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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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”.