (SHF) and The Nippon Foundation to share some of MORHAN’s success in organising volunteers and networks in Brazil, encouraging the participating groups from Asia, Africa, and South America to consider ways in which they could contribute to an effective global network.

Participants at the first Global Forum of People’s Organizations on Hansen’s Disease which began on Sept. 7 in Manila, Philippines, play a game to build better connectivity among themselves. Credit: Stella Paul/IPS

Making the most of volunteers

As Sousa described it, the development of a network is in a sense development of a volunteer organisation writ large. MORHAN, which was formed after the fall of Brazil’s dictatorship in 1981, is itself a network of local volunteer groups. Keeping these human resources organised and making the best use of individual talents and intentions is a significant focus area for MORHAN.

“Attracting the people (volunteers) is easy,” Sousa told the forum attendees. “Maintaining the people is very difficult.” Where MORHAN has been successful in this is by encouraging its volunteers to decide how they can contribute. “The people must be free to create,” Sousa said.

Morhan community outreach volunteer Glaucia Maricato, who was doing double duty at the forum as an English interpreter for her Portuguese-speaking colleagues, is a good example of how MORHAN uses volunteers to the best advantage for the individual and the organisation.

Maricato, an anthropologist, explained that she first was introduced to MORHAN in 2010, after the group made an agreement with a group of geneticists to reunite children who had been separated from their families due to leprosy – with either the children or the parents isolated in a sanitarium. “The idea was to use DNA testing to prove who the children’s parents were,” Maricato explained. “I was interested in the project so I got in touch with MORHAN, and then started doing fieldwork,” as the project was related to Maricato’s doctoral studies.

To Maricato, the volunteer work has far more significance than simply applying a person’s skills to a task. “MORHAN was born with democracy in Brazil [in 1981],” Maricato said. “And that spirit really carries on its work, in the DNA testing project and overall. It’s the sense of building equality, removing barriers between people.”

From local organisation to network

Organising volunteers into effective networks can greatly facilitate management of organisations and the services they provide, the chairperson of the Philippines’ Coalition of Leprosy Advocates of the Philippines (CLAP) Francisco Onde agreed.

“Our country is an archipelago, so traveling from one place to another to deal with situations is sometimes difficult,” Onde told the forum participants.

“For example, we had an issue between one of our groups and the administration of the Tala Sanitarium [located north of Manila], but we’re located in Cebu [in the central Philippines]. But through our network and our Luzon coordinator, we were able to get an attorney to assist our colleagues to resolve the problem.”

Scaling up that sort of effective communication and action to a global level is the aspiration of the people’s organisations gathered at the forum, with representatives from the various groups urging their colleagues to join the effort by applying the tools to organising volunteers discussed in the workshop. Kofi Nyarko, president of International Association for Integration, Dignity, and Economic Advancement (IDEA) Ghana stressed that the key to effective action was for people’s organisations “to first help themselves.”

“If we do this, we can do something for the public as much as the public can do something for us,” Nyarko said. “Inclusiveness is very important.”

Evidently encouraged by Cunanan’s call to not let the idea of a global network “be a talking network just within this four-cornered room,” representatives of the people’s organisations in attendance held an impromptu meeting led by Sousa and Cunanan following the workshop that ended the forum’s first day to discuss formalising efforts to create the global network, the initial details of which Cunanan told attendees he hoped would be available for presentation “at the next meeting”.

•  Sasakawa Health Foundation (SHF) and The Nippon Foundation support elimination of the disease globally and provide information and awareness about the disease through the Leprosy Today website.

At the first Global Forum of People’s Organizations on Hansen’s Disease, which begun on Sept. 7 in Manila, Philippines, participants present their ideas on entrepreneurship models to attain sustainability. Credit: Stella Paul/IPS

By Stella Paul
MANILA, Sep 7 2019 (IPS)

Being part of a platform where leprosy-affected people from all over the world can freely interact, exchange and share opinions, ideas, experiences and strategies was always something Tasfaye Tadesse dreamt of.

So this week, Tadesse packed his bags and travelled for 36 hours from his home in Addis Ababa, Ethiopia to reach the Philippine capital of Manila.

The journey was worth it.

Tadasse, the managing director of Ethiopian National Association of Persons Affected by Leprosy, arrived to attend the first-ever global forum for people with Hansen’s disease, commonly known as leprosy. There he found an increasing family.

Participants from 23 countries across Africa, Asia, Latin America and the Caribbean are meeting from Sept. 7 to 10 at the Global Forum of People’s Organizations on Hansen’s Disease.

Organised by The Nippon Foundation (TNF) and Sasakawa Health Foundation (SHF), the forum aims to allow participants to share their common challenges, including a lack of organizational sustainability and capacity to enable them to achieve their long-term goals.

Today, Sept. 7, at the first day of the 4-day forum, Tadesse shared some of the activities and developments that had taken place recently in Africa, including providing feedback on a a regional meeting of all people living with leprosy in East and West Africa.

Held in February, the meeting was the first time that leprosy-affected people from across the continent came together as one community with a common goal of dealing with the challenges they face.

“We only knew about each other until then, but never spoke directly. The assembly brought us together and helped us have a conversation. We came up with a number of ideas and recommendations,” Tadesse told IPS.

One of the recommendations was to not use the word leprosy as it still evokes negative reaction.

“People start to judge the moment they hear the word leprosy, without even caring to find out if the person is cured or almost cured. So, this is clear stigmatisation and its very common everywhere,” he said.

Other recommendations included the African regional assembly deciding to form a social media group for smooth and regular communication among the areas impacted by Hansen’s disease across Africa.

“I didn’t know how to use what’s app before. So after I joined, I felt a sense of accomplishment,” he said. The group first included only the five countries that participated in the African regional assembly: Morocco, Ethiopia, Nigeria, Tanzania and Ghana.

Since February, people from organisations in other countries such as Kenya, Mozambique and South Africa have joined. With the network expanding, Tadesse says it is becoming truly pan Africa.

Lilibeth Nwakaego is a Lagos-based lawyer who has been instrumental in creating and growing the What’s app group across Africa.

“Information is power. So, sharing information is not just about good communication, but also about empowerment of [leprosy-affected] people,” said Nwakaego.

“We now have eight African countries in our What’s app network and I am going to make everyone an admin, so that they can all keep adding new members in their respective countries. We need to take information and ideas out of papers and meeting rooms to the people who need that and this is our way to do so,” Nwakaego told IPS.

The forum participants also learnt of recommendations from Asia and Latin America, regions which had also organised similar assemblies earlier this year. Speaking of the event held in Manila in March, Frank Onde, chairperson of Coalition of Leprosy Advocates of the Philippines (CLAP), recalled how the assembly had highlighted the connection between climate change and leprosy.

“Our participants from Kiribati are suffering more because of climate change. There are now more flooding which is adding to the challenges. During flooding, one must evacuate to higher ground but people who have advanced stage of leprosy cannot do this and so they are suffering. It was the first time that we came to hear about such an issue,” Onde said at the forum.

Foustino Pinto, the national coordinator for the Movement for Reintegration of People Affected by Hansen’s Disease (MORHAN) – an organisation of leprosy affected people in Brazil, shared the highlights from the Latin American regional assembly that took place this April.

One of the biggest outcomes of the assembly was a demand to adopt a higher level of respect and make leprosy affected people central to any policy decision.

“Right now, what we see is that our voices are casually heard and our opinions and ideas are not really listened to. There is a lack of seriousness. Take the term leprosy, for example. Who is deciding how this disease should be mentioned? Not the people living with it! So, we feel that there is a lot of room for improvement here. For us, the most important issues are dignity, equality and respect for the human rights of leprosy-affected people,” Pinto told IPS. 

Earlier while delivering the key-note address, Dr. Maria Francia Laxamana, the assistant secretary in the Philippines Ministry of Health, said that there was a need to make policies that would truly help leprosy-affected people empower themselves. In the Philippines, the government was considering providing subsidies to all leprosy-affected people. Such a policy would help the leprosy-affected people live a better life as their current economic condition was a big concern.

Takahiro Nanri, executive director of SHF, called out for the free flow of ideas and experience sharing among the participants. This would help lead the future course of action to eliminate leprosy, he said.

The participants will also attend the International Leprosy Congress scheduled to take place in Manila Sept. 11 to 13.

•  Sasakawa Health Foundation (SHF) and The Nippon Foundation support elimination of the disease globally and provide information and awareness about the disease through the Leprosy Today website.

By Stella Paul
HYDERABAD, India, Sep 6 2019 (IPS)

Professor Takahiro Nanri is the executive director of the Sasakawa Health Foundation, co-organiser of the Global Forum of People’s Organisations on Hansen’s Disease, which will take place from Sept. 7 to 10 in the Philippines.

A 4-day event, the forum will be the first of its kind to bring together grassroot organisations that are of, by and for the people affected by leprosy across the world.

On the eve of the forum, IPS correspondent Stella Paul spoke with Nanri who shared in brief the rationale of the event and some of the expected outcomes.

The forum, he said, is entirely focused on bringing together all the leprosy-affected people’s organisations on one platform and give them an opportunity to share their experiences, especially the positive ones, so that they can inspire others to follow and start new collaborations.

Yohei Sasakawa

By Mario Osava
BRASILIA, Jul 16 2019 (IPS)

At the age of 80, Yohei Sasakawa continues to travel around the world to promote solutions for some of the challenges facing humanity, such as Hansen’s Disease or leprosy, wars and disabilities, factors of stigma and exclusion.

Engaging in dialogue with world leaders and with those affected by Hansen’s Disease, who are generally poor, is his way of mobilising local efforts, with the financial and technical support offered by the 23 organisations that network with the Nippon Foundation, whose board of directors has been chaired by Sasakawa since 2005, after his 17 years as executive president.

Social innovation is the declared mission of the Foundation, created in 1962 as a private, not-for-profit entity based in Tokyo.

Since 2001, Sasakawa has been a World Health Organisation (WHO) goodwill ambassador for leprosy elimination.

Since 2013, he has also served as the Japanese government’s special envoy for National Reconciliation in Myanmar (Burma), reflecting the diversity of his activism, which ranges from protecting the oceans to assisting the disabled and vulnerable children.

For more than 40 years, he has devoted much of his work to combating Hansen’s Disease and its associated ills, such as prejudice, stigma and discrimination, which persist despite the fact that this infectious disease is known to be completely curable and stops spreading once treatment begins.

As part of his work against leprosy, Sasakawa was in Brazil Jul. 1-11, where he met with political and health authorities in the northern states of Pará and Maranhão, two of the states with the highest incidence of leprosy, a medical term banned in the country and replaced by Hanseniasis.

Later, in Brasilia, Sasakawa met with President Jair Bolsonaro and his health and human rights ministers. They agreed to hold a national meeting in 2020 on Hansen’s Disease in Brazil, the country with the second highest number of new cases in the world, with 26,875 in 2017, second only to India with 126,164 cases, according to WHO data.

Sasakawa is particularly concerned about the problems of discrimination and inequality, and not just the disease, he says in this interview with IPS.

Faustino Pinto, national coordinator of the Movement for the Reintegration of People Affected by Hanseniasis (Morhan)

By Mario Osava
BRASILIA, Jul 15 2019 (IPS)

On Jun. 27, Faustino Pinto was in Geneva, Switzerland, where he spoke to people at the United Nations about the fight against Hansen’s Disease and the stigma surrounding it, at a meeting during the 41st session of the Human Rights Council.

Eleven days later, in Brasilia, he discussed the question with President Jair Bolsonaro, when he took part in a meeting along with Yohei Sasakawa, president of the Nippon Foundation and World Health Organisation goodwill ambassador for leprosy elimination, who visited Brazil Jul. 1-10.

Pinto was able to present his views, as national coordinator of the Movement for the Reintegration of People Affected by Hanseniasis (Morhan), in all the meetings Sasakawa held with ministers, legislators and health and human rights officials in the Brazilian capital.

The aim was to intensify action at a national level to eliminate the infectious disease as well as the discrimination suffered by current and former patients.

Abolishing the term leprosy to refer to the disease caused by the Mycobacterium leprae bacillus is a central focus of Pinto, who sees it as necessary given the burden of prejudice that the word has accumulated over centuries, which is even reflected in sections of the Bible.

Another great difficulty, he said, is the lack of knowledge about the disease among the public, which hinders early detection, needed to prevent permanent damage in patients, such as damage to the peripheral nervous system that can even cause disabilities.

Pinto felt the first symptoms of the disease at the age of nine and suffered for another nine years until he was diagnosed with Hanseniasis. Because of the delay, the five years of treatment he later received could not prevent some permanent damage, especially noticeable in his hands, which are partially paralysed.

He emphasises the need for early diagnosis in order to achieve a true cure for patients and ultimately eliminate the disease. At the age of 48 he became an activist who is known even at an international level, as he combats Hansen’s Disease which mainly affects the poor.

In Brazil there are almost 30,000 new cases per year, a figure surpassed only by India.

Yohei Sasakawa (C), president of the Nippon Foundation and World Health Organisation Goodwill Ambassador for Leprosy Elimination, shakes the hand of Sebastião Miranda Filho, the mayor of Marabá in northern Brazil, where the foundation finances a project to distribute food to poor families affected by the disease, to encourage them to complete treatment. Credit: Artur Custodio/IPS

By Mario Osava
BRASILIA, Jul 8 2019 (IPS)

When cases of Hansen’s disease, better known as leprosy, increase in Brazil, it is not due to a lack of medical assistance but to the growing efficacy of the health system in detecting infections, contrary to the situation in other countries.

This unique aspect of the disease was highlighted during a Jul. 2-7 visit by Nippon Foundation President Yohei Sasakawa to the northern Brazilian states of Pará and Maranhão, to learn about and reinforce efforts to reduce the incidence of the disease.

Sasakawa continued his tour of this Latin American country on Monday Jul. 8 in Brasilia, where he will meet with President Jair Bolsonaro and other authorities from the executive, legislative and judicial branches, before returning to Japan on Wednesday Jul. 10.

The Nippon Foundation funds several projects in Brazil, one of which facilitates telephone and Internet communications, to expand and improve information about this chronic disease and combat the prejudice, stigma and discrimination surrounding it.

Early detection is one of the recommendations stressed in Sasakawa’s meetings with authorities in the Amazon jungle state of Pará, according to Claudio Salgado, a professor at the Federal University of Pará who is president of the Brazilian Hansenology Society.

“Hanseniasis (as the disease is called in Brazil) doesn’t manifest itself in acute outbreaks of fever, chills and confusion, like malaria,” he told IPS from Belem do Para.

Symptoms, such as numb spots on the skin, often take years to appear, when the effects are already irreversible, including loss of fingers and crippling or paralysis of the hands or entire limbs.

In addition, the cases are widely dispersed, making it even more difficult to identify patients, even though there are means of early detection, such as the screening of household contacts of leprosy patients.

An estimated 95 percent of people have natural immunity to infection. Hansen’s disease is not as contagious as many people believe. It takes prolonged, close contact over many months with an untreated leprosy patient to catch the disease, and patients are no longer contagious after only a few days of antibiotic treatment.

For all these reasons, it could be deceptive to set quantitative goals, such as the target adopted by the World Health Organisation (WHO) to “eliminate” leprosy by the year 2000, Salgado argued. “Elimination” is defined as a prevalence rate of less than one case per 10,000 persons a year.

The battle against Hansen’s disease gained a key ally in 1982, when multidrug therapy became available. More than 16 million people have been cured since then, according to WHO.

Brazil is the only country in the world that did not formally meet the goal. In 2017 there were 26,875 new cases in a population of 200 million, translating to 1.35 cases per 10,000 people, according to a WHO report.

But Salgado calls into question statistics that point to a sharp reduction in cases, which he said is epidemiologically impossible. He also throws doubt on the claim that Brazil accounts for 92 percent of all new cases in the Americas, as recognised by the Brazilian Health Ministry in its National Strategy to Combat Hanseniasis 2019-2022.

The governor of Maranhão, Flavio Dino, held a dinner for the delegation of the Nippon Foundation, which funds projects for those affected by Hansen’s disease in several cities in this state in Northeast Brazil. The visit and meetings with health officials bolstered new efforts to combat the disease and its consequences, such as disabilities, stigma and discrimination. Credit: Artur Custodio/IPS

He says this indicates that very different situations with respect to leprosy, between Brazil and its neighbours, in spite of similar economic, social and environmental conditions.

An apparent paradox: a country where diagnosis and treatment of Hansen’s disease is reduced would have favourable statistics, in contrast with the likely expansion of leprosy. In other words, fewer cases would be detected, even if the situation was actually getting worse.

In Maranhão, the second Brazilian state visited by Sasakawa, the rate is high: 4.4 new cases per 10,000 persons.

“We detect 3,125 cases per year on average,” reported Lea Terto, superintendent of Epidemiology and Disease Control at the local Health Ministry.

The fact that Maranhão is the state with the largest number of infected children and adolescents under 15 is a concern, because it indicates that they are living with untreated adults, he told IPS from the regional capital, São Luís.

Sasakawa was welcomed by health workers at the clinics, former leprosariums and cities he visited, who celebrated the benefits of projects funded by the Nippon Foundation.

Maranhão was the state that benefited the most from a project implemented since 2017, aimed at strengthening detection and treatment of Hansen’s disease in the 20 municipalities with the highest prevalence of the disease, Artur Custodio, national coordinator of the Movement for the Reintegration of Those Affected by Hanseniasis (Morhan), told IPS from São Luís.

The visit was “very positive” in terms of strengthening the disposition of those involved in the issue and bolstering the local government’s commitment to combatting the disease and the problems that hinder its prevention, Terto said.

She was impressed by Sasakawa’s statement that “people who are prejudiced are sicker” than patients with Hansen’s disease.

“Active search and exams of household contacts” are the priorities of her work, to “reduce prevalence in a concrete and responsible way,” which means a slow reduction of about two percent of new cases a year, said Terto, who has been a nurse for 37 years.

It is actually better if more cases appear than expected, she said, because it means that new untreated patients have been identified.

In addition to the difficulties of making leprosy visible, there are concerns about people quitting treatment, which can last from six months to more than a year depending on the severity of the case. In the most complex cases, a major effort is required to ensure that the patients stick with the treatment until the leprosy bacteria is eliminated.

To encourage patients to complete the multidrug therapy, the Foundation is funding the distribution of baskets of basic foodstuffs to affected families in Marabá, a city in the interior of the state of Pará, visited by Sasakawa on Jul. 3.

Better nutrition gives a boost to the treatment, which is effective if the infected person takes the antibiotics for the prescribed period of time.

Sasakawa began his tour in northern Brazil with a visit to the Marcello Candia Clinic, a dermatology reference unit in Marituba, a city of 108,000 inhabitants in Pará.

A former leprosarium marked the history of the city and of José Picanço, head of Morhan in Pará. He and his two siblings were separated from their parents, who had the disease and were isolated in the institution in 1972. Picanço and his siblings were also treated like “lepers”.

Children of people with leprosy were taken away from their parents and placed in orphanages. It is estimated that between 15,000 and 20,000 people in Brazil suffered – and still suffer – the social and psychological consequences of hanseniasis, because of the former law for the segregation of people with the disease.

Picanço’s parents, who lived until 2007, at least achieved the right to compensation for the violence perpetrated against them by the State. But their grown children continue to fight for this right as victims.

“There are states, such as Minas Gerais and Ceará, that are working towards recognition of this right, by government decree or bills making their way through parliament. But since the problem resulted from a national policy, it is up to the federal government to compensate us,” Picanço told IPS from Belem.

He said Sasakawa’s visit strengthened the struggles for early diagnosis of the disease, the rights of those affected and the need for greater coverage of hanseniasis in the media, which is currently limited to an annual campaign in January.

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