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”.

 

Disaster Risk Resilience: Key to Protecting Vulnerable Communities

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Opinion

Armida Salsiah Alisjahbana is Under-Secretary-General of the United Nations and Executive Secretary of the United Nations Economic and Social Commission for Asia and the Pacific (ESCAP).

BANGKOK, Thailand, Aug 28 2019 (IPS) – The past five years have been the hottest on record in Asia and the Pacific. Unprecedented heatwaves have swept across our region, cascading into slow onset disasters such as drought. Yet heat is only part of the picture. Tropical cyclones have struck new, unprepared parts of our region and devastatingly frequent floods have ensued. In Iran, these affected 10 million people this year and displaced 500,000 of which half were children. Bangladesh is experiencing its fourth wave of flooding in 2019. Last year, the state of Kerala in India faced the worst floods in a century.

Armida Salsiah Alisjahbana

This is the new climate reality in Asia and the Pacific. The scale of forecast economic losses for the region is sobering. Including slow-onset disasters, average annualised losses until 2030 are set to quadruple to about $675 billion compared to previous estimates. This represents 2.4 percent of the region’s GDP. Economic losses of such magnitude will undermine both economic growth and our region’s efforts to reduce poverty and inequality, keeping children out of schools and adults of work. Basic health services will be undermined, crops destroyed and food security jeopardised. If we do not act now, Asia-Pacific’s poorest communities will be among the worst affected.

Four areas of Asia and the Pacific are particularly impacted, hotspots which combine vulnerability to climate change, poverty and disaster risk. In transboundary river basins in South and South-East Asia such as the Ganges-Brahmaputra-Meghna river basin, floods alternate with prolonged droughts. In South-East Asia and East and North-East Asia earthquakes, tsunamis and landslides threaten poor populations in the Pacific Ring of Fire. Intensifying sand and dust storms are blighting East, Central and South-west Asia. Vulnerable populations in Pacific Small Islands Developing States are five times more at risk of disasters than a person in South and South-East Asia. Many countries’ sustainable development prospects are now directly dependent on their exposure to natural disasters and their ability to build resilience.

Yet this vicious cycle between poverty, inequalities and disasters is not inevitable. It can be broken if an integrated approach is taken to investing in social and disaster resilience policies. As disasters disproportionately affect the poor, building resilience must include investment in social protection as the most effective means of reducing poverty. Conditional cash transfer systems can be particularly effective as was shown in the aftermath of Typhoon Haiyan in the Philippines. Increasing pre-arranged risk finance and climate risk insurance is also crucial. While investments needed are significant, in most countries these are equivalent to less than half the costs forecast to result from natural disasters.

The use of technological innovations to protect the region from natural disasters must go hand in hand with these investments. Big data reveal patterns and associations between complex disaster risks and predict extreme weather and slow onset disasters to improve the readiness of our economies and our societies. In countries affected by typhoons, big data applications can make early warning systems stronger and can contribute to saving lives and reducing damage. China and India are leading the way in using technology to warn people of impending disasters, make their infrastructure more resilient and deliver targeted assistance to affected farmers and citizens.

Asia and the Pacific can learn from this best practice and multilateral cooperation is the way to give scale to our region’s disaster resilience effort. With this ambition in mind, representatives from countries across the region are meeting in Bangkok this week at the United Nations Economic and Social Commission for Asia and the Pacific (ESCAP) to explore regional responses to natural disasters. Their focus will include strengthening Asia-Pacific’s Disaster Resilience Network and capitalising on innovative technology applications for the benefit of the broader region. This is our opportunity to replicate successes, accelerate drought mitigation strategies and develop a regional sand and dust storm alert system. I hope the region can seize it to protect vulnerable communities from disaster risk in every corner of Asia and the Pacific.

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The Nairobi Summit – Towards a Watershed Moment

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Opinion

NAIROBI, Kenya, Aug 8 2019 (IPS) – In 2019 a female scientist created an algorithm that gave the world the first ever images of a black hole. Working with a team of astronomers, physicists, mathematicians and engineers, a young woman led the development of a computer program that in her own words enabled them to “achieve something once thought impossible.”

Photo: Heshimi Kenya

During this same year, over 200 million women in developing countries will not have access to effective methods of contraception to delay or avoid pregnancy. Approximately 830 women a day will die during pregnancy or childbirth from preventable causes. And sexual and gender based violence including harmful practices like early marriage and female genital mutilation, will still plague millions of girls and young women. Girls and women denied basic human rights and robbed of their potential to achieve the impossible.

In 1994, the visionary Programme of Action was agreed to by 179 governments at the International Conference on Population and Development (ICPD) in Cairo, Egypt. The Programme of Action recognized that reproductive health and rights, as well as women’s empowerment and gender equality, are cornerstones of healthy robust societies that promote the well-being of populations and economic and social development of nations. Since ICPD, governments, civil society, youth networks have all worked towards decreasing maternal deaths, eliminating harmful practices and promoting gender equality.

The global community is now gearing up to mark 25 years since the historic ICPD through the Nairobi Summit on the International Conference on Population and Development, ICPD25 which will be held from 12-14 November 2019 under the theme “Accelerating the Promise”.

I am proud that my country Kenya, will be hosting this important Summit, which is aimed at mobilizing the political will, financial commitment and community support we need to fully realize the ICPD Programme of Action.

Indeed, by the time we leave Nairobi, we must ensure that everyone has agreed to play their part in reaching zero unmet need for family planning information and services, zero preventable maternal deaths, and zero sexual and gender-based violence and harmful practices against girls and women. Evidence shows that the benefits that would accrue from fulfilling the ICDP agenda would be far reaching in transforming lives and improving the wellbeing of families, communities, and nations.

Dr. Ida Odinga, EGH

In Kenya, significant progress in health care has been made with Universal Health Coverage(UHC) a top priority for the Government. Thanks to the leadership, passion and commitment of the First Lady of Kenya, Ms Margret Kenyatta through her Beyond Zero campaign there has been a significant drop in maternal and child mortality. We have to now go for zero deaths. Reproductive, maternal, neonatal, child and adolescent health is key to achieving UHC.

High rates of teenage pregnancy, take girls out of school and compromises their health. Young people face stark challenges in employment as 1,000,000 people enter a labor force that can only absorb 150,000 new entrants. Access to health services and information, school retention and quality education will help these young girls stay in school and lead healthy lives. These are among the issues that the Summit will address.

However, in order for the Nairobi Summit to be a game changer, we need to speak for those that can’t speak, speak for those who are not heard and to add our voices to those who continue to work for sexual and reproductive rights for all. We must reaffirm our commitments to the ICPD goals and Agenda 2030. We must absorb the lessons learned over the last 25 years and do better.

For Kenya, the Nairobi Summit provides a platform to showcase our Big Four Development Agenda aimed at accelerating socioeconomic transformation and economic growth by intensifying investments and programme actions on: affordable housing, food security, universal healthcare and manufacturing.

I am delighted that my country is partnering with UNFPA and the Government of Denmark to host the Nairobi Summit and reaffirm the global commitment to ICPD. This is a watershed moment as we are a mere 10 years away from our commitment to fulfill the SDGs.

I look forward to seeing all the participants in Nairobi and hope everyone will follow the proceedings of the Nairobi Summit and learn how we can all play a role in bringing about change and keeping the promise of ICPD. Ensuring that all women and girls can reach for the stars and achieve the impossible.

Dr. Ida Odinga, EGH is spouse of Rt Hon. (Eng.) Raila Odinga and a passionate campaigner of women’s rights.

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Prejudice and Discrimination, the Uncured Ills of Leprosy

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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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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.

 

People Affected by Leprosy in Latin America Unite for Their Rights and Their Voice

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Family photo of part of the 111 participants in the First Latin American and Caribbean Assembly of Organisations of People Affected by Hansen's Disease, on the steps of the Morisco Palace, the headquarters of the Oswaldo Cruz Foundation, which hosted the three-day meeting in Rio de Janeiro, Brazil. Credit: Mario Osava/IPS

Family photo of part of the 111 participants in the First Latin American and Caribbean Assembly of Organisations of People Affected by Hansen’s Disease, on the steps of the Morisco Palace, the headquarters of the Oswaldo Cruz Foundation, which hosted the three-day meeting in Rio de Janeiro, Brazil. Credit: Mario Osava/IPS

RIO DE JANEIRO, Mar 14 2019 (IPS) – With the decision to found a regional coalition to promote rights and greater participation in national and international forums and decisions, the First Latin American and Caribbean Assembly of Organisations of People Affected by Hansen’s disease, popularly known – and stigmatised – as leprosy, came to an end.

The final session of the meeting, on Mar. 14, approved 40 of the 58 proposals presented by the 111 participants in three days of debates at the headquarters of the Oswaldo Cruz Foundation, a renowned scientific, medical and epidemiological research centre in Rio de Janeiro, Brazil.

José Picanço, 46, separated from his family and taken as a newborn to an orphanage because his parents were diagnosed with the disease in 1972, is one of those affected whose right to reparations remains unfulfilled. His three siblings are in the same situation.

When the family was reunited eight years later, the father turned his back on the children. The mother took them in, but died shortly afterwards. “I only lived with her, a saint, for five months,” Picanço recalled, barely managing to hold in his tears while giving testimony at the meeting.

“Humiliated as the children of lepers, suffering bullying and sexual harassment, many of the other children who were with me at the orphanage fell into drug abuse and alcoholism. It was a holocaust,” he said. “I hit my brother on the head, not knowing he was my own brother.”

“Of the 15,000 to 20,000 children separated from their families, more than 80 percent suffer from depression,” said Picanço in an interview with IPS, detailing some of the damage caused by the old rule of segregating the people then called “lepers”.

Mandatory isolation was widespread around the world, during different historical periods, and continues in some countries, even though it is known that the disease is curable and that patients cease to be contagious shortly after starting treatment.

Officially, Brazil abolished this practice in 1976, although it actually lasted 10 more years. Its direct victims were compensated starting in 2007, but their children were not. The activists gathered in Rio de Janeiro called for working for policies of reparations for children separated from their families.

Their complaints and proposals will be taken to the World Congress of associations of people affected by leprosy in Manila in September, which will also receive contributions from Africa and Asia, approved at recent similar regional assemblies.

“The goal is to form a large network of activists, to strengthen the movement” for the eradication of the disease and for care and reparations for those affected, said Kiyomi Takahashi of the independent Nippon Foundation, which is driving this international process of debate and cooperation.

The meeting in Rio de Janeiro fostered “a high-level dialogue, the result of Morhan and Felehansen’s long history of activities,” the Japanese expert told IPS, referring to the Movement for the Reintegration of People Affected by Hanseniasis (Morhan) in Brazil, and the National Federation of Entities Affected by Leprosy or Hansen’s Disease (Felehansen) in Colombia, the two organisers of the regional meeting.

Brazilian activists José Picanço (front) and Evelyne Leandro testified about how Hansen's disease affected them during a Latin American and Caribbean meeting in Rio de Janeiro. Picanço was separated from his parents when they were diagnosed with leprosy when he was born in 1972 and was only reunited with them eight years later, shortly before his mother died. Leandro wrote a book about the difficulties of being diagnosed with the disease in Germany, where she lives. Credit: Mario Osava/IPS

Brazilian activists José Picanço (front) and Evelyne Leandro testified about how Hansen’s disease affected them during a Latin American and Caribbean meeting in Rio de Janeiro. Picanço was separated from his parents when they were diagnosed with leprosy when he was born in 1972 and was only reunited with them eight years later, shortly before his mother died. Leandro wrote a book about the difficulties of being diagnosed with the disease in Germany, where she lives. Credit: Mario Osava/IPS

“Morhan is my safe haven, to preach that separated children should be heard and have opportunities,” said Picanço, who explained that he joined the movement in 1992. Today he gives talks on the direct and indirect effects of the stigma still surrounding the disease, that is suffered by those affected and their families.

A blessing

The disease “was a blessing for me,” Isaias Dussan Weck, 50, the vice-president of the Colombian association Felehansen, told IPS without hesitation.

The diagnosis in 2006 destroyed him, he said. He lost the desire to work or to go out, he let his business of supplying cleaning products to companies go bankrupt, he even contemplated suicide. He ignored the stains on his body that did not prevent him from working and traveling, until they spread to his face, and he noticed that parts of his body were going numb.

He received treatment and was cured, left with only slight numbness in one arm and pains in his left leg.

But everything went badly for him until he was invited to meetings with other people affected by leprosy. “I began to understand, when I heard their testimonies and tears, why a young black girl with severe disabilities said that leprosy was a blessing to her,” Dussan said.

Activism for the benefit of those affected, against the stigma and the damage caused by the disease, in the association of the department of Huila, in southwestern Colombia, allowed him “to gain new meaning for life and to understand and practice love for my neighbour.”

“Helping and seeing a patient’s life improve is a wonderful emotion, and you help other people want to live,” he concluded. That new passion led him to Felehansen, where he took on leadership roles in the federation.

Irma Romero, 42, president of the Nuevo Amanecer Foundation in Barranquilla, on Colombia’s northern coast, had a similar experience. Her lengthy odyssey to a specialist’s diagnosis five years ago reveals the medical system’s shortcomings when it comes to detecting and treating the disease, also known as hanseniasis, which is still viewed by many as “a divine punishment.”

Romero stopped working in the textile industry due to disability and depression. “I couldn’t even walk,” she recalled. “I even denied God,” she told IPS.

Colombian activist Irma Romero, a native of the city of Barranquilla, sitting on the bus that transported the participants of the First Latin American and Caribbean Assembly of Organisations of People Affected by Hansen's Disease, held Mar. 12-14 in Rio de Janeiro, Brazil. Credit: Mario Osava/IPS

Colombian activist Irma Romero, a native of the city of Barranquilla, sitting on the bus that transported the participants of the First Latin American and Caribbean Assembly of Organisations of People Affected by Hansen’s Disease, held Mar. 12-14 in Rio de Janeiro, Brazil. Credit: Mario Osava/IPS

Treatment using medicinal herbs, self-medication, rejection by relatives, attempts to separate her from her two children and abandonment by her husband all formed part of her suffering, which did not end with her treatment and cure.

The only permanent physical effects are numbness in her hands and feet, and sciatic nerve pain. But the discrimination continued.

“My life changed when I joined the association of affected people” four years ago, she said. “There I found people who had things in common with me, and a newfound love of my neighbour that I did not feel before,” said the activist, who became president of the Foundation the following year and reconciled with God.

Her foundation currently has 60 members. In Barranquilla she estimates that there are “about 200 affected people, but many more are hidden.”

The foundation is one of the 10 associations that make up Felehansen, eight of which call the disease hanseniasis or Hansen’s disease, one of which uses the term leprosy, and another of which refers to disabled people and is made up of patients who received a very late diagnosis.

The World Health Organisation (WHO) defines leprosy – the term it uses – as an infectious and chronic disease “transmitted by air through droplets from the nose and mouth, during close and frequent contacts with untreated cases.” It also specifies that leprosy is “one of the least infectious diseases.”

WHO reports that in 2017 there were 211,009 new cases worldwide, according to official data from 159 countries. That amounts to 0.3 cases per 10,000 inhabitants, which means it classifies as having been “eliminated,” according to WHO criteria.

Change of name: another recommendation

Proposing hanseniasis as the official name for the disease is one of the proposals that came out of the Latin American meeting, headed by Brazil, which has already adopted it, even prohibiting the mention of leprosy in the health system since 1995.

They are different concepts, because leprosy and leper have very negative connotations of “dirt, plague, impurities and divine punishment,” strengthened by numerous mentions with that moral burden in the Bible, argued Faustino Pinto, one of Morhan’s national coordinators.

But the activists from Colombia are not convinced. “People only know leprosy, they don’t know it’s Hanseniasis. To explain the issue to the population, you have to mention leprosy,” argued Romero.

“It will be necessary to educate the new generations about the concept of Hansen,” the Norwegian doctor Gerhard Hansen who discovered the bacillus that causes the disease, because adults are not likely to forget the stigma, said Dussan. “It’s harder to unlearn than to learn,” he added.

Another proposal of the Latin American Assembly is to extend the current Committee for Assistance to Brazilian Immigrants Affected by Hanseniasis to all Latin Americans and people from the Caribbean, in addition to extending it to other regions.

The reference point in this is Evelyne Leandro, a 37-year-old Brazilian who has lived in Germany for nine years and had a lot of difficulties getting diagnosed with the disease in a country where it is very rare and where very few doctors are familiar with it.

She was helped by her mother’s suspicion, awakened in Brazil by an outreach campaign on the disease, and by the Institutes of Tropical Medicine in Germany.

Her case and those of other immigrants in Europe are recounted in her book “The Living Death: the struggle with a long forgotten disease”.