WHO Goodwill Ambassador for Leprosy Elimination, Yohei Sasakawa, would like to create a society where there is social inclusion. It is this philosophy that motivates his life-long campaign to end discrimination against people affected by leprosy. Credit: Sasakawa Leprosy Initiative

By Cecilia Russell
Johannesburg, Jan 30 2022 (IPS)

For the WHO Goodwill Ambassador for Leprosy Elimination, Yohei Sasakawa, ensuring affected peoples’ human rights is fundamental to the campaign to eradicate the disease.

In an exclusive interview with IPS on the eve of World Leprosy Day, he recalled his first encounter with people affected by leprosy, saying they were “without dreams or hopes and there was no light in their eyes.”

Sasakawa’s father, Ryoichi, hugged the patients in the newly opened hospital in Korea. He then realized that returning hope to people affected by leprosy could be his life’s work.

This work has continued for more than 40 years, but it is not over yet.

“People who should be part of society remain isolated in colonies facing hardships,” Sasakawa, who is also the chairman of the Nippon Foundation, says.

“Isn’t it strange that someone cured of a disease can’t take their place in society? I belatedly realized that if the human rights aspect wasn’t addressed, then elimination of leprosy in a true sense would not be possible,” explaining the rationale for approaching the United Nations in 2003.

As a result, a resolution on the elimination of discrimination against persons affected by leprosy and their family members was unanimously adopted by 192 countries voting in the UN General Assembly.

While Covid-19 has temporarily ended his travels, his work is far from complete. Once the pandemic is over, Sasakawa intends to continue his travels worldwide to bring onboard top officials and politicians – presidents and prime ministers – while spreading hope to affected people.

In the interim, the global ‘Don’t Forget Leprosy’ campaign by the Sasakawa Leprosy Initiative continues. The initiative strategically links the WHO Goodwill Ambassador for Leprosy Elimination, Sasakawa Health Foundation, and the Nippon Foundation towards achieving a leprosy-free world.

Sasakawa says his message is clear:  1) Leprosy is curable. 2) Medication is free. 3) Discrimination has no place.

“When people are still being discriminated against even after being cured, society has a disease. If we can cure society of this disease—discrimination—it would be truly epoch-making.”

Here are excerpts from the interview:

Yohei Sasakawa, Chairman of The Nippon Foundation, has served as WHO Goodwill Ambassador for Leprosy Elimination since 2001. He plays a leading role in the Sasakawa Leprosy (Hansen’s Disease) Initiative, which has organized the “Don’t Forget Leprosy” campaign.

Cecilia Russell: In your message to the world for World Leprosy Day, you expressed concern that the decrease in the number of cases detected was because the Covid-19 pandemic meant that less testing was done. How can leprosy-affected people get back on track?

Yohei Sasakawa: Many issues have been sidelined because of the Covid-19 pandemic, among them the challenges posed by leprosy, also known as Hansen’s disease. According to the Global Leprosy Update for 2020, there was a 37% year-on-year decrease in new cases due to disruptions to case-finding activities. There are concerns that hidden cases will lead to increased transmission and result in more cases with disabilities. On the other hand, while figures vary from country to country, the overall treatment completion rate remains at the same level as the previous year, indicating that stakeholders are working hard to maintain services, even in the midst of the global pandemic.

Even in normal times, health ministries have jurisdiction over all kinds of diseases. Compared to diseases such as TB, AIDS, or malaria, however, there are few cases of leprosy, so budgets and personnel are limited. Patients, meanwhile, might not visit a hospital because the long history of stigma attached to the disease makes it difficult, or because in its early stages, symptoms are painless. That’s why I feel it is necessary to meet with those at the top of the country and have them issue a call to eliminate leprosy. Once the COVID situation eases, I want to visit countries and encourage presidents and prime ministers to recognize the importance of this issue and seek their cooperation in helping activities against the disease to resume.

At the same time, I believe that the participation of people who have experienced the disease is also very important. There are so many things that people can do, such as active case-finding, mental support for people undergoing treatment, and awareness-raising. In 2011, the WHO issued guidelines on strengthening the participation of persons affected by leprosy in leprosy services in such areas as a way to improve the quality of leprosy services.

CR: You have chosen as a life’s work to raise awareness of both the disease and the impact of the stigma of leprosy. This is an age-old stigma and was considered a sign of impurity in Christian biblical times. How has an awareness of leprosy as a human rights issue changed perceptions about the disease? What more needs to be done?

YS: I started working on leprosy in the 1970s and have been the WHO Goodwill Ambassador for Leprosy Elimination since 2001. People who should be part of society remain isolated in colonies facing hardships. The more you look into it, the more you see the restrictions they live under, including legal restrictions in some cases. Isn’t it strange that someone cured of a disease can’t take their place in society? I belatedly realized that if the human rights aspect wasn’t addressed, then elimination of leprosy in a true sense would not be possible. That’s when I first approached the United Nations about this in 2003.

In 2007, the Japanese government appointed me as its Goodwill Ambassador for the Human Rights of Persons Affected by Leprosy. Collaboration with the Japanese government led in December 2010 to a UN General Assembly resolution on the elimination of discrimination against persons affected by leprosy and their family members to call on states to full consideration of Principles and Guidelines. The resolution was adopted unanimously by 192 countries.

Discrimination toward persons affected by leprosy and their families should never be tolerated. That’s why the Principles and Guidelines were approved.

Although they are not binding, given the reality that even treaties ratified by states, such as the Convention on the Rights of Persons with Disabilities, the Convention on the Rights of the Child, and the Framework Convention on Tobacco Control, are difficult to implement, we need to think of them as a tool to be used by stakeholders, including persons affected by leprosy, when advocating with governments to fix the problems.

When people are still being discriminated against even after they have been cured, then society has a disease. If we can cure society of this disease—discrimination—it would be truly epoch-making.

CR: Could you please tell our readers about your father and his role in influencing you to make this mission a life’s work?

YS: My father Ryoichi also served as a member of Parliament. He was a man who was especially compassionate toward the vulnerable and dedicated his life to them. Concerning leprosy, in particular, there was an incident where a young lady living in the neighborhood suddenly disappeared, and he later found out she had been segregated due to leprosy. He had a very strong sense of justice and took exception to the fact that something so unreasonable was permitted on the basis of a disease.

In 1962, my father established the Japan Shipbuilding Industry Foundation, the forerunner of The Nippon Foundation, and began social contribution activities. In 1967, he started work in earnest on realizing his long-held dream of eradicating leprosy with the construction of some new facilities for a leprosy center in Agra, India. With the establishment of the Sasakawa Memorial Health Foundation (now Sasakawa Health Foundation) in 1974, efforts to tackle the disease stepped up.

My father built leprosy hospitals, mainly in Southeast Asia. I was young and often accompanied him, but I didn’t go inside the hospitals. In the mid-1970s, he responded to a request to build a leprosy hospital in Korea. I went with him to the opening ceremony and entered a leprosy hospital for the first time. Everyone sat on the bed facing us, but they were completely expressionless. Their faces were ashen-colored; they were without dreams or hopes, and there was no light in their eyes.

I was really surprised to see my father go to every bed, hug each person, and encourage them in a very natural way, unconcerned by the pus oozing from their bandages. Discovering a world that I had not encountered before and seeing how naturally my father behaved, I wondered if this would be my life’s work. Since then, I have been active in leprosy.

CR: In some countries, people affected by leprosy are still confined to leprosy colonies. How do you see your role as WHO Goodwill ambassador and the Don’t Forget Leprosy campaign changing these perceptions around a treatable disease? What is needed to change the perception about leprosy and remove the stigma?

YS: Thinking strategically about how to make people aware of the importance of this problem and how to solve it is very important. You have to convince heads of state in each country. If a budget is allocated as a result of meeting with and explaining the situation to the head of state, if the president orders it—then the person in charge at the ministry of health or the leprosy program manager will be greatly encouraged in their work.

On the other hand, it is also very important to reach the many people without knowledge of leprosy and allay their fears explain that it’s not hereditary, it’s not divine punishment, it’s not highly contagious. Wherever I go, I always stress: 1) Leprosy is curable; 2) Medication is free; 3) Discrimination has no place. For that, the help of the media is necessary, so one of my very important tasks is to have a proper media strategy.

Also, as we now live in an era where every individual can publicize leprosy issues via social media, I think it is important that everyone concerned with these issues actively raises them, not as issues affecting someone else, but as personal issues.

CR: You have been involved in numerous other humanitarian endeavors, apart from your 40-year-old association with leprosy and your role as WHO Goodwill Ambassador for Leprosy Elimination. These include the Change for Blue campaign, and you acted as a special envoy of the Japanese government to try to bring peace to Myanmar. Do you have a philosophy about humanitarian work that guides you?

YS: One of my philosophies in life is the ‘on-site principle’: problems and their solutions are found in the field. Another is that social actions require that you keep your enthusiasm bubbling over, regardless of your age, and have the mental fortitude to withstand any difficulties. In addition, you have to keep going until you achieve results. I’ve acted on the basis of these three ideas.

CR: Is there anything else you would like to add?

YS: There are more than 1 billion people in the world living with disabilities, including persons affected by leprosy. We need to create an inclusive society where everyone can have an education, find work and get married if they want to. People have the passion and the motivation; often, all they lack is opportunity.

I would like to create a society where everyone feels fully engaged, able to express their opinions, and appreciated. The coming era must be one of diversity, and for that, we need social inclusion. There is such ability and potential in the world, and to have everyone participate in society will create a truly wonderful future.

That’s why it’s important for persons affected by leprosy to have confidence and speak out. To support them, Sasakawa Health Foundation and The Nippon Foundation are helping them to build up their organizational capacity. I’d like to see a society in which everyone is active, able to express their opinions to the authorities with confidence, and their contribution is valued.

By Sam Olukoya
LAGOS, Nigeria, May 12 2021 (IPS)

People affected by leprosy, also known as Hansen’s disease, are often stigmatised. In countries like Nigeria, many of them end up as beggars due to the psycho- and socio-economic problems they face. The COVID-19 pandemic has brought fresh challenges for them and life is getting increasingly difficult. Sam Olukoya in Lagos takes a look at how people affected by leprosy in Nigeria are faring in the face of the COVID-19 pandemic.

SCRIPT

SONG:

NARRATION: In Nigeria, many people affected by leprosy survive as beggars. They usually sing songs like this as they solicit for assistance. One of them, Musa Gambo, says life has changed for the worse for them since the outbreak of the COVID-19 pandemic.

GAMBO: We have been facing problems since the Corona pandemic started. The price of food has gone up, everything is expensive, yet we cannot do any job. The money people give us as alms now is much lower than what they used to give us in the past. Some people will give you nothing and just walk away because they are facing difficult times. Some people are even angry and irritated when you beg them for money because life is tough for them. They will ask why you are disturbing them for money as if you are not aware that there is corona.

SOUND OF BUCKETS

NARRATION: Musa Ibrahim arranges buckets which he uses to store water. Ibrahim who is affected by leprosy says as beggars they often face arrest.

IBRAHIM: The lockdown has been lifted and people can move about freely, but for us if we go out they will arrest us and they will not release us. They came even yesterday. It is difficult for us to go and beg for alms g because they will arrest us. Our crime is that we are begging, they said they don’t want beggars, for us that is the only way we can get money to sustain ourselves. If we cannot beg for money honestly it will be difficult to feed. They did not give us jobs yet they are stopping us from looking for money, that is not good.

NARRATION: Audu Garba says people like him who are affected by leprosy have to survive as beggars due to the discrimination they face.

GARBA: Because we have leprosy, people will not patronise us if we set up a business due to the stigma. Here in Lagos anyone with leprosy who set up a business is deceiving himself because the business will not succeed. If I have money my business idea will be breeding and selling livestocks. If I have the resources for this business I will cease to be a beggar.  But I don’t have the resources. I cannot farm, so if I don’t live as a beggar what else should I do? I cannot get loan from the bank, who will give me loan in the bank, when I don’t have a farm or a house that I can use as collateral to get a loan?

NARRATION: Garba says the pandemic has increased the stigma against people affected by leprosy as many Nigerians believe they are infected by the Corona virus.

GARBA: We have been facing discrimination in the past and it has continued. It is now double discrimination with corona, because now they see us as the people who actually have Corona. I swear. It saddens me when they say we have corona. Till now they go about with that impression that we have Corona. When some people even pity you and want to give you money, they will throw it at you from a distance. Yes, it is because of the stigma that we have Corona that is why they treat us this way. They discriminate against us because they don’t regard us as normal human beings.

NARRATION: Lagos based medical doctor, Kunle Ogunyemi, says once treated, people who had Hansen’s disease are not contagious and can live a fairly normal life. He said misconceptions about the disease make many people think they are still contagious.

OGUNYEMI: Ordinarily when they are fully cured, they are not infectious. Perception of the public or even some health care workers unfortunately does not accommodate them at all because knowledge about it, it is not a common disease at all and because not too many people know, the tendency is still to keep them at arms length.

SONG:

NARRATION: With songs like this, people affected by leprosy often appeal to society to respect the rights of vulnerable people like them. But Garba says so strong is the discrimination against them that he is not optimistic that they will get the COVID-19 vaccine which is supposed to be freely available to Nigerians.

GARBA: We are happy that there is vaccine, but it is not meant for us. If the populace are vaccinated we shall thank God, but for us, it is not a priority. If they look for us we shall take the vaccine since everyone ought to have it, but if they don’t look for us, we shall not force ourselves to get it, it will be difficult for us to get the vaccine. Take the newly introduced national identification card, I don’t have one, because they asked for money, I don’t have money. The situation with the vaccine will be similar, they will ask for money but we don’t have money.

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Sattamma, a daily labourer in the Rangareddy district of southern India’s Telangana state, says that even though she no longer has Hansen’s Disease, she remains discriminated against because of it. Credit: Stella Paul/IPS

By Stella Paul
HYDERABAD, India , Jan 23 2020 (IPS)

Fifteen years ago, Sattamma – a daily labourer in the Rangareddy district of southern India’s Telangana state – was abandoned by her husband after she was diagnosed with Hansen’s Disease.

Last October, while her neighbours were celebrating Diwali, Sattamma was homeless again as her landlord threw her out of the house after he discovered her past disease.

“My husband said I was a danger to him. But it was so many years ago (I had leprosy). I have been cured and living without any scar or pain. Why would anyone still treat me like this?” asks a visibly-perplexed Sattamma who says finding work has become harder since her eviction.

Discrimination against leprosy, however, isn’t experienced by a scattered few: the world over, men and women affected by leprosy are increasingly being subjected to stigma and bias regardless of their current health status.

In Nigeria, Lilibeth Nwakaego runs a non-profit organisation called Leprosy Disability Initiative, which provides legal and emotional support to the leprosy-affected people who have been stigmatised by society. According to her, the roots of stigma are so deep, it often frustrates even the most determined.

“As a lawyer and a woman, I can tell you this: leprosy-affected people like me are sent straight to hell once the community discovers about our sickness. It is meaningless and cruel but it exists and it is continuously increasing,” she tells IPS.

“The discrimination towards leprosy-affected is like leprosy itself: you fight it in one place and end it, but it surfaces in another.”

Re-emergence of an “eliminated” challenge

In 1993, multi-drug therapy (MDT) was introduced worldwide which has since reduced the prevalence of Hansen’s Disease by more than 99 percent. As a result, most countries announced they had eliminated the disease – this is a target of less than one case per 10,000 people as set by the World Health Organisation.

However, almost a decade later, new cases are continually surfacing globally, including in India, Brazil and Indonesia – the world’s three-most affected countries. 

• One person is diagnosed with leprosy roughly every four minutes in India, accounting for 60 percent of all new leprosy cases annually.
• Brazil, which has the second-highest burden of leprosy, has reported over 28,000 new cases annually.
• Indonesia with 16,826 new cases being reported each year, is third on the list.

However, each of these countries has reported high levels of stigma and discrimination – experienced by leprosy-affected people.

Legal and constitutional discrimination

In the last decade, India has also seen a rise in several potentially deadly diseases, including tuberculosis, heart disease, diabetes and diarrhoea. Compared to this, the number of leprosy cases is truly minuscule. Yet the social stigma and bias against the leprosy-affected is extremely high, courtesy of a large number of laws which allow and aid such acts, says Vagavathalli Narsappa – head of Association for Leprosy-Affected (APAL) – a pan-Indian organisation based in Hyderabad.

“The irony is that when it comes to stigma, the law is truly equal for all. For example, a leprosy-affected person cannot contest a local election, or, can be forcibly removed from office even after winning. It is as if you have committed a violent crime…This is even more ridiculous because such a person can contest state/national elections,” Narsappa tells IPS.

The government seems to be well-aware of  the discriminatory laws as well. In August 2019, India’s health minister Harsh Vardhan wrote to his colleagues in the law and justice, and social justice and empowerment ministries seeking the amendment of 108 laws that discriminate against persons affected by Hansen’s Disease.

“Even though the disease is now fully curable, it is disturbing to learn that there still exist 108 discriminatory laws against persons affected by leprosy, including three Union and 105 state laws. The National Leprosy Eradication Programme (NLEP) has achieved enormous success in leprosy control, particularly in the last four decades,” the health minister said in a letter shared with the media.

In July 2018, the Supreme Court of India had also directed the government to end 119 laws that it considered discriminatory. The court also directed the government to run a countrywide awareness drive on Hansen’s Disease.

However, little has been done since then, says Narsappa.

“The only big step that we saw is repealing the law which allowed divorce on the ground of leprosy,” he tells IPS, referring to the Elimination of Discrimination against Persons Affected by Leprosy (EDPAL) Bill – commonly known as the Divorce Bill — which was passed by India’s parliament in February 2019.

• In Brazil, similar demands have been raised to provide equal rights and treatment of leprosy-affected people especially of children who are often denied schooling.
• However, the country has no discriminatory laws as of now, according to Alicia Cruz – a United Nations expert who visited the country in 2019.

In Indonesia, the social discrimination has been discouraging the leprosy-affected from seeking treatment, says Al Qadri, deputy head of the Leprosy Association (Permata), an NGO that works for the welfare of leprosy patients.

“Because of embarrassment and  fear of stigma, those who are suffering from the disease do not go to the health clinics in time. They hide until its too late and the disease has taken an advanced form,” Qadri says.

There is hope in hopelessness

In India, a portion of government jobs are reserved for persons with disabilities. However, leprosy-affected people who have disabilities are often denied the benefits of this policy. Narsappa of APAL recalls how he was denied a job with the local government.

“After being rejected three times, I visited the District Collector (a senior government official) whose office had announced a vacancy. But instead of hearing my plea, he told me, ‘you can still walk and move, why do you think you deserve this job?’ From his tone, I could sense that my past (disease) was the real issue,” says Narsappa who is now actively advocating for leprosy-affected people’s right to employment and old age pension – another government program which often fails to reach the leprosy-affected.

A strong ground movement is also in the making for calling for the land rights of the leprosy-affected.

Maya Ranvare, an executive member of APAL who is leading the movement in Maharashtra state of western India, says that though there are over 70 colonies across India, few of the residents have an individual ownership.

“Our cities are expanding so fast! We worry that tomorrow, our land will be grabbed by illegal real estate developers and we will not be able to do anything,” Ranavare tells IPS.

Activists like Ranavare are now approaching the state human rights commission to instruct the government to give land ownership certificates to leprosy colony residents. Last month, in Ratnagiri – a neighbouring district, the government started the process after being instructed by the commission, she reveals.

“Our fight today is the fight for our basic rights to equality, employment and land. But we also need a set of common, fair laws that makes all of these possible,” says Ranavare.

Excerpt:

Jennifer Quimno of the Coalition of Leprosy Advocates of the Philippines (CLAP) (centre) is joined by Sri Lanka's Shagana Thiygalingam (L) and Amarasinghe Manjula (R) after Quimno delivered the recommendations presented by the Global Forum of People's Organisations on Hansen's Disease to the International Leprosy Congress in Manila on September 11. Credit: Ben Kritz/IPS

By Ben Kritz
MANILA, Sep 11 2019 (IPS)

Stronger government action to fight stigma and discrimination, more government funding for health and non-health support programmes, and a larger role for people’s organisations in developing policy towards Hansen’s disease treatment and eradication are still needed for eliminating the disease.

This was some of the recommendations made by participants of the first ever Global Forum of People’s Organisations on Hansen’s Disease today, Sept. 11 during a presentation to global academics, scientists, researchers, health staff, partners and those affected by the disease at the 20th International Leprosy Congress (ILC).

Jennifer Quimno, secretary of the Coalition of Leprosy Advocates of the Philippines (CLAP), was chosen by the forum participants to represent the group.

“I really felt I was carrying everyone’s voices with me,” Quimno told IPS.

Ending stigma, improving cooperation

The ILC, which is currently being held in Manila, Philippines, is hosted every three years and was last held in China in 2016.

Prior to the start of the congress, Japan’s Sasakawa Health Foundation (SHF) and The Nippon Foundation (TNF), which support elimination of the disease as well as various organisations of persons affected by the disease, held a global gathering from Sept. 7 to 10. For the first time, organisations of those affected by Hansen’s disease from 23 countries across Africa, Asia, Latin America and the Caribbean met to share their know-how and experiences in eliminating Hansen’s disease.

Along with recommendations for eliminating discriminatory laws and practices, including social, psychological, and economic support in Hansen’s disease management programmes, and giving people affected by the disease a greater voice in policy formulation, the forum debated that a shift in terminology from “leprosy” to “Hansen’s disease” be promoted to help combat the historic stigma associated with the disease. No consensus was reached, however.

The recommendations called for comprehensive action and the involvement of non-health agencies and other stakeholders, because areas such as clean water and sanitation, proper housing, education, and dignified work are all, in the view of people’s organisations, critical to efforts to stamp out the disease.

The forum also called for a much greater role for people’s organisations in sustaining Hansen’s Disease treatment, rehabilitation, and services, and in promoting dignity, equality, and respect for human rights.

“Hansen’s disease is more than a disease caused by a bacterium. Poverty, institutional, social and political neglect, complacency and the structural invisibility of vulnerable populations contribute to the perpetuation of Hansen’s disease,” the final draft of the forum’s recommendations read.

Other key recommendations presented to the ILC by the forum include: More funding for research to fill scientific knowledge gaps that still exist (much remains unclear about the transmission of the disease); greater focus by national programmes on case detection, disability prevention, and rehabilitation during treatment; and more funding for “care after cure” programmes, including psychological, social, and economic rehabilitation.

To combat the stigma associated with the disease, the forum urged the widest possible dissemination and adoption by governments, NGOs, and other stakeholders of United Nations guidelines for the elimination of stigma and discrimination. 

The conclusions also made a firm demand for the elimination of all existing discriminatory laws and practises globally, saying that this would further require “affirmative and reparation policies,” in order to be truly effective in promoting equality.

The people’s organisations also made a call for a greater role in government policy-making toward leprosy. They did not neglect improvements in their own capabilities as well. While calling on governments to develop measurable action plans, the people’s organisations noted they must improve their effectiveness by through strengthening networks, and engaging more productively with governments.

Hope for the future, but a few uncertainties

Participants at the global forum who attended the first day of the ILC expressed hope the recommendations would lead to positive action, but noted uncertainties remain.

“Being able to do this at the ILC is a milestone for us, to have our perspective heard,” Frank Onde, president of CLAP, told IPS. While people affected by Hansen’s disease have regularly participated in the ILC, Onde felt this was the first time recommendations were presented in an organised way.

For Indonesia’s Ermawati, a member of PerMaTa, “Attending this congress is like a dream, to come from my village to be involved in a gathering like this,” she told IPS. “It’s inspiring, and I hope it would inspire others [affected by leprosy] to join us and help others.” 

Ermawati was hopeful the recommendations would lead to greater awareness and reduce stigma, particularly the discrimination against women in her country. “I hope it leads to greater acceptance, particularly of us women. In my country, the stigma is very great.” One problem faced by Indonesian women afflicted with leprosy is that they cannot marry; if laws in an area do not actually prohibit it, the culture in most places encourages men to shun these women.

Shagana Thiyagalingam, who is from Sri Lanka, felt that Quimno’s presentation was inspiring. Quimno spoke of how after both she and her father had contracted the disease, but how she still continued her studies currently works with the government health department. “Her story was so motivational,” Shagana told IPS. “It should encourage other women to come forward and feel less stigma.”

Thiyagalingam’s traveling companion Amarasinghe Manjula was likewise inspired by Quimno’s personal story.

While optimistic about what lies ahead, CLAP’s Onde, and his Indonesian counterpart Paulus Manek, the president of PerMaTa, expressed a few reservations. “The barriers [between people’s organisations and government agencies] really need to be minimised,” Onde said.

Manek saw the size of the ILC gathering itself as a sort of barrier to effective action. “It’s almost too big,” Manek said. “I see people here, they are interested in one or two issues only. Maybe there should be a closer focus on fewer issues at once.”

He also suggested that new guidelines from the United Nations Human Rights Council would be useful.  

“It would help us,” Manek said. “I think the media can also help to spread awareness and stopping discrimination.”

Quimno for her part was hoping to see some concrete actions taken as a result of her presentation on behalf of the global forum. “There are so many gaps to fill, so I would hope these people here would commit to studying and planning actions to take on the things we recommended. That would be progress.”

• The forum was organised by Japan’s Sasakawa Health Foundation (SHF) and The Nippon Foundation (TNF), which support elimination of the disease globally and provide information and awareness about the disease through their Leprosy Today website.

Her experience and the chance "to help strengthen Colombia, the world, and my family" through participating in the Global Forum of People's Organisations on Hansen's Disease, sponsored by the Nippon Foundation and the Sasakawa Health Foundation, was like "rising from the ashes" for Lucrecia Vazques from Felehansen Colombia. Vazques' family was hit hard by leprosy, with not only herself, but her son and one-month-old granddaughter being afflicted. Credit: Ben Kritz/IPS

By Ben Kritz
MANILA, Sep 10 2019 (IPS)

The Global Forum of People’s Organisations on Hansen’s Disease, which was attended by members of people’s organisations from 23 different countries, wrapped up in Manila, Philippines, today Sept. 10 after four days of discussion and deliberation.

The main outcome was a set of recommendations, which included participants stating that those affected by the disease should have more inclusive roles in the global campaign against leprosy.

Asked to share his impressions of the forum with his fellow participants, Joshua Oraga, who is a member of ALM Kenya, a local Hansen’s disease non-profit, told the audience, “We should all familiarise ourselves with the WHO [World Health Organisation] guidelines on strengthening the participation of persons affected by leprosy in leprosy services. That should be our creed, because if you look at that document, you will see that we are the only stakeholders who have an end-to-end role.”

He said that those affected by leprosy or Hansen’s disease had a role in overcoming stigma and discrimination.

“We have a role in the promotion of equity, social justice, and human rights, we have a role in addressing gender issues, we have a role in the dissemination of information, education, communication…. We have a role in advocacy, we have a role in counselling and psychological support, we have a role in training and capacity-building, we have a role in referral services, we have a role in resource mobilisation…. So, we are everywhere!”

Oraga’s enthusiastic impressions in a way defined the outcome of the forum organised by Japan’s Sasakawa Health Foundation (SHF) and The Nippon Foundation (TNF), which support elimination of the disease globally and provide information and awareness about the disease through their dedicated website titled Leprosy Today.

The recommendations will be presented on the first day of the International Leprosy Congress (ILC), which is also being held in Manila from Sept. 11 to 13. The recommendations addressed increasing awareness of Hansen’s Disease among the public and governments, calling for greater government support for people’s organisations’ advocacies, taking a larger role in helping to form anti-leprosy policy, and working to build sustainability and more effective networks among organisations spread around the world.

Participants at the Global Forum of People’s Organisations on Hansen’s disease from Asia, Africa and Latin America try to reach a consensus on issues related to leprosy-affected people. Credit: Stella Paul/IPS

A true people’s forum

To Dr. Takahiro Nanri, Executive Director of SHF, the real value of the recommendations lies not in their details, but in the manner in which they developed.

Nanri noted that the forum’s carefully-planned agenda was quickly thrown off-schedule by the spirited discussions among the participants. “The people really led the forum, and did the work they wanted to do, and I am very happy about that.”

“The recommendations were good ones, but what I think is really important is the process we saw,” he added.

Oraga was likewise pleased and motivated by his experience. Oraga, who had leprosy as a youth, said, “This is the first time I have had the opportunity to take part in a meeting at this level, so imagine my excitement and happiness to be able to come here.”

Oraga also expressed his gratitude for the work that Yohei Sasakawa, World Health Organization’s (WHO) Goodwill Ambassador for Leprosy Elimination and chairperson of TNF, has done over the last four decades. Sasakawa’s foundations have contributed over USD200 million in financial support for the WHO’s Global Leprosy programme. He also advocated for discrimination and stigmatisation against people affected by Hansen’s disease to be included in the United Nations human rights agenda. The resolution was passed in 2010.

“He has done so much for leprosy around the world, and personally I am grateful. Just think of it, because of Mr. Sasakawa, in three years, maybe leprosy will just be like any ordinary sickness,” Oraga said.

Lucrecia Vazques of Felehansen, Colombia also felt the forum was an extraordinary experience. “It’s been wonderful,” she told IPS through a Spanish translator. “It is like resuscitating after a hard moment.”

Vazques’s bubbly personality belies her own difficult experience with Hansen’s disease, which not only afflicted her, but her one-month-old granddaughter and her son, who was diagnosed first.

“It was hard,” Lucrecia said. “I had no knowledge whatsoever.We thought we would die.”

“But there was something to fight for, and to live for, and here I am. This forum means rising from the ashes. And if I had the choice, I would rise from the ashes again, and I would be right here, to help strengthen Colombia, and the world, and my family,” she said.

Looking ahead

But there is much work to still do.

“Because this was a people-led forum, it gives us direction. As you know, our resources are not limitless. We have an obligation, but it is of course better if we can maximise our efforts, and the recommendations help,” Nanri said.

Nanri reiterated the value of the “process” that he saw evolve during the forum, particularly in the context of the Joint Campaign on World Leprosy Day 2020, which will be observed on Jan. 26 next year.

“This was a step. You don’t go from the ground to the 10th floor in one jump. So now the first step has been taken. The next step is to get the groups around the world to do the activities at the same time,” which is the goal of the joint campaign. “When these recommendations are presented at the ILC, the next step can begin,” he said.

Yohei Sasakawa

By Mario Osava
BRASILIA, Jul 16 2019 (IPS)

At the age of 80, Yohei Sasakawa continues to travel around the world to promote solutions for some of the challenges facing humanity, such as Hansen’s Disease or leprosy, wars and disabilities, factors of stigma and exclusion.

Engaging in dialogue with world leaders and with those affected by Hansen’s Disease, who are generally poor, is his way of mobilising local efforts, with the financial and technical support offered by the 23 organisations that network with the Nippon Foundation, whose board of directors has been chaired by Sasakawa since 2005, after his 17 years as executive president.

Social innovation is the declared mission of the Foundation, created in 1962 as a private, not-for-profit entity based in Tokyo.

Since 2001, Sasakawa has been a World Health Organisation (WHO) goodwill ambassador for leprosy elimination.

Since 2013, he has also served as the Japanese government’s special envoy for National Reconciliation in Myanmar (Burma), reflecting the diversity of his activism, which ranges from protecting the oceans to assisting the disabled and vulnerable children.

For more than 40 years, he has devoted much of his work to combating Hansen’s Disease and its associated ills, such as prejudice, stigma and discrimination, which persist despite the fact that this infectious disease is known to be completely curable and stops spreading once treatment begins.

As part of his work against leprosy, Sasakawa was in Brazil Jul. 1-11, where he met with political and health authorities in the northern states of Pará and Maranhão, two of the states with the highest incidence of leprosy, a medical term banned in the country and replaced by Hanseniasis.

Later, in Brasilia, Sasakawa met with President Jair Bolsonaro and his health and human rights ministers. They agreed to hold a national meeting in 2020 on Hansen’s Disease in Brazil, the country with the second highest number of new cases in the world, with 26,875 in 2017, second only to India with 126,164 cases, according to WHO data.

Sasakawa is particularly concerned about the problems of discrimination and inequality, and not just the disease, he says in this interview with IPS.

Faustino Pinto, national coordinator of the Movement for the Reintegration of People Affected by Hanseniasis (Morhan)

By Mario Osava
BRASILIA, Jul 15 2019 (IPS)

On Jun. 27, Faustino Pinto was in Geneva, Switzerland, where he spoke to people at the United Nations about the fight against Hansen’s Disease and the stigma surrounding it, at a meeting during the 41st session of the Human Rights Council.

Eleven days later, in Brasilia, he discussed the question with President Jair Bolsonaro, when he took part in a meeting along with Yohei Sasakawa, president of the Nippon Foundation and World Health Organisation goodwill ambassador for leprosy elimination, who visited Brazil Jul. 1-10.

Pinto was able to present his views, as national coordinator of the Movement for the Reintegration of People Affected by Hanseniasis (Morhan), in all the meetings Sasakawa held with ministers, legislators and health and human rights officials in the Brazilian capital.

The aim was to intensify action at a national level to eliminate the infectious disease as well as the discrimination suffered by current and former patients.

Abolishing the term leprosy to refer to the disease caused by the Mycobacterium leprae bacillus is a central focus of Pinto, who sees it as necessary given the burden of prejudice that the word has accumulated over centuries, which is even reflected in sections of the Bible.

Another great difficulty, he said, is the lack of knowledge about the disease among the public, which hinders early detection, needed to prevent permanent damage in patients, such as damage to the peripheral nervous system that can even cause disabilities.

Pinto felt the first symptoms of the disease at the age of nine and suffered for another nine years until he was diagnosed with Hanseniasis. Because of the delay, the five years of treatment he later received could not prevent some permanent damage, especially noticeable in his hands, which are partially paralysed.

He emphasises the need for early diagnosis in order to achieve a true cure for patients and ultimately eliminate the disease. At the age of 48 he became an activist who is known even at an international level, as he combats Hansen’s Disease which mainly affects the poor.

In Brazil there are almost 30,000 new cases per year, a figure surpassed only by India.

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

By Mario Osava
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 50 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 26.875 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 (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

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.

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

By Mario Osava
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

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.

Excerpt:

Yohei Sasakawa (C), president of the Nippon Foundation and World Health Organisation Goodwill Ambassador for Leprosy Elimination, shakes the hand of Sebastião Miranda Filho, the mayor of Marabá in northern Brazil, where the foundation finances a project to distribute food to poor families affected by the disease, to encourage them to complete treatment. Credit: Artur Custodio/IPS

By Mario Osava
BRASILIA, Jul 8 2019 (IPS)

When cases of Hansen’s disease, better known as leprosy, increase in Brazil, it is not due to a lack of medical assistance but to the growing efficacy of the health system in detecting infections, contrary to the situation in other countries.

This unique aspect of the disease was highlighted during a Jul. 2-7 visit by Nippon Foundation President Yohei Sasakawa to the northern Brazilian states of Pará and Maranhão, to learn about and reinforce efforts to reduce the incidence of the disease.

Sasakawa continued his tour of this Latin American country on Monday Jul. 8 in Brasilia, where he will meet with President Jair Bolsonaro and other authorities from the executive, legislative and judicial branches, before returning to Japan on Wednesday Jul. 10.

The Nippon Foundation funds several projects in Brazil, one of which facilitates telephone and Internet communications, to expand and improve information about this chronic disease and combat the prejudice, stigma and discrimination surrounding it.

Early detection is one of the recommendations stressed in Sasakawa’s meetings with authorities in the Amazon jungle state of Pará, according to Claudio Salgado, a professor at the Federal University of Pará who is president of the Brazilian Hansenology Society.

“Hanseniasis (as the disease is called in Brazil) doesn’t manifest itself in acute outbreaks of fever, chills and confusion, like malaria,” he told IPS from Belem do Para.

Symptoms, such as numb spots on the skin, often take years to appear, when the effects are already irreversible, including loss of fingers and crippling or paralysis of the hands or entire limbs.

In addition, the cases are widely dispersed, making it even more difficult to identify patients, even though there are means of early detection, such as the screening of household contacts of leprosy patients.

An estimated 95 percent of people have natural immunity to infection. Hansen’s disease is not as contagious as many people believe. It takes prolonged, close contact over many months with an untreated leprosy patient to catch the disease, and patients are no longer contagious after only a few days of antibiotic treatment.

For all these reasons, it could be deceptive to set quantitative goals, such as the target adopted by the World Health Organisation (WHO) to “eliminate” leprosy by the year 2000, Salgado argued. “Elimination” is defined as a prevalence rate of less than one case per 10,000 persons a year.

The battle against Hansen’s disease gained a key ally in 1982, when multidrug therapy became available. More than 16 million people have been cured since then, according to WHO.

Brazil is the only country in the world that did not formally meet the goal. In 2017 there were 26,875 new cases in a population of 200 million, translating to 1.35 cases per 10,000 people, according to a WHO report.

But Salgado calls into question statistics that point to a sharp reduction in cases, which he said is epidemiologically impossible. He also throws doubt on the claim that Brazil accounts for 92 percent of all new cases in the Americas, as recognised by the Brazilian Health Ministry in its National Strategy to Combat Hanseniasis 2019-2022.

The governor of Maranhão, Flavio Dino, held a dinner for the delegation of the Nippon Foundation, which funds projects for those affected by Hansen’s disease in several cities in this state in Northeast Brazil. The visit and meetings with health officials bolstered new efforts to combat the disease and its consequences, such as disabilities, stigma and discrimination. Credit: Artur Custodio/IPS

He says this indicates that very different situations with respect to leprosy, between Brazil and its neighbours, in spite of similar economic, social and environmental conditions.

An apparent paradox: a country where diagnosis and treatment of Hansen’s disease is reduced would have favourable statistics, in contrast with the likely expansion of leprosy. In other words, fewer cases would be detected, even if the situation was actually getting worse.

In Maranhão, the second Brazilian state visited by Sasakawa, the rate is high: 4.4 new cases per 10,000 persons.

“We detect 3,125 cases per year on average,” reported Lea Terto, superintendent of Epidemiology and Disease Control at the local Health Ministry.

The fact that Maranhão is the state with the largest number of infected children and adolescents under 15 is a concern, because it indicates that they are living with untreated adults, he told IPS from the regional capital, São Luís.

Sasakawa was welcomed by health workers at the clinics, former leprosariums and cities he visited, who celebrated the benefits of projects funded by the Nippon Foundation.

Maranhão was the state that benefited the most from a project implemented since 2017, aimed at strengthening detection and treatment of Hansen’s disease in the 20 municipalities with the highest prevalence of the disease, Artur Custodio, national coordinator of the Movement for the Reintegration of Those Affected by Hanseniasis (Morhan), told IPS from São Luís.

The visit was “very positive” in terms of strengthening the disposition of those involved in the issue and bolstering the local government’s commitment to combatting the disease and the problems that hinder its prevention, Terto said.

She was impressed by Sasakawa’s statement that “people who are prejudiced are sicker” than patients with Hansen’s disease.

“Active search and exams of household contacts” are the priorities of her work, to “reduce prevalence in a concrete and responsible way,” which means a slow reduction of about two percent of new cases a year, said Terto, who has been a nurse for 37 years.

It is actually better if more cases appear than expected, she said, because it means that new untreated patients have been identified.

In addition to the difficulties of making leprosy visible, there are concerns about people quitting treatment, which can last from six months to more than a year depending on the severity of the case. In the most complex cases, a major effort is required to ensure that the patients stick with the treatment until the leprosy bacteria is eliminated.

To encourage patients to complete the multidrug therapy, the Foundation is funding the distribution of baskets of basic foodstuffs to affected families in Marabá, a city in the interior of the state of Pará, visited by Sasakawa on Jul. 3.

Better nutrition gives a boost to the treatment, which is effective if the infected person takes the antibiotics for the prescribed period of time.

Sasakawa began his tour in northern Brazil with a visit to the Marcello Candia Clinic, a dermatology reference unit in Marituba, a city of 108,000 inhabitants in Pará.

A former leprosarium marked the history of the city and of José Picanço, head of Morhan in Pará. He and his two siblings were separated from their parents, who had the disease and were isolated in the institution in 1972. Picanço and his siblings were also treated like “lepers”.

Children of people with leprosy were taken away from their parents and placed in orphanages. It is estimated that between 15,000 and 20,000 people in Brazil suffered – and still suffer – the social and psychological consequences of hanseniasis, because of the former law for the segregation of people with the disease.

Picanço’s parents, who lived until 2007, at least achieved the right to compensation for the violence perpetrated against them by the State. But their grown children continue to fight for this right as victims.

“There are states, such as Minas Gerais and Ceará, that are working towards recognition of this right, by government decree or bills making their way through parliament. But since the problem resulted from a national policy, it is up to the federal government to compensate us,” Picanço told IPS from Belem.

He said Sasakawa’s visit strengthened the struggles for early diagnosis of the disease, the rights of those affected and the need for greater coverage of hanseniasis in the media, which is currently limited to an annual campaign in January.

Dexter, a 25-year-old fisherman from Pohnpei in the Federated States of Micronesia, received treatment for Hansen’s disease, also known as leprosy, for over a year. He has been cured of the disease. Credit: Stella Paul/IPS

By Stella Paul
POHNPEI, Apr 8 2019 (IPS)

It’s a good day for Dexter, a 25-year-old fisherman from Pohnpei in the Federated States of Micronesia. He’s just been told that he is cured of leprosy.
“I have been sitting at home for nearly a year now,” Dexter, who doesn’t want to reveal his last name, tells IPS. “But now I can finally return to my job,” he says with a smile.

However, not every patient in Pohnpei State may be as fortunate as Dexter. The region is grappling with a shortage of leprosy drugs. Multidrug therapy (MDT) is provided for free by Novartis, through the World Health Organisation (WHO) and distributed across the globe. But Pohnpei has to send through an application for new stock to the national government.

“We have not received any fresh supply of drugs this year, so we are giving what we have in our stock although they are now expired,” reveals Dr. Elizabeth Keller. She is the acting chief of Pohnpei State’s Department of Health Services and also heads the region’s leprosy programme.

Pohnpei State has the largest number of leprosy cases in the country—nearly 100 new cases are reported here every year. And Micronesia still remains one of three Pacific island nations, along with the Marshall Islands and Kiribati, that is yet to eliminate leprosy or Hansen’s disease. In fact, according to the WHO, Micronesia has the highest prevalence of Hansen’s disease in the entire Pacific.

But the news of the shortage in Pohnpei State appears to take many by surprise, including Mayleen Ekiek, who heads the country’s National Leprosy Programme (NLP).

“I am surprised to hear this. This should not happen. I don’t know why they have not received the fresh stock because the supply is made once the requisition is submitted to the government,” she comments.

But it is easy to see how Ekiek could be unaware of the situation.

Providing healthcare to the country’s estimated 105,000 people, who are scattered over 65 of the country’s 607 islands, is complicated. While the Micronesia’s four states receive their funding directly from the national government, they work independently and usually only communicate directly with the federal government.

“The Department of Health Services in each state provides medical and public health services through a hospital, community health centres and dispensaries. Each state system is autonomous,” states the WHO.
As state health departments are not mandated to report to the NLP, Ekiek is sometimes caught unaware by developments, such as the current drug shortage.

However, Keller says that her department has already asked for the fresh supply and hopes it would come soon. Meanwhile, she assures that the medicine will not cause any adverse effect on the patients’ health. “These may not work as effectively as fresh drugs, but they will not harm,” she says.

Dr Arturo Cunanan with a patient at a leprosy clinic in the Federated States of Micronesia. Cunanan, a world expert on Hansen’s disease, says that a review of Micronesia’s national leprosy programme is overdue. Credit: Stella Paul/IPS

And while there is also a mechanism to bring the various states in Micronesia together to collaborate their leprosy services, Ekiek says that without funding it would be hard to do.

“I also lead the national programme on [tuberculosis] TB and I often piggyback on the TB budget to visit our leprosy programmes in the state. But I cannot organise a meeting of the state leprosy workers because it would require about 40,000 dollars-which is too big of an amount to be extracted from another programme budget,” Ekiek explains.

Budgetary allocations aside, Micronesia also has the challenge of a lack of credible data. Clear, defined parameters of data can help paint an accurate picture of leprosy in the country, and also provide information about the exact number of new cases.

In addition, a database of all the people affected by leprosy, and those who are undergoing treatment, can be created to make the information easily accessible.

Because without credible data, there is currently no uniformity in the statistics provided by the national and the state programmes.
“We received 89 new cases in 2018. This year, between January and March, we have seen 35 news cases,” Keller informs.
But according to Ekiek, there were probably just 75 new cases in 2018.
“Honestly, we cannot be sure because we don’t have a clear database yet. We don’t have a trained data analyst or staff who is skilled to compile and visualise statistics,” she admits.

While the confusion among the different government agencies continues, some experts feel that it is because of a lack of coordination and that a review of the national leprosy programme is overdue.

“The national leprosy programme has not been reviewed for a long time, so we don’t know what is working and what is not. Maybe they need a complete overhaul of the system or maybe they just need some training in data, records and office management,” says Dr. Arturo Cunanan, a world leprosy expert and chief of Cullion Sanitarium and General Hospital in Philippines. Cunanan, who is also recipient of the Gandhi Peace Prize for his work with leprosy, was visiting Micronesia with the Sasakawa Health Foundation/Nippon Foundation to review the current progress in eliminating leprosy.

“But without that review of the current programme, a true need assessment is not practically possible,” Cunanan, who has trained several health department staff across Micronesia region, including Ekiek, says.

* Additional reporting and writing by Nalisha Adams in Johannesburg

Jack Niedenthal, the secretary of Health and Human Development in the Republic of Marshall Islands stands in front of the poster that records the dark past of the Pacific island nation and the need for good healthcare. Credit: Stella Paul/IPS

By Stella Paul
MAJURO, Apr 5 2019 (IPS)

In Jack Niedenthal’s office in Majuro, there is an ominous reminder of the dark history of the Marshall Islands—once the site for dozens of nuclear tests conducted by the United States between 1946 and 1962. But it also provides a strong message about the future of island nation.
“Given what the Marshall Islands has done for humankind, we deserve the best healthcare in the world,” reads a poster on his wall.

“What you see here is what I strongly believe,” says Niedenthal, the secretary of Health and Human Development here.

In fact, today the Pacific island nation’s main national income, aside from the sale of fishing rights to foreign firms, is the money the U.S. pays as compensation for conducting the nuclear tests through the Compact Trust Fund.

Many of those who live on the islands where the nuclear tests where conducted suffer from cancer. These cases are in addition to the high occurrences of tuberculosis (TB), diabetes and leprosy that the health authorities here have to address.

Niedenthal tells IPS that although the latter three diseases are not directly connected to the nuclear tests or radiation, the nation’s citizens, some 53,000, must be able to realise their right to good health and have the opportunity to live long lives. However, the resources to ensure that good healthcare is available to all remains limited.

So, Niedenthal is adopting practical measures by integrating services to provide care for people suffering from two of the country’s most endemic diseases, TB and leprosy. From the screening of citizens for potential new cases, to consultations with doctors and nurses, the integration is supposed to mean better and more accessible services. “It’s a small place. If tomorrow there is an epidemic, it will affect everyone. So, [an integrated] programme will help us be better prepared,” Niedenthal says.

The integration is a natural step in strengthening the healthcare sector here, but it should also include the sustained availability of services, say health experts. Without ensuring the latter, integration will neither result in significant improvement nor will it help eliminate the diseases, especially leprosy, says Dr. Arturo Cunanan, the head of the Culion Sanitarium and General Hospital in the Philippines and a world leprosy expert.

“Ideally, this is how it should be. Care for leprosy should be integrated with the general healthcare services. It is the only way to ensure the care is available at every level of the healthcare sector—right from the village to the city.
“If this can be done, a person who is affected, doesn’t have to travel far and wide to a specialised clinic or be dependent on a niche expert because every healthcare centre will have a person with some level of leprosy expertise. However, the two much go hand in hand because without sustained services and availability of that expertise, the integration cannot achieve anything,” Cunanan tells IPS.

Jefferson Barton, the Deputy Secretary of the Republic of Marshall Islands, says that the government considers leprosy elimination a high priority. Credit: Stella Paul/IPS

According to Cunanan, leprosy, is a “victim of its own success” meaning that due to the decreased number of cases, it is not a high priority with the governments anymore, even in countries were it is not yet eliminated.

The low priority is reflected in the low resource allocation, inefficiency in the management of the programme besides lack of facilities and skilled staff.

But while supplying integrated healthcare services promises to ease the management of the leprosy programme at an administrative level, it also can create scarcity of staff with specialised skills to treat leprosy. Sustainability, therefore, must be the key, Cunanan explains.

But Jefferson Barton, Deputy Chief Secretary of Republic of Marshall Islands (RMI), says that the government considers leprosy elimination a high priority.
“Health and education are our top priorities and even in health, we are focusing on educating the Marshallese people, especially the children, about the biggest health issues,” Barton tells IPS.

He, however, also assures that the country is willing to collaborate more with international experts, and donors such as the Sasakawa Health Foundation and its parent body the Nippon Foundation, to ensure better healthcare in RMI.
Globally, the treatment of leprosy is free. Manufactured and donated by Novartis, multidrug therapy or MDT, is distributed through the World Health Organisation.

But access to other services such as information about the disease, and credible, accurate and cleaned data on leprosy and TB is less than adequate—a fact that Niedenthal admits. He, however, believes that with support from the international community the country can overcome these challenges and ensure sustained healthcare for all.

“A lot of Marshallese travel and work abroad. If they carry a disease, it will affect people there. So, when you give us money to control the disease here, you are investing in your own well-being,” Niedenthal says.

Dr Ken Jetton (left) and Dr Arturo Cunanan (centre) with a patient who has been cured of leprosy in the Majuro leprosy clinic in the capital of the Marshall Islands. The patient is now seeking further help due to post-treatment complexities. Credit: Stella Paul/IPS

By Stella Paul
MAJURO, Apr 4 2019 (IPS)

It’s a Friday morning and Dr. Ken Jetton, the only doctor who treats leprosy in Majuro, the capital of the Marshall Islands, is seeing a patient recently cured of the disease.
David, 32, has received multidrug therapy (MDT) treatment for a year already. But he is back in the doctor’s office because of a reversal reaction that has occurred.

David, who asks to be referred to only by his first name to protect his privacy, has a stiffness in his fingers. A carpenter by profession, the stiffness is causing David greater financial loss than leprosy did as he cannot hold the tools of his trade in his hand any longer.

“This is the kind of patient I typically attend to…people who have been cured of leprosy, but have physical disability due to reversal reaction to the treatment,” Jetton tells IPS.

According to authors Francisco Vega-Lopez and Sara Ritchie in ‘Manson’s Tropical Infectious Diseases’, reversal reaction is one of two distinct reactions that occur after becoming infected by the bacterium that causes Hansen’s disease, also known as leprosy.

“Reversal reactions may cause acute inflammation causing rapid loss of nerve function and require prompt initiation of treatment with oral steroids,” the authors note. They also note that this reaction can occur before, during or after treatment.

Dr. Arturo Cunanan, a world expert on Hansen’s disease, tells IPS that almost everyone shows some symptom of reversal reaction. However, the degree to which it presents varies from person to person. Those who are diagnosed and treated late have more visible signs of disability than those who were diagnosed and began treatment early.

Resource crunch limiting services
But Jetton tells IPS that he is restricted by a lack of resources and unable to reach out to other patients who, like David, need his services as a doctor.

“It is at this stage that they need me even more because they are puzzled by this [disability] and they also suffer financially. But I cannot see all of them, especially those living in the outer islands,” Jetton explains.
The physician is based in Majuro, the capital of the island nation. But Marshall Islands has 28 other atolls, where there are many active cases of leprosy reported.

But while some of these islands are a short boat ride away, the others are not so easily reachable.
“There is a car for our office use but I do not get an allowance to buy petrol for the car. Who will pay for the boat and the visits to the outer islands?” Jetton asks.

The resource crunch seems a direct result of the decreasing budgetary allocation for health in the country’s five-year funding plans. According to government records, in 2016 the Department of Health was allocated just over 25,000 dollars for its budget. However, this year the amount was 23,000 dollars.

Even for a tiny nation like the Marshall Islands, which has a population of just over 53,000, the health budget is considered small.
There are reportedly 65 healthcare centres across the various atolls. And according to Jetton there are only a handful of staff managing these.

While MDT is provided free by Novartis, through the World Health Organisation (WHO), there are no funds to staff a leprosy centre outside of Majuro. And the country records some 75 new cases of Hansen’s disease each year.

Dr. Ken Jetton, is the only doctor who treats leprosy in Majuro, the capital of the Marshall Islands. Credit: Stella Paul/IPS

New leadership, new approach
The constraints of working with an inadequate budget goes beyond fuel allowances, Jack Niedenthal, the Secretary of Health and Human Services in the Department of Health, tells IPS.
The biggest challenges of the department, says Niedenthal who took over the post early this year, are the lack of skills, capacity and infrastructure required to fight endemic diseases in the island nation.

“All the staff here are underpaid and overworked. They need skill-building training, and we need infrastructure, including new facilities to detect, diagnose and treat,” Niedenthal is heard saying during a meeting with a team from the Sasakawa Health Foundation led by its CEO, Takahiro Nanri.

There are several areas where the staff would benefit from further training. Data and record keeping is one of them, points out the secretary before making an appeal to international experts.
“Instead of inviting us abroad, visit us here and train our staff right here,” says Niedenthal. He was formerly the Secretary General of the country’s Red Cross Society and has a strong human rights approach to health.

Addressing the right audience
Niedenthal’s appeal could potentially bring some positive changes as Yohei Sasakawa, WHO Goodwill Ambassador for Leprosy Elimination, and chair of the Nippon Foundation, the parent body to the Sasakawa Health Foundation, is expected to visit Marshall Islands later this month.

Sasakawa, who is also Japan’s Ambassador for the Human Rights of People Affected by leprosy, and recent recipient of the Gandhi Peace Prize, is keen to understand the situation of combatting leprosy in the country and wants to extend his support to both those providing healthcare as well as those affected by leprosy here.

Jetton is positive that with the help of the foundation they will be able to improve their services to leprosy patients.
In the meantime he prescribes prednisolone, a drug generally used to treat reversal reactions, to David.

By Stella Paul
PHOHNPEI, Apr 2 2019 (IPS)

Mayleen Ekiek has been working with the Department of Health in the Federated States of Micronesia (FSM) for 12 years now. She is the head of the National Leprosy Programme in the Pacific island nation, which still remains one of three, along with the Marshall Islands and Kiribati, that is yet to eliminate leprosy.

Ekiek is responsible for ensuring the smooth running of the leprosy programme, as well as its success.

However, as Ekiek reveals in this interview, the absence of funding at a national level is one of the many roadblocks that she faces. In what seems to be a growing trend across the Micronesia region, FSM also has combined diseases to provide an integrated healthcare service. In this nation the treatment of both tuberculosis and leprosy is combined. However, while there are regular budgetary allocations for TB, there are none for leprosy, otherwise known as Hansen’s disease.

Despite the lack of funding, Ekiek has managed to keep the programme alive because of her sheer grit and passion for seeing a Leprosy-free Micronesia.

During a recent visit of the Sasakawa Health Foundation/Nippon Foundation team to Micronesia’s Health Ministry, Ekiek was on sick leave thanks to a fractured her leg. But to everyone’s surprise, Ekiek attended the meeting as she viewed it as a vital opportunity to seek the resources she needs for the leprosy programme. In the following interview, Ekiek talks about the financial and technical support needed achieve the programme’s goal of eliminating leprosy.

Meretha Pierson, a nurse in the leprosy clinic of Majuro, Marshall Islands, shows the medication to cure leprosy that are provided for free. Credit: Stella Paul/IPS

By Stella Paul
MAJURO, Mar 28 2019 (IPS)

Meretha Pierson has been a nurse for the past seven years, working in the government-run leprosy clinic in Majuro, the capital of the Marshall Islands. Her patients come in all ages, from different economic backgrounds and different professions. But, aside from their diagnosis, they all have something else in common: everyone wants to keep their illness a secret.

“Everyone requests me not to tell their neighbours. But women who are young, request me to not inform even their spouses. ‘Please don’t tell my husband,’ they say.  Sometimes, such a request is really hard to keep,” Pierson tells IPS.

Unwanted labels

There is a reason why Pierson, one of the handful of trained health workers who can detect a case of leprosy, also known as Hansen’s disease, can’t always promise full confidentiality to her patients.

Marshall Islands is believed to have 50 to 80 new cases of leprosy every year – a number that is very big for a population of only 60,000.

According to the World Health Organization (WHO), if more than 1 in every 10,000 people are affected by leprosy, then it should be considered as a disease that has not been eliminated.

Marshall Islands, as classified by the WHO, is therefore far from eliminating the disease.

But it is a classification that the government is eager to get rid of. In mid-2018, the government and the country’s Ministry of Health, ran a three-month long health screening campaign where over 27,000 citizens were tested for both leprosy and tuberculosis so that every affected person could receive treatment.

Concrete details on the number of leprosy cases are yet to be made public, but health workers like Pierson have already been instructed to keep a close eye on the patients who do not return to report on their health and who stop treatment in the middle of the course. And this is why it makes it really difficult to keep the promise of not alerting anyone to their illness as health workers are often compelled to seek out the patients.

Tracking these patients down and convincing them to restart their medication is both a necessity and a requirement that forms part of the government’s new campaign to curb the disease.

But as they do so, the requests for confidentiality becomes more frequent.

“They do not want us to go to their houses. So, we make phone calls, call them to a place outside of their homes and their neighbourhood and that’s where we do our counselling and advise them to return to the clinic for a check-up and continue the treatment. But it’s hard,” Pierson tells IPS.

The leprosy hotspots in the Marshall Islands. Credit: Stella Paul/IPS

Discrimination towards the caregiver

However, it is not only patients who are stigmatised on this island nation. Health workers themselves often bear the brunt themselves in a society where over 80 percent of the population are of Christian faith. Pierson, a Mormon, says that she has often faced discrimination from her neighbours and relatives who have suspected her of having leprosy.

“They think because I work in a leprosy clinic, I am carrying the germ or the disease myself. Some even ask why I do not give up this job. I have to always tell them that I am a nurse and I do not have leprosy myself. Even in the church, I get those stares,” she says. Fortunately, her husband is supportive and has never asked her to leave her job.

The hotspots

There are around 30 atolls that comprise the Marshall Islands and about a quarter of them are known as the hotspots of leprosy, according to Dr. Ken Jetton, the main physician at the country’s Department of Public Health.

Jetton officially diagnoses and confirms leprosy cases after Pierson detects a possible case and refers the patient to him.

He tells IPS that few of these ‘hotspots’ include the atolls of Kwajalein, Ailinglaplap, Mili, Arno, Wotje and Ebon. During the recent mass health screening, about 47 new cases were reported from these places.

The data sheet is yet to be complied, but once this is done, a proper plan will be drawn up to treat each patient until they are cured, Jetton reveals. The medication, Multi Drug Therapy (MDT), an oral medicine, is given free of charge in 6 packs for children and 12 packs for adults.

Understanding the gaps in country’s leprosy elimination campaign is one of the reasons why a team from the Sasakawa Health Foundation, led but its executive director Takahiro Nanri, as well as the world’s leading expert on leprosy, Dr. Arturo Cunanan, are travelling around the Marshall Islands and the Micronesia region. They have been meeting with senior government and health officials and leprosy experts and have visited clinics in Marshall Islands and the Federated State of Micronesia. Yohei Sasakawa, chair of the Nippon Foundation, the parent body for SMHF, is the WHO Goodwill Ambassador for Leprosy Elimination, and Japan’s Ambassador for the Human Rights of People Affected by leprosy. He will be touring the region in April to also assess the progress governments have made.

However, Pierson says that despite the screening and follow up activities, social stigma, especially towards the female leprosy patients might take longer than expected to fade away. This is because the island nation is still largely ignorant of the fact that leprosy as a curable disease, she explains.

Patience, therefore, is the key, she reminds. “We must be patient and  also have empathy for those who hide their diseases from others. They are vulnerable and scared of losing their dignity and we need to understand this,” says the nurse.

By Fabiana Frayssinet
RÍO DE JANEIRO, Mar 15 2019 (IPS)

“More than 50 countries in the world have discriminatory laws against people affected by Hansen’s disease. There is also a lot of discrimination in the public administration…and in society,” Alice Cruz, U.N. Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, said in this interview with IPS (in Spanish, with English subtitles).

The Portuguese-born expert is one of the special participants in the First Latin American and Caribbean Assembly of Organisations of People Affected by Hansen’s Disease – another name for leprosy – taking place in Rio de Janeiro, Brazil on Mar. 12-14.

Among the many examples of violations of the rights of those affected by the disease, Cruz cited the case of children who are expelled from school.

“People lose their jobs, there is discrimination in the community, they aren’t allowed to enter places of worship, etc, and there is discrimination in the family too,” added the Special Rapporteur in the Office of the United Nations High Commissioner for Human Rights.

Cruz pointed out that in 2010, the United Nations adopted “a human rights instrument to guarantee the rights of people affected by Hansen’s disease.”

According to this document, entitled “Draft principles and guidelines for the elimination of discrimination against persons affected by leprosy and their family members”, “States should enforce this instrument which covers all areas of affected persons and protects them from the violations mentioned,” she stressed.

This is the first time that a meeting has been held in Latin America dedicated to people affected by a disease that the World Health Organisation defines as infectious and chronic, caused by the bacillus Mycobacterium leprae and which mainly damages the skin, peripheral nerves, the mucosa of the upper respiratory tract, and the eyes.

Brazil, the host country, accounts for 95 percent of all cases in the Americas, with between 25,000 and 30,000 new diagnoses per year.

The regional meeting is an initiative of the Brazilian Movement for the Reintegration of People Affected by Hanseniasis and the Colombian Federation of Organisations of People Affected by Hanseniasis, with support from Brazil’s Health Ministry and the independent Nippon Foundation.

The region’s findings, together with the ones that emerged from similar assemblies in Asia and Africa, will be incorporated into the proposals for the World Congress on Leprosy, to be held in the Philippines in September.