Nothing For Us, Without Us – Hansen’s Disease-Affected Tell International Gathering

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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

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 Emergence of a Global Voice for Hansen’s Disease Affected Persons

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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

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.

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.

 

‘Join Me on this Journey’ to Eliminate Leprosy – WHO Ambassador

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YOHEI SASAKAWA, World Health Organization’s (WHO) Goodwill Ambassador for Leprosy Elimination and chairperson of The Nippon Foundation, speaks to IPS correspondent Stella Paul about his decades long campaign to achieve zero leprosy and eliminate stigmatisation of those affected.

MANILA, Sep 10 2019 (IPS) – Octogenarian Yohei Sasakawa has travelled to more than 90 countries across the globe; from areas of conflict, to the jungles of Brazil, shaking hands, hugging and washing the feet of Hansen’s disease-affected people. His message is simple: Stop stigmatisation and eliminate the disease.

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

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

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

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

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

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

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

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

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

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

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

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Awareness Should be the Priority in Public Health Efforts against Leprosy

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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

MANILA, Sep 9 2019 (IPS) – Increasing awareness of the continuing existence of Hansen’s Disease (leprosy) is critical to sustaining effective public health efforts against the disease, eliminating the social stigma associated with it, and halting its transmission.

That was the consensus reached by participants at the Global Forum of People’s Organisations on Hansen’s Disease in Manila on Sept. 9, following a lecture by Dr. Arturo Cunanan, the Chief Medical Officer of the Culion Sanitarium and General Hospital in the Philippines.The forum was organised by Japan’s Sasakawa Health Foundation (SHF) and The Nippon Foundation. 

Cunanan noted that for several years, the number of new cases has plateaued at about 200,000 per year, a troubling statistic that he attributed in part to a lack of awareness among public health bodies as well as people affected by the disease.

The social stigma attached to leprosy is a barrier to early detection of the disease, which is the key to slowing its rate of transmission. Cunanan said that the average length of time between the onset of the disease and the beginning of treatment is about two years.

This happens because on the one hand, patients are unaware of medical help available to them, unwilling, or otherwise unable to seek treatment due to stigma; and on the other, a lack of expertise and resources on the part of public health departments due to a misunderstanding of the persistence of the disease.

Not a priority

“Many public health and government officials confuse elimination and eradication,” Cunanan told the forum participants. “They think that leprosy being eliminated as a public health problem means it has been eradicated, so they are surprised when they learn it still exists.”

What this has resulted in is a decline in the material and human resources available for combatting leprosy. “Leprosy will never be a priority” for government health programmes, Cunanan said. “There are more pressing problems, bigger emergencies.”

The Philippines is a good example. The disease is considered a minor problem, and the number of new cases each year is relatively low – there were 2,108 new cases in 2017, out of a national population of about 107 million – but has been relatively consistent year after year, “between 2,000 and about 3,000”.

Because of the mistaken belief that leprosy has either disappeared entirely or has become rare, medical expertise and programmes have disappeared from public health institutions. That in turn has degraded the supervision and monitoring needed to identify new cases and prevent the transmission of the disease, Cunanan explained.

Lucy Massao, a member of the Tanzania Leprosy Association (TLA), noted that the stigma and lack of understanding of leprosy among the public in her country was also reflected in the shortcomings of the public health framework.

“We at TLA really spend a lot of time trying to educate people, including the officials,” she said. “Many patients, the health officials refer to us, because they cannot offer much support except for the medications. But they are improving, through working with us.”

Role of people’s organisations

Public health authorities elsewhere are also gradually recognising the value of the organisations of people who have been affected by leprosy. “You are the best experts,” Cunanan told the forum participants, “Because you have first-hand experience.”

Organisation members can assist in early detection and outreach, Cunanan explained, and help public health authorities improve their services to leprosy patients.

In the Philippines, collaboration with people’s organisations such as Coalition of Leprosy Advocates of the Philippines has actually been included in official policy. Philippine Assistant Secretary of Health Dr. Maria Laxamana, who delivered the keynote address on the forum’s first day, noted that “intensified collaborative efforts among [government] agencies and with private partners” is a key objective of the government’s National Leprosy Control Programme.

Dr. V.R. Pemmaraju of the World Health Organisation’s (WHO) Global Leprosy Programme said that there has been a marked growth in talent and inclusiveness among people’s organisations, which is increasing their effectiveness in supporting and extending public health efforts towards leprosy.

“What we’re seeing, and you can see it at this forum, is that the groups are more global, include more women, and are more educated about the disease and the support needed,” Pemmaraju told IPS.

“This has been very good from the point of view of the WHO, because of the added social aspect of the Global Leprosy Partnership,” he explained. Where people’s organisations still need to develop is in working effectively with governments.

“They [the organisations] have the experience and knowledge about leprosy, but what I’ve seen is that most need more skills in negotiating and engaging with government officials,” Pemmaraju said. “There is still some gap in inclusion of people’s organisations in forming public health policy [related to leprosy], and developing those skills would help to reduce that.”

Pemmaraju is upbeat about the prospects of people’s organisations gaining a bigger voice in public health policy towards leprosy.

“In each of these meetings, I see the groups growing globally and gaining more influence,” Pemmaraju said. “With the engagement of the people’s organisations, we [the WHO] are optimistic that we can achieve our goal of ‘zero leprosy.’”

 

The Business of Social Enterprise

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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

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.”

 

Global Network Key to Strengthening Leprosy Organisations

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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

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 September 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 ofMORHAN’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.

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”.