Miss World Brazil Letícia Frota and Pragnya Ayyagari, Miss Supranational India agreed that zero leprosy and campaigns to destigmatize the disease should not be sidelined because of COVID-19. Credit: Joyce Chimbi/IPS

By Joyce Chimbi
Nairobi, Nov 8 2022 (IPS)

Deep-rooted discrimination against persons affected by leprosy or Hansen’s disease has marginalized individuals and communities. As social pariahs, opportunities to pursue their dreams are limited because, at best, they live at the periphery of society and, more often than not, are ostracized.

Yohei Sasakawa, WHO Goodwill Ambassador for Leprosy Elimination, said that because of discrimination and shame, “We had a long period when all people affected by leprosy had to live silently. Today, we have the Don’t Forget Leprosy Campaign, and we all have a role to play in this endeavor.”

Yohei Sasakawa, WHO Goodwill Ambassador for Leprosy Elimination, says everybody has a role to play in destigmatizing leprosy. Credit: Sasakawa Foundation

He was speaking during the third and final day of the 2nd Global Forum of People’s Organizations on Hansen’s Disease held by the Sasakawa Leprosy (Hansen’s Disease) Initiative in Hyderabad, India, from November 6 to 8, 2022, where participation was both in person and virtual.

During the Forum, discussions centered on the challenges persons affected by leprosy face and the vision of the future they wish to create moving into the post-COVID era. The primary objective was to strengthen and maximize the roles and capacities of people’s organizations to promote the dignity of persons affected by Hansen’s Disease.

Speakers and participants at the 2nd Forum highlighted how persons affected by leprosy are increasingly speaking out and seeking participation in implementing leprosy programs and formulating related policies. There are at least 41 People’s Organizations on Hansen’s disease in 25 countries across the globe.

Good practices of how people’s organizations are building capacities and expanding roles to enhance the dignity of those affected by the ancient disease from countries such as Ethiopia, India, Nepal, and Indonesia were extensively shared on days one and two of the Global Forum.

This gave way to the third and final day for speakers and attending participants to host side events on a theme of their choice in line with the Forum’s overall objective.

Miss World Brazil Letícia Frota and Pragnya Ayyagari, Miss Supranational India held a special session to raise visibility about persons affected by leprosy within the context of the Don’t Forget Leprosy Campaign. They reminded the world that leprosy should not be sidelined amid the COVID-19 pandemic.

The beauty queens spoke passionately about the need for a united vision toward a future without leprosy. They participated in a panel discussion that included Sasakawa and representatives of the Movement of Reintegration of Persons Afflicted by Hansen’s Disease (MORHAN) in Brazil and the Association of People Affected by Leprosy-India (APAL).

Discussions were firmly centered on the need to raise awareness and increase visibility around Hansen’s disease and the people affected, to work towards their inclusion and integration, and to particularly reach out to the younger generation as their role is critical towards zero leprosy.

“I am very empathetically connected to this cause, and I will use my influence to connect with young people in raising awareness about Hansen’s disease. I am very encouraged about ongoing efforts by MORHAN to educate school-going children about Hansen’s disease,” Ayyagari explained.

Frota stressed the need to spread awareness, especially to the younger generation who remain in the dark regarding leprosy. To change the future, she said, “We need to change the landscape of the disease by actively engaging young people. I will continue to engage and raise funds towards a future without leprosy.”

Miss World Brazil further spoke about the rights of people affected by leprosy to live and enjoy opportunities without discrimination. She highlighted the need for early detection and treatment of leprosy as critical to reaching zero leprosy.

Participants were pleased with the involvement of the beauty queens because, as celebrities, they can use their massive following to draw attention to the disease.

Representatives of MORHAN and APAL said that as people affected by leprosy, there is an urgent need to take the message to the world that leprosy is curable and that the community must not be forgotten even as COVID-19 continues to take center stage.

They all lauded ongoing efforts to bring the global community together to bring attention to the ancient disease and to forge a way forward toward its elimination.

Sasakawa encouraged those at the forefront of fighting stigma and discrimination against leprosy and those taking active steps towards its elimination always to remember that they are not alone.

“So many like-minded people support you and are comrades in this fight. You might face certain challenges going forward but remember that so many people are backing you,” he said.

During the panel discussion, persons affected by leprosy from different countries had an opportunity to speak about how they are still grappling with the pain of stigma and discrimination even after being healed from leprosy.

They stressed that even though they cannot transmit leprosy to others, they are still treated with fear, and many are silenced by the stigma, unable to live life to their full potential. They vowed to use this pain to fuel and boost the Don’t Forget Leprosy campaign towards a future free from all forms of discrimination against those affected by the ancient disease.

In all, representatives of persons affected by leprosy urged participants to use the little they have to do whatever they can. By and by, they said, the global campaign to eliminate leprosy will grow wings to fly to every corner of the world, to reach people with the message that leprosy is curable, and to give hope to every person affected by leprosy.

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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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WHO Goodwill Ambassador for Leprosy Elimination Yohei Sasakawa with Mother Theresa of Calcutta in the early years of a campaign to eliminate leprosy and eradicate stigma from those affected by it. Sasakawa has turned this into his life’s work and, speaking at a webinar in support of the ‘Don’t Forget Leprosy’ campaign recalled how people affected by leprosy continue to be marginalized. Credit: Joyce Chimbi

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

On a visit to Indonesia’s Papua Province, WHO Goodwill Ambassador for Leprosy Elimination Yohei Sasakawa had dinner with a man forced from his village and living alone because he was affected by leprosy.

Over the years, Sasakawa saw many other desperate and desolate people infected and affected by leprosy. Marginalized, shunned, stigmatized, feared, and relegated to society’s furthest and hidden corners.

“Until I became ambassador, persons affected by leprosy tended to be on the receiving end of assistance. But I felt this was not the solution because this was contributing to self-stigma. I felt it was important for the public to know that they had been cured of their disease and were active,” Sasakawa, also the Nippon Foundation Chairman, says.

“I wanted to speak out, even though they had suffered from severe discrimination for a long time and were afraid that if they spoke up, they would be targeted afresh.”

Sasakawa spoke of his belief that persons affected by leprosy should take the lead in eliminating prejudice and discrimination and of partnerships with NGOs, academic institutions, and many other efforts to eliminate leprosy.

Sasakawa was speaking in support of the ‘Don’t Forget Leprosy’ campaign webinar series by the Sasakawa Leprosy Initiative under the theme, ‘Elimination of Leprosy: Initiatives in Asia.’

Under the Sasakawa Leprosy Initiative, the WHO Goodwill Ambassador, the Nippon Foundation, and Sasakawa Health Foundation work in coordination to achieve a leprosy-free world.

“The ‘Don’t Forget Leprosy’ campaign is significant. COVID-19 took attention away from other diseases, including leprosy. Leprosy continues to be a challenge. We must stay on the mission to detect, treat and eliminate leprosy,” Tarun Das, chairman of Sasakawa India Leprosy Foundation (S-ILF), told participants.

Sasakawa recounted Asia’s journey towards the long-term vision of zero leprosy, zero infection, disease, zero disability, and zero stigma and discrimination. Sasakawa spoke of the many challenges encountered along the way, the triumphs, and the journey into a leprosy-free world.

Triumphs include availability and provision of effective leprosy treatment and particularly the critical role played by the Nippon Foundation in reducing the number of patients with leprosy by ensuring Multiple Drug Therapy (MDT) treatment was available and free to all persons affected by leprosy.

WHO Goodwill Ambassador Yohei Sasakawa speaking during a webinar on ongoing initiatives in Asia to eliminate leprosy. Credit: Joyce Chimbi

Sasakawa also told participants about the Dalai Lama Sasakawa Scholarship with matching funding from the Nippon Foundation in support of children from families affected by leprosy.

“It has not been an easy journey,” he said, but the answer for Sasakawa to solve these challenges is: “We will not know until we try.”

Dr David Pahan, the country director of Lepra Bangladesh, spoke about leprosy as a neglected tropical disease and is least prioritized by the health system.

He told participants that the leprosy program further faced sudden and significant challenges induced by COVID-19, leaving persons affected by leprosy highly vulnerable.

“In response, we provided advice and emergency assistance to people affected by leprosy or acute disability in households threatened by the COVID-19 outbreak in Bangladesh,” Pahan told participants.

Pahan stressed the need for early treatment to prevent the risk of disability and encouraged collaboration with Civil Society Organizations to help fight stigma and improve leprosy treatment outcomes.

Erei Rimon, the National Leprosy Elimination Program Manager, Ministry of Health and Medical Services, Republic of Kiribati, spoke about the small island nation in the Central Pacific Ocean with an estimated total population of 119,490. Registered leprosy prevalence per a population of 10,000 is 12.9.

Rimon reported ongoing efforts, such as the capacity building of health staff to detect and manage leprosy and follow-up of leprosy treatment defaulters, leading to a notable reduction from 241 defaulters in January 2021 to 162 defaulters in December 2021.

Das lauded ongoing collaborations, saying that Asia deserves special attention, especially South-East Asia, an endemic leprosy region. Asia is one of six WHO regions, where 127,558 new leprosy cases were detected in 2020 across 139 countries, including India, Nepal, and Bangladesh – 8,629 of these were children below 15.

Despite COVID-19 disrupting programme implementation and a reduction in new leprosy case detection by 37 percent in 2020 compared to 2019, Asia and, in particular South-East Asia, reported an estimated 84,818 cases out of an overall 127,558 cases.

Against this backdrop, Das told participants that S-ILF is dedicated to the socio-economic integration of people affected by leprosy to pull them out of demeaning dependence and earn their livelihoods with dignity.

S-ILF’s core business is to promote business opportunities, providing small loans for businesses and offering scholarships for children from leprosy-affected families.

The participants in the webinar heard heart-wrenching testimony.

“My name is Maya Ranaware, treasurer of the Association of Persons Affected by Leprosy. I am a woman affected by leprosy and cured. (I have) faced and (am) facing leprosy-related challenges. I experienced the most painful stigma from family, loved ones, and society,” she told participants.

Ranaware said this was the life of women affected by leprosy, most of them poor, unable to read and write, and without psychosocial or other critical support systems. She called for increased social awareness to change this trajectory so that women affected by leprosy are not forgotten.

Ranaware’s views were echoed by Yuliati, Chair of the South Sulawesi branch of PerMaTa Indonesia, who decried myths and misconceptions around leprosy. Yuliati cautioned that these levels of misinformation derail efforts towards a leprosy-free world.

Dr Takahiro Nanri, the Sasakawa Health Foundation executive director, moderated a question-and-answer session between the Goodwill Ambassador and participants. This provided an opportunity to explore whether it was possible to eliminate leprosy by 2030.

While this was a grand vision, Sasakawa said it helped keep the leprosy elimination movement on track.

Despite his relentless campaign to eliminate leprosy, Sasakawa says: “I still do not think I have done enough.”

For so long, he says, “leprosy was thought of as a divine punishment or hereditary or highly contagious. Until MDT transformed treatment, people had this negative image of leprosy that remained in their DNA. We have to do more to remove it.”

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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.

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.

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:

Jennifer Quimno of the Coalition of Leprosy Advocates of the Philippines (CLAP) (centre) is joined by Sri Lanka's Shagana Thiygalingam (L) and Amarasinghe Manjula (R) after Quimno delivered the recommendations presented by the Global Forum of People's Organisations on Hansen's Disease to the International Leprosy Congress in Manila on September 11. Credit: Ben Kritz/IPS

By Ben Kritz
MANILA, Sep 11 2019 (IPS)

Stronger government action to fight stigma and discrimination, more government funding for health and non-health support programmes, and a larger role for people’s organisations in developing policy towards Hansen’s disease treatment and eradication are still needed for eliminating the disease.

This was some of the recommendations made by participants of the first ever Global Forum of People’s Organisations on Hansen’s Disease today, Sept. 11 during a presentation to global academics, scientists, researchers, health staff, partners and those affected by the disease at the 20th International Leprosy Congress (ILC).

Jennifer Quimno, secretary of the Coalition of Leprosy Advocates of the Philippines (CLAP), was chosen by the forum participants to represent the group.

“I really felt I was carrying everyone’s voices with me,” Quimno told IPS.

Ending stigma, improving cooperation

The ILC, which is currently being held in Manila, Philippines, is hosted every three years and was last held in China in 2016.

Prior to the start of the congress, Japan’s Sasakawa Health Foundation (SHF) and The Nippon Foundation (TNF), which support elimination of the disease as well as various organisations of persons affected by the disease, held a global gathering from Sept. 7 to 10. For the first time, organisations of those affected by Hansen’s disease from 23 countries across Africa, Asia, Latin America and the Caribbean met to share their know-how and experiences in eliminating Hansen’s disease.

Along with recommendations for eliminating discriminatory laws and practices, including social, psychological, and economic support in Hansen’s disease management programmes, and giving people affected by the disease a greater voice in policy formulation, the forum debated that a shift in terminology from “leprosy” to “Hansen’s disease” be promoted to help combat the historic stigma associated with the disease. No consensus was reached, however.

The recommendations called for comprehensive action and the involvement of non-health agencies and other stakeholders, because areas such as clean water and sanitation, proper housing, education, and dignified work are all, in the view of people’s organisations, critical to efforts to stamp out the disease.

The forum also called for a much greater role for people’s organisations in sustaining Hansen’s Disease treatment, rehabilitation, and services, and in promoting dignity, equality, and respect for human rights.

“Hansen’s disease is more than a disease caused by a bacterium. Poverty, institutional, social and political neglect, complacency and the structural invisibility of vulnerable populations contribute to the perpetuation of Hansen’s disease,” the final draft of the forum’s recommendations read.

Other key recommendations presented to the ILC by the forum include: More funding for research to fill scientific knowledge gaps that still exist (much remains unclear about the transmission of the disease); greater focus by national programmes on case detection, disability prevention, and rehabilitation during treatment; and more funding for “care after cure” programmes, including psychological, social, and economic rehabilitation.

To combat the stigma associated with the disease, the forum urged the widest possible dissemination and adoption by governments, NGOs, and other stakeholders of United Nations guidelines for the elimination of stigma and discrimination. 

The conclusions also made a firm demand for the elimination of all existing discriminatory laws and practises globally, saying that this would further require “affirmative and reparation policies,” in order to be truly effective in promoting equality.

The people’s organisations also made a call for a greater role in government policy-making toward leprosy. They did not neglect improvements in their own capabilities as well. While calling on governments to develop measurable action plans, the people’s organisations noted they must improve their effectiveness by through strengthening networks, and engaging more productively with governments.

Hope for the future, but a few uncertainties

Participants at the global forum who attended the first day of the ILC expressed hope the recommendations would lead to positive action, but noted uncertainties remain.

“Being able to do this at the ILC is a milestone for us, to have our perspective heard,” Frank Onde, president of CLAP, told IPS. While people affected by Hansen’s disease have regularly participated in the ILC, Onde felt this was the first time recommendations were presented in an organised way.

For Indonesia’s Ermawati, a member of PerMaTa, “Attending this congress is like a dream, to come from my village to be involved in a gathering like this,” she told IPS. “It’s inspiring, and I hope it would inspire others [affected by leprosy] to join us and help others.” 

Ermawati was hopeful the recommendations would lead to greater awareness and reduce stigma, particularly the discrimination against women in her country. “I hope it leads to greater acceptance, particularly of us women. In my country, the stigma is very great.” One problem faced by Indonesian women afflicted with leprosy is that they cannot marry; if laws in an area do not actually prohibit it, the culture in most places encourages men to shun these women.

Shagana Thiyagalingam, who is from Sri Lanka, felt that Quimno’s presentation was inspiring. Quimno spoke of how after both she and her father had contracted the disease, but how she still continued her studies currently works with the government health department. “Her story was so motivational,” Shagana told IPS. “It should encourage other women to come forward and feel less stigma.”

Thiyagalingam’s traveling companion Amarasinghe Manjula was likewise inspired by Quimno’s personal story.

While optimistic about what lies ahead, CLAP’s Onde, and his Indonesian counterpart Paulus Manek, the president of PerMaTa, expressed a few reservations. “The barriers [between people’s organisations and government agencies] really need to be minimised,” Onde said.

Manek saw the size of the ILC gathering itself as a sort of barrier to effective action. “It’s almost too big,” Manek said. “I see people here, they are interested in one or two issues only. Maybe there should be a closer focus on fewer issues at once.”

He also suggested that new guidelines from the United Nations Human Rights Council would be useful.  

“It would help us,” Manek said. “I think the media can also help to spread awareness and stopping discrimination.”

Quimno for her part was hoping to see some concrete actions taken as a result of her presentation on behalf of the global forum. “There are so many gaps to fill, so I would hope these people here would commit to studying and planning actions to take on the things we recommended. That would be progress.”

• The forum was organised by Japan’s Sasakawa Health Foundation (SHF) and The Nippon Foundation (TNF), which support elimination of the disease globally and provide information and awareness about the disease through their Leprosy Today website.

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

By Ben Kritz
MANILA, Sep 10 2019 (IPS)

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

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

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

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

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

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

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

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

A true people’s forum

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

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

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

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

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

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

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

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

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

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

Looking ahead

But there is much work to still do.

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

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

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

By Stella Paul
MANILA, Sep 10 2019 (IPS)

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

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

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

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

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

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

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

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

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

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

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

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

Excerpt:

Professor Ai Kurosaka, author of the book Fighting Prejudice in Japan: The Families of Hansen's Disease Patients Speak Out, describes how a lawsuit has helped Hansen's disease affected people get justice and compensation. Credit: Stella Paul/IPS

By Stella Paul
MANILA, Sep 8 2019 (IPS)

Professor Ai Kurosaka remembers the day she first interacted with a person affected by Hansen’s disease. It was 2003 and Kurosaka, then a graduate student of sociology at the Saitama University in Japan, had been assigned to interview ex-patients and their family members to document what kind of discrimination they faced. It was a very difficult task because nobody wanted to speak or identify themselves.

“They had already faced a lot of social discrimination such as bullying faced by children at school, physical violence by partners at home, refusal of marriage and employment and so on. They were scared of facing more of it by publicly admitting they were associated with Hansen’s disease,” Kurosaka recalls.

Fifteen years later, Kurosaka, who has since written a book on people affected by Hansen’s disease in Japan, is sharing their stories globally.

At the Global Forum of People’s Organisations on Hansen’s disease currently underway in Manila, Philippines, Kurosaka shared one story in which 561 family members of ex-patients of Hansen’s disease filed a class action lawsuit seeking justice and financial compensation against Japan’s government. The forum was organised by Japan’s Sasakawa Health Foundation (SHF) and The Nippon Foundation, which support elimination of the disease globally.

Compensation was sought for the discrimination and violations of rights that family suffered for generations, especially due to a government policy that segregated Hansen’s disease patients from their families before the country was declared free of the disease in 1996.

The suit was filed at the Kumamoto court of Japan in March 2016, and for the first time two generations came together and reveal how their human rights were violated for decades.

This June, the court passed a verdict in their favour and ordered the government to pay compensation.

According to Kurosaka, this is a fine example of using litigation as a tool to hold the government responsible for allowing discrimination and to also right the wrongs that have been done to Hansen’s disease patients and their families.

Participants at the Global Forum of People’s Organisations on Hansen’s disease in Manila, Philippines discuss litigation as a tool to restore to their rights. Credit: Stella Paul/IPS

“Every country where Hansen’s disease patients have been facing stigma, can use this tool to ask for justice. Maybe not everyone will win a monetary compensation, but they can ask the government to abolish any discriminatory law or policies that still exist,” Kurosaka told IPS.

The success story from Japan created a wave of reactions in the global forum as it resonated with many who have faced discrimination on multiple levels. Lilibeth Nwakaeogo, a human rights lawyer from Nigeria, said that she was now considering filing a lawsuit to ask for compensation for the most stigmatised people living with Hansen’s disease in the West African nation.

“In Nigeria, women who have Hansen’s disease face tremendous amount of stigma. They are neglected, treated as untouchable and almost dehumanised. For these women and their children who also face the same kind of stigma, I would consider filing a lawsuit to seek monetary compensation,” Nwakaego told IPS.

However, a lawsuit would take years and could test the strength of the community, cautions Pramod Kumar Jha, a participant from Nepal. Under Nepal’s constitution it is still legal for a man or woman to divorce their spouse on the grounds of leprosy. The removal of this discriminatory provision from the constitution is one of the priorities before the Nepali community of Hansen’s disease-affected people.

“We have already met the Chief Minister and appealed to him to annul this law. Filing a lawsuit could ideally be possible, it would also need for the entire community to stay united and fight a long fight,” he told IPS.

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

Ariel Lazarte of the Coalition of Leprosy Advocates of the Philippines (CLAP) shows off the dried fish production run by patients of a transient house operated by HD (Hope & Dignity) Philippines. Courtesy: Ariel Lazarte

By Ben Kritz
MANILA, Sep 8 2019 (IPS)

Organisations supporting people affected by Hansen’s disease (leprosy) have social rather than capitalist aims, but they need to take a business-minded approach to their work if they wish to be sustainable, experts at a global conference in Manila, Philippines said.

In workshops conducted at the Global Forum of People’s Organisations on Hansen’s Disease in Manila on Saturday and Sunday, Sept. 7 and 8, representatives of organisations from Asia, Africa, and Latin America agreed that sustainability is the biggest challenge they face.

Every organisation faces some uncertainty over the continuity of donor or government financial support, so reducing or eliminating reliance on external funding is considered a critical priority.

Japan’s The Nippon Foundation (TNF) and Sasakawa Health Foundation (SHF), which sponsored the global forum and provided capacity support to the participating organisations, have long taken the view that sustainability should be the ultimate goal.

At a regional conference of people’s organisations held here in March, SHF Executive Director Dr. Takahiro Nanri stressed that his foundation’s goal was to see its beneficiaries become self-supporting. “In order to be truly sustainable, the organisation needs to develop an income-generating programme,” Nanri said at the time.

Dr. Marie Lisa Dacanay president of the Institute for Social Entrepreneurship in Asia (ISEA) outlined the fundamentals of effective social enterprises, which were derived from research conducted by ISEA in India, Indonesia, Bangladesh and the Philippines. Credit: Ben Kritz/IPS

Fundamentals of social enterprises

On Sunday Sept. 8, Dr. Marie Lisa Dacanay president of the Institute for Social Entrepreneurship in Asia (ISEA) outlined the fundamentals of effective social enterprises, which were derived from research conducted by the institute in India, Indonesia, Bangladesh and the Philippines.

Social enterprises have three common traits, Dacanay explained:

• They are driven by a social mission instead of an enterprise mission;
• Successful social enterprises are wealth-creating organisations that provide some form of marketable products or services; and
• They follow a distributive enterprise philosophy in that profits are directed towards the social mission rather than being collected as return on investment.

In carrying out its mission, a social enterprise faces a number of external and internal challenges, Dacanay said.

External pressures come in the form of climate or environmental factors – a significant concern of agriculture-based enterprises; unfavourable government policies; harmful industry or market practises; inadequate government support for social programs; and institutional corruption.

Internal challenges include difficulty in accessing needed technology; securing initial financing; organisational and management capacity; production efficiency; and developing practical measures of the enterprise’s social impact.

Based on ISEA’s research, successful social enterprises can be organised following an entrepreneur non-profit model, a social cooperative model, a social business model, or what she described as “social entrepreneurship intervention,” which is a hybrid combining characteristics of all three models.
In determining which form of organisation is most suitable to the social mission, Dacanay told IPS, “I think everything starts with the reality. Every social entrepreneur starts with, ‘what are the needs, and the problem?’”

“The first step is really understanding the stakeholders you want to help,” Dacanay continued, “find out what they are doing already, and look at what gaps there are. That, along with the resources and capabilities available, define a way of moving forward, and then the organisational form will follow.”

Social business is still business

In the Saturday workshop, Earl Parreno, the chairman of the Philippines’ Altertrade Foundation, Inc. (ATFI) conducted a training in business planning basics for the assembled people’s organisations.

Defining a social enterprise as one that pursues a triple bottom line philosophy (financial, social, and environmental results), Parreno explained that the fundamentals of business planning must still be applied, but that organisations that are made up of people who are both the providers and beneficiaries of a social mission are often handicapped by a complete lack of capacity.

“Poverty is not just lack of financial resources,” Parreno told the workshop participants in his presentation, “It’s really incapability, a lack of knowledge.”

Developing the capabilities can be an arduous process, but is achievable. One of ATFI’s areas of focus in the Philippines is among poor farmworkers in Negros Province, a centre for sugar production. Parreno described the success of the social enterprise supported by ATFI in marketing Muscovado sugar – semi-raw sugar that was at one time considered “poor man’s sugar,” but is now a premium-priced staple in organic food stores.

“The business ideation is really critical,” Parreno explained to IPS. “We have a saying here in the Philippines: gaya-gaya puta maya, which means something like ‘copycat.’” A common problem among new social enterprises, Parreno said, is a lack of originality in the revenue-generating product or service they wish to pursue.

“What we stress to our social enterprise partners is that they should not conceive a product or service that’s just better, but one that is truly different and has a ‘solidarity market,’” Parreno said, such as the market of “mindful consumers” for organic Muscovado sugar discovered by the Negros sugar farmers. “That solidarity market is so important. It really gives the people’s organisation a fighting chance.”

According to Parreno, developing a sound business plan, from business ideation through resource mapping, feasibility study, and market analysis answers one of the key concerns expressed by many of the forum participants in the post-workshop discussion: The difficulty in securing initial funding to launch a social enterprise.

“The only difference between this kind of (social) business and a conventional business is where the profits go,” Parreno explained. “The discipline and the steps that need to be taken to develop it are very much the same, and if the result is a good business plan, the investors to get it off the ground will follow.”

A poultry and dried fish production project located in Baras, Rizal Province, east of the Philippine capital, employs about 10 people, all residents of a transient house for leprosy patients. It is a good example of a social enterprise that has proved successful.

Ariel Lazarte, a member of Coalition of Leprosy Advocates of the Philippines (CLAP) who runs the social enterprise, told IPS that sales have been good enough that his out-of-pocket expenses have been fully covered by the revenue, as well as providing much-needed funding for the transient house residents.
The social enterprise, part of HD (Hope and Dignity) Philippines, a non-profit managed by Lazarte, makes about 560 dollars a month.

Half of this is ploughed back into the social enterprise and the remainder is used to pay for the living expenses of the patients, including paying for medicines, transport, food, water, and vitamins.
“The only outside funding we had was for [the pen for the chickens],” Lazarte told IPS, noting that the Tikkun Olam Foundation, which supports Hansen’s disease in the country, provided the funding for this.

“The residents of the house who are capable help to tend the chickens, which are layers, and produce the dried fish. We then sell the eggs and fish in the local market.”

Part of the marketing advantage the poultry project has is that the eggs are organic. “We use organic feed for the chickens,” Lazarte said. “No synthetic feed.”

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

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

By Ben Kritz
MANILA, Sep 7 2019 (IPS)

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

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

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

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

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

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

Making the most of volunteers

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

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

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

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

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

From local organisation to network

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

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

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

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

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

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

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

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

By Stella Paul
MANILA, Sep 7 2019 (IPS)

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

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

The journey was worth it.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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 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.