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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Parents at Alheri leprosy colony outside Nigeria's Federal Capital Territory, Abuja have appealed for an end to discrimination, which they say impacts their children. Credit: Oluwatobi Enitan/IPS

By Oluwatobi Enitan
Abuja, Nigeria, Feb 3 2022 (IPS)

Seidu Ishaiku lives in the hope that his children will succeed. He and his family live with about 300 other residents in the Alheri leprosy colony outside Nigeria’s Federal Capital Territory Abuja.

“They (our children) are obviously our future and hope,” Ishaiku says. “We don’t want our children to constitute a nuisance to society. We want them to succeed and become great people in future.”

He was speaking to IPS a few days before World Leprosy Day commemorated this year on January 30.

A homestead at Alheri leprosy colony outside Nigeria’s Federal Capital Territory, Abuja.
Credit: Oluwatobi Enitan/IPS

The colony is in poor shape. The houses are dilapidated, there are few basic sanitation facilities, no sewage system, and the water tank at the clinic is empty. However, the borehole near their homes does guarantee a steady supply of water.

Most of the community are forced to stay in the facility long after they are cured – and survive on subsistence farming and petty trading while their children collect firewood and hawk to make ends meet for the family.

The clinic at Alheri leprosy colony outside Nigeria’s Federal Capital Territory, Abuja
Credit: Oluwatobi Enitan/IPS

According to the residents, the facility has been open for 16 years, and even when cured of leprosy, the families continue to live there.

Terver Anyor, the head of Business Development for The Leprosy Mission Nigeria, said stigma, myths and misconceptions around the disease mean that people affected by the disease end up living in appalling conditions outside the mainstream society. The residents recognise The Leprosy Mission Nigeria as one of the NGOs that regularly assists them.

“Many people think that because one has a disability, maybe the fingers or the feet disease are off, then they suppose that that person has leprosy, even though that person is cured,” Anyor says. He explained The Leprosy Mission Nigeria, along with other organisations, would, over this period, be involved in awareness campaigns to sensitise people on the reality of the disease.

The awareness campaign included outreach on radio, media briefings and marches to public places in Abuja. The campaign, funded by the Sasakawa Health Foundation, will help disseminate facts about the disease.

“We aim to work towards the zero-transmission of leprosy … And we are also working towards achieving zero discrimination and zero disabilities due to leprosy,” Anyor says.

“Because of discrimination, people who are affected by leprosy don’t get jobs, and also don’t get to access social services like every other person.”

Two women sit under the trees at the Alheri leprosy colony outside Nigeria’s Federal Capital Territory, Abuja. Credit: Oluwatobi Enitan/IPS

The children benefit from free education, but the headteacher of Alheri primary school, Aliyu Bashiru Kwali, says their parent’s conditions impact the children. He says many children go onto the streets to hawk as soon as school closes – some return at 10 pm, but others stay out the whole night. They return, he says, “with sleepy eyes”, and this means they cannot concentrate.

“The students having hawk on the streets to make ends meet for their parents is not helping matters, and we cannot stop them, because if they don’t hawk, they will not eat, their parents are incapacitated, so the huge responsibility falls on them at a young age,” Kwali says.

For many residents, their reality is complex and their anger palpable.

Ali Isah, the residents’ leader, says the Covid-19 pandemic exacerbated their poor living conditions.

“We have got no intervention from Government, and we are confined here and dare not go out to beg, or else we would be maltreated by security operatives,” he says of the impact of Covid protocols. He said they once had to endure a charade where government officials brought three trailers of rice, dignitaries, and media, but when they left, the community only received three bags.

“As the head of the persons affected by leprosy, my family and I got less than a quarter of a bag of rice, which was barely enough to sustain us for three days. We struggled to survive during the lockdown with no hope in sight,” Isah says. “Our rights to freedom of religion and association have been denied us. We cannot pray in public because security operatives will deal with us. We have been ostracised.”

Lilibeth Evarestus knows first-hand about the plight of people affected by Hansen’s disease, as leprosy is also known. She is a lawyer who was once had the disease.

She now runs the Purple Hope Initiative – a non-profit for women and children affected by the disease in Lagos.

“As a person that has experienced Hansen’s disease, I faced a lot of discrimination and stigmatisation based on people’s wrong information about the disease,” she told IPS.

“I then decided to go into advocacy to create awareness and disseminate the right information about the disease. Thank goodness as a lawyer and human rights activist, I have been using my office to fight for our rights.”

Purple Hope is all about “restoring hope,” she says.

This echoes the sentiments of the WHO Goodwill Ambassador for Leprosy Elimination, Yohei Sasakawa, who says of his life’s work with people affected by leprosy: “I would like to create a society where everyone feels fully engaged, able to express their opinions, and appreciated. The coming era must be one of diversity, and for that, we need social inclusion. There is such ability and potential in the world, and to have everyone participate in society will create a truly wonderful future.”

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WHO Goodwill Ambassador for Leprosy Elimination, Yohei Sasakawa, would like to create a society where there is social inclusion. It is this philosophy that motivates his life-long campaign to end discrimination against people affected by leprosy. Credit: Sasakawa Leprosy Initiative

By Cecilia Russell
Johannesburg, Jan 30 2022 (IPS)

For the WHO Goodwill Ambassador for Leprosy Elimination, Yohei Sasakawa, ensuring affected peoples’ human rights is fundamental to the campaign to eradicate the disease.

In an exclusive interview with IPS on the eve of World Leprosy Day, he recalled his first encounter with people affected by leprosy, saying they were “without dreams or hopes and there was no light in their eyes.”

Sasakawa’s father, Ryoichi, hugged the patients in the newly opened hospital in Korea. He then realized that returning hope to people affected by leprosy could be his life’s work.

This work has continued for more than 40 years, but it is not over yet.

“People who should be part of society remain isolated in colonies facing hardships,” Sasakawa, who is also the chairman of the Nippon Foundation, says.

“Isn’t it strange that someone cured of a disease can’t take their place in society? I belatedly realized that if the human rights aspect wasn’t addressed, then elimination of leprosy in a true sense would not be possible,” explaining the rationale for approaching the United Nations in 2003.

As a result, a resolution on the elimination of discrimination against persons affected by leprosy and their family members was unanimously adopted by 192 countries voting in the UN General Assembly.

While Covid-19 has temporarily ended his travels, his work is far from complete. Once the pandemic is over, Sasakawa intends to continue his travels worldwide to bring onboard top officials and politicians – presidents and prime ministers – while spreading hope to affected people.

In the interim, the global ‘Don’t Forget Leprosy’ campaign by the Sasakawa Leprosy Initiative continues. The initiative strategically links the WHO Goodwill Ambassador for Leprosy Elimination, Sasakawa Health Foundation, and the Nippon Foundation towards achieving a leprosy-free world.

Sasakawa says his message is clear:  1) Leprosy is curable. 2) Medication is free. 3) Discrimination has no place.

“When people are still being discriminated against even after being cured, society has a disease. If we can cure society of this disease—discrimination—it would be truly epoch-making.”

Here are excerpts from the interview:

Yohei Sasakawa, Chairman of The Nippon Foundation, has served as WHO Goodwill Ambassador for Leprosy Elimination since 2001. He plays a leading role in the Sasakawa Leprosy (Hansen’s Disease) Initiative, which has organized the “Don’t Forget Leprosy” campaign.

Cecilia Russell: In your message to the world for World Leprosy Day, you expressed concern that the decrease in the number of cases detected was because the Covid-19 pandemic meant that less testing was done. How can leprosy-affected people get back on track?

Yohei Sasakawa: Many issues have been sidelined because of the Covid-19 pandemic, among them the challenges posed by leprosy, also known as Hansen’s disease. According to the Global Leprosy Update for 2020, there was a 37% year-on-year decrease in new cases due to disruptions to case-finding activities. There are concerns that hidden cases will lead to increased transmission and result in more cases with disabilities. On the other hand, while figures vary from country to country, the overall treatment completion rate remains at the same level as the previous year, indicating that stakeholders are working hard to maintain services, even in the midst of the global pandemic.

Even in normal times, health ministries have jurisdiction over all kinds of diseases. Compared to diseases such as TB, AIDS, or malaria, however, there are few cases of leprosy, so budgets and personnel are limited. Patients, meanwhile, might not visit a hospital because the long history of stigma attached to the disease makes it difficult, or because in its early stages, symptoms are painless. That’s why I feel it is necessary to meet with those at the top of the country and have them issue a call to eliminate leprosy. Once the COVID situation eases, I want to visit countries and encourage presidents and prime ministers to recognize the importance of this issue and seek their cooperation in helping activities against the disease to resume.

At the same time, I believe that the participation of people who have experienced the disease is also very important. There are so many things that people can do, such as active case-finding, mental support for people undergoing treatment, and awareness-raising. In 2011, the WHO issued guidelines on strengthening the participation of persons affected by leprosy in leprosy services in such areas as a way to improve the quality of leprosy services.

CR: You have chosen as a life’s work to raise awareness of both the disease and the impact of the stigma of leprosy. This is an age-old stigma and was considered a sign of impurity in Christian biblical times. How has an awareness of leprosy as a human rights issue changed perceptions about the disease? What more needs to be done?

YS: I started working on leprosy in the 1970s and have been the WHO Goodwill Ambassador for Leprosy Elimination since 2001. People who should be part of society remain isolated in colonies facing hardships. The more you look into it, the more you see the restrictions they live under, including legal restrictions in some cases. Isn’t it strange that someone cured of a disease can’t take their place in society? I belatedly realized that if the human rights aspect wasn’t addressed, then elimination of leprosy in a true sense would not be possible. That’s when I first approached the United Nations about this in 2003.

In 2007, the Japanese government appointed me as its Goodwill Ambassador for the Human Rights of Persons Affected by Leprosy. Collaboration with the Japanese government led in December 2010 to a UN General Assembly resolution on the elimination of discrimination against persons affected by leprosy and their family members to call on states to full consideration of Principles and Guidelines. The resolution was adopted unanimously by 192 countries.

Discrimination toward persons affected by leprosy and their families should never be tolerated. That’s why the Principles and Guidelines were approved.

Although they are not binding, given the reality that even treaties ratified by states, such as the Convention on the Rights of Persons with Disabilities, the Convention on the Rights of the Child, and the Framework Convention on Tobacco Control, are difficult to implement, we need to think of them as a tool to be used by stakeholders, including persons affected by leprosy, when advocating with governments to fix the problems.

When people are still being discriminated against even after they have been cured, then society has a disease. If we can cure society of this disease—discrimination—it would be truly epoch-making.

CR: Could you please tell our readers about your father and his role in influencing you to make this mission a life’s work?

YS: My father Ryoichi also served as a member of Parliament. He was a man who was especially compassionate toward the vulnerable and dedicated his life to them. Concerning leprosy, in particular, there was an incident where a young lady living in the neighborhood suddenly disappeared, and he later found out she had been segregated due to leprosy. He had a very strong sense of justice and took exception to the fact that something so unreasonable was permitted on the basis of a disease.

In 1962, my father established the Japan Shipbuilding Industry Foundation, the forerunner of The Nippon Foundation, and began social contribution activities. In 1967, he started work in earnest on realizing his long-held dream of eradicating leprosy with the construction of some new facilities for a leprosy center in Agra, India. With the establishment of the Sasakawa Memorial Health Foundation (now Sasakawa Health Foundation) in 1974, efforts to tackle the disease stepped up.

My father built leprosy hospitals, mainly in Southeast Asia. I was young and often accompanied him, but I didn’t go inside the hospitals. In the mid-1970s, he responded to a request to build a leprosy hospital in Korea. I went with him to the opening ceremony and entered a leprosy hospital for the first time. Everyone sat on the bed facing us, but they were completely expressionless. Their faces were ashen-colored; they were without dreams or hopes, and there was no light in their eyes.

I was really surprised to see my father go to every bed, hug each person, and encourage them in a very natural way, unconcerned by the pus oozing from their bandages. Discovering a world that I had not encountered before and seeing how naturally my father behaved, I wondered if this would be my life’s work. Since then, I have been active in leprosy.

CR: In some countries, people affected by leprosy are still confined to leprosy colonies. How do you see your role as WHO Goodwill ambassador and the Don’t Forget Leprosy campaign changing these perceptions around a treatable disease? What is needed to change the perception about leprosy and remove the stigma?

YS: Thinking strategically about how to make people aware of the importance of this problem and how to solve it is very important. You have to convince heads of state in each country. If a budget is allocated as a result of meeting with and explaining the situation to the head of state, if the president orders it—then the person in charge at the ministry of health or the leprosy program manager will be greatly encouraged in their work.

On the other hand, it is also very important to reach the many people without knowledge of leprosy and allay their fears explain that it’s not hereditary, it’s not divine punishment, it’s not highly contagious. Wherever I go, I always stress: 1) Leprosy is curable; 2) Medication is free; 3) Discrimination has no place. For that, the help of the media is necessary, so one of my very important tasks is to have a proper media strategy.

Also, as we now live in an era where every individual can publicize leprosy issues via social media, I think it is important that everyone concerned with these issues actively raises them, not as issues affecting someone else, but as personal issues.

CR: You have been involved in numerous other humanitarian endeavors, apart from your 40-year-old association with leprosy and your role as WHO Goodwill Ambassador for Leprosy Elimination. These include the Change for Blue campaign, and you acted as a special envoy of the Japanese government to try to bring peace to Myanmar. Do you have a philosophy about humanitarian work that guides you?

YS: One of my philosophies in life is the ‘on-site principle’: problems and their solutions are found in the field. Another is that social actions require that you keep your enthusiasm bubbling over, regardless of your age, and have the mental fortitude to withstand any difficulties. In addition, you have to keep going until you achieve results. I’ve acted on the basis of these three ideas.

CR: Is there anything else you would like to add?

YS: There are more than 1 billion people in the world living with disabilities, including persons affected by leprosy. We need to create an inclusive society where everyone can have an education, find work and get married if they want to. People have the passion and the motivation; often, all they lack is opportunity.

I would like to create a society where everyone feels fully engaged, able to express their opinions, and appreciated. The coming era must be one of diversity, and for that, we need social inclusion. There is such ability and potential in the world, and to have everyone participate in society will create a truly wonderful future.

That’s why it’s important for persons affected by leprosy to have confidence and speak out. To support them, Sasakawa Health Foundation and The Nippon Foundation are helping them to build up their organizational capacity. I’d like to see a society in which everyone is active, able to express their opinions to the authorities with confidence, and their contribution is valued.

Yohei Sasakawa, Chairman of The Nippon Foundation, has served as WHO Goodwill Ambassador for Leprosy Elimination since 2001. He is part of Sasakawa Leprosy (Hansen’s Disease) Initiative, which has organized the “Don’t forget leprosy” campaign.

By External Source
Jan 28 2022 (IPS-Partners)

Sasakawa Leprosy (Hansen’s Disease) Initiative is collaborating with 32 organizations from 13 countries to promote the message “Don’t forget leprosy” in the run-up to World Leprosy Day on January 30. The international campaign includes awareness-raising events and outreach to governments and is being publicized via newspapers, television, radio, and social media.

Based in Tokyo, Japan, Sasakawa Leprosy (Hansen’s Disease) Initiative launched the “Don’t forget leprosy” campaign in August 2021 to ensure efforts against leprosy, also known as Hansen’s disease, are not sidelined amid the coronavirus pandemic.

Taking part are NGOs, organizations of persons affected by leprosy, research institutes, and government agencies from Bangladesh, Brazil, India, Indonesia, Nepal, Nigeria, Papua New Guinea, Portugal, Senegal, Sierra Leone, Tanzania, Uganda, and the United Kingdom.

The Initiative’s Yohei Sasakawa, who serves as WHO Goodwill Ambassador for Leprosy Elimination, said: “The impact of the coronavirus pandemic has been particularly hard on persons affected by leprosy and their families who were in a vulnerable situation to begin with. Lockdowns and other measures to prevent the spread of the virus have caused many problems at the field level, making access to medical services difficult, causing loss of livelihoods, and exacerbating the difficulties that persons affected by leprosy already encounter due to stigma and discrimination. They must not be forgotten.”

From India, which accounts for around 60% of all new cases of leprosy diagnosed globally each year, 13 8 organizations are participating. Activities include intensive awareness-raising events aimed at school children and university students to provide young people with correct knowledge about leprosy and help prevent discrimination from taking root.

In Brazil, the country with the second-highest number of annual new cases and which has yet to eliminate leprosy as a public health problem (with elimination defined as a prevalence rate of less than 1 case per 10,000 population), the campaign is being carried out by more than 2,000 persons affected by leprosy and volunteers from MORHAN (the Movement for the Reintegration of Persons Affected by Hansen’s Disease). Activities include a focus on healthcare professionals and involve training local public health nurses, strengthening the functions of leprosy referral centers and case-finding.

Activities for World Leprosy Day by Sasakawa Leprosy (Hansen’s Disease) Initiative
The Initiative has launched a special website (https://gasasakawa.org/) for the Global Appeal to End Stigma and Discrimination against Persons Affected by Leprosy. Inaugurated by Sasakawa in 2006 and released in conjunction with World Leprosy Day, the annual Global Appeal underlines the messages that leprosy is curable, treatment is available free of charge throughout the world, and that social discrimination has no place.

As side events of this year’s Global Appeal, the Initiative is hosting two webinars on raising awareness of leprosy (“The role of health professionals at the grassroots level” and “The role of young people: sharing discussions from three regions”) as well as a photo contest on social media. A selection of the best photos, which depict the daily lives of persons affected by leprosy and relief activities, will be displayed on the Global Appeal website.

In addition, Sasakawa has posted a message for World Leprosy Day on the WHO website.

About Sasakawa Leprosy (Hansen’s Disease) Initiative
The Initiative is a strategic alliance between WHO Goodwill Ambassador for Leprosy Elimination Yohei Sasakawa, The Nippon Foundation and Sasakawa Health Foundation for achieving a world without leprosy and problems related to the disease. Since 1975, The Nippon Foundation and Sasakawa Health Foundation have supported the national leprosy programs of endemic countries through the WHO, with support totaling some US$200 million to date. In cooperation with the Japanese government and other partners, the foundations have played an important role in advocating with the United Nations, helping to secure a 2010 UN General Assembly resolution on the elimination of discrimination against persons affected by leprosy and their family members and the appointment of a UN Special Rapporteur on leprosy by the UN Human Rights Council in 2017.

See the Initiative’s home page for further details.

About leprosy
Leprosy, also known as Hansen’s disease, is an infectious disease that mainly affects the skin and peripheral nerves. Around 200,000 cases are newly reported each year. Leprosy is curable with multidrug therapy, but left untreated can result in permanent disability. An estimated 3 to 4 million people in the world today are thought to be living with some form of disability as a result of leprosy. Although completely curable, many myths and misunderstandings surround the disease. In various parts of the world, patients, those who have been treated and cured, and even their family members continue to be stigmatized. The discrimination they face limits their opportunities for education, employment, and full participation in society.

Chart1: List of participating organizations

Alice Cruz-UN, Special Rapporteur on eliminating discrimination against persons affected by leprosy and their family members, told the youth that their participation was crucial to removing legal discrimination. Her young son Leo asked the global audience not to forget leprosy. Credit: Joyce Chimbi/IPS

By Joyce Chimbi
Nairobi, Kenya, Jan 25 2022 (IPS)

Yohei Sasakawa said the youth have the power to change the world, and their participation in removing the stigma and myths about leprosy is crucial to the campaign to end the disease.

Sasakawa, the WHO Goodwill Ambassador for Leprosy Elimination and Chairman of the Nippon Foundation, was speaking at a webinar held in the run-up to World Leprosy Day on January 30. He engaged youth from Africa, Asia, and Latin America in an online discussion dubbed ‘Raising Awareness about Leprosy – Role of Youth’.

“The history of the world is changed by young people. The spirit of young people is essential in the fight against leprosy. Speak out and let the world understand leprosy better. Use online tools at your disposal to tell the world not to forget leprosy,” Sasakawa told participants.

“The younger generation has joined our efforts. Our goal is to hear from you, work with you and take action with you towards a day when there will be zero stigma and discrimination against those affected by leprosy.”

At the heart of discussions were highlights from three regional forums, stimulating conversations about leprosy and its related challenges and efforts to build collaboration and networks to combat an ancient disease at risk of being forgotten.

The webinar was organized against the backdrop of the global ‘Don’t Forget Leprosy’ campaign by the Sasakawa Leprosy Initiative. The initiative strategically links the WHO Goodwill Ambassador for Leprosy Elimination, Sasakawa Health Foundation, and the Nippon Foundation towards achieving a leprosy-free world.

Stigmatized, forced to migrate, denial of education, abandonment of children affected by leprosy, difficulties for those affected by leprosy, and women finding marriage partners – were highlighted in the discussions. Leprosy is even recognized as grounds for divorce in some countries.

These were only a few of the many challenges faced by those affected by the disease, speakers said.

Yohei Sasakawa, the WHO Goodwill Ambassador for Leprosy Elimination and Chairman of the Nippon Foundation, told youth from Africa, Asia, and Latin America that they had the means to change perceptions about leprosy. They were educated and knew how to use social media to benefit leprosy-affected communities. Credit: Joyce Chimbi/IPS

“We need collective efforts to address the disease itself and, at the same time, the rampant stigma associated with leprosy. Today, the second generation of those affected by leprosy still find difficulties getting a job because of the stigma,” Sasakawa said.

He said efforts to address leprosy are two-pronged, engaging global and well-respected figures and grassroots actors for community-level engagement.

Participants heard that youths learning about leprosy and sharing that it is curable could accelerate progress towards a world free from medical and social problems related to leprosy.

Youth participation could significantly help dispel myths rooted during the many centuries in which leprosy, also known as Hansen’s disease, was incurable.

The online discussion followed three preparatory regional youth forums held in December 2021 and January 2022. The engagement was in anticipation of a Global Youth Forum on the theme, ‘Don’t Forget Leprosy’, organized by the Sasakawa Leprosy Initiative slated for March 2022.

Dr Michael Chen from HANDA, China, told participants how the first Asia Youth Forum engaged young people in a virtual meeting to discuss the reduction of stigma and discrimination faced by people affected by leprosy.

He said six Asian countries, including Bangladesh, China, India, Indonesia, Myanmar, and Nepal, participated. Discussions included the need to engage the younger generation in a world free of stigma and discrimination.

Similarly, Marcos Costa, from Morhan in Brazil, spoke of the first Latin American and Caribbean Virtual Meeting of young people affected by leprosy, their family members, and supporters.

The meeting, he said, sought to engage young people and their families in a dialogue centered on the challenges faced by those affected by the disease and to explore policy solutions to the problem.

“In Brazil, it is reported that many new leprosy cases were not diagnosed in 2020 because of COVID-19. The pandemic has compounded challenges facing young people as many of them are unemployed due to the stigma attached to people affected by leprosy,” he said.

Likewise, Tadesse Tesfaye from ENAPAL in Ethiopia summarized discussions during the first-ever Africa Youth Forum, with attendance from nine African countries, including Kenya, Niger, and Mozambique.

Tesfaye said the forum explored “how stigma and discrimination manifest upon persons affected by leprosy and their families and the need to build national, regional and international alliances to address social and medical challenges related to the disease.”

Within this context, Alice Cruz, the UN Special Rapporteur on eliminating discrimination against persons affected by leprosy and their family members, reminded the younger generation that leprosy was also a political factor and their voices were needed.

She called for diversity, new faces, ideas, innovations, and the engagement of young people and families affected by leprosy.

Cruz stressed that young people’s contribution to enforcing the human rights of people affected by leprosy should be encouraged. Their contribution was crucial to reforming more than 150 laws and regulations in various parts of the world that discriminate against persons affected by leprosy.

Her young son, Leo, finalized her address calling for a world free of all forms of discrimination and one where leprosy was not forgotten.

Chen and Costa further drummed support for the engagement of young people especially through social media to raise awareness of leprosy and challenge long-standing stereotypes.

“We need to cultivate the potential of young people, provide sufficient funding to young people, and a supportive platform for young people to learn, grow, communicate and solve problems,” Chen said.

Dr Takahiro Nanri, the Sasakawa Health Foundation executive director, moderated a session between the Goodwill Ambassador and young participants, including Costa, Rahul Mahato from ATMA Swabhiman in India, and Joshua Mamane from IDEA in Niger, who are also from a families affected by leprosy.

The discussion stressed the need to engage young people in the fight against leprosy actively.

Sasakawa said youth participation would usher in a new and much-awaited era in global and grassroots efforts to fully tackle leprosy as medical, public health, and human rights issues.

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Yohei Sasakawa, WHO Goodwill Ambassador for Leprosy Elimination and Chairperson of the Nippon Foundation, thanks participants at a webinar ‘Raising Awareness about Leprosy, Role of Health Professionals at the Grassroots Level’ organized by the Sasakawa Leprosy Initiative. He is with other participants from Japan, India and Nepal in the “Don’t Forget Leprosy” campaign event.

By Joyce Chimbi
Nairobi, Kenya, Jan 20 2022 (IPS)

The human rights of people affected by leprosy are central to Yohei Sasakawa’s concept of a leprosy-free world.

Sasakawa, the WHO Goodwill Ambassador for Leprosy Elimination and Chairman of the Nippon Foundation, was speaking at a webinar ‘Raising Awareness about Leprosy, Role of Health Professionals at the Grassroots Level’ organized by the Sasakawa Leprosy Initiative.

A leprosy-free world was one where “patients and those cured of leprosy live free of discrimination and, people around them will be free of the misunderstanding, ignorance and fear that perpetuate discrimination”, he told the webinar.

Sasakawa Leprosy Initiative is a strategic alliance between WHO Goodwill Ambassador for Leprosy Elimination, the Nippon Foundation and Sasakawa Health Foundation for achieving a world without leprosy and problems related to the disease. The initiative spearheaded a campaign, “Don’t Forget Leprosy”, to raise awareness about the condition in the face of the coronavirus pandemic.

The WHO Goodwill Ambassador envisions a post-COVID world where those affected by leprosy will be liberated from such stigma and discrimination in keeping with human rights.

Sasakawa says this world is now at risk of delaying leprosy elimination due to the COVID-19 pandemic, as there was a 37 percent drop in reported new cases and leprosy programs in many countries have stalled or scaled back.

Participants heard about the role of health professionals in combating leprosy, recognition of this role and the successes and challenges faced in addressing leprosy during the ongoing health pandemic.

Their role, Sasakawa said, was a central pillar to the vision of a leprosy free world as it helps reduce transmission and disability.

An estimated three to four million people live with some form of disability caused by leprosy, also known as Hansen’s disease.

“The ‘Don’t Forget Leprosy’ is a global campaign because our voices alone are not enough. Stopping leprosy requires (the involvement of) all of us, from India and Nepal to all other countries around the world,” he said.

Dr Rashmi Shukla outlined efforts in India to identify and treat patients with leprosy. She was speaking at a webinar ‘Raising Awareness about Leprosy, Role of Health Professionals at the Grassroots Level’ organized by the Sasakawa Leprosy Initiative. Credit: Joyce Chimbi/IPS

Dinesh Basnet, Central President of the International Association for Integration, Dignity and Economic Advancement (IDEA) in Nepal, said he was happy to see progress in recent years.

“More so Nepal’s efforts to track and eliminate leprosy. Even during the pandemic, detection and treatment interventions were uninterrupted, and this has been possible due to government commitment and unrelenting efforts of health professionals,” said Basnet.

“People affected by leprosy were not forgotten as communication continued through WhatsApp groups, and this was critical during the lockdown.”

Dr Indra Napit, a senior Orthopedic Surgeon at Anandaban Hospital, Nepal, spoke about innovative technology in the trial of Autologous Blood products to promote ulcer healing in Leprosy. He added that a new drug was on trial to manage reactions to this form of treatment at this leprosy mission.

In a video message, Birodh Khatiwada, Nepal’s Minister of Health and Population, spoke of Nepal’s undisrupted program to address leprosy, including the continued supply of leprosy medication despite the pandemic.

He says Nepal has already prepared the National Leprosy Roadmap, 2021-2030, National Leprosy Strategy 2021-2025, in line with the Global Leprosy Strategy, Neglected Tropical Diseases Roadmap and the Sustainable Development Goals (SDGs).

Sasakawa emphasized that it was indeed the ultimate goal for India and other affected countries worldwide to reach zero leprosy cases by 2030.

Despite challenges in the fight to eliminate leprosy, a ray of hope shines through, with Anju Sharma sharing good practices in case finding in India amid the ongoing health pandemic.

Sharma is an accredited Social Health Activist and is considered a driving force behind India’s public health system and an essential link between the community and the public health system.

“Screening for leprosy during the pandemic is much more difficult. As COVID-19 cases increase, so does my responsibilities because I have to strictly follow COVID-19 protocols, and this takes a lot of time,” Sharma explained.

“Due to the pandemic, people are hesitant about getting screened. But I reassure them that protocols will be observed and remind them that failure to detect and treat leprosy can lead to disability.”

Dr Venkata Ranganadha Rao Pemmaraju, acting team leader, WHO Global Leprosy Programme, emphasized that discussing the role of health workers was critical, and hearing from those in the frontlines helps efforts to eliminate the pandemic move forward.

WHO, he said, subscribes to the Don’t Forget Leprosy campaign. He lauded ongoing efforts to sustain counselling for those affected by leprosy and those who tracked and managed Nepal-India cross border leprosy cases despite challenges COVID-19 protocols like restrictions on movement and lockdowns.

Dinesh Basnet, a person affected by leprosy thanked health care workers and others for their efforts in eliminating the disease. He was talking at a webinar ‘Raising Awareness about Leprosy, Role of Health Professionals at the Grassroots Level’ organized by the Sasakawa Leprosy Initiative. Credit: Joyce Chimbi/IPS

Similarly, Dr Rabindra Baskota, the Leprosy Control and Disability Management Section director in Nepal’s Ministry of Health and Population, confirmed that health workers had been relentless to find new cases, raising awareness on leprosy and treating patients despite ongoing challenges.

“Still, there is a need to train community health workers to detect new cases and manage reactions to leprosy treatment even as older and more experienced health workers retire,” he said.

Dr Anil Kumar, the deputy director-general (Leprosy) in India’s Ministry of Health and Family Welfare, who spoke about good practices in combating leprosy said that a leprosy-free India was not very far off.

Despite a notable decline in screening and detecting cases due to COVID-19, he said critical interventions were nonetheless rolled out, and that leprosy-related services continued at the grassroots level.

“Migrant labourers were screened for leprosy at point of return to home districts and patients on treatment tracked. Treatment defaulters were cross notified based on the address in treatment record,” Kumar said.

“A WhatsApp group titled Leprosy Action Group was created for cross notification, and members included state leprosy officers and partners. Supportive supervision and monitoring up to sub-district level using virtual platforms continues.”

Executive Director of the Sasakawa Health Foundation, Dr Takahiro Nanri, moderated a panel discussion that included a session to further shed light on additional support needed to achieve leprosy elimination milestones.

Sasakawa suggested that health workers’ training included human rights, and the panel lauded health workers for their passionate and proactive steps to eliminate the disease.

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Yohei Sasakawa – WHO Goodwill Ambassador for Leprosy Elimination and Chairman of Nippon Foundation speaking at the 3rd of the “Don’t Forget Leprosy” webinar series organized by Sasakawa Leprosy (Hansen’s Disease) Initiative. Credit: Stella Paul

By Stella Paul
Hyderabad, Dec 3 2021 (IPS)

As 2021 nears its end, public health systems worldwide remain severely strained by COVID 19, which is showing no sign of ending. But even as countries battle to control the deadly pandemic, they must also maintain the progress made against other diseases, including leprosy, global leprosy experts and advocates have urged.

On Thursday, at a webinar organized by the Sasakawa Leprosy (Hansen’s Disease) Initiative, a strategic alliance that links the WHO Goodwill Ambassador for Leprosy Elimination, Sasakawa Health Foundation, and The Nippon Foundation for achieving a leprosy-free world, over 150 members of several leprosy-affected people’s organizations expressed their concerns about leprosy resurgence. In Comoros, in East Africa, hundreds of new cases had been detected in the smaller islands, and many of the affected are children.

“We have carried out case-finding mini-campaigns in targeted areas of Anjouan and Mohéli (islands in Comoros) with the help of community health workers and have detected new cases including in children aged 15 and above,” said Dr. Aboubacar Mzembaba, National Programme Manager, Leprosy & Tuberculosis in the Ministry of Health, Comoros.

Data shared by Mzembaba shows that in 2020, there were 217 new cases, which increased to 239 in 2021. He said about 33 percent of children are affected by leprosy, and the government aims to bring this down to 10%.

The growing number of cases among children was “a concern,” said Pemmaraju V Rao, Acting Team Leader, Global Leprosy Programme, WHO.

Rao, who also facilitated the webinar, said that since cases continued to be unreported in many regions of the world, it was essential to continue with the current strategies of detecting and managing leprosy cases, including door-to-door visits, strengthening local health facilities, regular training, and supervision of health workers.

Tesfaye Tadesse, the Managing Director of Ethiopian National Association of Persons Affected by Leprosy (ENAPAL), said the organization has been at the forefront of Ethiopia’s battle for leprosy eradication. It was also concerned with protecting the dignity and rights of leprosy-effected people.

At the webinar, Tesfaye highlighted how COVID undermined leprosy in Ethiopia even though new cases have continued to grow. Also, fear of social exclusion drove people to seek alternative cures, like faith-healing.

“This year, we have detected 21 new cases, many of them in the holy water areas of the Amhara region. People are so scared of social stigma, instead of seeking medical treatment, they are going to collect holy water for their cure,” said Tadesse.

As stigma and discrimination remain a challenge across countries and cultures, people affected by leprosy have emerged as a tight-knit community. They take the opportunity to come together at any community event and share each other’s struggles and wins. In Thursday’s webinar, the third of a series of virtual seminars in the ‘Don’t Forget Leprosy’ campaign, participants and speakers could be seen encouraging each other and sharing their thoughts freely.

When Kofi Nyarko – a leprosy-affected person from Ghana, stressed the importance of early detection and appropriate treatment without stigma for preventing disabilities in leprosy, participants from other countries were quick to express their support and cheer him on.

Yohei Sasakawa – WHO Goodwill Ambassador for Leprosy Elimination and Chairman of The Nippon Foundation responds to a question from IPS News correspondent at a webinar organized by the Sasakawa Leprosy (Hansen’s Disease) Initiative. Credit: Stella Paul

However, to win their fight in a post-pandemic era, the leprosy-affected community would need more external support as well, said Yohei Sasakawa, WHO Goodwill Ambassador for Leprosy Elimination and Chairman of The Nippon Foundation.

According to Sasakawa, whose foundation has been instrumental in providing financial, technical, and moral support to leprosy-affected organizations worldwide, achieving a zero-leprosy world cannot be accomplished through a technocratic approach alone. A rights-based, human-centered approach that stresses full dignity and equality for the leprosy-affected community is crucial to achieving the goal.

For that, support of new allies would be vital – and Sasakawa advised the participants to seek more partners for their campaigns, including youth and media.

“The young generation is not aware of the struggle of the leprosy-affected people, especially of the older generation. We should therefore find ways to engage with them, make them aware,” Sasakawa told IPS.

“Designing educational programs is a good way to do this. Taking a human-rights approach, sharing your personal stories with the youth can help. It is also important to engage with media who can help highlight the causes.”

All the speakers and participants at the webinar agreed that the best way to achieve the aims of the “towards zero-leprosy” drive is to strengthen their campaign by increasing its global visibility.

Observation of the World Leprosy Day on January 30 presented an opportunity toward that and, the participants agreed to utilize it with renewed passion and a broader outreach plan.

“Engage with the media, utilize the radio networks in your country. COVID is there, but we must continue with our campaign,” Sasakawa advised.

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Julia Gama, Miss Brazil Universe working with Morhan to deliver food baskets to people affected by Hansen’s disease, with support from the Sasakawa Health Foundation. Credit: Morhan

By Joyce Chimbi
NAIROBI, Sep 29 2021 (IPS)

A new dawn has come, and it was through the work of Yohei Sasakawa, the WHO Goodwill Ambassador for Leprosy Elimination, that those affected by leprosy now had a voice to speak for themselves.

So said Faustino Pinto, a person affected by leprosy and Vice National Coordinator of Movement for the Reintegration of People Affected by Hansen’s disease (Morhan), at a webinar with the theme ‘Hansen’s Disease/Leprosy as Human Rights issue’.

Sasakawa, who is also the chairperson of the Nippon Foundation, and Dr Alice Cruz, UN Special Rapporteur on the Elimination of Discrimination against Persons Affected by Leprosy, addressed the webinar. Guests included Caroline Teixeira, Miss World Brazil 2021 and Julia Gama, Miss Universe Brazil 2020. The Sasakawa Health Foundation, in collaboration with Morhan, were co-conveners. The event forms part of a 10-month-long campaign dubbed ‘Do not Forget Leprosy’.

The celebrity guests applauded his sentiments.

Faustino Pinto, a person affected by leprosy and Vice National Coordinator of Morhan. Credit: Joyce Chimbi

Gama, also working with Morhan, told IPS: “Hansen’s disease has a cure, and I believe so does prejudice. I will use my voice to ensure that those who were silenced are heard. I believe togetherness is our strength, and together we can eradicate Hansen’s disease.”

Pinto praised Sasakawa for his lifelong commitment to improving the lives of those affected by the disease.

“We were taught to just accept what we were told: Take the medicine, keep the appointments, open your mouth to check if you did take the medicine, do not abandon the treatment,” says Pinto. This changed when Sasakawa became involved.

Pinto appealed for those affected by leprosy to be heard, seen, and involved in efforts towards zero leprosy.

He lauded the Sasakawa and the Foundation “for always talking about us and including us in the debate” and for “truly listening to us and giving us a voice”. It is this voice that Pinto used to appeal to the global community, saying, “Don’t Forget Hansen’s Disease. Don’t Forget Us.”

At the heart of discussions was the bid to draw the world’s attention to a disease in equal measure, a medical and social problem. Furthermore, the meeting was a key platform where participants were urged to approach leprosy as a human’s rights issue.

While concerted efforts have today led to less than one case of leprosy in a population of 10 000 people as per WHO estimates, with at least 200 000 new cases reported annually, experts say leprosy is still very much a concern.

“There are more than one billion people in the world living with disabilities, including persons affected by leprosy. We need to create an inclusive society where everyone can have an education, find work, and get married if they want to. People have passion and motivation. Often, all they lack is opportunity,” says Sasakawa.

Governments efforts to respond to COVID-19 is believed to have setback the progress towards zero leprosy.

“Persons affected by leprosy face multiple discrimination. They are often discriminated against on various grounds – like leprosy, but also gender, age, poverty, disability, sexuality, and race. They also struggle with violence from the State and society and with interpersonal violence,” says Cruz.

Caroline Teixeira, Miss World Brazil, with Morhan’s national coordinators Artur Custódio (centre) and Lucimar Batista (right), and the director of the National Beauty Contest and Morhan volunteer, Marina Fontes (left). Credit: Morhan

“There is such ability and potential in the world, and to have everyone participate in society will create a truly wonderful future. That is why it is important for persons affected by leprosy to have confidence and speak out,” Sasakawa emphasises.

“To support them, Sasakawa Health Foundation and The Nippon Foundation are helping them to build up their organisational capacity. I would like to see a society in which everyone is active, able to express their opinions to the authorities with confidence, and their contribution is valued,” he adds.

Over ten months, the campaign, which leverages Sasakawa’s 20th anniversary as Goodwill Ambassador, will raise awareness of why the world should stay focused on leprosy.

“It was a great honour to be chosen Miss World Brazil and thus become an ambassador of the fight against Hansen’s disease in Brazil, the country with the highest incidence of the disease in the world,” Teixeira told IPS.

“In the coming days, I will be part of a Morhan delegation visiting several cities in the north of the country, sensitising governments to action in defence of the rights of persons affected. We will certainly unite many voices so that Hansen’s disease is not forgotten,” she says.

Nevertheless, left untreated, leprosy can result in permanent disability. Worldwide, three to four million people live with some form of disability due to leprosy, as per WHO estimates.

There is growing concern that COVID-19 and the fear of discrimination could further prevent people from visiting hospitals, leading to diagnosis and treatment delays.

As it is, WHO’s 2020 statistics show an estimated 40 percent drop in the detection of new leprosy cases, which, experts warn, will lead to increased transmission of leprosy and more cases of disability.

Discrimination and stigma remain a primary concern for Sasakawa. He decries that “people who should be part of society remain isolated in colonies facing hardships. The more you look into it, the more you see the restrictions they live under, including legal restrictions in some cases. Is it not strange that someone cured of a disease cannot take their place in society?”

“If the human rights aspect wasn’t addressed, then elimination of leprosy in a true sense would not be possible. I would like to create a society where everyone feels fully engaged, able to express their opinions, and appreciated. The coming era must be one of diversity, and for that, we need social inclusion.”

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Yohei Sasakawa, WHO Goodwill Ambassador for Leprosy Elimination answers questions from Patricia Soares, a guest at the launch of the ‘Don’t Forget Leprosy’ campaign. They are with Takahiro Nanri, Executive Director of the Sasakawa Health Foundation. Credit: Cecilia Russell

By Cecilia Russell
JOHANNESBURG, SOUTH AFRICA, Aug 4 2021 (IPS)

A visit to a leprosy facility in Korea with his father, Ryoichi Sasakawa, spurred Yohei Sasakawa to dedicate his life to eliminating both the disease and discrimination of those affected.

He was speaking in an emotional pre-recorded address ahead of his 20th anniversary as WHO Goodwill Ambassador for Leprosy Elimination and at the launch of a 10-month ‘Don’t Forget Leprosy’ campaign by the Sasakawa Leprosy (Hansen’s Disease) Initiative.

Sasakawa said while he had achieved much in the 20 years, including getting the UN General Assembly to adopt the guidelines for eliminating discrimination of people affected by leprosy, also known as Hansen’s disease, the COVID-19 pandemic threatened the success of an international campaign to eradicate the disease.

In the past 18 months, while the world grappled with the pandemic, there was an estimated 30% to 50% decrease in detecting new leprosy cases. This could lead to increased transmission of the disease and more cases of disability, the webinar heard. In many communities, protocols, including lockdowns, had made it difficult to access treatment. This resulted in a loss of livelihoods and exacerbated discrimination that people affected by leprosy often face.

“Even amid the pandemic, it is very important that everyone involved in leprosy work continues what they are doing. We must not allow leprosy to be forgotten,” Sasakawa said.

Special guest Dr Poonam Khetrapal Singh, Regional Director, WHO Regional Office for Southeast Asia, said the pandemic could undo decades of progress unless addressed.

“Let us be clear COVID-19 will be with us for some time. It is not enough to maintain minimal leprosy services. Rather such services must be restarted or expanded, with a focus on intensifying outreach activities to identify cases and begin treatment to all who need it,” Singh said.

However, as much as the pandemic was a threat, it had also allowed a focus on new technologies.

For many months now, “e-learning materials have helped community volunteers identify potential leprosy cases, and then refer them on to health workers,” Singh said. This was being extended to counselling and mental health support and should be harnessed in this campaign to fight both the disease and discrimination of those affected.

Sasakawa said in his 20 years as a goodwill ambassador, he had been on 200 trips to 100 countries. Here he spread the message of eliminating both disease and discrimination.

In his keynote address, he likened his campaign to a motorcycle with the front wheel symbolising the elimination of the disease and the back wheel eliminating discrimination.

“Both wheels must turn at the same time if we are to make progress toward a world without leprosy and its associated problems,” he told the webinar. This symbol is included in the campaign’s logo.

During an extensive question and answer session, Sasakawa said it was crucial that those affected return to work to support themselves. There were several initiatives, beyond just speaking to top politicians, that could be used.

These initiatives included reskilling but also included getting big businesses involved in the employment of people with disabilities. Sasakawa referred to the Valuable 500 project, launched in 2019 at World Economic Forum in Davos, Switzerland. This project, supported by the Nippon Foundation, called on the top 500 companies to promote the inclusion in business of people with disabilities.

Sasakawa said while he was a person who “believes the solution lies in the field”, the pandemic taught him it was now crucial to include new technology – webinars and social media – in the tool kit to end the disease and discrimination.

“Today, thanks to these technological tools, we are able to share the best practices that are happening in various countries and share with the world,” he said.

The Initiative is a strategic alliance between WHO Goodwill Ambassador for Leprosy Elimination Yohei Sasakawa, The Nippon Foundation and Sasakawa Health Foundation for achieving a world without leprosy and problems related to the disease. Since 1975, The Nippon Foundation and Sasakawa Health Foundation have supported the national leprosy programs of endemic countries through the WHO, with support totalling some US$200 million to date.

Leprosy is an infectious disease that mainly affects the skin and peripheral nerves. Around 200,000 cases are newly reported each year. Leprosy is curable with multidrug therapy but, left untreated, can result in permanent disability. An estimated 3 to 4 million people in the world today are thought to be living with some form of disability as a result of leprosy.

The campaign will feature a total of six webinars, online media briefings, TV and radio spots, social media messaging and videos featuring the Goodwill Ambassador. It will also incorporate other awareness-raising activities, including the annual Global Appeal to End Stigma and Discrimination against Persons Affected by Leprosy issued at the end of January.

A 14th century painting depicts two leprosy patients denied entrance to town. Credit: Wikimedia Commons

By Yohei Sasakawa
May 31 2021 (IPS-Partners)

The 74th World Health Assembly (WHA) takes place from May 24 to June 1. This year’s gathering is likely to be dominated by Covid-19, but here I want to talk about a different disease—leprosy—and a resolution that was adopted at the WHA exactly 30 years ago.

This resolution called for the elimination of leprosy as a public health problem at the global level by the year 2000, with elimination defined as a prevalence rate of less than 1 case per 10,000 population. It was a landmark resolution for the time.

Leprosy, also known as Hansen’s disease, is a chronic infectious disease caused by the bacillus Mycobacterium leprae. It mainly affects the skin and peripheral nerves and is said to be one of the oldest diseases in human history.

Today an effective treatment exists in the form of multidrug therapy (MDT) and with early detection and treatment, the disease is completely curable. But if treatment is delayed, leprosy can cause impairments to the skin, nerves, face, hands and feet, and lead to permanent disability. Together with deep-seated fears and misperceptions about the disease, this has subjected persons affected by leprosy as well as their family members to severe discrimination, which regrettably continues to this day.

And, amid the coronavirus pandemic, we can see parallels between the discrimination and hostility toward Covid-19 patients, their families and health personnel that has been reported in different parts of the world and society’s attitudes toward leprosy.

Following the 1991 WHA resolution, elimination of leprosy as a public health problem was successfully achieved at the global level by the end of 2000, and almost all countries, including Bangladesh, have replicated that success at the national level. Unfortunately, this does not mean that leprosy has disappeared.

Each year, around 200,000 new cases of leprosy are reported to the WHO, with Bangladesh accounting for over 3,600 cases in 2019, the fifth highest total.

There are still endemic areas and scattered hot spots of leprosy in many countries and there are some 3-4 million people living with visible impairments or deformities due to leprosy. Meanwhile, the persistence of stigma and discrimination can inhibit people from seeking treatment.

Since becoming the World Health Organization (WHO) Goodwill Ambassador for Leprosy Elimination in 2001, I have visited some 120 countries and observed the situation on the ground for myself. This has led me to think of leprosy in terms of a motorcycle: the front wheel symbolises curing the disease, and the back wheel represents eliminating discrimination. Unless both wheels are turning together, we will not reach our ultimate goal of zero leprosy.

As regards the front wheel, the WHO recently published its new Global Leprosy Strategy 2021-2030, which includes the ambitious targets of zero leprosy patients in 120 countries and a 70 percent decrease in new cases detected globally by 2030. In order to achieve these targets, there will need to be commitments and financial support from governments; this is not something the WHO can achieve on its own.

Concerning the rear wheel, I have worked hard to have leprosy recognised internationally as a human rights issue since the early 2000s when I first approached the Office of the UN High Commissioner for Human Rights. One result has been the resolution on elimination of discrimination against persons affected by leprosy and their family members, adopted by the UN General Assembly in 2010. But the real measure of success will be when principles and guidelines accompanying the resolution are fully implemented.

Over the past half-century, the dedication of a great many people has brought us a step closer to a world without leprosy, but our work is not yet done. In Bangladesh, the government has committed to achieving zero disability, zero discrimination and zero disease due to leprosy by 2030, following a National Leprosy Conference held in 2019, attended by Prime Minister Sheikh Hasina.

Especially now, during the Covid-19 pandemic, it is important that we do not lose sight of leprosy and that we continue to build on the progress we have made. Recalling how countries decided 30 years ago to unite in a fight against leprosy, let’s redouble our efforts to vanquish a disease that has been a common enemy of humankind for millennia.

Yohei Sasakawa, WHO Goodwill Ambassador for Leprosy Elimination.

This story was originally published by The Daily Star, Bangladesh

By Sam Olukoya
LAGOS, Nigeria, May 12 2021 (IPS)

People affected by leprosy, also known as Hansen’s disease, are often stigmatised. In countries like Nigeria, many of them end up as beggars due to the psycho- and socio-economic problems they face. The COVID-19 pandemic has brought fresh challenges for them and life is getting increasingly difficult. Sam Olukoya in Lagos takes a look at how people affected by leprosy in Nigeria are faring in the face of the COVID-19 pandemic.

SCRIPT

SONG:

NARRATION: In Nigeria, many people affected by leprosy survive as beggars. They usually sing songs like this as they solicit for assistance. One of them, Musa Gambo, says life has changed for the worse for them since the outbreak of the COVID-19 pandemic.

GAMBO: We have been facing problems since the Corona pandemic started. The price of food has gone up, everything is expensive, yet we cannot do any job. The money people give us as alms now is much lower than what they used to give us in the past. Some people will give you nothing and just walk away because they are facing difficult times. Some people are even angry and irritated when you beg them for money because life is tough for them. They will ask why you are disturbing them for money as if you are not aware that there is corona.

SOUND OF BUCKETS

NARRATION: Musa Ibrahim arranges buckets which he uses to store water. Ibrahim who is affected by leprosy says as beggars they often face arrest.

IBRAHIM: The lockdown has been lifted and people can move about freely, but for us if we go out they will arrest us and they will not release us. They came even yesterday. It is difficult for us to go and beg for alms g because they will arrest us. Our crime is that we are begging, they said they don’t want beggars, for us that is the only way we can get money to sustain ourselves. If we cannot beg for money honestly it will be difficult to feed. They did not give us jobs yet they are stopping us from looking for money, that is not good.

NARRATION: Audu Garba says people like him who are affected by leprosy have to survive as beggars due to the discrimination they face.

GARBA: Because we have leprosy, people will not patronise us if we set up a business due to the stigma. Here in Lagos anyone with leprosy who set up a business is deceiving himself because the business will not succeed. If I have money my business idea will be breeding and selling livestocks. If I have the resources for this business I will cease to be a beggar.  But I don’t have the resources. I cannot farm, so if I don’t live as a beggar what else should I do? I cannot get loan from the bank, who will give me loan in the bank, when I don’t have a farm or a house that I can use as collateral to get a loan?

NARRATION: Garba says the pandemic has increased the stigma against people affected by leprosy as many Nigerians believe they are infected by the Corona virus.

GARBA: We have been facing discrimination in the past and it has continued. It is now double discrimination with corona, because now they see us as the people who actually have Corona. I swear. It saddens me when they say we have corona. Till now they go about with that impression that we have Corona. When some people even pity you and want to give you money, they will throw it at you from a distance. Yes, it is because of the stigma that we have Corona that is why they treat us this way. They discriminate against us because they don’t regard us as normal human beings.

NARRATION: Lagos based medical doctor, Kunle Ogunyemi, says once treated, people who had Hansen’s disease are not contagious and can live a fairly normal life. He said misconceptions about the disease make many people think they are still contagious.

OGUNYEMI: Ordinarily when they are fully cured, they are not infectious. Perception of the public or even some health care workers unfortunately does not accommodate them at all because knowledge about it, it is not a common disease at all and because not too many people know, the tendency is still to keep them at arms length.

SONG:

NARRATION: With songs like this, people affected by leprosy often appeal to society to respect the rights of vulnerable people like them. But Garba says so strong is the discrimination against them that he is not optimistic that they will get the COVID-19 vaccine which is supposed to be freely available to Nigerians.

GARBA: We are happy that there is vaccine, but it is not meant for us. If the populace are vaccinated we shall thank God, but for us, it is not a priority. If they look for us we shall take the vaccine since everyone ought to have it, but if they don’t look for us, we shall not force ourselves to get it, it will be difficult for us to get the vaccine. Take the newly introduced national identification card, I don’t have one, because they asked for money, I don’t have money. The situation with the vaccine will be similar, they will ask for money but we don’t have money.

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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:

Sattamma, a daily labourer in the Rangareddy district of southern India’s Telangana state, says that even though she no longer has Hansen’s Disease, she remains discriminated against because of it. Credit: Stella Paul/IPS

By Stella Paul
HYDERABAD, India , Jan 23 2020 (IPS)

Fifteen years ago, Sattamma – a daily labourer in the Rangareddy district of southern India’s Telangana state – was abandoned by her husband after she was diagnosed with Hansen’s Disease.

Last October, while her neighbours were celebrating Diwali, Sattamma was homeless again as her landlord threw her out of the house after he discovered her past disease.

“My husband said I was a danger to him. But it was so many years ago (I had leprosy). I have been cured and living without any scar or pain. Why would anyone still treat me like this?” asks a visibly-perplexed Sattamma who says finding work has become harder since her eviction.

Discrimination against leprosy, however, isn’t experienced by a scattered few: the world over, men and women affected by leprosy are increasingly being subjected to stigma and bias regardless of their current health status.

In Nigeria, Lilibeth Nwakaego runs a non-profit organisation called Leprosy Disability Initiative, which provides legal and emotional support to the leprosy-affected people who have been stigmatised by society. According to her, the roots of stigma are so deep, it often frustrates even the most determined.

“As a lawyer and a woman, I can tell you this: leprosy-affected people like me are sent straight to hell once the community discovers about our sickness. It is meaningless and cruel but it exists and it is continuously increasing,” she tells IPS.

“The discrimination towards leprosy-affected is like leprosy itself: you fight it in one place and end it, but it surfaces in another.”

Re-emergence of an “eliminated” challenge

In 1993, multi-drug therapy (MDT) was introduced worldwide which has since reduced the prevalence of Hansen’s Disease by more than 99 percent. As a result, most countries announced they had eliminated the disease – this is a target of less than one case per 10,000 people as set by the World Health Organisation.

However, almost a decade later, new cases are continually surfacing globally, including in India, Brazil and Indonesia – the world’s three-most affected countries. 

• One person is diagnosed with leprosy roughly every four minutes in India, accounting for 60 percent of all new leprosy cases annually.
• Brazil, which has the second-highest burden of leprosy, has reported over 28,000 new cases annually.
• Indonesia with 16,826 new cases being reported each year, is third on the list.

However, each of these countries has reported high levels of stigma and discrimination – experienced by leprosy-affected people.

Legal and constitutional discrimination

In the last decade, India has also seen a rise in several potentially deadly diseases, including tuberculosis, heart disease, diabetes and diarrhoea. Compared to this, the number of leprosy cases is truly minuscule. Yet the social stigma and bias against the leprosy-affected is extremely high, courtesy of a large number of laws which allow and aid such acts, says Vagavathalli Narsappa – head of Association for Leprosy-Affected (APAL) – a pan-Indian organisation based in Hyderabad.

“The irony is that when it comes to stigma, the law is truly equal for all. For example, a leprosy-affected person cannot contest a local election, or, can be forcibly removed from office even after winning. It is as if you have committed a violent crime…This is even more ridiculous because such a person can contest state/national elections,” Narsappa tells IPS.

The government seems to be well-aware of  the discriminatory laws as well. In August 2019, India’s health minister Harsh Vardhan wrote to his colleagues in the law and justice, and social justice and empowerment ministries seeking the amendment of 108 laws that discriminate against persons affected by Hansen’s Disease.

“Even though the disease is now fully curable, it is disturbing to learn that there still exist 108 discriminatory laws against persons affected by leprosy, including three Union and 105 state laws. The National Leprosy Eradication Programme (NLEP) has achieved enormous success in leprosy control, particularly in the last four decades,” the health minister said in a letter shared with the media.

In July 2018, the Supreme Court of India had also directed the government to end 119 laws that it considered discriminatory. The court also directed the government to run a countrywide awareness drive on Hansen’s Disease.

However, little has been done since then, says Narsappa.

“The only big step that we saw is repealing the law which allowed divorce on the ground of leprosy,” he tells IPS, referring to the Elimination of Discrimination against Persons Affected by Leprosy (EDPAL) Bill – commonly known as the Divorce Bill — which was passed by India’s parliament in February 2019.

• In Brazil, similar demands have been raised to provide equal rights and treatment of leprosy-affected people especially of children who are often denied schooling.
• However, the country has no discriminatory laws as of now, according to Alicia Cruz – a United Nations expert who visited the country in 2019.

In Indonesia, the social discrimination has been discouraging the leprosy-affected from seeking treatment, says Al Qadri, deputy head of the Leprosy Association (Permata), an NGO that works for the welfare of leprosy patients.

“Because of embarrassment and  fear of stigma, those who are suffering from the disease do not go to the health clinics in time. They hide until its too late and the disease has taken an advanced form,” Qadri says.

There is hope in hopelessness

In India, a portion of government jobs are reserved for persons with disabilities. However, leprosy-affected people who have disabilities are often denied the benefits of this policy. Narsappa of APAL recalls how he was denied a job with the local government.

“After being rejected three times, I visited the District Collector (a senior government official) whose office had announced a vacancy. But instead of hearing my plea, he told me, ‘you can still walk and move, why do you think you deserve this job?’ From his tone, I could sense that my past (disease) was the real issue,” says Narsappa who is now actively advocating for leprosy-affected people’s right to employment and old age pension – another government program which often fails to reach the leprosy-affected.

A strong ground movement is also in the making for calling for the land rights of the leprosy-affected.

Maya Ranvare, an executive member of APAL who is leading the movement in Maharashtra state of western India, says that though there are over 70 colonies across India, few of the residents have an individual ownership.

“Our cities are expanding so fast! We worry that tomorrow, our land will be grabbed by illegal real estate developers and we will not be able to do anything,” Ranavare tells IPS.

Activists like Ranavare are now approaching the state human rights commission to instruct the government to give land ownership certificates to leprosy colony residents. Last month, in Ratnagiri – a neighbouring district, the government started the process after being instructed by the commission, she reveals.

“Our fight today is the fight for our basic rights to equality, employment and land. But we also need a set of common, fair laws that makes all of these possible,” says Ranavare.

Excerpt:

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.

Nippon Foundation President Yohei Sasakawa and Socorro Gross, Pan American Health Organisation representative in Brazil, hold a press conference in Brasilia at the end of a 10-day visit to this country by the Japanese activist who is also World Health Organisation Goodwill Ambassador for Leprosy Elimination. Credit: Mario Osava/IPS

By Mario Osava
BRASILIA, Jul 11 2019 (IPS)

“The ambulance team refused to take my sick friend to the hospital because he had had Hanseniasis years before,” said Yohei Sasakawa, president of the Nippon Foundation, at one of the meetings held during his Jul. 1-10 visit to Brazil.

His friend was completely cured and had no visible effects of the disease, but in a small town everyone knows everything about their neighbours, he said.

This didn’t happen in a poor country, but in the U.S. state of Texas, only about 50 years ago, Sasakawa pointed out to underline the damage caused by the discrimination suffered by people affected by Hansen’s Disease, better known as leprosy, as well as those who have already been cured, and their families.

“The disease is curable, its social damage is not,” he said during a meeting with lawmaker Helder Salomão, chair of the Human Rights Commission in Brazil’s lower house of Congress, to ask for support in the fight against Hanseniasis, the official medical name for the disease in Brazil, where the use of the term leprosy has been banned because of the stereotypes and stigma surrounding it.

The highlight of the mission of Sasakawa, who is also a World Health Organisation (WHO) Goodwill Ambassador for Leprosy Elimination, was a meeting on Monday Jul. 8 with President Jair Bolsonaro, who posted a message on Facebook during the meeting, which had nearly 700,000 hits as of Thursday Jul. 11.

In the 13-and-a-half minute video, Bolsonaro, Sasakawa, Health Minister Luiz Mandetta and Women, Family and Human Rights Minister Damares Alves issued a call to the authorities, organisations and society as a whole to work together to eradicate the disease caused by the Mycobacterium Leprae bacillus.

A preliminary agreement emerged from the dialogues held by the Japanese activist with members of the different branches of power in Brasilia, to hold a national meeting in 2020 to step up the fight against Hanseniasis and the discrimination and stigma faced by those affected by it and their families.

The idea is a conference with a political dimension, with the participation of national authorities, state governors and mayors, as well as a technical dimension, said Carmelita Ribeiro Coriolano, coordinator of the Health Ministry’s Hanseniasis Programme. The Tokyo-based Nippon Foundation will sponsor the event.

Brazil has the second highest incidence of Hansen’s Disease in the world, with 26.875 new cases in 2017, accounting for 12.75 percent of the world total, according to WHO. Only India has more new cases.

The government established a National Strategy to Combat Hanseniasis, for the period 2019-2022, in line with the global strategy outlined by the WHO in 2016.

Brazilian Minister of Women, Family and Human Rights Damares Alves (L) receives a gift from Yohei Sasakawa, president of the Nippon Foundation, at the beginning of a meeting in Brasilia, in which the minister promised to strengthen assistance to those affected by Hansen’s Disease, including the payment of compensation to patients who were isolated in leprosariums or leper colonies in the past. Credit: Mario Osava/IPS

Extensive training of the different actors involved in the treatment of the disease and plans at the state and municipal levels, tailored to local conditions, guide the efforts against Hansen’s Disease, focusing particularly on reducing cases that cause serious physical damage to children and on eliminating stigma and discrimination.

Before his visit to Brasilia, Sasakawa, who has already come to Brazil more than 10 times as part of his mission against Hansen’s Disease, toured the states of Pará and Maranhão to discuss with regional and municipal authorities the obstacles and the advances made, in two of the regions with the highest prevalence rate.

“In Brazil there is no lack of courses and training; the health professionals are sensitive and give special attention to Hanseniasis,” said Faustino Pinto, national coordinator of the Movement for the Reintegration of People Affected by Hanseniasis (MORHAN), who accompanied the Nippon Foundation delegation in Brasilia.

“Promoting early diagnosis, to avoid serious physical damage, and providing better information to the public and physical rehabilitation to ensure a better working life for patients” are the most necessary measures, he told IPS.

Pinto’s case illustrates the shortcomings in the health services. He was not diagnosed as being affected with Hansen’s Disease until the age of 18, nine years after he felt the first symptoms. It took five years of treatment to cure him, and he has serious damage to his hands and joints.

His personal plight and the defence of the rights of the ill, former patients and their families were outlined in his Jun. 27 presentation in Geneva, during a special meeting on the disease, parallel to the 41st session of the Human Rights Council, the highest organ of the Office of the United Nations High Commissioner for Human Rights.

Pinto is an eloquent advocate of the use of Hanseniasis or Hansen’s Disease, rather than leprosy, a term historically burdened with religious prejudice and stigma, which aggravates the suffering of patients and their families, but continues to be used by WHO, for example.

Yohei Sasakawa (2nd-L), president of the Nippon Foundation, accompanied by two members of his delegation, took part in a meeting with Congressman Helder Salomão (C), chair of the Human Rights Commission of the Brazilian Chamber of Deputies, who pledged to support initiatives to eliminate leprosy in his country. Faustino Pinto (2nd-R), national coordinator of the Movement for the Reintegration of Persons Affected by Hanseniasis (MORHAN), also participated. Credit: Mario Osava/IPS

Discrimination against people with the disease dates back to biblical times, when it was seen as a punishment from God, said Sasakawa during his meeting with Minister Damares Alves, a Baptist preacher who describes herself as “extremely Christian”.

In India there are 114 laws that discriminate against current or former Hansen’s Disease patients, banning them from public transport or public places, among other “absurdities”, he said.

In India, they argue that these are laws that are no longer applied, which justifies even less that they remain formally in force, he maintained during his meetings in Brasilia to which IPS had access.

Prejudice and misinformation not only subject those affected by the disease to exclusion and unnecessary suffering, but also make it difficult to eradicate the disease by keeping patients from seeking medical care, activists warn.

His over 40-year battle against Hansen’s Disease has led Sasakawa to the conclusion that it is crucial to fight against the stigma which is still rife in society.

He pressed the United Nations General Assembly to adopt in 2010 the Resolution for the Elimination of Discrimination against Persons Affected by Leprosy and their Families.

He said these attitudes and beliefs no longer make sense in the light of science, but persist nonetheless.

Treatment making isolation for patients unnecessary in order to avoid contagion has been available since the 1940s, but forced isolation in leprosariums and leper colonies officially continued in a number of countries for decades.

In Brazil, forced segregation officially lasted until 1976 and in practice until the following decade.

With multi-drug treatment or polychemotherapy, introduced in Brazil in 1982, the cure became faster and more effective.

Information is key to overcoming the problems surrounding this disease, according to Socorro Gross, the Pan American Health Organisation (PAHO) representative in Brazil who also held meetings with the Nippon Foundation delegation.

“Communication is essential, the media has a decisive role to play” to ward off atavistic fears and to clarify that there is a sure cure for Hansen’s Disease, that it is not very contagious and that it ceases to be so shortly after a patient begins to receive treatment, Gross, a Costa Rican doctor with more than 30 years of experience with PAHO in several Latin American countries, told IPS.

Yohei Sasakawa, president of the Nippon Foundation, is interviewed by IPS in the Brazilian capital, where he concluded a tour of the country aimed at promoting the elimination of Hansen's Disease, better known as leprosy, and also the stigma that make it the "disease of silence.” Credit: Mario Osava/IPS

By Mario Osava
BRASILIA, Jul 10 2019 (IPS)

Yohei Sasakawa has dedicated half of his 80 years of life to combating the “disease of silence” and is still fighting the battle, as president of the Nippon Foundation and World Health Organisation (WHO) goodwill ambassador for elimination of leprosy, formally known as Hansen’s Disease.

His current emphasis is on combating the discrimination, prejudice and stigma that aggravate the suffering of people with leprosy, their families and even those who have already been cured. They also stand in the way of treatment, because people with the disease keep silent out of fear of hostility, he told IPS in an interview in the Brazilian capital.“I travel around the world and speak out against the discrimination that marginalises those affected by the disease. But these are prejudices that have existed for 2,000 years; they cannot be overcome in two or three years. Many share my viewpoint and accompany me in the struggle. One day the discrimination will end. It is more difficult to cure the disease that plagues society than the illness itself. My effort is to hold a dialogue with presidents and ministers, people in positions of leadership, so that my message acquires political strength and can lead to a solution.”

Sasakawa visited Brazil Jul. 1 to 10, as part of his activism aimed at reducing the prevalence and social impacts of a disease stigmatised since biblical times. In Brasilia, he mobilised President Jair Bolsonaro, legislators and health and human rights officials to promote more intense efforts against the disease.

The idea of holding a national conference on Hansen’s Disease emerged from the meetings, with the political objective of disseminating knowledge and bolstering the disposition to eradicate prejudice, and the technical goal of improving strategies and efforts against the disease.

Brazil is second only to India with respect to the number of new infections diagnosed each year. The country implemented a National Strategy to Combat Hanseniasis from 2019 to 2022, with plans also at the level of municipalities and states, tailored to the specific local conditions.

The Tokyo-based Nippon Foundation is funding several projects and is preparing to support new initiatives in Brazil.

Brazil and Japan abolished the word leprosy from their medical terminology, due to the stigma surrounding it, and adopted the term Hanseniasis to refer to the disease caused by the Mycobacterium leprae bacillus. Sasakawa used this name during his interview with IPS, even though the WHO continues to employ the term leprosy.

IPS: Why did you choose as your mission the fight against Hansen’s Disease and the different kinds of harm it causes to patients and their families?

YOHEI SASAKAWA: It started with my father, the founder of the Nippon Foundation, who as a young man fell in love with a young woman who suddenly disappeared when she was taken far away and put in isolation. My father was appalled by the cruelty and, driven by a spirit of seeking justice, he started this movement. No one discussed the reason she was taken away, but I sincerely believe it was because she had Hanseniasis.

Later my father built hospitals in different places, including one in South Korea, where I accompanied him to the inauguration. On that occasion I noticed that my father touched the hands and legs of the patients, even though they had pus. He hugged them. That impressed me.

I was surprised for two reasons. It frightened me that my father so easily embraced people in those conditions. Besides, I wasn’t familiar with the disease yet. I saw people with a sick, unhealthy pallor. They were dead people who were still alive, the living dead, abandoned by their families.

I was filled with admiration for my father’s work and immediately decided that I should continue it.

IPS: What are the main difficulties in eradicating Hanseniasis?

YS: In general, when faced with a problem specialists and intellectuals come up with 10 reasons why it’s impossible to solve. I have the strong conviction that it is possible, and that’s why I address the problem in such a way that I can identify it and at the same time find a solution.

The people who find it difficult generally work in air-conditioned offices pushing around papers, studying the data. The most important thing is to have the firm conviction that the problem can be solved and then begin to take action.

The president of the Nippon Foundation, Yohei Sasakawa (C) is seen meeting with the president of Brazil, Jair Bolsonaro (L), in an IPS screen capture from the video that the president broadcast on Facebook to raise public awareness about the importance of eliminating Hansen’s Disease, better known as leprosy, and eradicating the prejudice faced by patients and their families. Credit: IPS

Since the 1980s more than 16 million people have been cured of Hansen’s Disease. Today, 200,000 patients a year are cured around the world.

IPS: What role do prejudice, stigma and discrimination play in the fight against this disease?

YS: That is a good question. After working for many years with the WHO, focusing mainly on curing the disease, I realised that many people who had already been cured could neither find work nor get married; they were still suffering the same conditions they faced when they were sick.

I concluded that Hanseniasis was like a two-wheeled motorcycle – the front one is the disease that can be cured and the back one is the prejudice, discrimination and stigma that surround it. If you don’t cure both wheels, no healing is possible.

In 2003, I submitted to the United Nations Commission on Human Rights a proposal to eliminate discrimination against Hanseniasis. After seven years of paperwork and procedures, the 193-member General Assembly unanimously approved a resolution to eradicate this problem that affects the carrier of the disease as well as those who have been cured, and their families.

But this does not mean that the problem has been solved, because prejudice and discrimination are the disease plaguing society.

People believe that Hanseniasis is a punishment from God, a curse, a hereditary evil. It’s hard to eradicate this judgment embedded in people’s minds. Even today there are many patients who have recovered and are totally healed, who cannot find a job or get married. In spite of the new laws, their conditions do not improve, because of the prejudice in people’s hearts.

In Japan, several generations of the family of someone who had the disease were unable to marry. This is no longer the case today.

That’s why I travel the world and speak out against the discrimination that marginalises those affected by the disease. But these are prejudices that have existed for 2,000 years; they cannot be overcome in two or three years.

Many share my viewpoint and accompany me in the struggle. One day the discrimination will end. It is more difficult to cure the disease that plagues society than the illness itself.

My effort is to hold a dialogue with presidents and ministers, people in positions of leadership, so that my message acquires political strength and can lead to a solution.

IPS: How did Japan manage to eradicate Hansen’s Disease?

YS: One way was the collective action of people who had the disease. Long-term media campaigns were conducted to spread knowledge about the disease. Movies, books and plays were also produced.

In Japan, Hanseniasis ceased to be the ‘disease of silence’. The nation apologised for the discrimination and compensated those affected. But in other countries, people affected by the disease have not yet come together to fight. Brazil, however, does have a very active movement.

IPS: As an example of what can be done, you cite Brazil’s Movement for the Reintegration of People Affected by Hanseniasis, MORHAN. Are there similar initiatives in other countries?

YS: Morhan really stands out as a model. Organisations have been formed by patients in India and Ethiopia, but they still have limited political influence. The Nippon Foundation encourages such movements.

IPS: You’ve visited Brazil more than 10 times. Have you seen any progress on this tour of the states of Pará and Maranhão, in the north, and in Brasilia?

YS: On that trip we couldn’t visit patients’ homes and talk to them, but we did see that the national, regional and local governments are motivated. We will be able to expand our activities here. In any country, if the highest-level leaders, such as presidents and prime ministers, take the initiative, solutions can be accelerated.

We agreed to organise a national meeting, promoted by the Health Ministry and sponsored by the Nippon Foundation, if possible with the participation of President Jair Bolsonaro, to bolster action against Hanseniasis.

We believe that this would generate a strong current to reduce the prevalence of Hanseniasis to zero and also to eliminate discrimination and prejudice. If this happens, my visit could be considered very successful.

IPS: What would you emphasise about the results of your visit?

YS: The message that President Bolsonaro spread directly to the population through Facebook during our meeting, with his view addressed to all politicians, to his team and and to all government officials on the need to eliminate the disease. I feel as if I have obtained the support of a million people who will work with us.

Excerpt:

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.

Marcus Samo, Assistant Secretary in the Federated States of Micronesia (FSM) Department of Health Services, is concerned that the country has been unable to reduce the prevalence of Hansen’s disease. Credit: Stella Paul/IPS

By Stella Paul
POHNPEI , Apr 8 2019 (IPS)

During his 22-year career in the health sector, Marcus Samo has seen the Federated States of Micronesia (FSM) suffer from an increased burden of disease while at the same time the resources to address them have either remained the same or decreased.
Samo is the Assistant Secretary in the country’s Department of Health Services, a post he has held for a decade. He has seen the rapid growth of both noncommunicable diseases (diabetes and heart ailments) and communicable diseases (tuberculosis and leprosy).

Micronesia, the Marshall Islands and Kiribati have among the highest rates of leprosy, also known as Hansen’s disease, in the world. But according to the World Health Organisation (WHO), Micronesia has the highest prevalence of Hansen’s disease in the Pacific.

And Samo considers the disease his country’s biggest health concern.
“We don’t seem to be reducing leprosy the way we should, so it is a big concern for us. We appreciate the way we are getting support, such as drugs,” Samo tells IPS.
Novartis, through the WHO, currently provides multidrug therapy or MDT free across the globe.
And this March, Samo met with a team from the Sasakawa Health Foundation/Nippon Foundation, led by the foundation’s CEO Takahiro Nanri. The team was in Pohnpei, the Micronesian capital, to understand the reasons for the high prevalence of Hansen’s disease in the country and to assess the national leprosy programme. The foundation’s team included Dr. Arturo Cunanan, a world expert on leprosy, who currently heads up the Culion Sanitarium and General Hospital in the Philippines.

In addition to philanthropic assistance, Micronesia, like the Marshall Islands, is dependent on financial assistance from the United States. This is provided under the Compact of Free Association Agreement, which, according to the U.S. Department of the Interior means “the U.S. provides financial assistance, defends the FSM’s territorial integrity, and provides uninhibited travel for FSM citizens to the U.S.” For the 2019 financial year, 65 million dollars in Compact Funding was allocated to the atoll nation.

Samo admits that ensuring healthcare to the approximate 105,000 people, who are scattered on 65 of the nation’s 607 islands, is a balancing act. Oftentimes his staff use the tuberculosis (TB) budget to provide care for Hansen’s disease patients. Also, with just one newspaper and one radio station in the country, his department has few tools of mass communication and depends heavily on social media to raise public awareness about leprosy.

The offices of the Department of Health Services in Pohnpei, Micronesia’s capital. Ensuring healthcare to the approximate 105,000 people, who are scattered on 65 of the nation’s 607 islands is an ongoing challenge. Credit: Stella Paul/IPS

Excerpts of the interview follow:
Inter Press Service (IPS): Other than the supply of drugs, in what other areas does FSM need the support of the international community?

Marcus Samo (MS): Beside drugs, one area where we need support is definitely transportation. To get to the islands, to give drugs to the patients is very difficult for us. So, transportation is one [need] and training is another.

IPS: What kind of training do you need?

MS: Training for physicians and clinicians on how to administer the drugs, how to deal with the complications of leprosy and extreme cases. Recently, one of our staff [received] some training in India and that is very useful.

IPS: Have you ever thought of building a treatment facility for those who might have serious cases of advanced leprosy?

MS: We haven’t really thought of it, but I think that is certainly something we will consider down the line. I am not sure if we have such extreme cases here, but only time will tell if we must do some serious thinking about it.

IPS: Is leprosy is a priority? Do you allocate enough fund for fighting the disease?

MS: As you know, Micronesia gets most of its resources from the US government through the Compact Fund. Most of our budget allocations come from there. But, just recently, our department has also started receiving some additional money which is raised by our own national government locally through revenue collections and some other smaller funds that we get from other governments. We call it the Legal Fund. We are distributing some of this money to our state health departments to provide care for all the diseases which are endemic here such as diabetes, TB and leprosy. That’s why I say leprosy is a priority for us.

IPS: So, for the annual budget of your department, the national government gives you money both from the Compact Fund and from various other funds?

MS: Yes

IPS: But your National Leprosy Programme (NLP) still doesn’t have any fund of its own and depends on TB programme’s budget. Is it correct?

MS: We are aware of it. But TB and Leprosy are now combined as a single, integrated service. Sometimes they do internal adjustments. But, as I said, we are looking forward to more external financial support. If we can get it, we can provide funding separately to the NLP.

IPS: What is the amount you allocate to states? Is this enough?

MS: I can’t give you a number yet, but it is not adequate. But, compared to what we had five years ago, it has increased a little and we just need to maintain it. Of course we are also working with our funders like [United States] on this.

IPS: How important is the role of media in eliminating leprosy and how do you collaborate with the media?

MS: The role of the media is very important especially in removing the stigma that is attached to leprosy. We don’t have a television channel here. We have a radio station and a newspaper who decide on their own content. We may consider [teaming] up with them to produce some content focused on leprosy like a panel discussion or a special interview with a visiting expert. But currently we are using media that we produce such as posters, brochures and leaflets.

IPS: Have you ever met a leprosy patient yourself?

MS: Only when I was a kid. Since then, I have not.

Excerpt:

Dexter, a 25-year-old fisherman from Pohnpei in the Federated States of Micronesia, received treatment for Hansen’s disease, also known as leprosy, for over a year. He has been cured of the disease. Credit: Stella Paul/IPS

By Stella Paul
POHNPEI, Apr 8 2019 (IPS)

It’s a good day for Dexter, a 25-year-old fisherman from Pohnpei in the Federated States of Micronesia. He’s just been told that he is cured of leprosy.
“I have been sitting at home for nearly a year now,” Dexter, who doesn’t want to reveal his last name, tells IPS. “But now I can finally return to my job,” he says with a smile.

However, not every patient in Pohnpei State may be as fortunate as Dexter. The region is grappling with a shortage of leprosy drugs. Multidrug therapy (MDT) is provided for free by Novartis, through the World Health Organisation (WHO) and distributed across the globe. But Pohnpei has to send through an application for new stock to the national government.

“We have not received any fresh supply of drugs this year, so we are giving what we have in our stock although they are now expired,” reveals Dr. Elizabeth Keller. She is the acting chief of Pohnpei State’s Department of Health Services and also heads the region’s leprosy programme.

Pohnpei State has the largest number of leprosy cases in the country—nearly 100 new cases are reported here every year. And Micronesia still remains one of three Pacific island nations, along with the Marshall Islands and Kiribati, that is yet to eliminate leprosy or Hansen’s disease. In fact, according to the WHO, Micronesia has the highest prevalence of Hansen’s disease in the entire Pacific.

But the news of the shortage in Pohnpei State appears to take many by surprise, including Mayleen Ekiek, who heads the country’s National Leprosy Programme (NLP).

“I am surprised to hear this. This should not happen. I don’t know why they have not received the fresh stock because the supply is made once the requisition is submitted to the government,” she comments.

But it is easy to see how Ekiek could be unaware of the situation.

Providing healthcare to the country’s estimated 105,000 people, who are scattered over 65 of the country’s 607 islands, is complicated. While the Micronesia’s four states receive their funding directly from the national government, they work independently and usually only communicate directly with the federal government.

“The Department of Health Services in each state provides medical and public health services through a hospital, community health centres and dispensaries. Each state system is autonomous,” states the WHO.
As state health departments are not mandated to report to the NLP, Ekiek is sometimes caught unaware by developments, such as the current drug shortage.

However, Keller says that her department has already asked for the fresh supply and hopes it would come soon. Meanwhile, she assures that the medicine will not cause any adverse effect on the patients’ health. “These may not work as effectively as fresh drugs, but they will not harm,” she says.

Dr Arturo Cunanan with a patient at a leprosy clinic in the Federated States of Micronesia. Cunanan, a world expert on Hansen’s disease, says that a review of Micronesia’s national leprosy programme is overdue. Credit: Stella Paul/IPS

And while there is also a mechanism to bring the various states in Micronesia together to collaborate their leprosy services, Ekiek says that without funding it would be hard to do.

“I also lead the national programme on [tuberculosis] TB and I often piggyback on the TB budget to visit our leprosy programmes in the state. But I cannot organise a meeting of the state leprosy workers because it would require about 40,000 dollars-which is too big of an amount to be extracted from another programme budget,” Ekiek explains.

Budgetary allocations aside, Micronesia also has the challenge of a lack of credible data. Clear, defined parameters of data can help paint an accurate picture of leprosy in the country, and also provide information about the exact number of new cases.

In addition, a database of all the people affected by leprosy, and those who are undergoing treatment, can be created to make the information easily accessible.

Because without credible data, there is currently no uniformity in the statistics provided by the national and the state programmes.
“We received 89 new cases in 2018. This year, between January and March, we have seen 35 news cases,” Keller informs.
But according to Ekiek, there were probably just 75 new cases in 2018.
“Honestly, we cannot be sure because we don’t have a clear database yet. We don’t have a trained data analyst or staff who is skilled to compile and visualise statistics,” she admits.

While the confusion among the different government agencies continues, some experts feel that it is because of a lack of coordination and that a review of the national leprosy programme is overdue.

“The national leprosy programme has not been reviewed for a long time, so we don’t know what is working and what is not. Maybe they need a complete overhaul of the system or maybe they just need some training in data, records and office management,” says Dr. Arturo Cunanan, a world leprosy expert and chief of Cullion Sanitarium and General Hospital in Philippines. Cunanan, who is also recipient of the Gandhi Peace Prize for his work with leprosy, was visiting Micronesia with the Sasakawa Health Foundation/Nippon Foundation to review the current progress in eliminating leprosy.

“But without that review of the current programme, a true need assessment is not practically possible,” Cunanan, who has trained several health department staff across Micronesia region, including Ekiek, says.

* Additional reporting and writing by Nalisha Adams in Johannesburg

Jack Niedenthal, the secretary of Health and Human Development in the Republic of Marshall Islands stands in front of the poster that records the dark past of the Pacific island nation and the need for good healthcare. Credit: Stella Paul/IPS

By Stella Paul
MAJURO, Apr 5 2019 (IPS)

In Jack Niedenthal’s office in Majuro, there is an ominous reminder of the dark history of the Marshall Islands—once the site for dozens of nuclear tests conducted by the United States between 1946 and 1962. But it also provides a strong message about the future of island nation.
“Given what the Marshall Islands has done for humankind, we deserve the best healthcare in the world,” reads a poster on his wall.

“What you see here is what I strongly believe,” says Niedenthal, the secretary of Health and Human Development here.

In fact, today the Pacific island nation’s main national income, aside from the sale of fishing rights to foreign firms, is the money the U.S. pays as compensation for conducting the nuclear tests through the Compact Trust Fund.

Many of those who live on the islands where the nuclear tests where conducted suffer from cancer. These cases are in addition to the high occurrences of tuberculosis (TB), diabetes and leprosy that the health authorities here have to address.

Niedenthal tells IPS that although the latter three diseases are not directly connected to the nuclear tests or radiation, the nation’s citizens, some 53,000, must be able to realise their right to good health and have the opportunity to live long lives. However, the resources to ensure that good healthcare is available to all remains limited.

So, Niedenthal is adopting practical measures by integrating services to provide care for people suffering from two of the country’s most endemic diseases, TB and leprosy. From the screening of citizens for potential new cases, to consultations with doctors and nurses, the integration is supposed to mean better and more accessible services. “It’s a small place. If tomorrow there is an epidemic, it will affect everyone. So, [an integrated] programme will help us be better prepared,” Niedenthal says.

The integration is a natural step in strengthening the healthcare sector here, but it should also include the sustained availability of services, say health experts. Without ensuring the latter, integration will neither result in significant improvement nor will it help eliminate the diseases, especially leprosy, says Dr. Arturo Cunanan, the head of the Culion Sanitarium and General Hospital in the Philippines and a world leprosy expert.

“Ideally, this is how it should be. Care for leprosy should be integrated with the general healthcare services. It is the only way to ensure the care is available at every level of the healthcare sector—right from the village to the city.
“If this can be done, a person who is affected, doesn’t have to travel far and wide to a specialised clinic or be dependent on a niche expert because every healthcare centre will have a person with some level of leprosy expertise. However, the two much go hand in hand because without sustained services and availability of that expertise, the integration cannot achieve anything,” Cunanan tells IPS.

Jefferson Barton, the Deputy Secretary of the Republic of Marshall Islands, says that the government considers leprosy elimination a high priority. Credit: Stella Paul/IPS

According to Cunanan, leprosy, is a “victim of its own success” meaning that due to the decreased number of cases, it is not a high priority with the governments anymore, even in countries were it is not yet eliminated.

The low priority is reflected in the low resource allocation, inefficiency in the management of the programme besides lack of facilities and skilled staff.

But while supplying integrated healthcare services promises to ease the management of the leprosy programme at an administrative level, it also can create scarcity of staff with specialised skills to treat leprosy. Sustainability, therefore, must be the key, Cunanan explains.

But Jefferson Barton, Deputy Chief Secretary of Republic of Marshall Islands (RMI), says that the government considers leprosy elimination a high priority.
“Health and education are our top priorities and even in health, we are focusing on educating the Marshallese people, especially the children, about the biggest health issues,” Barton tells IPS.

He, however, also assures that the country is willing to collaborate more with international experts, and donors such as the Sasakawa Health Foundation and its parent body the Nippon Foundation, to ensure better healthcare in RMI.
Globally, the treatment of leprosy is free. Manufactured and donated by Novartis, multidrug therapy or MDT, is distributed through the World Health Organisation.

But access to other services such as information about the disease, and credible, accurate and cleaned data on leprosy and TB is less than adequate—a fact that Niedenthal admits. He, however, believes that with support from the international community the country can overcome these challenges and ensure sustained healthcare for all.

“A lot of Marshallese travel and work abroad. If they carry a disease, it will affect people there. So, when you give us money to control the disease here, you are investing in your own well-being,” Niedenthal says.

Dr Ken Jetton (left) and Dr Arturo Cunanan (centre) with a patient who has been cured of leprosy in the Majuro leprosy clinic in the capital of the Marshall Islands. The patient is now seeking further help due to post-treatment complexities. Credit: Stella Paul/IPS

By Stella Paul
MAJURO, Apr 4 2019 (IPS)

It’s a Friday morning and Dr. Ken Jetton, the only doctor who treats leprosy in Majuro, the capital of the Marshall Islands, is seeing a patient recently cured of the disease.
David, 32, has received multidrug therapy (MDT) treatment for a year already. But he is back in the doctor’s office because of a reversal reaction that has occurred.

David, who asks to be referred to only by his first name to protect his privacy, has a stiffness in his fingers. A carpenter by profession, the stiffness is causing David greater financial loss than leprosy did as he cannot hold the tools of his trade in his hand any longer.

“This is the kind of patient I typically attend to…people who have been cured of leprosy, but have physical disability due to reversal reaction to the treatment,” Jetton tells IPS.

According to authors Francisco Vega-Lopez and Sara Ritchie in ‘Manson’s Tropical Infectious Diseases’, reversal reaction is one of two distinct reactions that occur after becoming infected by the bacterium that causes Hansen’s disease, also known as leprosy.

“Reversal reactions may cause acute inflammation causing rapid loss of nerve function and require prompt initiation of treatment with oral steroids,” the authors note. They also note that this reaction can occur before, during or after treatment.

Dr. Arturo Cunanan, a world expert on Hansen’s disease, tells IPS that almost everyone shows some symptom of reversal reaction. However, the degree to which it presents varies from person to person. Those who are diagnosed and treated late have more visible signs of disability than those who were diagnosed and began treatment early.

Resource crunch limiting services
But Jetton tells IPS that he is restricted by a lack of resources and unable to reach out to other patients who, like David, need his services as a doctor.

“It is at this stage that they need me even more because they are puzzled by this [disability] and they also suffer financially. But I cannot see all of them, especially those living in the outer islands,” Jetton explains.
The physician is based in Majuro, the capital of the island nation. But Marshall Islands has 28 other atolls, where there are many active cases of leprosy reported.

But while some of these islands are a short boat ride away, the others are not so easily reachable.
“There is a car for our office use but I do not get an allowance to buy petrol for the car. Who will pay for the boat and the visits to the outer islands?” Jetton asks.

The resource crunch seems a direct result of the decreasing budgetary allocation for health in the country’s five-year funding plans. According to government records, in 2016 the Department of Health was allocated just over 25,000 dollars for its budget. However, this year the amount was 23,000 dollars.

Even for a tiny nation like the Marshall Islands, which has a population of just over 53,000, the health budget is considered small.
There are reportedly 65 healthcare centres across the various atolls. And according to Jetton there are only a handful of staff managing these.

While MDT is provided free by Novartis, through the World Health Organisation (WHO), there are no funds to staff a leprosy centre outside of Majuro. And the country records some 75 new cases of Hansen’s disease each year.

Dr. Ken Jetton, is the only doctor who treats leprosy in Majuro, the capital of the Marshall Islands. Credit: Stella Paul/IPS

New leadership, new approach
The constraints of working with an inadequate budget goes beyond fuel allowances, Jack Niedenthal, the Secretary of Health and Human Services in the Department of Health, tells IPS.
The biggest challenges of the department, says Niedenthal who took over the post early this year, are the lack of skills, capacity and infrastructure required to fight endemic diseases in the island nation.

“All the staff here are underpaid and overworked. They need skill-building training, and we need infrastructure, including new facilities to detect, diagnose and treat,” Niedenthal is heard saying during a meeting with a team from the Sasakawa Health Foundation led by its CEO, Takahiro Nanri.

There are several areas where the staff would benefit from further training. Data and record keeping is one of them, points out the secretary before making an appeal to international experts.
“Instead of inviting us abroad, visit us here and train our staff right here,” says Niedenthal. He was formerly the Secretary General of the country’s Red Cross Society and has a strong human rights approach to health.

Addressing the right audience
Niedenthal’s appeal could potentially bring some positive changes as Yohei Sasakawa, WHO Goodwill Ambassador for Leprosy Elimination, and chair of the Nippon Foundation, the parent body to the Sasakawa Health Foundation, is expected to visit Marshall Islands later this month.

Sasakawa, who is also Japan’s Ambassador for the Human Rights of People Affected by leprosy, and recent recipient of the Gandhi Peace Prize, is keen to understand the situation of combatting leprosy in the country and wants to extend his support to both those providing healthcare as well as those affected by leprosy here.

Jetton is positive that with the help of the foundation they will be able to improve their services to leprosy patients.
In the meantime he prescribes prednisolone, a drug generally used to treat reversal reactions, to David.

By Stella Paul
POHNPEI , Apr 3 2019 (IPS)

Elizabeth Keller is one of the most senior health officials in the Federated States of Micronesia (FSM).
She is the current acting chief of Public Health and also the head of the leprosy programme in the island nation’s capital of Pohnpei.
While Pohnpei has the largest number of leprosy cases in the country—nearly 100 new cases are reported here every year—Keller says that more new cases doesn’t necessarily present an alarming picture. She says that this should be viewed instead as a positive sign that the government’s activities are effective as more people are coming forward to be diagnosed than ever before.

During a recent visit of the Sasakawa Health Foundation/Nippon Foundation team to Micronesia’s Health Ministry, Keller talks about how her department is trying to protect the children of Pohnpei from leprosy, otherwise known as Hansen’s disease. She also talks of the unique perspective and strength that a female leader like her can bring to public health.

By Stella Paul
PHOHNPEI, Apr 2 2019 (IPS)

Mayleen Ekiek has been working with the Department of Health in the Federated States of Micronesia (FSM) for 12 years now. She is the head of the National Leprosy Programme in the Pacific island nation, which still remains one of three, along with the Marshall Islands and Kiribati, that is yet to eliminate leprosy.

Ekiek is responsible for ensuring the smooth running of the leprosy programme, as well as its success.

However, as Ekiek reveals in this interview, the absence of funding at a national level is one of the many roadblocks that she faces. In what seems to be a growing trend across the Micronesia region, FSM also has combined diseases to provide an integrated healthcare service. In this nation the treatment of both tuberculosis and leprosy is combined. However, while there are regular budgetary allocations for TB, there are none for leprosy, otherwise known as Hansen’s disease.

Despite the lack of funding, Ekiek has managed to keep the programme alive because of her sheer grit and passion for seeing a Leprosy-free Micronesia.

During a recent visit of the Sasakawa Health Foundation/Nippon Foundation team to Micronesia’s Health Ministry, Ekiek was on sick leave thanks to a fractured her leg. But to everyone’s surprise, Ekiek attended the meeting as she viewed it as a vital opportunity to seek the resources she needs for the leprosy programme. In the following interview, Ekiek talks about the financial and technical support needed achieve the programme’s goal of eliminating leprosy.

Meretha Pierson, a nurse in the leprosy clinic of Majuro, Marshall Islands, shows the medication to cure leprosy that are provided for free. Credit: Stella Paul/IPS

By Stella Paul
MAJURO, Mar 28 2019 (IPS)

Meretha Pierson has been a nurse for the past seven years, working in the government-run leprosy clinic in Majuro, the capital of the Marshall Islands. Her patients come in all ages, from different economic backgrounds and different professions. But, aside from their diagnosis, they all have something else in common: everyone wants to keep their illness a secret.

“Everyone requests me not to tell their neighbours. But women who are young, request me to not inform even their spouses. ‘Please don’t tell my husband,’ they say.  Sometimes, such a request is really hard to keep,” Pierson tells IPS.

Unwanted labels

There is a reason why Pierson, one of the handful of trained health workers who can detect a case of leprosy, also known as Hansen’s disease, can’t always promise full confidentiality to her patients.

Marshall Islands is believed to have 50 to 80 new cases of leprosy every year – a number that is very big for a population of only 60,000.

According to the World Health Organization (WHO), if more than 1 in every 10,000 people are affected by leprosy, then it should be considered as a disease that has not been eliminated.

Marshall Islands, as classified by the WHO, is therefore far from eliminating the disease.

But it is a classification that the government is eager to get rid of. In mid-2018, the government and the country’s Ministry of Health, ran a three-month long health screening campaign where over 27,000 citizens were tested for both leprosy and tuberculosis so that every affected person could receive treatment.

Concrete details on the number of leprosy cases are yet to be made public, but health workers like Pierson have already been instructed to keep a close eye on the patients who do not return to report on their health and who stop treatment in the middle of the course. And this is why it makes it really difficult to keep the promise of not alerting anyone to their illness as health workers are often compelled to seek out the patients.

Tracking these patients down and convincing them to restart their medication is both a necessity and a requirement that forms part of the government’s new campaign to curb the disease.

But as they do so, the requests for confidentiality becomes more frequent.

“They do not want us to go to their houses. So, we make phone calls, call them to a place outside of their homes and their neighbourhood and that’s where we do our counselling and advise them to return to the clinic for a check-up and continue the treatment. But it’s hard,” Pierson tells IPS.

The leprosy hotspots in the Marshall Islands. Credit: Stella Paul/IPS

Discrimination towards the caregiver

However, it is not only patients who are stigmatised on this island nation. Health workers themselves often bear the brunt themselves in a society where over 80 percent of the population are of Christian faith. Pierson, a Mormon, says that she has often faced discrimination from her neighbours and relatives who have suspected her of having leprosy.

“They think because I work in a leprosy clinic, I am carrying the germ or the disease myself. Some even ask why I do not give up this job. I have to always tell them that I am a nurse and I do not have leprosy myself. Even in the church, I get those stares,” she says. Fortunately, her husband is supportive and has never asked her to leave her job.

The hotspots

There are around 30 atolls that comprise the Marshall Islands and about a quarter of them are known as the hotspots of leprosy, according to Dr. Ken Jetton, the main physician at the country’s Department of Public Health.

Jetton officially diagnoses and confirms leprosy cases after Pierson detects a possible case and refers the patient to him.

He tells IPS that few of these ‘hotspots’ include the atolls of Kwajalein, Ailinglaplap, Mili, Arno, Wotje and Ebon. During the recent mass health screening, about 47 new cases were reported from these places.

The data sheet is yet to be complied, but once this is done, a proper plan will be drawn up to treat each patient until they are cured, Jetton reveals. The medication, Multi Drug Therapy (MDT), an oral medicine, is given free of charge in 6 packs for children and 12 packs for adults.

Understanding the gaps in country’s leprosy elimination campaign is one of the reasons why a team from the Sasakawa Health Foundation, led but its executive director Takahiro Nanri, as well as the world’s leading expert on leprosy, Dr. Arturo Cunanan, are travelling around the Marshall Islands and the Micronesia region. They have been meeting with senior government and health officials and leprosy experts and have visited clinics in Marshall Islands and the Federated State of Micronesia. Yohei Sasakawa, chair of the Nippon Foundation, the parent body for SMHF, is the WHO Goodwill Ambassador for Leprosy Elimination, and Japan’s Ambassador for the Human Rights of People Affected by leprosy. He will be touring the region in April to also assess the progress governments have made.

However, Pierson says that despite the screening and follow up activities, social stigma, especially towards the female leprosy patients might take longer than expected to fade away. This is because the island nation is still largely ignorant of the fact that leprosy as a curable disease, she explains.

Patience, therefore, is the key, she reminds. “We must be patient and  also have empathy for those who hide their diseases from others. They are vulnerable and scared of losing their dignity and we need to understand this,” says the nurse.

Dr. Arturo Cunanan is the Medical Centre Chief of Culion Sanitarium and General Hospital in the Philippines and one of the most experienced experts on Hansen’s disease, also known as leprosy, in the world today. Credit: Stella Paul/IPS

By Stella Paul
MAJURO, Mar 25 2019 (IPS)

His multiple awards and degrees aside, Dr. Arturo Cunanan is known as a people’s doctor; one who has profound belief in the human rights of every person affected by Hansen’s disease, commonly known as leprosy.
Considered one of the most experienced experts on the disease in the world today, Cunanan is currently the Medical Centre Chief of Culion Sanitarium and General Hospital in the Philippines. He is the first director of the hospital who is a direct descendant of people affected by Hansen’s disease who were isolated and segregated in Culion. The island of Culion, where the hospital is based, was originally set up as a leper colony at the turn of the 20th century, with the hospital been founded to solely treat patients with Hansen’s disease. However, from 1994, the Culion Sanitarium and General Hospital began general hospital services.

Currently in the Marshall Islands, in the northern Pacific, to review the national leprosy programme for the atoll nation, Cunanan tells IPS about the importance of viewing leprosy as an ordinary disease and how the failure to do so leads to continuous stigma.

“Integration of leprosy in the mainstream is important and it is also important to see that leprosy is treated as an ordinary disease and not as a special disease. Leprosy then becomes an ordinary disease. But if you treat leprosy as a special disease, then those with leprosy can become more stigmatised. People who have leprosy, can live a normal life. This is the message,” he tells IPS.

Recipient of several national and international awards, including the 2015 Gandhi Peace Prize, Cunanan earned his Masters in Public Health and Hospital Administration at the University of the Philippines and a Doctorate (PhD) in Health Systems and Policy at the National Institute of Health, University of Leeds as an International Ford Foundation Scholar.

He is also a consultant with the World Health Organisation and has provided his leadership in reviewing the National Leprosy programmes across the Micronesia region.

Cunanan is also the implementer of Sasakawa Health Foundation/Nippon Foundation’s projects in Culion and the Philippines that are related to leprosy and human rights, preservation of leprosy history, and various socio-economic projects that improve quality of life of people affected by leprosy and their families.
Excerpts of the interview follow:

Inter Press Service (IPS): Can you elaborate on how treating leprosy as a special disease leads to more stigmatisation and violates the rights of a person affected by it?

Arturo Cunanan (AC): Leprosy is one of the oldest known diseases in human history. It’s a biblical disease; there are instances of Jesus meeting men suffering from leprosy—men who were described as unclean and who became clean after Jesus touched them. The fear of leprosy and the social reaction to leprosy—both are are old.

In modern times, we have seen governments bring in laws that were built on the rule of detection and segregation. All of this only alienated a leprosy-affected person further.

But the truth of the day is: leprosy is curable. A person with leprosy can live a normal life. He can get treated—free of charge—for his disease. But, if we continue to treat leprosy as a special, extraordinary disease, it will perpetuate the alienation and it will also perpetuate the fear and stigma.

IPS: What happens when a leprosy-affected person faces stigma?

AC: First, they are socially, economically, and culturally isolated. People in their village, neighbourhood, society stop making contact with them and their families. But it ultimately violates their rights to respect and dignity.
Let me give you an example. In Culion, we get visitors. Some of them ask me if they can visit some leprosy-affected people. I tell them, look around you—everyone here has been affected by leprosy. But they look around and they do not want to believe what they see: normal people, with a normal physical appearance.

What these visitors are expecting to see is a person who has severe physical deformity, because in their minds, they [the visitors] have the image of a leprosy-affected person like that—a demonised image.
So, I tell them, these are people, no matter how severely they are affected by the disease—they are people like you and me, they have a right to a life of respect and dignity. How would you feel if someone looked at you in shock and fear, maybe disgust and gasp? This is what stigma and isolation leads to—the total denial of dignity.

IPS: How does this affect the treatment of leprosy?

AC: There are several reasons why a person affected by leprosy doesn’t seek treatment and social stigma is one of them. The person is afraid that once he has been confirmed as a person who has leprosy, the reaction of society will be severe towards him and his family.

They will not be included in any social or cultural events, nobody will visit them at their homes, and nobody will continue social relations with them. This will affect them economically also, they will not be employed like before. All of this discourages the person from going to the health centre and reporting his condition as he wants to avoid this social stigma.

IPS: You often say that Leprosy treatment needs to be integrated into the general health service system. What does that mean?

AC: This means that leprosy treatment can be made available at the local level. At every health centre, someone should be skilled enough to at least raise suspicion—if not fully detect—when he or she notices a possible case of leprosy.

For example, a person visits the health centre with a visible patch on his or her body which maybe numb. If a staff member at the health center can suspect that this could be a leprosy case, he could share this with the person and refer this person to a more skilled health worker to another clinic that specialises on leprosy. This way, a detection, confirmation and treatment could then begin.
But if the staff member is not capable of this, then he could simply give him an ointment for a skin rash and send him back home.

Especially in the islands, where people live a simple life, in close contact with the sun, sand and salt water, small skin marks like a patch would not usually make a person suspicious of his body or make him go to a leprosy clinic straightaway. But if even one person at the health centre can think that this might be leprosy, it could be a big help.

The third point is, even when the treatment begins, the person affected by leprosy may not take his medicines regularly or may not monitor his health conditions such as a sign of reactions etc on a regular basic and this could affect him adversely. But, if the staff at his local health center can communicate with him that he must report back if there is a reaction, he will do so.
So, it is key to have leprosy treatment integrated in the general health service, so there are skilled workers at every level of the health system.

Excerpt:

By Fabiana Frayssinet
RÍO DE JANEIRO, Mar 15 2019 (IPS)

“More than 50 countries in the world have discriminatory laws against people affected by Hansen’s disease. There is also a lot of discrimination in the public administration…and in society,” Alice Cruz, U.N. Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, said in this interview with IPS (in Spanish, with English subtitles).

The Portuguese-born expert is one of the special participants in the First Latin American and Caribbean Assembly of Organisations of People Affected by Hansen’s Disease – another name for leprosy – taking place in Rio de Janeiro, Brazil on Mar. 12-14.

Among the many examples of violations of the rights of those affected by the disease, Cruz cited the case of children who are expelled from school.

“People lose their jobs, there is discrimination in the community, they aren’t allowed to enter places of worship, etc, and there is discrimination in the family too,” added the Special Rapporteur in the Office of the United Nations High Commissioner for Human Rights.

Cruz pointed out that in 2010, the United Nations adopted “a human rights instrument to guarantee the rights of people affected by Hansen’s disease.”

According to this document, entitled “Draft principles and guidelines for the elimination of discrimination against persons affected by leprosy and their family members”, “States should enforce this instrument which covers all areas of affected persons and protects them from the violations mentioned,” she stressed.

This is the first time that a meeting has been held in Latin America dedicated to people affected by a disease that the World Health Organisation defines as infectious and chronic, caused by the bacillus Mycobacterium leprae and which mainly damages the skin, peripheral nerves, the mucosa of the upper respiratory tract, and the eyes.

Brazil, the host country, accounts for 95 percent of all cases in the Americas, with between 25,000 and 30,000 new diagnoses per year.

The regional meeting is an initiative of the Brazilian Movement for the Reintegration of People Affected by Hanseniasis and the Colombian Federation of Organisations of People Affected by Hanseniasis, with support from Brazil’s Health Ministry and the independent Nippon Foundation.

The region’s findings, together with the ones that emerged from similar assemblies in Asia and Africa, will be incorporated into the proposals for the World Congress on Leprosy, to be held in the Philippines in September.

Family photo of part of the 111 participants in the First Latin American and Caribbean Assembly of Organisations of People Affected by Hansen's Disease, on the steps of the Morisco Palace, the headquarters of the Oswaldo Cruz Foundation, which hosted the three-day meeting in Rio de Janeiro, Brazil. Credit: Mario Osava/IPS

By Mario Osava
RIO DE JANEIRO, Mar 14 2019 (IPS)

With the decision to found a regional coalition to promote rights and greater participation in national and international forums and decisions, the First Latin American and Caribbean Assembly of Organisations of People Affected by Hansen’s disease, popularly known – and stigmatised – as leprosy, came to an end.

The final session of the meeting, on Mar. 14, approved 40 of the 58 proposals presented by the 111 participants in three days of debates at the headquarters of the Oswaldo Cruz Foundation, a renowned scientific, medical and epidemiological research centre in Rio de Janeiro, Brazil.

José Picanço, 46, separated from his family and taken as a newborn to an orphanage because his parents were diagnosed with the disease in 1972, is one of those affected whose right to reparations remains unfulfilled. His three siblings are in the same situation.

When the family was reunited eight years later, the father turned his back on the children. The mother took them in, but died shortly afterwards. “I only lived with her, a saint, for five months,” Picanço recalled, barely managing to hold in his tears while giving testimony at the meeting.

“Humiliated as the children of lepers, suffering bullying and sexual harassment, many of the other children who were with me at the orphanage fell into drug abuse and alcoholism. It was a holocaust,” he said. “I hit my brother on the head, not knowing he was my own brother.”

“Of the 15,000 to 20,000 children separated from their families, more than 80 percent suffer from depression,” said Picanço in an interview with IPS, detailing some of the damage caused by the old rule of segregating the people then called “lepers”.

Mandatory isolation was widespread around the world, during different historical periods, and continues in some countries, even though it is known that the disease is curable and that patients cease to be contagious shortly after starting treatment.

Officially, Brazil abolished this practice in 1976, although it actually lasted 10 more years. Its direct victims were compensated starting in 2007, but their children were not. The activists gathered in Rio de Janeiro called for working for policies of reparations for children separated from their families.

Their complaints and proposals will be taken to the World Congress of associations of people affected by leprosy in Manila in September, which will also receive contributions from Africa and Asia, approved at recent similar regional assemblies.

“The goal is to form a large network of activists, to strengthen the movement” for the eradication of the disease and for care and reparations for those affected, said Kiyomi Takahashi of the independent Nippon Foundation, which is driving this international process of debate and cooperation.

The meeting in Rio de Janeiro fostered “a high-level dialogue, the result of Morhan and Felehansen’s long history of activities,” the Japanese expert told IPS, referring to the Movement for the Reintegration of People Affected by Hanseniasis (Morhan) in Brazil, and the National Federation of Entities Affected by Leprosy or Hansen’s Disease (Felehansen) in Colombia, the two organisers of the regional meeting.

Brazilian activists José Picanço (front) and Evelyne Leandro testified about how Hansen’s disease affected them during a Latin American and Caribbean meeting in Rio de Janeiro. Picanço was separated from his parents when they were diagnosed with leprosy when he was born in 1972 and was only reunited with them eight years later, shortly before his mother died. Leandro wrote a book about the difficulties of being diagnosed with the disease in Germany, where she lives. Credit: Mario Osava/IPS

“Morhan is my safe haven, to preach that separated children should be heard and have opportunities,” said Picanço, who explained that he joined the movement in 1992. Today he gives talks on the direct and indirect effects of the stigma still surrounding the disease, that is suffered by those affected and their families.

A blessing

The disease “was a blessing for me,” Isaias Dussan Weck, 50, the vice-president of the Colombian association Felehansen, told IPS without hesitation.

The diagnosis in 2006 destroyed him, he said. He lost the desire to work or to go out, he let his business of supplying cleaning products to companies go bankrupt, he even contemplated suicide. He ignored the stains on his body that did not prevent him from working and traveling, until they spread to his face, and he noticed that parts of his body were going numb.

He received treatment and was cured, left with only slight numbness in one arm and pains in his left leg.

But everything went badly for him until he was invited to meetings with other people affected by leprosy. “I began to understand, when I heard their testimonies and tears, why a young black girl with severe disabilities said that leprosy was a blessing to her,” Dussan said.

Activism for the benefit of those affected, against the stigma and the damage caused by the disease, in the association of the department of Huila, in southwestern Colombia, allowed him “to gain new meaning for life and to understand and practice love for my neighbour.”

“Helping and seeing a patient’s life improve is a wonderful emotion, and you help other people want to live,” he concluded. That new passion led him to Felehansen, where he took on leadership roles in the federation.

Irma Romero, 42, president of the Nuevo Amanecer Foundation in Barranquilla, on Colombia’s northern coast, had a similar experience. Her lengthy odyssey to a specialist’s diagnosis five years ago reveals the medical system’s shortcomings when it comes to detecting and treating the disease, also known as hanseniasis, which is still viewed by many as “a divine punishment.”

Romero stopped working in the textile industry due to disability and depression. “I couldn’t even walk,” she recalled. “I even denied God,” she told IPS.

Colombian activist Irma Romero, a native of the city of Barranquilla, sitting on the bus that transported the participants of the First Latin American and Caribbean Assembly of Organisations of People Affected by Hansen’s Disease, held Mar. 12-14 in Rio de Janeiro, Brazil. Credit: Mario Osava/IPS

Treatment using medicinal herbs, self-medication, rejection by relatives, attempts to separate her from her two children and abandonment by her husband all formed part of her suffering, which did not end with her treatment and cure.

The only permanent physical effects are numbness in her hands and feet, and sciatic nerve pain. But the discrimination continued.

“My life changed when I joined the association of affected people” four years ago, she said. “There I found people who had things in common with me, and a newfound love of my neighbour that I did not feel before,” said the activist, who became president of the Foundation the following year and reconciled with God.

Her foundation currently has 60 members. In Barranquilla she estimates that there are “about 200 affected people, but many more are hidden.”

The foundation is one of the 10 associations that make up Felehansen, eight of which call the disease hanseniasis or Hansen’s disease, one of which uses the term leprosy, and another of which refers to disabled people and is made up of patients who received a very late diagnosis.

The World Health Organisation (WHO) defines leprosy – the term it uses – as an infectious and chronic disease “transmitted by air through droplets from the nose and mouth, during close and frequent contacts with untreated cases.” It also specifies that leprosy is “one of the least infectious diseases.”

WHO reports that in 2017 there were 211,009 new cases worldwide, according to official data from 159 countries. That amounts to 0.3 cases per 10,000 inhabitants, which means it classifies as having been “eliminated,” according to WHO criteria.

Change of name: another recommendation

Proposing hanseniasis as the official name for the disease is one of the proposals that came out of the Latin American meeting, headed by Brazil, which has already adopted it, even prohibiting the mention of leprosy in the health system since 1995.

They are different concepts, because leprosy and leper have very negative connotations of “dirt, plague, impurities and divine punishment,” strengthened by numerous mentions with that moral burden in the Bible, argued Faustino Pinto, one of Morhan’s national coordinators.

But the activists from Colombia are not convinced. “People only know leprosy, they don’t know it’s Hanseniasis. To explain the issue to the population, you have to mention leprosy,” argued Romero.

“It will be necessary to educate the new generations about the concept of Hansen,” the Norwegian doctor Gerhard Hansen who discovered the bacillus that causes the disease, because adults are not likely to forget the stigma, said Dussan. “It’s harder to unlearn than to learn,” he added.

Another proposal of the Latin American Assembly is to extend the current Committee for Assistance to Brazilian Immigrants Affected by Hanseniasis to all Latin Americans and people from the Caribbean, in addition to extending it to other regions.

The reference point in this is Evelyne Leandro, a 37-year-old Brazilian who has lived in Germany for nine years and had a lot of difficulties getting diagnosed with the disease in a country where it is very rare and where very few doctors are familiar with it.

She was helped by her mother’s suspicion, awakened in Brazil by an outreach campaign on the disease, and by the Institutes of Tropical Medicine in Germany.

Her case and those of other immigrants in Europe are recounted in her book “The Living Death: the struggle with a long forgotten disease”.

In the panel on Hanseniasis versus Leprosy, the need to change the name of a disease surrounded by stigma with no scientific basis was debated, during the Latin American and Caribbean Assembly of Organisations of People Affected by Hansen's Disease, in Rio de Janeiro, Brazil. Credit: Fabiana Frayssinet/IPS

By Fabiana Frayssinet
RÍO DE JANEIRO, Mar 13 2019 (IPS)

Known scientifically as Hansen’s disease, leprosy carries a symbolic burden from the past that people affected by the disease and experts from around Latin America are fighting, including the terminology used.

The debate took place during a panel called Hanseniasis versus Leprosy, at the First Latin American and Caribbean Assembly of Organisations of People Affected by Hansen’s Disease, taking place in Rio de Janeiro, Brazil Mar. 12-14.

“People still use the term leprosy as an instrument of prejudice and discrimination, but that causes those affected to be afraid and to refrain from seeking medical attention and early treatment,” Francisco Faustino, a Brazilian who received treatment and was cured, told IPS."We're not going to change Hollywood movie concepts about lepers, nor the biblical stories. What we need to change are attitudes. It's as if we have to create a new concept, work on a new product. No bank would be called a 'bankrupt corporation' because everyone would be afraid to put money in that bank." -- Artur Custodio

The activist is a member of the Movement for the Reintegration of Persons Affected by Hanseniasis (MORHAN), which organised the conference together with the Colombian National Federation of Organisations of People Affected by Leprosy.

The meeting brings together international institutions and representatives from seven Latin American countries along with others from the industrialised North and is being held with the special support of the Brazilian Health Ministry and the independent Nippon Foundation, which is accompanying the process of regional meetings ahead of the World Congress on leprosy, to take place in the Philippines in September.

Brazil is the only country that has replaced the word leprosy in its health campaigns. Hansen’s disease or hanseniasis is often used as official terminology in most countries along with leprosy, while the World Health Organisation (WHO) uses Hansen’s disease as a second name but still mainly uses the term leprosy.

Regardless of what name is used, this country is the only one in the Americas that, according to official data, has failed to eliminate the disease, and is the one that accounts for 95 percent of the roughly 30,000 new diagnoses annually in Latin America.

Organisations such as the Brazilian Society of Hansenology say the number of unregistered cases could be four or five times that.

WHO considers the disease eliminated when there is less than one case detected per 10,000 inhabitants.

Faustino attributes this largely to the “prejudice still surrounding the term.” “We hope that the health community will change its stance and begin to treat it as a disease that has a diagnosis, treatment and a cure,” he said.

He continues to suffer stigma and discrimination even now that he is cured. “People still think it’s a disease that is spread merely by contact, by being near you,” he said.

According to the Pan-American Health Organisation (PAHO), “Leprosy is transmitted via droplets, from the nose and mouth. Prolonged, close contact with someone with untreated leprosy over many months is needed to catch the disease. You cannot get leprosy from casual contact with a person who has Hansen’s disease.”

PAHO and WHO explain that leprosy is caused by a bacillus, Mycobacterium leprae, also known as Hansen’s bacillus. It is infectious and chronic, multiplies very slowly and the incubation period is on average about five years, although some people do not show symptoms until 20 years later.

Francisco Faustino, who had leprosy and was completely cured, is a Brazilian activist who advocates replacing that term with hanseniasis, as he explained during a special panel at the Latin American and Caribbean Assembly of Organisations of People Affected by Hansen’s Disease, held in Rio de Janeiro, Brazil. Credit: Faiana Frayssinet/IPS

The disease mainly affects the skin, the peripheral nerves, the mucosa of the upper respiratory tract, and the eyes. If left untreated, it can lead to nerve damage, loss of feeling and paralysis of muscles in the hands, feet and face.

Artur Custodio, coordinator of Morhan, recalled that in ancient times leprosy was the name given to a group of diseases such as syphilis, elephantitis, vitiligo, and today’s hanseniasis.

“Biblical leprosy refers to scaly skin, dirtiness and sin, and hanseniasis is nothing like that. We have to give a new meaning to this disease in order to combat the stigma. The word is strong,” he told IPS.

“We’re not going to change Hollywood movie concepts about lepers, nor the biblical stories. What we need to change are attitudes. It’s as if we have to create a new concept, work on a new product. No bank would be called a ‘bankrupt corporation’ because everyone would be afraid to put money in that bank,” he said, by way of comparison.

Custodio said the debate on the name and the burden of its meaning is also occurring in countries such as Colombia, Japan and the United States.

“This is an important movement. Words do carry stigma. The word used for a name is a strategy,” he maintained.

Luciano Curi of the governmental Federal Institute of the Mineiro Triangle in Brazil did research for his doctoral degree on the history of ancient, medieval and modern leprosy that convinced him that the term did not refer to today’s hanseniasis.

“Treating it as a synonym, in addition to lacking a historical and scientific basis, is very dangerous. The leper of the ancient and medieval world was seen from a religious foundation, and was associated with the impure. And hanseniasis is seen from a medical point of view. The first medical works date back to the 19th century, when the disease began to be understood scientifically,” he told IPS.

The figure of the leper, he said, existed in several ancient populations of the region of Mesopotamia or Egypt, and also among the Hebrews, and they were seen as having “some kind of spiritual pollution,” while priests were instructed to expel them.

In Brazil and other Latin American countries, this definition led them from exclusion to isolation, in leper colonies isolated from everyone, including their families, until the mid-twentieth century.

According to Curi the “change of terminology is urgently necessary.” He noted that Brazil was a pioneer in changing other terminologies. “We don’t say ‘madness’ any more, we say ‘mental illness’, we no longer use the word ‘plague’. That effort, at a worldwide level, is important. The name is not a minor issue,” he argued.

Jorge Domínguez, a representative of Peru’s Health Ministry, also told IPS that the name “leprosy” does not help bring patients in for consultations in health clinics.

During his 10 years working as regional coordinator of Hansen’s disease in the province of Alto Amazonas, bordering Ecuador, he witnessed numerous cases of people “hiding” from the health authorities for fear of being sent to the “leprosarium”, as some Latin American countries called these now-abolished institutions, some of which were virtually citadels.

“It was just like during the times of Christ, when lepers were banished and isolated. The same thing happened in the jungle. When I started to work, I went to visit once and there was a person who had leprosy and was shunned by his own family. They had made him a room and passed his food to him under the door,” said Domínguez, a nurse by profession.

“People’s lack of knowledge about the disease was very great,” he said.

Domínguez pointed out that in their health network they began to work on “the issue of stigma and rejection,” training doctors and nurses mainly “because there were even some who hid when they saw a patient with leprosy.”

That campaign reduced the number of reported cases of leprosy in his region from 35 or 45 a year, to between eight and 10 today.

“No matter how much awareness-raising we have done through the media, many people still get scared. Changing the terminology would help people avoid discrimination,” he said.

But above and beyond the question of terminology, Dominguez believes that research on a disease about which very little is known should be strengthened.

“Why does it affect some people more than others? Why are there so many cases in Brazil and we have so few of them, and people living along the border don’t get it?” he wondered.

“It is also important to strengthen communication, and information for the public. The treatment for Hanseniasis, which lasts six months to a year, is free, the disease is curable, and even people who already have suffered damage can mitigate it,” Custodio concluded.

By Stella Paul
MANILA, Mar 5 2019 (IPS)

As the Executive Director of Sasakawa Memorial Health Foundation (SMHF), Takahiro Nanri has been working on the issue of leprosy since 2014. Over the past few years, he has traveled across the world visiting the large number of leprosy projects that SMHF has been supporting and meeting dozens of organisations led by leprosy-affected people.
In the past few decades the global fight against leprosy intensified which brought down the number of active cases drastically. As a result, leprosy is now officially eliminated in most countries, but its is still not completely eradicated. So, the word is now at ‘last mile’ to a leprosy-free world which is often described as the hardest part of the journey.

The reasons are many: hidden cases that are unreported and untreated and remain at risk of transmitting to others, insufficient budget allocated by the governments as they feel leprosy no longer needs to be a priority, lack of coordination among organisations working on leprosy and so on.

In this video, Nanri shares his views on how can this last mile journey can be overcome.
There is an urgent need for a coordinated effort to acknowledge that leprosy is still a reality, he says, before promising that SMHF and its parent organisation the Nippon Foundation, are ready to play the role of catalyst to this new, heightened level of co-ordination.

Alice Cruz is the United Nations Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, says divorce on the grounds of leprosy, allowed by laws or not, is a prevailing reality. Credit: U.N. Photo / Jean-Marc Ferré

By Stella Paul
MANILA, Mar 5 2019 (IPS)

Discrimination against women who are affected by leprosy or Hansen’s Disease is a harsh reality, says Alice Cruz is the United Nations Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members.

“Divorce on the grounds of leprosy, allowed by laws or not, is a prevailing reality. In settings where women are not economically independent, it can lead to the feminisation of poverty, throwing too many women affected by leprosy into begging or even prostituting,” says Cruz, who was speaking via audio link at Regional Assembly of Organisations of People Affected by Leprosy in Asia that was held in Manila, Philippines. The Sasakawa Memorial  Health Foundation/the Nippon Foundation (TNF) which supports leprosy projects across the world sponsored the meeting.

A professor at the Law School of University Andina Simon Boliver in Ecuador, Cruz has extensive knowledge of the social stigma and discrimination faced by the people who are affected by leprosy which also amount to the violation of their human rights.

In an interview to IPS, Cruz speaks of the layers and levels of stigma that men, women and children of leprosy-affected people face and how the U.N. has been trying to end it. Finally, she lists the simple ways that every ordinary person can contribute to end the stigma that people living with leprosy face and how to help them become integral to society. Excerpts of the interview follow:

Inter Press Service (IPS): What is the link between human rights violation and the leprosy-affected people? 

Alice Cruz (AC): Throughout history leprosy has become much more than a disease: it became a label, mainly used to exclude. Leprosy came to embody what was socially prescribed as shameful and disrupting. It became a symbol, a powerful metaphor, for everything that should be kept apart, whether it was attributed to punishment for sinful conduct, unregulated behaviour, past offences and socially constructed ideas of racial inferiority, among others harmful myths and stereotypes, which led to massive human rights violations of persons affected by leprosy, but also their family members.

IPS: Can you describe some of the ways the rights of leprosy affected people are violated?

AC: Women, men and children affected by leprosy were, and continue to be in many contexts, denied not only their dignity, but also an acknowledgement of their humanity. It is not a coincidence that it is commonly said that persons affected by leprosy experience a civil death.

They have been consistently subjected to: stigmatising language; segregation; separation from their families and within the household; separation from their children; denial of care; denial of the means of subsistence; denial of a place to live; denial of education; denial of the right to own property; impediments to marry; impediments to have children; restrictions on their freedom of movement; denial of their right to participate in community, public and political life; physical and psychological abuse and violence; compulsory internment; forced sterilisation; institutionalised silencing and invisibility.
There are still more than 50 countries in the world with discriminatory laws against persons affected by leprosy in force.

IPS: What is the UN doing to prevent and end these violations?

AC: In 2010, the General Assembly, in a landmark move, adopted resolution 65/215 and took note of the principles and guidelines on the elimination of discrimination against persons affected by leprosy and their family members. In so doing, it established leprosy as a human rights issue and stressed that persons affected by leprosy and their family members should be treated as individuals with dignity and entitled to all human rights and fundamental freedoms under customary international law, the relevant conventions and national constitutions and laws. In June 2017, the Council adopted resolution 35/9, establishing the mandate of the Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members. It called on States and all relevant stakeholders to cooperate with the Special Rapporteur in the discharge of the mandate. I assumed this role on Nov. 1, 2017.

IPS: How far have we come in achieving the 2020 target leprosy eradication?

AC: I am afraid we are very far from such a scenario. By the one hand, eradication of leprosy is not on the horizon given the lack of a vaccine. By the other hand, official reports of around 150 countries to the [World Health Organisation] WHO in 2016 registered more than new 210 000 cases of leprosy, with high incidence among children, which means ongoing transmission.

IPS: How can every ordinary person contribute to eradication of leprosy and ending stigma towards leprosy affected people? 

AC: Acknowledging that persons affected by leprosy are the same as everyone else and fighting harmful stereotypes in daily life. Remembering that anyone, including you and me, can come to suffer from any disease or disability and that diversity and dignity in diversity is what makes us humans.

Culion Sanitarium and General Hospital Medical Director Dr. Arturo Cunanan urged delegates to the Regional Assembly of Organisations of People Affected by Leprosy in Asia to "put our partnership beyond these walls" and act on the strategies discussed at the three-day conference. Credit: Ben Kritz/IPS

By Ben Kritz
MANILA, Mar 5 2019 (IPS)

Organisations of people affected by leprosy in Asia have agreed to form a regional-level secretariat to support national advocacies and represent their collective agenda at a world conference to be held later this year.

This was the most significant development to emerge from the Regional Assembly of Organisations of People Affected by Leprosy in Asia held in Manila from Mar. 3 to 5. The Coalition of Leprosy Advocates of the Philippines (CLAP) was selected by the delegates to serve as the first regional secretariat.

Sasakawa Memorial Health Foundation (SMHF) Executive Director Dr. Takahiro Nanri requested that the first major initiative of the secretariat be the formulation by June of a “road map” encompassing the Assembly’s consensus agenda, which would then be used by the SMHF and it’s parent body the Nippon Foundation (TNF) to help develop the programme for the world leprosy conference to be held in September.

SMHF and TNF convened the regional assembly in partnership with CLAP and the Culion Sanitarium and General Hospital (CSGH).

From theory to practise

CSGH chief Dr. Arturo C. Cunanan told the delegates assembled for the final day of the conference that, “putting our partnerships beyond these walls, putting it into action, is the big challenge” faced by the national organisations, who represented the Philippines, Indonesia, Nepal, China, and Kiribati.

Cunanan, who is considered the Philippines’ foremost leprosy expert, was particularly upbeat about the conference’s focus on improving communications to stakeholders.

“One of the most valuable things to come out of this conference is the learning about social marketing, and what interventions we can use,” Cunanan stressed to the attendees.

Another key takeaway from the conference, Cunanan said, was the recognition of economic opportunity as a vital component of social inclusion strategies for people affected by leprosy.

“I think an important thing that has emerged here is the idea that poverty is really the root of stigmatisation and prejudice,” Cunanan told IPS. “When people have financial resources, the discrimination goes away. Obviously, providing economic opportunity should be a priority for the various national organisations.”

Cunanan pointed out that priority complemented the focus on organisational sustainability, which was an emergent theme at the conference. “It is very similar to the same thinking that organisations need to find income-generating programmes to be sustainable,” Cunanan said. Reiterating the point he made to the assembly, he added that the goal for the organisations should be to put “theory into practise” and develop practical actions from what they learned.

Representatives of participating organisations discussed various national and regional objectives for leprosy advocacy in Asia. A significant outcome of the conference was the formation of a regional secretariat to coordinate and represent the Asian agenda at an upcoming world leprosy congress. Credit: Ben Kritz/IPS

Clear consensus

Starting with an overall theme of “improving social inclusion,” the Regional Assembly of Organisations of People Affected by Leprosy in Asia at the outset identified four areas for discussion: Preserving the history of leprosy and its treatment; defending human rights and eliminating the stigma associated with leprosy; improving the delivery of public health services; and sustainability of the organisations.

The consensus among the participating organisations was that sustainability was indeed a critical priority, and perhaps the most significant challenge faced by leprosy advocacies at the national level.

Another key national-level agenda item agreed by the conference attendees was the need to improve networking with their respective governments, as well as other key organisations. In line with this, developing strategies to improve organisations’ public image, branding, and their marketing efforts was also acknowledged as an important objective for national organisations. During the conference, the importance of understanding and developing effective social marketing was stressed, both through the use of social media and more conventional practises.

The development of a regional secretariat was considered the most important objective at a collective level. The conference participants echoed the sentiments of CSGH’s Cunanan that the shared ideas developed over the three days of talks should not be allowed to “dissolve” when the organisations return to their home countries.

Conference attendees also agreed that creating a “sustainable development strategy” on a regional basis should be prioritised going forward, taking into account the need to strengthen national organisations as well as the regional group. Just what that strategy would entail, however, is still subject to discussion among the various groups. 

Capacity building, improving the organisational and managerial capabilities of national organisations, also emerged as a regional agenda. During the conference, capacity building was expressed as a significant concern for many organisations, since many of their members lack relevant work experience or education. A regional strategy could help pool talent resources among the Asian organisations, at least until some of their own people could gain more experience.

The development of a regional framework and individual national agendas made the first Regional Assembly of Organisations of People Affected by Leprosy in Asia a success, conference facilitator Joseph “Boyet” Ongkiko told IPS.

“What excites me is to see the coming together of different groups, and their coming away with unity of heart and purpose,” Ongkiko said. “With leprosy, there is a commonality in the stories, but what we saw and heard are people moving from victims to victors.”

Nanri told IPS that much still needs to be done.

“There’s a big difference between elimination and eradication. As of today, most countries have eliminated leprosy, but it has not been eradicated yet as new cases continue to appear. To eradicate, what we need is one last big push – or re-activate public attention to leprosy,” he said, adding that until now the information around leprosy has not been well presented.

“If we can better package it, forge better partnership with media and if we can get greater political commitment, we can make that reactivation of people’s attention can happen.”

*Additional reporting by Stella Paul in Manila 

Takahiro Nanri (left - black jacket), Executive Director of Sasakawa Memorial Health Foundation, joins hands with a leprosy survivor (right). Credit: Stella Paul/IPS

By Stella Paul
MANILA, Mar 5 2019 (IPS)

Takahiro Nanri is the Executive Director of Sasakawa Memorial Health Foundation which has been supporting the global fight against leprosy for almost five decades. Since 2014, Nanri has been leading the foundation’s leprosy projects across the world and has deep insights into the challenges faced by the people affected by leprosy as well as the organisations that work with them.

He also shares the dream of Yohei Sasakawa – the chairman of Nippon Foundation – to see a leprosy-free world and believes that despite several challenges and roadblocks, this dream is indeed possible to realise.

In an exclusive interview with IPS, Nanri talks about the idea behind the regional assembly of leprosy-affected people in Asia that was held in Manila.

He also tells how people who are affected by leprosy  are treated as social outcasts and why they must be integrated with the rest of the society. Finally, Nanri shares his views on how and why leprosy-affected people’s organisations should become sustainable.  Excerpts of the interview follow:

Takahiro Nanri is the Executive Director of the Sasakawa Memorial Health Foundation which has been supporting the global fight against leprosy for five decades. Credit: Stella Paul/IPS

Inter Press Service (IPS): Is there a reason behind Mr Sasakawa’s personal interest in leprosy? Why has the foundation continued even when it is not a big global threat anymore?

Takahiro Nanri (TN): As far as I know it was in the 1960s [when the Sasakawa family] visited leprosariums in some countries like Korea, South Korea, Nepal and at that time there was no Multidrug Therapy ( MDT) and the situation in the sanatoriums was very severe. So they had decided to fight against leprosy and launched the leprosy elimination programme and even established the Sasakawa Memorial Health Foundation.

I am very proud of the fact that this foundation has continued to work on the same issue for 50 years because, although compared to other diseases, this may have decreased, but there is still no end to leprosy.

IPS: How long have you been working on leprosy and what has been your biggest observation?

TN: I have been working on leprosy since 2014. But I have been working on poverty issues for the past 25 years. People affected by leprosy are really poor. So, working for leprosy is in a way working on poverty too.
Several years ago, there was the concept of the bottom of the pyramid; and we talked of the people living at the bottom of the pyramid and how to uplift them. We talked of using microfinance, social business approach etc. But I have realised that the people living with leprosy are actually living outside of the pyramid. That is why I feel integration is very, very important.

IPS: How did you come up with the idea of the Regional Assembly of Organisations of Leprosy- Affected People in Asia?

TN: Last September, we had a small meeting. We invited and had a discussion with some of the people’s organisations from India, Indonesia, Brazil and Ethiopia on what could be done. This September, there will be the World Congress on Leprosy where there will be academics, experts, governments. The congress is a crucial event but often organisations of the affected people are left behind. So, we came up with the idea of organising a pre-congress event where the affected people’s organisations so that it can also be a way for preparing themselves for the congress.

IPS: Why is sustainability still such a big issue for organisations of leprosy–affected people?

TN: Sustainability is not only an issue of leprosy affected people, but also for all the NGOs of the world. I don’t really have an answer here. It depends on each organisation, each leader. Every NGO, every organisation has to find its own way and its own strategy to sustain itself. Should they approach foundations, survive on external grants, seek membership fees, donations , do social business—it’s up to them. As foundations we can provide financial grant, but not forever. What we can do, however, is think together on what could be the next step.

IPS: There are many hidden cases in the world of leprosy. Can you share an example of a good action by a government that tried to act on this.

TN: In India, the government made a very brave decision. In 2016 they started a campaign to identify the endemic leprosy cases all over the country. And since then, every year, they do case detection camps. It has brought in the open many new cases that were previously hidden. It also resulted in an increase in the number of leprosy cases in the country, but after that it started to decrease as the cases were treated . So, this is an example I feel other governments can also follow.

IPS: How are you feeling now that the assembly has concluded?

TN: My expectation is very simple: this venue is for the people affected by leprosy. They should be able to discuss whatever they want to and decide whatever they want to decide.
Here, we saw is they are trying to be more pro-active, opening up,coming up with some issues, some ideas on how they can strengthen their partnership, soI am happy.

Thobias Alexander Manas (R), here with his former social worker Kalep Manikari (L), was shunned and driven from his school, home, and village in West Timor when he contracted leprosy as a teenager. Thanks to individual intervention and skills training, Thobias, now age 52, owns a sewing shop and a rice and poultry farm, and is a community leader in the village that once rejected him. Credit: Ben Kritz/IPS

By Ben Kritz
MANILA, Mar 4 2019 (IPS)

The tragic tale of Thobias Alexander Manas’s personal experience with leprosy is all too typical.

Manas, who is now 52, is from West Timor, Indonesia, and was afflicted with leprosy as a grade 10 student. The reaction to his illness as soon as he exhibited signs of the disease was predictable. Shunned by his friends and forced to leave school, Manas was eventually driven out of his family’s home by his sisters and exiled from his village. He was eventually reduced to an isolated existence in a shanty he cobbled together from discarded materials, he told IPS through an interpreter.

When his disease became too painful–it had progressed to the point where Manas suffered permanent deformity of his hands–he made his way to a government health clinic where he was finally properly diagnosed and prescribed treatment. Fortunately for Manas, the clinic had a referral arrangement with UK-based Leprosy Mission International, which offered assistance to Manas.

“Thoby had to end his schooling because of his sickness, and so the most important thing was to offer him some kind of skills training,” explained Kalep Manikari, a former field worker for Leprosy Mission International and now a youth minister. Manas received training in tailoring, and was able to return to his village and set up a small shop.

His talent in spite of his disability helped to overcome the stigma he had experienced earlier, and it helped that Manas had been shrewd in his choice of vocation: His village only had one other clothing maker – who has now been his wife for 19 years. “Still, my family was against the marriage, because I had been sick,” Manas tells IPS through his interpreter. “But I said, it’s up to us to manage our lives, so we went off and married without their consent.”

Facing the prospect of losing not just one but both of the only people who could provide well-made clothing in the village, Manas family eventually accepted his marriage and his business thrived; he explained that he had recently diversified into poultry and rice farming, and had been able to send his daughter to college. Is was not without some pride that Manas described how he is now considered “well-off,” and has been transformed from a once-shunned leprosy sufferer to one of his village’s leaders.

Conference attendees at the Regional Assembly of Organisations of People Affected by Leprosy in Asia held a brainstorming session to develop ways in which their groups could generate sustainable incomes. Credit: Ben Kritz/IPS

Practical social entrepreneurship

Skills and livelihood training has always been a key objective of organisations supporting people affected by leprosy, and the three-day conference was filled with success stories much like Manas’s. While this remains a priority strategy, leprosy advocacy groups are shifting more of their focus toward organisation-level social entrepreneurship.

In a workshop session at the Regional Assembly of Organisations of People Affected by Leprosy in Asia in Manila on Monday afternoon, conference participants discussed various ways their groups could generate revenue through social entrepreneurship.

The approach is as much practical as it is aspirational. A common theme that emerged in the conference’s first day was the challenge faced by organisations in achieving and maintaining financial sustainability. Government and other donor grants are variable, and unavoidably limited. As Dr. Takahiro Nanri, the executive director of the Sasakawa Memorial Health Fund (SMHF), commented, “We are willing to give a great deal of support to these organisations, but whether we wish it or not, sometime it will have to end. Hopefully that does not happen before the organisations are able to stand on their own, so that is what we are trying to help them achieve.” SMHF is a sister body of the Nippon Foundation (TNF), one of Japan’s largest foundations.

Social entrepreneurship, the conference participants agreed, was a practical approach to meeting financial and social needs. Revenues from products created by organisations of people affected by leprosy fund the organisations’ activities, while providing livelihoods for their beneficiaries.

Even though there is a great deal of enthusiasm for the idea of organisation-level social entrepreneurship, there was a sense among the conference participants that in some circumstances success might be more easily described than achieved. Differences in resources and capabilities may narrow options for some organisations and expand them for others.

That reality makes it important for organisations to give equal attention to both collective and individual entrepreneurial opportunities, Manas suggested. “I just needed a chance. It’s important that organisations help people who can help themselves.”