Global Network Key to Strengthening Leprosy Organisations

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Human Rights

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”.

 

Prejudice and Discrimination, the Uncured Ills of Leprosy

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Health

Nippon Foundation President Yohei Sasakawa and Socorro Gross, Pan American Health Organisation representative in Brazil, hold a press conference in Brasilia at the end of a 10-day visit to this country by the Japanese activist who is also World Health Organisation Goodwill Ambassador for Leprosy Elimination. Credit: Mario Osava/IPS

Nippon Foundation President Yohei Sasakawa and Socorro Gross, Pan American Health Organisation representative in Brazil, hold a press conference in Brasilia at the end of a 10-day visit to this country by the Japanese activist who is also World Health Organisation Goodwill Ambassador for Leprosy Elimination. Credit: Mario Osava/IPS

BRASILIA, Jul 11 2019 (IPS) – “The ambulance team refused to take my sick friend to the hospital because he had had Hanseniasis years before,” said Yohei Sasakawa, president of the Nippon Foundation, at one of the meetings held during his Jul. 1-10 visit to Brazil.


His friend was completely cured and had no visible effects of the disease, but in a small town everyone knows everything about their neighbours, he said.

This didn’t happen in a poor country, but in the U.S. state of Texas, only about 20 years ago, Sasakawa pointed out to underline the damage caused by the discrimination suffered by people affected by Hansen’s Disease, better known as leprosy, as well as those who have already been cured, and their families.

“The disease is curable, its social damage is not,” he said during a meeting with lawmaker Helder Salomão, chair of the Human Rights Commission in Brazil’s lower house of Congress, to ask for support in the fight against Hanseniasis, the official medical name for the disease in Brazil, where the use of the term leprosy has been banned because of the stereotypes and stigma surrounding it.

The highlight of the mission of Sasakawa, who is also a World Health Organisation (WHO) Goodwill Ambassador for Leprosy Elimination, was a meeting on Monday Jul. 8 with President Jair Bolsonaro, who posted a message on Facebook during the meeting, which had nearly 700,000 hits as of Thursday Jul. 11.

In the 13-and-a-half minute video, Bolsonaro, Sasakawa, Health Minister Luiz Mandetta and Women, Family and Human Rights Minister Damares Alves issued a call to the authorities, organisations and society as a whole to work together to eradicate the disease caused by the Mycobacterium Leprae bacillus.

A preliminary agreement emerged from the dialogues held by the Japanese activist with members of the different branches of power in Brasilia, to hold a national meeting in 2020 to step up the fight against Hanseniasis and the discrimination and stigma faced by those affected by it and their families.

The idea is a conference with a political dimension, with the participation of national authorities, state governors and mayors, as well as a technical dimension, said Carmelita Ribeiro Coriolano, coordinator of the Health Ministry’s Hanseniasis Programme. The Tokyo-based Nippon Foundation will sponsor the event.

Brazil has the second highest incidence of Hansen’s Disease in the world, with 27,875 new cases in 2017, accounting for 12.75 percent of the world total, according to WHO. Only India has more new cases.

The government established a National Strategy to Combat Hanseniasis, for the period 2019-2022, in line with the global strategy outlined by the WHO in 2016.

Brazilian Minister of Women, Family and Human Rights Damares Alves receives a gift from Yohei Sasakawa, president of the Nippon Foundation, at the beginning of a meeting in Brasilia, in which the minister promised to strengthen assistance to those affected by Hansen's Disease, including the payment of compensation to patients who were isolated in leprosariums or leper colonies in the past. Credit: Mario Osava/IPS

Brazilian Minister of Women, Family and Human Rights Damares Alves (L) receives a gift from Yohei Sasakawa, president of the Nippon Foundation, at the beginning of a meeting in Brasilia, in which the minister promised to strengthen assistance to those affected by Hansen’s Disease, including the payment of compensation to patients who were isolated in leprosariums or leper colonies in the past. Credit: Mario Osava/IPS

Extensive training of the different actors involved in the treatment of the disease and plans at the state and municipal levels, tailored to local conditions, guide the efforts against Hansen’s Disease, focusing particularly on reducing cases that cause serious physical damage to children and on eliminating stigma and discrimination.

Before his visit to Brasilia, Sasakawa, who has already come to Brazil more than 10 times as part of his mission against Hansen’s Disease, toured the states of Pará and Maranhão to discuss with regional and municipal authorities the obstacles and the advances made, in two of the regions with the highest prevalence rate.

“In Brazil there is no lack of courses and training; the health professionals are sensitive and give special attention to Hanseniasis,” said Faustino Pinto, national coordinator of the Movement for the Reintegration of People Affected by Hanseniasis (MORHAN), who accompanied the Nippon Foundation delegation in Brasilia.

“Promoting early diagnosis, to avoid serious physical damage, and providing better information to the public and physical rehabilitation to ensure a better working life for patients” are the most necessary measures, he told IPS.

Pinto’s case illustrates the shortcomings in the health services. He was not diagnosed as being affected with Hansen’s Disease until the age of 18, nine years after he felt the first symptoms. It took five years of treatment to cure him, and he has serious damage to his hands and joints.

His personal plight and the defence of the rights of the ill, former patients and their families were outlined in his Jun. 27 presentation in Geneva, during a special meeting on the disease, parallel to the 41st session of the Human Rights Council, the highest organ of the Office of the United Nations High Commissioner for Human Rights.

Pinto is an eloquent advocate of the use of Hanseniasis or Hansen’s Disease, rather than leprosy, a term historically burdened with religious prejudice and stigma, which aggravates the suffering of patients and their families, but continues to be used by WHO, for example.

Yohei Sasakawa (2nd-L), president of the Nippon Foundation, accompanied by two members of his delegation, took part in a meeting with Congressman Helder Salomão (C), chair of the Human Rights Commission of the Brazilian Chamber of Deputies, who pledged to support initiatives to eliminate leprosy in his country. Faustino Pinto (2nd-R), national coordinator of the Movement for the Reintegration of Persons Affected by Hanseniasis (MORHAN), also participated. Credit: Mario Osava/IPS

Yohei Sasakawa (2nd-L), president of the Nippon Foundation, accompanied by two members of his delegation, took part in a meeting with Congressman Helder Salomão (C), chair of the Human Rights Commission of the Brazilian Chamber of Deputies, who pledged to support initiatives to eliminate leprosy in his country. Faustino Pinto (2nd-R), national coordinator of the Movement for the Reintegration of Persons Affected by Hanseniasis (MORHAN), also participated. Credit: Mario Osava/IPS

Discrimination against people with the disease dates back to biblical times, when it was seen as a punishment from God, said Sasakawa during his meeting with Minister Damares Alves, a Baptist preacher who describes herself as “extremely Christian”.

In India there are 114 laws that discriminate against current or former Hansen’s Disease patients, banning them from public transport or public places, among other “absurdities”, he said.

In India, they argue that these are laws that are no longer applied, which justifies even less that they remain formally in force, he maintained during his meetings in Brasilia to which IPS had access.

Prejudice and misinformation not only subject those affected by the disease to exclusion and unnecessary suffering, but also make it difficult to eradicate the disease by keeping patients from seeking medical care, activists warn.

His over 40-year battle against Hansen’s Disease has led Sasakawa to the conclusion that it is crucial to fight against the stigma which is still rife in society.

He pressed the United Nations General Assembly to adopt in 2010 the Resolution for the Elimination of Discrimination against Persons Affected by Leprosy and their Families.

He said these attitudes and beliefs no longer make sense in the light of science, but persist nonetheless.

Treatment making isolation for patients unnecessary in order to avoid contagion has been available since the 1940s, but forced isolation in leprosariums and leper colonies officially continued in a number of countries for decades.

In Brazil, forced segregation officially lasted until 1976 and in practice until the following decade.

With multi-drug treatment or polychemotherapy, introduced in Brazil in 1982, the cure became faster and more effective.

Information is key to overcoming the problems surrounding this disease, according to Socorro Gross, the Pan American Health Organisation (PAHO) representative in Brazil who also held meetings with the Nippon Foundation delegation.

“Communication is essential, the media has a decisive role to play” to ward off atavistic fears and to clarify that there is a sure cure for Hansen’s Disease, that it is not very contagious and that it ceases to be so shortly after a patient begins to receive treatment, Gross, a Costa Rican doctor with more than 30 years of experience with PAHO in several Latin American countries, told IPS.

 

A Lifelong Battle Against the “Disease of Silence”

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Health

Mario Osava interviews YOHEI SASAKAWA, president of the Nippon Foundation

Yohei Sasakawa, president of the Nippon Foundation, is interviewed by IPS in the Brazilian capital, where he concluded a tour of the country aimed at promoting the elimination of Hansen's Disease, better known as leprosy, and also the stigma that make it the "disease of silence.” Credit: Mario Osava/IPS

Yohei Sasakawa, president of the Nippon Foundation, is interviewed by IPS in the Brazilian capital, where he concluded a tour of the country aimed at promoting the elimination of Hansen’s Disease, better known as leprosy, and also the stigma that make it the “disease of silence.” Credit: Mario Osava/IPS

BRASILIA, Jul 10 2019 (IPS) – Yohei Sasakawa has dedicated half of his 80 years of life to combating the “disease of silence” and is still fighting the battle, as president of the Nippon Foundation and World Health Organisation (WHO) goodwill ambassador for elimination of leprosy, formally known as Hansen’s Disease.


His current emphasis is on combating the discrimination, prejudice and stigma that aggravate the suffering of people with leprosy, their families and even those who have already been cured. They also stand in the way of treatment, because people with the disease keep silent out of fear of hostility, he told IPS in an interview in the Brazilian capital.

“I travel around the world and speak out against the discrimination that marginalises those affected by the disease. But these are prejudices that have existed for 2,000 years; they cannot be overcome in two or three years. Many share my viewpoint and accompany me in the struggle. One day the discrimination will end. It is more difficult to cure the disease that plagues society than the illness itself. My effort is to hold a dialogue with presidents and ministers, people in positions of leadership, so that my message acquires political strength and can lead to a solution.”

Sasakawa visited Brazil Jul. 1 to 10, as part of his activism aimed at reducing the prevalence and social impacts of a disease stigmatised since biblical times. In Brasilia, he mobilised President Jair Bolsonaro, legislators and health and human rights officials to promote more intense efforts against the disease.

The idea of holding a national conference on Hansen’s Disease emerged from the meetings, with the political objective of disseminating knowledge and bolstering the disposition to eradicate prejudice, and the technical goal of improving strategies and efforts against the disease.

Brazil is second only to India with respect to the number of new infections diagnosed each year. The country implemented a National Strategy to Combat Hanseniasis from 2019 to 2022, with plans also at the level of municipalities and states, tailored to the specific local conditions.

The Tokyo-based Nippon Foundation is funding several projects and is preparing to support new initiatives in Brazil.

Brazil and Japan abolished the word leprosy from their medical terminology, due to the stigma surrounding it, and adopted the term Hanseniasis to refer to the disease caused by the Mycobacterium leprae bacillus. Sasakawa used this name during his interview with IPS, even though the WHO continues to employ the term leprosy.

IPS: Why did you choose as your mission the fight against Hansen’s Disease and the different kinds of harm it causes to patients and their families?

YOHEI SASAKAWA: It started with my father, the founder of the Nippon Foundation, who as a young man fell in love with a young woman who suddenly disappeared when she was taken far away and put in isolation. My father was appalled by the cruelty and, driven by a spirit of seeking justice, he started this movement. No one discussed the reason she was taken away, but I sincerely believe it was because she had Hanseniasis.

Later my father built hospitals in different places, including one in South Korea, where I accompanied him to the inauguration. On that occasion I noticed that my father touched the hands and legs of the patients, even though they had pus. He hugged them. That impressed me.

I was surprised for two reasons. It frightened me that my father so easily embraced people in those conditions. Besides, I wasn’t familiar with the disease yet. I saw people with a sick, unhealthy pallor. They were dead people who were still alive, the living dead, abandoned by their families.

I was filled with admiration for my father’s work and immediately decided that I should continue it.

IPS: What are the main difficulties in eradicating Hanseniasis?

YS: In general, when faced with a problem specialists and intellectuals come up with 10 reasons why it’s impossible to solve. I have the strong conviction that it is possible, and that’s why I address the problem in such a way that I can identify it and at the same time find a solution.

The people who find it difficult generally work in air-conditioned offices pushing around papers, studying the data. The most important thing is to have the firm conviction that the problem can be solved and then begin to take action.

The president of the Nippon Foundation, Yohei Sasakawa (C) is seen meeting with the president of Brazil, Jair Bolsonaro (L), in an IPS screen capture from the video that the president broadcast on Facebook to raise public awareness about the importance of eliminating Hansen's Disease, better known as leprosy, and eradicating the prejudice faced by patients and their families. Credit: IPS

The president of the Nippon Foundation, Yohei Sasakawa (C) is seen meeting with the president of Brazil, Jair Bolsonaro (L), in an IPS screen capture from the video that the president broadcast on Facebook to raise public awareness about the importance of eliminating Hansen’s Disease, better known as leprosy, and eradicating the prejudice faced by patients and their families. Credit: IPS

Since the 1980s more than 16 million people have been cured of Hansen’s Disease. Today, 200,000 patients a year are cured around the world.

IPS: What role do prejudice, stigma and discrimination play in the fight against this disease?

YS: That is a good question. After working for many years with the WHO, focusing mainly on curing the disease, I realised that many people who had already been cured could neither find work nor get married; they were still suffering the same conditions they faced when they were sick.

I concluded that Hanseniasis was like a two-wheeled motorcycle – the front one is the disease that can be cured and the back one is the prejudice, discrimination and stigma that surround it. If you don’t cure both wheels, no healing is possible.

In 2003, I submitted to the United Nations Commission on Human Rights a proposal to eliminate discrimination against Hanseniasis. After seven years of paperwork and procedures, the 193-member General Assembly unanimously approved a resolution to eradicate this problem that affects the carrier of the disease as well as those who have been cured, and their families.

But this does not mean that the problem has been solved, because prejudice and discrimination are the disease plaguing society.

People believe that Hanseniasis is a punishment from God, a curse, a hereditary evil. It’s hard to eradicate this judgment embedded in people’s minds. Even today there are many patients who have recovered and are totally healed, who cannot find a job or get married. In spite of the new laws, their conditions do not improve, because of the prejudice in people’s hearts.

In Japan, several generations of the family of someone who had the disease were unable to marry. This is no longer the case today.

That’s why I travel the world and speak out against the discrimination that marginalises those affected by the disease. But these are prejudices that have existed for 2,000 years; they cannot be overcome in two or three years.

Many share my viewpoint and accompany me in the struggle. One day the discrimination will end. It is more difficult to cure the disease that plagues society than the illness itself.

My effort is to hold a dialogue with presidents and ministers, people in positions of leadership, so that my message acquires political strength and can lead to a solution.

IPS: How did Japan manage to eradicate Hansen’s Disease?

YS: One way was the collective action of people who had the disease. Long-term media campaigns were conducted to spread knowledge about the disease. Movies, books and plays were also produced.

In Japan, Hanseniasis ceased to be the ‘disease of silence’. The nation apologised for the discrimination and compensated those affected. But in other countries, people affected by the disease have not yet come together to fight. Brazil, however, does have a very active movement.

IPS: As an example of what can be done, you cite Brazil’s Movement for the Reintegration of People Affected by Hanseniasis, MORHAN. Are there similar initiatives in other countries?

YS: Morhan really stands out as a model. Organisations have been formed by patients in India and Ethiopia, but they still have limited political influence. The Nippon Foundation encourages such movements.

IPS: You’ve visited Brazil more than 10 times. Have you seen any progress on this tour of the states of Pará and Maranhão, in the north, and in Brasilia?

YS: On that trip we couldn’t visit patients’ homes and talk to them, but we did see that the national, regional and local governments are motivated. We will be able to expand our activities here. In any country, if the highest-level leaders, such as presidents and prime ministers, take the initiative, solutions can be accelerated.

We agreed to organise a national meeting, promoted by the Health Ministry and sponsored by the Nippon Foundation, if possible with the participation of President Jair Bolsonaro, to bolster action against Hanseniasis.

We believe that this would generate a strong current to reduce the prevalence of Hanseniasis to zero and also to eliminate discrimination and prejudice. If this happens, my visit could be considered very successful.

IPS: What would you emphasise about the results of your visit?

YS: The message that President Bolsonaro spread directly to the population through Facebook during our meeting, with his view addressed to all politicians, to his team and and to all government officials on the need to eliminate the disease. I feel as if I have obtained the support of a million people who will work with us.

 

Q&A: Important to Treat Anyone Suffering from Leprosy as an Equal Individual

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Health

Alice Cruz is the United Nations Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, says divorce on the grounds of leprosy, allowed by laws or not, is a prevailing reality. Credit: U.N. Photo / Jean-Marc Ferré

MANILA, Mar 5 2019 (IPS) – Discrimination against women who are affected by leprosy or Hansen’s Disease is a harsh reality, says Alice Cruz is the United Nations Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members.


“Divorce on the grounds of leprosy, allowed by laws or not, is a prevailing reality. In settings where women are not economically independent, it can lead to the feminisation of poverty, throwing too many women affected by leprosy into begging or even prostituting,” says Cruz, who was speaking via audio link at Regional Assembly of Organisations of People Affected by Leprosy in Asia that was held in Manila, Philippines. The Sasakawa Memorial  Health Foundation/the Nippon Foundation (TNF) which supports leprosy projects across the world sponsored the meeting.

A professor at the Law School of University Andina Simon Boliver in Ecuador, Cruz has extensive knowledge of the social stigma and discrimination faced by the people who are affected by leprosy which also amount to the violation of their human rights.

In an interview to IPS, Cruz speaks of the layers and levels of stigma that men, women and children of leprosy-affected people face and how the U.N. has been trying to end it. Finally, she lists the simple ways that every ordinary person can contribute to end the stigma that people living with leprosy face and how to help them become integral to society. Excerpts of the interview follow:

Inter Press Service (IPS): What is the link between human rights violation and the leprosy-affected people? 

Alice Cruz (AC): Throughout history leprosy has become much more than a disease: it became a label, mainly used to exclude. Leprosy came to embody what was socially prescribed as shameful and disrupting. It became a symbol, a powerful metaphor, for everything that should be kept apart, whether it was attributed to punishment for sinful conduct, unregulated behaviour, past offences and socially constructed ideas of racial inferiority, among others harmful myths and stereotypes, which led to massive human rights violations of persons affected by leprosy, but also their family members.

IPS: Can you describe some of the ways the rights of leprosy affected people are violated?

AC: Women, men and children affected by leprosy were, and continue to be in many contexts, denied not only their dignity, but also an acknowledgement of their humanity. It is not a coincidence that it is commonly said that persons affected by leprosy experience a civil death.

They have been consistently subjected to: stigmatising language; segregation; separation from their families and within the household; separation from their children; denial of care; denial of the means of subsistence; denial of a place to live; denial of education; denial of the right to own property; impediments to marry; impediments to have children; restrictions on their freedom of movement; denial of their right to participate in community, public and political life; physical and psychological abuse and violence; compulsory internment; forced sterilisation; institutionalised silencing and invisibility.
There are still more than 50 countries in the world with discriminatory laws against persons affected by leprosy in force.

IPS: What is the UN doing to prevent and end these violations?

AC: In 2010, the General Assembly, in a landmark move, adopted resolution 65/215 and took note of the principles and guidelines on the elimination of discrimination against persons affected by leprosy and their family members. In so doing, it established leprosy as a human rights issue and stressed that persons affected by leprosy and their family members should be treated as individuals with dignity and entitled to all human rights and fundamental freedoms under customary international law, the relevant conventions and national constitutions and laws. In June 2017, the Council adopted resolution 35/9, establishing the mandate of the Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members. It called on States and all relevant stakeholders to cooperate with the Special Rapporteur in the discharge of the mandate. I assumed this role on Nov. 1, 2017.

IPS: How far have we come in achieving the 2020 target leprosy eradication?

AC: I am afraid we are very far from such a scenario. By the one hand, eradication of leprosy is not on the horizon given the lack of a vaccine. By the other hand, official reports of around 150 countries to the [World Health Organisation] WHO in 2016 registered more than new 210 000 cases of leprosy, with high incidence among children, which means ongoing transmission.

IPS: How can every ordinary person contribute to eradication of leprosy and ending stigma towards leprosy affected people? 

AC: Acknowledging that persons affected by leprosy are the same as everyone else and fighting harmful stereotypes in daily life. Remembering that anyone, including you and me, can come to suffer from any disease or disability and that diversity and dignity in diversity is what makes us humans.

 

New Regional Secretariat to Advance Leprosy Advocacy in Asia

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Health

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

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 

 

Q&A: Leprosy-affected People Live Not at the Bottom, but Outside the Social Pyramid

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

MANILA, Mar 5 2019 (IPS) – Takahiro Nanri is the Executive Director of Sasakawa Memorial Health Foundation which has been supporting the global fight against leprosy for almost five decades. Since 2014, Nanri has been leading the foundation’s leprosy projects across the world and has deep insights into the challenges faced by the people affected by leprosy as well as the organisations that work with them.


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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