Ten ambitious scholars have the opportunity to participate in the Nippon Foundation-Partnership for Observation of the Global Ocean Centre of Excellence in Observational Oceanography. Credit: Riley Smith/Courtesy OFI

By Alison Kentish
DOMINICA, Mar 19 2024 (IPS)

Picture yourself as an early-career ocean researcher. You have the opportunity to be at sea in addition to learning on campus. Through cutting-edge technology and immersive facilities, you experience the most realistic ocean exploration scenarios, including braving extreme cold and harsh environments. That’s the experience at the Launch, a ‘living lab’ at the Marine Institute of Memorial University in Newfoundland and Labrador, located on the east coast of Canada. It’s an experience meant to prepare you for the real-world complexities of the type of ocean research needed to tackle urgent global issues like climate change.

In the same spirit of immersion, imagine being able to conduct research at two unique ecological observatories: Hakai Institute’s Quadra Island with labs for genomics, ancient DNA, and physical and chemical observatory, and the Institute’s remote Calvert Island observatory—an off-grid site and the only settlement on the island, which is located between Vancouver and Alaska. There, you can conduct research in oceanography, ecosystems mapping, nearshore habitats, watersheds, and biodiversity.

What sounds like a researcher’s most ambitious dream is the reality for scholars of the Nippon Foundation-Partnership for Observation of the Global Ocean Centre of Excellence in Observational Oceanography. Once spearheaded by the Bermuda Institute of Ocean Sciences and the Alfred Wegener Institute for Polar and Marine Research, the next phase of the programme is being hosted by the Ocean Frontier Institute (OFI), which is led by Dalhousie University, in partnership with the Faculty of Open Learning and Career Development at Dalhousie University. Partnerships with the Marine Institute of Memorial University and the Hakai Institute make for dynamic learning and hands-on experience.

“By providing 10 scholars a year the opportunity to develop and fine-tune their interdisciplinary skills, all relevant to observation of the global ocean, the Centre of Excellence is equipping the next generation of leaders and mentors,” says Tracey Woodhouse, OFI’s Training and Early Career Development Program Manager.

The Centre of Excellence is being hosted by the Ocean Frontier Institute (OFI) in partnership with the Faculty of Open Learning and Career Development at Dalhousie University. Credit: Courtesy OFI

With a significant number of applicants received, priority consideration is being given to candidates from developing and emerging nations who hold positions at research, academic, or governmental institutes in their home country, and who anticipate returning there after the completion of the program.

“They learn about the climate-ocean nexus, how to communicate with diverse groups, including policymakers, data management practices, coding, and modelling, all while networking with researchers at the forefront of ocean and climate work.”

Since its start in 2008, there have been 10 cohorts of scholars, producing over 100 scholars. Woodhouse says the scholars join a larger network of alumni and have inspired the next generation of ocean observers. Founder and President of the Tula Foundation’s Hakai Institute, Eric Peterson, says the values of the Centre of Excellence seamlessly align with those of the partners.

“Our Hakai Institute is an integrated program of coastal science and community programs on our Pacific coastal margin. We say that we study everything from “icefields to oceans,” mainly through the lens of climate change. Together with many partners, we conduct long-term observational science and experimentation ranging from analyzing water masses upwelling across the continental shelf to glacial loss and coastal instability,” he told IPS.

“We provide the fellows with exposure to the Pacific Coast, hands-on field research, and greater exposure to Indigenous perspectives on science, resource management, and education,” he told IPS.

Peterson says the programme’s diversity ensures that no region is left out of ocean science research.

The scholars have the opportunity to experience both ocean exploration and learning on campus. Credit: Courtesy OFI

“Our other program, which has been in place for over 20 years, is a public health and nursing education program (TulaSalud) in the rural Indigenous regions of Guatemala. We welcome initiatives that build links between our ecological work in Canada and our longstanding work in global health, in the spirit of what is now called OneHealth. The Centre of Excellence, with its emphasis on educating future leaders from the global south, is therefore a very good fit for us,” he said.

Officials of the Marine Institute campus of Memorial University agree. Vice President Dr. Paul Brett told IPS that the programme is “creating space” for early-career researchers to expand their work in ocean observation within the wider context of ocean research.

“This program sees scholars come together worldwide and with varied academic experiences. The diversity in perspectives will be beneficial in many elements of the group’s shared learning and in the independent research projects they will engage in throughout the program. It is anticipated that participation in the independent research work, coupled with curricular elements of science communication and presentation skills, will equip students to engage in critical conversations concerning ocean research in Canada and their home country.”

Brett says the Marine Institute will host the scholars for about six months and they will be part of a programme ‘tailored to the fundamentals of observational oceanography’.

“Topics include applied oceanography, ocean observation, and remote sensing. The curriculum will be delivered through classroom theory, practical hands-on shops, labs, and time spent on the water from MI’s Holyrood facility, The Launch,” he said.

With the Hakai Institute’s assistance, the scholars will benefit from investment in geospatial science. According to Peterson, this includes satellites, aircraft, drones, and bathymetry.

“Most of the work we do from our ecological observatories is fortified by detailed mapping, modelling, etc. This ranges from mapping of ocean dynamics, planktons, kelps, and seagrass, intertidal invertebrates, snow and ice cover, geomorphological change to our coastline, and even identification of ancient human settlements has a geospatial component,” he said.

OFI has confirmed International Ocean Institute Canada and DeepSense as additional curriculum delivery partners and the Institute intends to forge new partnerships as the programme progresses.

The Centre of Excellence will be hosted by OFI for at least three years, with the possibility of an extension. Institute officials say that through this partnership, the scholars are given the tools, facilities, mentorship, and opportunities to make their mark on ocean research.

“Graduates from the Nippon Foundation-Partnership for Observation of the Global Ocean Centre of Excellence go on to complete higher-level degrees; guide ocean stewardship in their home countries; teach, mentor, and inspire the next generation; lead innovative ocean research; inform policy; and more. There’s no limit to the number of doors the Centre of Excellence can open for the scholars,” said Woodhouse.

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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.

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.

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.

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

By Ben Kritz
MANILA, Mar 5 2019 (IPS)

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

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

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

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

From theory to practise

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

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

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

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

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

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

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

Clear consensus

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

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

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

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

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

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

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

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

Nanri told IPS that much still needs to be done.

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

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

*Additional reporting by Stella Paul in Manila 

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

By Stella Paul
MANILA, Mar 5 2019 (IPS)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

By Ben Kritz
MANILA, Mar 4 2019 (IPS)

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

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

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

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

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

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

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

Practical social entrepreneurship

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

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

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

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

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

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

Itinnenga Uan—country head of Pacific Leprosy Foundation in Kiribati (left) and Kurarenga Kaitire, travelled for almost 24 hours  to reach Manila, the capital of the Philippines, to attend the Regional Assembly of Organisations of People Affected by Leprosy in Asia. Credit: Stella Paul/IPS

By Stella Paul
MANILA, Mar 4 2019 (IPS)

Kurarenga Kaitire lives in Kiribati—one of the world’s most climate-vulnerable nations. Already vulnerable to nature, the 29-year-old mother of five has faced a series of vulnerabilities over the past decade, including facing social stigma and domestic abuse.

The reason: she has leprosy—a disease still dreaded by many in the world.

Currently in Manila to attend  the ongoing 3-day Regional Assembly of Organisations of People Affected by Leprosy in Asia, Kaitire tells her story of personal loss and triumph with IPS.

A 2010 medical test confirmed that Kaitire had leprosy, news she quickly shared with her husband of two years. What happened next was unexpected.

“He went cold. He stopped coming near me or our child. From next day he would not come home in time. He would not touch me and when I questioned him on why he was behaving like that, he beat me up and cut off my hair,” she tells IPS.

When she could not take the beatings any longer, Katire threw her husband out of the house. He then stripped the home of its roofing, making the house uninhabitable.

It was around this time that she was introduced to Itinnenga Uan—country head of Pacific Leprosy Foundation in Kiribati. The foundation runs a welfare programme for leprosy affected people and Kaitire’s conditions qualified her for it.

“She was single [divorced], she had physical deformity and she faced discrimination too. So we helped her [boost her income to rebuild] the house. She is very hard working and had tried many things to have an income, but now she sells vegetables and potable plants. Now she has a better way to support herself and her children,” Uan tells IPS.

Kiribati has only 118,000 people. But for such a small population, the number of people affected with leprosy is quite large as each year over 200 new cases are reported. The low-lying and sinking Pacifci island nation has the highest percentage of people affected by leprosy compared to the total population.

And despite being a tiny country, the level of discrimination and stigma is just as high as everywhere else in the world, Uan reveals.

Itinnenga Uan—country head of Pacific Leprosy Foundation in Kiribati (left) and Kurarenga Kaitire, a leprosy survivor, talk about how their home nation of Kiribati is vulnerable to climate change. Credit: Stella Paul/IPS

For a country which is considered lost to rising sea levels, this stigma is an added burden and one that is difficult to cope with. The government of Kiribati, which heavily relies on international aid for running welfare programmes, has just started to provide financial support to the people affected by leprosy. This is aside from providing free basic medication.

But to access the support packages, one must first be graded by the government. Grading is a clinical system of classifying stages of the disease for treatment purposes. According the the World Health Organisation (WHO), Grade 0 means no impairment, with Grade 2 meaning visible impairment. Scores are added also by combining indicators on six body sites and a final grades range from 0 to 12.

Those with the highest grade receive 50 Australian dollars a month.

However, the government has made significant progress in creating public awareness.

“People are highly aware of leprosy because there are regular programmes on public radio which give a lot of information. In fact Kurarnega Kaitire went to a doctor for a medical check up only after she had listened to a  radio programme on leprosy,” Unan says.

But there is still a lot left to be done.

Programmes and policies that can address the vulnerabilities of leprosy affected people who are also climate vulnerable is one of them.

For example, many of the people in Kiribati are severely crippled by leprosy. Many others are living with physical disabilities, which include loss of eye sight. There is still no climate policy that particularly designed for these people with special need.

“Because of the sea level rise, we are sinking. There is constant heavy rain, wind and flooding. So our government recently has announced that we all can elevate our houses to a higher level. If I want, I can build 4-5 stories on my house. But those who are immobile (with leprosy), how will they climb to such heights? What is the alternative for them?” Uan asks.

Kaitire who travelled for almost 24 hours  to reach Manila, the capital of the Philippines, admits that she is experiencing stiffness in her legs already. She also has just spoken to her daughter in Kiribati over the phone and learnt that its raining heavily there. The thought of another 24-hour journey and multiple flights and walking in the middle of a flood is intimidating for her. “I will come to your home,” she tells Uan, trying to humour herself. Uan’s home is closer to the country’s airport and not affected by the flooding.

There is no magic wand that either Uan or Kaitire know of. However, they are in Manila with the belief that there will be new ideas and connections that they can make to help themselves in the future. The Sasakawa Memorial  Health Foundation/the Nippon Foundation (TNF) which supports leprosy projects across the world, is yet to work in Kiribati. If they enter the country and partner with the government, there can be better support for the leprosy affected people, Uan hopes. TNF has been supporting leprosy eradication across the globe since the late 1960s, even supplying free multidrug therapy through the WHO.

Kaitire, on the other hand, is more focused on helping her children obtain an education and making herself strong enough to deal with all the challenges she may still face—be it social, physical or financial.

Recently, her ex-husband returned to her, asking for forgiveness but she didn’t take him back. “I need medication, financial stability and above all, dignity. I don’t want a man who can’t give me that.”

Filipino businessman Ariel Lazarte was diagnosed with Hansen’s Disease in 2014. Since his treatment he has built a successful business and has become a patron for those affected by the disease. Credit: Nalisha Adams/IPS

By Nalisha Adams
MANILA, Mar 4 2019 (IPS)

When Ariel Lazarte from Quezon City, Philippines, was first diagnosed with leprosy in 2014, his life seemed as if it were falling apart. But now more than four years later Lazarte’s life is a huge contrast from the poverty and isolation he experienced as a person affected by leprosy.

Now the owner of multiple businesses, including ones in transport and construction, and the owner of a large family home as well as an in-patient home for persons receiving treatment for leprosy, Lazarte was driven to become a success by his strong desire to help others.

“I didn’t get any help from my family, my friends, my relatives. I only trusted the doctor,” Lazarte tells IPS of the year he spent receiving treatment for leprosy, which is also known as Hansen’s Disease. “I was very thirsty for the help from others. I was in need.”

He was one of the participants of the Regional Assembly of Organisations of People Affected by Leprosy in Asia. The assembly is being held in Manila, Philippines, Mar. 3 to 5 and is supported by the Nippon Foundation (TNF)-one of the biggest private foundations in Japan that has been working to provide assistance to people with leprosy since the late 1960s.

At the time of the diagnosis, the then 32-year-old who worked as a manager in a fast food store, was able to afford treatment at a private hospital. But instead of being cured, his condition worsened.

Eventually, he lost his job and felt more and more alone as his wife stopped sharing a bed with him and his friends stopped visiting. His wife’s dried fish kiosk business become their sole support of income and much of the money was spent on survival and not medicine.

And while he kept receiving treatment, he kept thinking: “I’m dying.”

Eventually Lazarte’s doctor told him he couldn’t cure him and referred him to the Jose Reyes Memorial Hospital. He began an 8-month treatment course that eventually cured him.

“The doctor promised me I would be helped. And I promised that I would help those with leprosy,” Lazarte says, explaining that it didn’t want others who were affected by the disease to experience what he did.

According to a World Health Organisation report, the country has 2,000 new leprosy patients a year. Dr Maria Francia Laxamana, assistant secretary of Health in the Department of Health, says only one in four receive treatment because many fear the social stigma.

Unique to the Philippines, jeepneys are long wheel based taxis, converted from American jeeps left in the country after World War II. Credit: Nalisha Adams/IPS

But after a year of treatment that cured him of Hansen’s Disease, Lazarte started fulfilling his promise.

Lazarte started small. With 15 dollars, he bought some shorts and pillows and began selling them. Soon he bought a tricycle – a Filipino transport bicycle with a small cab. And soon he owned seven of these.

And then later he was able to afford a jeepney. Unique to the Philippines, jeepneys are long wheel based taxis, converted from American jeeps left in the country after World War II.

He is now the owner of 12 jeepneys.

With the money from the businesses he built a 4-bedroom in-patient home for those receiving treatment for Hansen’s disease. Situated just outside the capital, it houses people receiving treatment at the Jose Reyes Memorial Hospital. The property also has a car so the patients can drive to the hospital, which is some 45 minutes away, for their check ups.

He’s very clear about what he spent the income from these business on in the early days. “I knew that my wife was able to support my children …so I kept on dreaming of having enough money to buy my afford to the house [for the leprosy patients].”

While they now have a large home and not all Lazarte’s income goes into the in-patient home, Lazarte says that wants the Hansen’s Disease patients to learn to self-sufficient. They have a garden to plant vegetables for resale and recently received funding for a poultry project.

“I started my own pathway for my own direction,” he tells IPS.

Dr Maria Francia Laxamana, the Assistant Secretary in the Philippines Ministry of Health, eels strongly about the social exclusion and stigma experienced by the leprosy patients and is eager to make a notable change in the way the society perceives leprosy and those who live with it. Credit: Stella Paul/IPS

By Stella Paul
MANILA, Mar 3 2019 (IPS)

Dr. Maria Francia Laxamana is the Assistant Secretary in the Philippines ministry of health. With nearly two decades of  work both as a senior government official and also as an expert in several non-government organisations, Laxamana has deep insight into the issue of leprosy in this Southeast Asian nation and the challenges faced by those who are affected by the disease.

She feels strongly about the social exclusion and stigma experienced by the leprosy patients and is eager to make a notable change in the way the society perceives leprosy and those who live with it.

On the sidelines of the ongoing  Regional Assembly of Organisations of People Affected by Leprosy in Asia in Manila, Laxamana tells IPS how a new, holistic approach is needed to eradicate leprosy  and  improve the quality of life for all leprosy patients.

The three-day event was organised by the Philippine government-run Culion Sanitarium and General Hospital (CSGH), the Coalition of Leprosy Advocate of the Philippines, and the Sasakawa Memorial Health Foundation (SMHF) and its parent organisation the Nippon Foundation (TNF). Chairman of TNF and the World Health Organisation (WHO) goodwill ambassador for Leprosy Elimination, Yohei Sasakawa, was recently awarded the Gandhi Peace Prize by the Indian government for his work towards the elimination of leprosy worldwide.

She also informs how small measures like helping the children of leprosy-affected families can help remove societal stigma and  pave ways for social inclusion.

Inter Press Service (IPS): How and at what point is it decided to separate a family from the community?

Dr Maria Francia Laxamana (MFL): Previously, it was the government that decided. If a child tested positive, it would be separated from the mother. That used to be very harsh.  But now, its not like that anymore. Now if a baby shows the symptoms, the baby is tested and if the results are positive, then the baby is treated along with the mother and the father, but it stays with the parents. The treatment now is family based.

IPS: Typically, who are the leprosy patients in the Philippines?

MFL: Actually, generally those who are afflicted by leprosy are poor people. The main reasons are that  (lack of) nutrition, lack of awareness, remote location of their areas and lack of access to the services.

IPS: Have you met anyone whose condition matches this? How did it change you?

MFL: Yes. In the Autonomous Region of Muslim Mindanao, I met a woman – a mother of a 2-year-old boy. She already had visible physical symptoms and her hands were already deformed. I asked her, have you been receiving the treatment? She said, ‘No, I don’t go to the health center anymore because the staff there say I can infect them’.  So I told her, you have to be tested before anyone can say you are infective. But in my mind, I thought, so this is what is the progress we have had: we have done advocacy, awareness generation  – everything and yet the staff here are not willing to go near the patients.

That’s when I learnt that there had not been any amendment or reviews of the previous policies. I also asked myself, why is the budget for leprosy so low? And I came to think that there maybe also lapses in our government, maybe leprosy is not  a priority for  our government. Maybe they think that there isn’t a Hansen’s disease here in the Philippines anymore.

IPS: You had left the government job to work with the non governmental organisations, such as USAID, EU, Save the Children, among others. But you returned in 2016. How are you working differently this time?

MFL: When I was offered the position of the Assistant Secretary–which is a part of the Executive Committee (a high level decision-making group)–I thought that I could now make actual impact by discussing an issue with my fellow committee members and making constructive recommendations for deciding on a new policy. For example, while working for the non-government organisations, I discovered that we are making policies without any inclusion of inputs from local level, from the communities. And that is something I can now raise this issue to the national government.

IPS: What changes do you expect to see in next five years?

MFL: I have been talking to the sanatoriums in the Philippines. They have many in-house lepers who are not active anymore, they are just living in the sanatoriums compounds. What we did was turning some parts of the sanatoriums into general hospitals. We can fund the hospitals with facilities and equipment, so that outside patients can go in for treatment and the in-house patients can continue to get treated, but the outsiders will know that they are not active anymore. This will augment financial resources.

So, right now I am telling the sanatoriums that let us develop the standards based on the facilities , equipment and the human resources that they need. Once we have this standard, we can propose to the government for a specific, yearly budget  allocation for the leprosy programme.

IPS: You are very vocal about social inclusion of the affected people and their families. How can this be achieved ?

MFL: A great way to do this is to take a holistic approach by providing the affected people opportunities to education, employments, training etc. For example, in Culion, I met a leprosy affected family whose daughter wanted to go to college and become a nurse. So I said, maybe we can ask the governor of the state to provide her a scholarship. Now, if such a child is brought to a college and given the opportunity to study, she can interact with a hundred others there and inform them about her family, their life. People around her can understand that she is not infective – this way a new level of engagement can begin.

By Stella Paul
MANILA, Mar 3 2019 (IPS)

Dr Maria Francia Laxamana, assistant secretary of health in the Department of Health, Philippines outlines her recommendations for a leprosy country by 2020.

She spoke to IPS the first ever Regional Assembly of Organisations of People Affected by Leprosy in Asia.

The three-day regional event was organised by the Philippine government-run Culion Sanitarium and General Hospital (CSGH), the Coalition of Leprosy Advocate of the Philippines, and the Sasakawa Memorial Health Foundation (SMHF). The SMHF’s parent organisation the Nippon Foundation (TNF) has been playing a decisive role in leprosy elimination since as far back as the late 1960s. From 1995 to 1999, TNF distributed multidrug therapy for free across the globe in cooperation with the World Health Organisation. 

According to Laxamana, only one in every four in the Philippines seek out medical treatment for the disease and social stigma is one of the main reasons why they hide their condition.

For the Philippines to achieve the global target of reducing leprosy cases by 2020, it would be crucial to have policies that could look at the disease in the local context and can provide solutions that are locally applicable.

Dr. Takahiro Nanri, Executive Director of the Sasakawa Memorial Health Foundation, explained the need for leprosy CSOs to develop income-generating plans to cover gaps in sustainable funding. The Sasakawa Foundation is a major supporter of organisations for people affected by leprosy throughout Asia. Credit: Ben Kritz/IPS

By Ben Kritz
MANILA, Mar 3 2019 (IPS)

Strengthening the participation of persons affected by leprosy, or SPP, has proven to be an effective strategy in reaching out to often isolated sufferers in local communities throughout Asia. A significant challenge to civil society organisations, however, is finding enough management talent to maintain and expand the programmes.

Capacity building, providing organisational and management training to SPP participants doing the heavy lifting for leprosy advocacy groups in their work in individual countries, was highlighted as a significant priority by the participants at the Regional Assembly of Organisations of People Affected by Leprosy in Asia in Manila on Mar. 3.

Starting from scratch

The challenge is made even more difficult because many programme volunteers come from marginalised communities, or have had their own education interrupted by complications or social ostracism associated with leprosy.

Amar Bahadur Timalsina, president of International Association for the Integration, Dignity and Economic Advancement (IDEA), Nepal, told IPS that capacity-building is likely the biggest problem facing his organisation. “Many of the people working with us are completely uneducated, and some are even illiterate,” Timalsina said. Many of Nepal’s leprosy patients are found in poor communities, and face significant discrimination.

“Right now, we are focusing on building the capacity of our board members and programme managers,” Timalsina said. “Fortunately, we are able to work with the Leprosy Mission Nepal, who are able to provide us with expertise in business management, finance, and social programme management.”

The discrimination that prevents leprosy sufferers from accessing education and seeking out medical and social assistance in Nepal is perhaps a bit stronger than in some other countries, as it is still part of the law in one respect. In his presentation to conference delegates, Timalsina highlighted IDEA Nepal’s efforts to amend a constitutional prohibition of marriage between leprosy sufferers and unaffected persons, and to include information on leprosy in the country’s health education curriculum.

Differing approaches

While the capacity-building challenge is a common priority, organisations in different countries have adopted different approaches to addressing it. For example, the focus of PerMaTa Indonesia, which means Gem in Bahasa, places heavy emphasis on emotional and social support for persons affected by leprosy. The organisation also directs much of its attention to youth. PerMaTa’s Yuliati explained that the social focus helped leprosy patients gain acceptance, which is particularly important for young people to have continued access to education. Over the long term, it will help the skills capacity of the organisation; in the short term, however, PerMaTa must still rely on some degree of outside expertise.

China’s Handa faces a similar challenge, but has actually been able to quantify its need for expertise. The organisation, which has about 3,500 members across 14 provinces and serves nearly 9,500 beneficiaries, has structured its board so that one-third of its members are private-sector professionals, Handa representative Qi Xiuli told the conference delegates. With this arrangement, overall policy objectives are generated by persons affected by leprosy who make up two-thirds of the board, while the professional board members take charge of practical implementation of the organisation’s initiatives.

Capacity tied to financial sustainability

Beyond the day-to-day goal of carrying out programmes and managing organisations in an efficient way, capacity-building is key to helping the various organisations secure financial sustainability.

In a group discussion, Dr. Arturo Cunanan, Director of the Philippines’ Culion Sanitarium and General Hospital and the country’s foremost leprosy advocate, pointed out the need for organisations to secure a substantial initial investment in order to be able to work on sustainability. Cunanan suggested that this might be one way organisations could address their capacity gaps.

“That initial investment may be in the form of a financial investment, but it could also be a technical or capacity investment,” Cunanan told the conference delegates.

Sasakawa Memorial Health Foundation (SMHF) Executive Director Dr. Takahiro Nanri pointed out, however, that a financial investment would inevitably be limited. “You can start off with grants from government or non-government sources, you can gather some financial resources in the form of membership fees, but these are limited,” Nanri said. “In order to be truly sustainable, the organisation has to create an income-generating programme,” and for that, the organisation would need sufficient expertise. SMHF is a sister organisation of the Nippon Foundation (TNF), one of Japan’s largest foundations. Since the early 1960s, TNF has been actively working to eradicate leprosy across the globe and this has included providing free multidrug therapy through the World Health Organisation.

Having that capacity, however, would make achieving sustainability much easier, boosting the organisation’s credibility to potential donors. “We know you probably couldn’t generate real income to sustain your organisation for quite some time,” Nanri told the delegates. “But we [Sasakawa Foundation] could justify supporting you for, say, three years, if we could see that you were able to develop a business plan that would be viable in that amount of time.” Expertise in business and management is needed to be able to develop such plans.

Fortunately, most organisations seem to be successfully balancing the goals of becoming self-reliant and accessing enough expert help in planning and carrying out financial and operational strategies. In the group discussions, however, all the conference participants agreed that greater public awareness of their work would greatly benefit their respective organisations’ goals.

Coalition of Leprosy Associations of the Philippines (CLAP) community outreach organisers Jennifer Quimno (left) and Michelle Ann Oreo (right). Credit: Ben Kritz/IPS

By Ben Kritz
MANILA, Mar 3 2019 (IPS)

Jennifer Quimno could put anyone at ease. So when she travels across the Philippines as part of peer to peer programme that helps identify new leprosy cases, people generally allow her to examine them.

“We met a young boy, about 16 years of age, who had symptoms of leprosy, and we needed to examine and send pictures of his skin rashes to the doctors for diagnosis,” Quimno told IPS. Quimno, herself a former leprosy patient, was able to put the teenager at ease. “One of his rashes was on his buttocks. He was a little embarrassed to show it at first, but when I asked him nicely, he let us take a look.”

That unique sensitivity toward persons affected by leprosy is a valuable resource in identifying new cases and encouraging patients to seek treatment, Frank Onde, the president of the Coalition of Leprosy Advocates of the Philippines (CLAP) explained.

“Strengthening the participation of persons affected by leprosy is the most effective way to reduce the burden on government health departments,” explained Onde, one of the keynote speakers at the Regional Assembly of Organisations of People Affected by Leprosy in Asia. The assembly is being held in Manila, Philippines, Mar. 3 to 5.

Helping their own

Under the programme organised by CLAP, former patients are trained in community outreach and help to identify potential cases for diagnosis and treatment. Using people who have personal experience with the disease helps to reduce the reluctance of leprosy sufferers to seek treatment, Onde said. Not only can the outreach workers relate on a personal level with others affected by leprosy, also known as Hansen Disease, their own experience also helps healthcare personnel make accurate diagnoses, he added.

Launched in the cities of Manila and Cebu in November 2018, the programme, ‘Strengthening Participation of People Affected by Leprosy in Leprosy Service’, known as SPP, is currently working among known affected communities. It pursues the twin objectives of gathering demographic information to update the Philippine Department of Health database and identifying relapse or new leprosy cases.

Quimno, who is a field health officer with the regional Department of Health office in Cebu, said that personal experience helps to build trust. “We know what they are experiencing,” she explained. “We can also tell them exactly what the consequences of not seeking timely treatment will be.”

Coalition of Leprosy Associations of the Philippines (CLAP) president Frank Onde (left), and CLAP volunteers Mark Anthony Esparas (centre) and Ariel Lazarte (right). Credit: Ben Kritz/IPS

Grassroots connections

While CLAP’s activities are officially supported at the national government level—the coalition is represented on the Department of Health’s National Leprosy Advisory Board—it is at the smallest level of government where the initiatives of the coalition’s individual organisations are substantially embraced.

“We coordinate with local government units at the municipal and barangay [village] level, including the mayor’s office and the city or municipal health official’s office,” Quimno explained. “Since our individual member groups are the ones doing most of the work right in their own communities, they are really embraced by their local officials.”

Mark Anthony “Macoy” Esparas, a CLAP outreach volunteer in Manila, agreed. “We do receive a lot of help from the local governments,” he told IPS. “What we do is helping them as well.”

CLAP advisor Joseph “Boyet” Ongkiko highlighted the success of one CLAP member group in Cotabato, Mindanao, southern Philippines, which formed a cooperative of motorcycle taxi drivers to provide livelihoods for people affected by leprosy. “At first, the community was reluctant to patronise the drivers,” Ongkiko told the conference attendees. “Now, they have been accepted so well, that the cooperative even has non-Hansenite members.”

Other livelihood activities pursued by the member groups of CLAP—the coalition represents a total of 19 local organisations across the Philippines—include production and marketing of various household products, clothing, and small-scale farming.

Financial sustainability challenge

While CLAP’s initiatives are steadily gaining traction among people affected by leprosy and local communities alike, the organisation is concerned about its prospects for sustainability.

“That is our biggest challenge right now,” Onde said. “At the moment, our financial support is really only coming from the Sasakawa [Memorial Health] Foundation (SMHF), and we would like to better secure our future.” SMHF, along with its parent body the Nippon Foundation (TNF) are co-sponsors of the assembly along with the Philippine government-run Culion Sanitarium and General Hospital (CSGH) and the Coalition of Leprosy Advocate of the Philippines (CLAP).

Financial sustainability is a common worry for leprosy advocacy groups throughout the region, but in the Philippines, Onde explained, CLAP and other organisations face a unique challenge. In 2013, a large-scale conspiracy dubbed the “Pork Barrel” scam and involving the misappropriation of billions in legislators’ development funds was exposed. Funds intended for local projects were diverted to fabricated non-government organisations and then pocketed by the scam perpetrators, including a number of lawmakers.

“Since the Pork Barrel scam, it has become difficult for a lot of civil society groups, not only us, to attract donors,” Onde said. “So one of our important tasks is to try to share information about what we’re doing to convince potential financial supporters that we are a legitimate, sustainable organisation.”

One advantage for CLAP is its close connection to the government’s own leprosy control efforts. “We have a consultative role in the government’s National Leprosy Control Programme and the Leprosy Roadmap 2016-2022,” Onde said. “That does help give us some credibility, and of course, we strive to do good work to match that.”

Amar Bahadur Timalsina, president of IDEA, Nepal, a group founded by people with leprosy for people with leprosy, is in agreement that there needs to be greater inclusion for those affected by the disease. Timalsina was affected by disease, also known as Hansen’s disease, as a child. Credit: Stella Paul/IPS

By Stella Paul
MANILA, Mar 3 2019 (IPS)

Growing up in Kathmandu, Nepal, Amar Bahadur Timalsina wasn’t allowed to attend school as a young boy because he was affected by leprosy. But decades later, after treatment and being able to re-integrate into his community, the boy who was once denied an education is now inspiringly the principal of a school of 400 students.

“I suffered from leprosy when I was 12 years old. At that time I was forced to leave my village and my community,” Timalsina told IPS.

But after that Leprosy Mission Nepal supported me with a recommendation letter, he was subsequently able to attend an orphanage “where I got an opportunity to continue my studies.”

“At my school there are 400 students and 30 staff. Now if I go to my village, there is no discrimination, no stigma and everyone welcomes me like any other person,” he said.

Timalsina, who is president from the International Association for the Integration, Dignity and Economic Advancement (IDEA), Nepal, a group founded by people with leprosy to support others with the disease, is in agreement that there needs to be greater inclusion for those affected by it.

Participants at the Regional Assembly of Organisations of People Affected by Leprosy in Asia kicked off today, Mar. 3 in Manila, Philippines, made a vocal appeal to adopt and embrace greater social inclusion and build a stigma-free society for those affected by leprosy

The three-day regional event, which is the first of its kind to be held, was organised by the Philippine government-run Culion Sanitarium and General Hospital (CSGH), the Coalition of Leprosy Advocate of the Philippines, and the Nippon Foundation (TNF) and its sister organisation, the Sasakawa Memorial Health Foundation (SMHF). Since the late 1960s TNF has been actively supporting the fight to eradicate leprosy worldwide including providing free multidrug therapy through the World Health Organisation.

Participants at the Regional Assembly of Organisations of People Affected by Leprosy in Asia kicked off today, Mar. 3 in Manila, Philippines, made a vocal appeal to adopt and embrace greater social inclusion and build a stigma-free society for those affected by leprosy. Credit: Stella Paul/IPS

“The biggest challenge before us today is stigma,” said Dr. Maria Francia Laxamana, Assistant Secretary in the Philippines Department of of Health and one of the key speakers at the conference.

According to Laxamana, only one in every four in the Philippines seek out medical treatment for the disease and social stigma is one of the main reasons why they hide their condition. So, for the Philippines to achieve the global target of reducing leprosy cases by 2020, it would be crucial to have policies that could look at the disease in the local context and can provide solutions that are locally applicable.

For example, we should not be looking at leprosy just as a disease, but take a holistic approach and provide the affected people with a package of support that includes not only drugs, but also education, vocational skill trainings and employment. Such a package will not only help improve their quality of life, but also pave the way for greater social inclusion, resulting in removal of social stigma, she said.

“Integration is very important and we as a foundation, hope, we can contribute to the integration [of people affected by leprosy] with the society,” said Dr. Takahiro Nanri, Executive Director of SMHF and the second key speaker of the day. Reiterating the dedicated and continuous support of the foundation to eradication of leprosy, Nanri informed that SMHF has been organising regional assemblies across the world, including Africa, Latin America and the current one in Asia, to facilitate greater engagement and participation of all experts and leaders working on the disease.

Alice Cruz, United Nations Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, pointed out that social exclusion and stigma was having a devastating effect particularly on the children of those affected by Hansen’s disease. Addressing the assembly virtually, Cruz emphasised the need for sensitisation of school teachers because in many countries children with leprosy were expelled from schools by  the teachers themselves.

“Teachers in endemic ares should be trained on leprosy ad the schools should be one of the first places to raise awareness on leprosy’s signs and symptoms, but also on the human dignity and rights of the persons affected,” she said.

Dr Arturo Cunanan, chief of CSGH, said that while those working in the field always talk about the social stigma and discrimination that people with leprosy face, the question is how to measure this. “Usually, government will not address issues of human rights, not unless they know about the issue of burden.”

There are representatives from six nations in the region attending  the assembly: Philippines, Japan, Indonesia, China, Nepal and Kiribati. While some are working with the government at the policy level, others are working directly with the affected communities and are expected to  share their respective experiences and impacts to find a common, collective way to fight leprosy more effectively in the future.