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.

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.

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 

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.”

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.”

The Philippines has the highest incidence of leprosy of any country in the region – about 1,700 new cases have been identified in each of the last three years. Credit: moyerphotos/CC by 2.0

By Ben Kritz
MANILA, Mar 2 2019 (IPS)

The stubborn challenge of diagnosis and treatment of leprosy among difficult to reach populations in the Philippines should soon become easier with the rollout of a mobile app connecting field health workers with physicians and clinics.

Officially launched at the end of January after years of testing, the app was created by Philippine developer MetaHelix in cooperation with the Department of Health (DOH) and pharmaceutical company Novartis. It will allow barangay (village) health workers to connect remotely with specialists to confirm diagnoses and plan treatment of isolated leprosy patients.

First launched as a pilot in 2014, the Leprosy Alert and Response Network System (LEARNS) app allows healthcare workers to “send images of suspect leprosy lesions and symptoms to a specialist”.

“LEARNS promotes early case finding and helps reduce delays in diagnosis and treatment,” Novartis said in a statement when the app was launched. “LEARNS also provides data for disease surveillance, patient education, and report generation.”

The new mobile application that was tested in the Philippines for more than a year highlights ongoing efforts against leprosy, or Hansen’s Disease, which is sometimes called “the world’s oldest diagnosed disease”.

In most of the world leprosy is largely considered a disease of the past. According to the World Health Organisation (WHO), leprosy was eliminated as a global public health problem in 2000 because it had a prevalence of less than 1 case per 10,000 people.

However, one of the few remaining places where the disease remains an elevated public concern is the Philippines, which makes the country an appropriate venue for the “Regional Assembly of Organisations of People Affected by Leprosy in Asia,” being held in Manila from Mar. 3 to 5.

The conference is a joint project of the Philippine government-run Culion Sanitarium and General Hospital (CSGH), the Coalition of Leprosy Advocate of the Philippines (CLAP), and the Sasakawa Memorial Health Foundation (SMHF)/the Nippon Foundation (TNF), and seeks to find ways to overcome the last stubborn obstacles to completely eradicating leprosy.

The issues faced by public health advocates and victims of the disease in the Philippines are emblematic of problems faced throughout the region: Difficult detection and treatment of often isolated sufferers, a lack of public awareness and understanding of leprosy, and low prioritisation of public health efforts to treat leprosy and its social impact on the part of governments.

Hidden in plain sight

The treatment of leprosy in the Philippines throughout most of the country’s history has been typical of the way societies everywhere have handled it. Largely ostracised by communities and even their own families, leprosy sufferers were isolated in dedicated facilities and kept out of sight. The two best-known facilities in the Philippines are the CSGH, once the largest facility of its kind in the world, located on Culion Island in the Western Philippines; and the Tala Sanitarium – officially known as the Dr. Jose N. Rodriguez Memorial Hospital – located in Caloocan, a distant suburb of Manila.

Although both facilities are still technically operational, better understanding of the disease and its low communicability has allowed health officials to shift most of their efforts to community-based treatment. According to Dr. Mary Ann Navarro, a Department of Health administrator in Palawan, where a minor outbreak of leprosy among indigenous people was detected in late 2017, in sitio treatment is often the only feasible approach.

“Better treatment options and the relatively low risk of transmission means that it’s not necessary to isolate patients,” Navarro told IPS. “Many cases, such as the ones discovered last year here [in Palawan] are among people with little access to healthcare, so our best option is to bring treatment to them.”

“That also helps to reduce some of the social stigma patients face, by giving us a chance to educate their communities and eliminate some of the fear of the disease,” she added. “Changing social attitudes still is a big challenge, however.”

Situations like the outbreak in Palawan, where eight cases were discovered among an indigenous community in the southern part of the island, are relatively rare. Most cases, according to a local government official, are individuals who remain in the community, but often struggle for acceptance.

“To our knowledge, we have about 10 people from this barangay who come to the health centre for treatment,” Alexander “Bong” Medina, chairman of a barangay in San Jose Del Monte in Bulacan Province north of Manila told IPS.

“The treatment is provided free, and we do our best to assist them socially, but it’s difficult,” Medina explained. “These are poor, what you might call marginalised people to begin with, and they often don’t realise there is assistance available until it’s too late, or they are afraid to come in because of the shame. And we don’t really have resources to go seek them out.”

Persistent problem

The Western Pacific Regional Office of the WHO views the Philippines as somewhat of an outlier in terms of leprosy incidence. The Philippines has the highest incidence of leprosy of any country in the region – about 1,700 new cases have been identified in each of the last three years, although that rate is half what it was a decade ago – and is largely responsible for the region being behind the rest of the world in achieving the 1 in 10,000 benchmark.

According to data from the Philippines’ Department of Health, although the overall prevalence of leprosy is less than 0.4 cases per 10,000, 1,660 new cases were identified in 2017 alone, with about 6.7 percent of those being children under the age of 15. This Southeast Asian nation, which comprises some 7,000 islands, has a population of over 104 million.

To address the problem, the Philippine government in 2016 launched the National Leprosy Control Programme (NLCP), a multi-agency effort involving the DOH, WHO, and a number of private sector and NGO partners with the goal of “a leprosy-free Philippines by 2022.”

To better calibrate the programme’s response and identify pockets where leprosy is still prevalent, the first major initiative of the NLCP is the completion of a baseline population survey, being conducted in cooperation with the Regional Institute for Tropical Medicine and expected to be completed sometime this year.

The programme is also working to raise public awareness and understanding of the disease by promoting various activities, such as World Leprosy Day in January, a national-level Leprosy Control Week in February, and National Skin Disease Detection and Prevention Week, which is held the second week of November.