WHO ’S NEWSLETTER June 2014 • Number 68 FOR THE • Leprosy is curable EliminationOF • Free treatment is available Leprosy • Social discrimination has no place

The cemetery at Tichilesti, a leprosy hospital in southeast Romania dating from 1928, where more than 100 people are buried.

MESSAGE CONTENTS Thoughts from a Cemetery Recently, I stood under a hot sun in the cemetery Malaysia, Ukraine, Colombia and elsewhere. And of Romania’s only leprosarium, Tichilesti. The while science may have progressed, mistaken leprosarium sits in a valley, surrounded by a forest beliefs remain in people’s hearts. of acacia and lilac. Birdsong filled the air. I have written about this before, but I regard More than 100 people are buried in the cemetery the stigmatization of people affected by leprosy — a hundred different stories interred in the earth. — of which state-sanctioned institutionalization Like many leprosariums I have visited over the was but one aspect — as a negative legacy of years, Tichilesti is a world apart. It is set back from humanity. The suffering they endured must never Message 1 the main road, out of sight and out of mind. be forgotten. At the same time, however, this During the country’s Communist era, the negative legacy also has a positive side: people’s Meetings with Ministers hospital was not marked on any map. The powerful will to live in the face of adversity and Conversations on authorities did not want to acknowledge the despair, as well as the humanitarianism of doctors sidelines of World Health existence of leprosy, or those with the disease. and nurses. Assembly 2 Before the development of a cure, the solution Representative of the latter is Dr. Rasvan Human Story to the “problem” of leprosy was to round people Vasiliu, the medical director of Tichilesti. In the Praise the Lord 4 up and isolate them in places such as Tichilesti. future, he would like to see some buildings there Guilty of no crime, they ended up spending preserved as a museum and memorial. Places such Ambassador’s Journal decades of their lives segregated from the rest of as Tichilesti are part of our human heritage. We Switzerland, Romania 5 the population. must ensure that the memories they contain — News Today, we have multidrug therapy. Gone are the and the stories of the people already laid to rest — Interrupting leprosy days when people diagnosed with the disease were are not lost. transmission; leprosy removed from society. But elderly survivors of those vaccine 8 times live on in sanatoriums in , Taiwan, — Yohei Sasakawa, WHO Goodwill Ambassador From the Editors 8

1 MEETINGS WITH MINISTERS FTEL Jun 14 • No. 68 FTEL Jun 14 • No. 68 ‘Leprosy Remains a Preoccupation’ Health ministers outline the various challenges leprosy still poses.

The Goodwill Ambassador met with a number of health being diagnosed right away by general practitioners for the incidence of leprosy in children under Dr. Félix ministers or their representatives on the sidelines of the because they don't recognize the symptoms, so 15. The reason for this is the campaign to de- Kabange Numbi, 67th World Health Assembly for an update on leprosy this is something we need to look at. worm schoolchildren and exam them for leprosy. Minister of Health, DR control activities in their countries. Their comments are The campaign, which is about to begin again, Congo summarized below. Professor Dr. Pe Thet involves not only the ministry of health but the Leprosy is a very big Khin, Minister of ministry of education, churches, NGOs and other challenge, but your Dr. Jose Van-Dunem, Health, Myanmar stakeholders. support has made a Minister of Health, Over the past four to Out of several million schoolchildren difference to our efforts. Angola five years, case numbers who examined themselves, 250,000 reported The problem is now You have a special have remained the something. Of these, 3,000 were sent to see significantly reduced. place in our hearts for same. I have informed a doctor for further examination. Out of this If we can mobilize the visiting our country at President Thein Sein number, 300 were newly diagnosed with leprosy. resources, it will be possible to make even further a very difficult time [in that although we have What is good about the campaign is that children progress. We know the areas where leprosy 2003] and going to the eliminated leprosy as a talk about leprosy with their families. It’s remains; we just need the resources to mount a countryside to see the public health problem, we are still finding some important to take a family approach. campaign. challenges we faced in 3,000 new cases annually. The president knows implementing the program. We will never forget. about the situation and says he will support us in Dr. Alexandre Leprosy remains a preoccupation. The situation bringing down that number. “What is good is that Manguele, Minister of is under control at the provincial level, but in During 2013, I enjoyed productive discussions Health, Mozambique some municipalities is not where we would like it with senior figures working in leprosy for children talk about Mozambique has made to be. Now we have a clearer picture because we many years and received invaluable suggestions leprosy with their families.” great progress in recent are setting up a program to municipalize public and recommendations. One issue is the future years. The economy is health. This will allow us to put more human direction of the Yenanthar Leprosy Hospital in growing; the quality of resources into the field and give us greater control Mandalay. Is it to be a treatment center, a training We are moving forward. In Brazil, leprosy life is improving; the and supervision. We also have a team of Cuban center, a rehabilitation center or a combination of is again on the table. It is a priority. Our new fight against poverty doctors, nurses and epidemiologists helping us in all three? And should it be a leprosy hospital or minister of health, Dr. Arthur Chioro, has the is gathering pace. We 70 municipalities. a general hospital that also takes care of patients same commitment to leprosy as his predecessor. want to use the country’s The drugs for treating leprosy are available with leprosy? I will take the experts’ advice. In July, Brazil is hosting this year’s meeting of natural resources to improve the quality of life. I free of charge, so we have a responsibility to do Another challenge is the social rehabilitation heads of state of the BRICS nations (Brazil, Russia, spent some time in Japan in the 1980s; I learned our best to fight the disease. We are working with of people cured of leprosy, as they are not , and South Africa). Following that a lot and improved my technical capacity as a the minister of social welfare and rehabilitation always accepted by society or even by their meeting, there will be a meeting of BRICS health doctor. I will do my best to see that young health to tackle discrimination. But our main focus is the own families. There are 1,000 acres of land in ministers. The focus will be on neglected tropical professionals go to Japan to be exposed to a national program of dermatology and the training Mandalay that were given to people affected diseases — with an emphasis on leprosy. professional environment, so as to improve services of young doctors and nurses to recognize the main by leprosy some 20 to 30 years ago; they can in Mozambique. I am working with colleagues to dermatological diseases. If they have queries, work the land themselves or rent it out to other Dr. Seif Seleman revamp the country’s leprosy program and create a they can send pictures via smart phone or iPad to farmers. Currently, the government is in dispute Rashidi, Minister of new roadmap. We still need your support; together, professors and this is increasing the opportunities with the farmers the land was originally taken Health, Tanzania we can beat leprosy. for early case-finding and for improving the from and we are looking to find a solution. The The low prevalence rate prognosis for patients. future direction of the hospital depends on how makes case detection Mr. Zhang Yong we resolve the issue. a challenge. Because Deputy Director- Dr. Enrique T. Ona, health workers don’t General, Bureau of Secretary of Health, Dr. Jarbas Barbosa, see many patients Disease Prevention Philippines Vice Minister of Health, with leprosy, they and Control, National I have recently been to Brazil are losing experience Health and Family the island of Culion to We believe the Bangkok of diagnosing cases. There is a need for more Planning Commission, inspect the recovery Declaration [signed education to improve case detection. At the same China efforts from Typhoon following last year’s time, there is also a need to build up the capacity China has made strides in Yolanda six months International Leprosy of communities so that they recognize the prevention and control. ago. I also visited the Summit in July], is symptoms and visit clinics. This dual approach is The rate of infection is leprosy museum and an important tool for how we will achieve control of leprosy: through now low, but we still see new cases — around 900 archives supported by Sasakawa Memorial Health countries not to forget intervention on the part of health services in 2013. The government attaches great importance Foundation. In the Philippines, leprosy is not a leprosy. It is totally unacceptable that in 2014 a and through intervention on the part of the to raising awareness of leprosy, promoting serious problem, but it is still a problem. The person suffers from this disease and the possibility community. Another important area is to support treatment and eliminating discrimination. Every number of new cases has remained unchanged of disability. those with disabilities — and those who make World Leprosy Day, the health minister participates for the past three to four years. Prominent Last week, Brazil finalized the data for 2013. the crutches and other tools that people with in events. However, there is still a long way to go dermatologists tell me that some cases are not All the indicators showed improvement, except disabilities need in their daily lives. to root out discrimination. n

2 3 HUMAN STORY FTEL Jun 14 • No. 68 FTEL Jun 14 • No. 68 AMBASSADOR’S JOURNAL Praise the Lord A Visit to Europe A Romanian pastor has a special bond with his congregation. The Goodwill Ambassador travels to Geneva for the 67th World Health Assembly and visits a Romanian leprosy hospital by the Danube Delta.

at Tichilesti or when his treatment would end. He began drinking, smoking and playing around. “I had several girlfriends,” he admits. At 27, Romica came to the realization he was heading down the wrong path. It happened at 9.30 SWITZERLAND (May 19-23) anti-leprosy efforts. on May 9, 1971. He had come back from the city of Some three-and-a-half years have elapsed Constanta, where he had been treated in hospital for since the adoption of the historic UN resolution a stomach complaint, and began to read the Bible. “I on elimination of discrimination against had been forced to read the Bible before,” he said, “but people affected by leprosy and their families. for the first time the Word entered my life. I knew I Since then I have been organizing a series of had to change my ways.” regional symposia on leprosy and human rights to explore ways of implementing the Principles and Guidelines noted in the resolution. Romica believes God gave Following symposia in the Americas, Asia and Africa, the next gathering is scheduled for him leprosy and that through the Middle East and will take place in Morocco leprosy he found God. this autumn. Meeting with Morocco’s director of epidemiology and disease control, Professor Abderrahmane, I was gratified to hear him say Romica Nedelcu is ministering to his small flock A PASTOR IS BORN that the symposium comes at a good time for at the Baptist church at Tichilesti, Romania’s only He began assisting the elderly minister at the Baptist Morocco. “Human rights have a big place in leprosy sanatorium, as he does every Sunday. church. Eventually, he was taking the service our constitution,” he said, referring to the new Casually dressed – as casually as most of his himself. “God put in me the ability to preach the constitution that came into effect in 2011. He congregation – he sits at a desk decorated with a Gospel,” Romica says. also told me that the Ministry of Health had flower plucked from in front of the 75-year-old He also settled down. He met his future wife just signed a Memorandum of Understanding church that morning. through an introduction and after a three-year with the National Council for Human Rights If Romica looks very much at home among the courtship they married and set up home in the in order to collaborate on addressing stigma residents of the sanatorium, it is because he used to nearby town of Braila, when he was 34. They have in relation to HIV, leprosy, mental illness and be one himself. These are old friends and neighbors two sons and a daughter. other diseases. “I think this is a good context who have a shared experience of leprosy. “We are Religion was strictly controlled during the With Dr. Emma Guzman as she holds the Sasakawa for Morocco to host the event,” he said. like family,” he says. Communist era, but the church at Tichilesti Health Prize Born in 1944, Romica entered Tichilesti in 1956 at continued to function. “I can’t speak for the the age of 12. His mother, who preceded him there Communists, but I expect they felt that a church I always value my visits to Geneva during the I urged health ministers by four years, burst into tears at finding him marked operating in such a secluded location wouldn’t have World Health Assembly. One of my purposes by the same disease. Romica, for his part, was glad to much influence.” this year was to sustain the momentum to submit proposals for be reunited with her. Even so, the secret police occasionally came generated by the Bangkok Declaration. This funding consideration. Coming to Tichilesti signaled the end of his calling—once because letters containing Bible was the declaration endorsed by 17 leprosy- formal education. He passed the time playing chess passages that Romica had sent anonymously to endemic countries at last July’s International and backgammon, going fishing and watching TV. senior Communist Party officials were traced back Leprosy Summit in Thailand, when they Another of my initiatives marks its 10th Occasionally, with the doctors’ permission, he was to him. agreed to renew their commitment to anniversary next January when Global Appeal allowed out to visit his father. Romica believes God gave him leprosy, and that achieving a leprosy-free world at the earliest. 2015 to end stigma and discrimination against As he grew into manhood, he lived from day it was through leprosy that he found God. “If I had The summit was called to inject fresh energy people affected by leprosy is launched in Japan. to day, not knowing how long he would remain not got leprosy, I probably would have stayed in the into leprosy control activities in the face of I am hopeful that the International Council city without God in my life.” stagnating annual new case numbers. of Nurses and its member associations will Concerning the Bible’s portrayal of leprosy as a At the summit, I announced that the endorse next year’s appeal. As the ICN is disease of the unclean, he says he is careful not to Nippon Foundation pledged a maximum US$20 headquartered in Geneva, I had the chance to use leprosy as a symbol of sin, “because that doesn’t million for projects that would improve efforts meet its president, Dr. Judith Shamian, and have relevance to the people here.” He goes on: “Jesus to tackle leprosy for a period of five years from chief executive director, David C. Benton, for a didn’t discriminate against people with leprosy. He 2014. As I made the rounds in Geneva, I urged productive discussion. was there for everyone. I am the same.” health ministers of the relevant countries to Nurses represent the largest body of medical He says he is not ashamed of leprosy nor tried to submit proposals for consideration if they had professionals in the world; they are also conceal his history of the disease. It has given him not already done so, while also asking the very close to the community. I am convinced an affinity to feel the pain of others, something he WHO’s regional directors to encourage the that their backing for the Appeal would believes that everyone in Tichlesti has. countries in their regions to take advantage of represent a huge step forward for our efforts “I am fulfilling my purpose in life,” he says. “It’s this opportunity to strengthen and refine their to break down the remaining barriers of >> Romica takes the service on a recent Sunday in May. a miracle.” n

4 5 FTEL Jun 14 • No. 68 FTEL Jun 14 • No. 68

Calling on Hima, Tichilesti’s oldest resident discrimination. Tichilesti in the delta region, where the River The pace of life is bright against the backdrop of forested hills Tichilesti’s oldest resident is Hima. She An important item on my Geneva agenda Danube empties into the Black Sea south of the relaxed at Tichilesti. and a clear blue sky. lives in a cottage up a hill, and negotiates a each year is to attend the award ceremony for border with Ukraine. Here and there I stopped to chat with flight of steps each day to reach the main the Sasakawa Health Prize. Given each year for A sign on the road from Tulcea, a city some residents, who I found sitting outside on part of the hospital. She arrived in Tichilesti innovative work in public health, the prize this 40 kilometers away, indicates the turn-off benches passing the time of day. Maria was a month shy of her 18th birthday. On June 6, year went to the Leprosy Control Foundation, for “Tichilesti Hospital.” A five-minute drive dressed in her finest and had a red flower she turned 86. Of the 160 people receiving Inc./ Hubert Bogaert Institute of Dermatology down a narrow road that cuts through rolling behind her ear. In her 70s, she was diagnosed treatment when she first came, she is the only and Skin Surgery in the Dominican Republic. countryside brings one to the entrance. Only with leprosy at 15 and has lived at Tichilesti one who is still here. Established in 1963, the foundation has then does the facility properly announce itself: ever since. Long a widow, she joked that When she first arrived, she was in such played a major role in tacking leprosy in the “Tichilesti Hospital – Leprosarium.” she was looking for a rich husband. “I can’t pain that she couldn’t leave her bed. Now she republic and treated more than 13,000 patients. Strictly speaking, Tichilesti no longer wait any longer. You’ll do!” she said. Her son is a spry octogenarian. “It’s because I thank Collecting the award was Dr. Emma Guzman, functions as a leprosarium. No new cases of and daughter-in-law live in the next village. God every day that I am able to get up every who said the prize will be used to benefit leprosy have been recorded in Romania in “My daughter-in-law is wonderful. She is as morning and have been able to live healthily those most in need. To Dr. Guzman and all her recent years and residents are free to come and beautiful as this flower,” she told me. to this great age.” colleagues I offer my heartiest congratulations. go. In 2005, with the assistance of European Tichilesti has two churches, Orthodox and I wondered what life was like under the I also met with Dr. Margaret Chan, the Union funding, part of the hospital was turned Baptist. The pastor of the Baptist church is a Communist regime of Nicolae Ceausescu, WHO’s director general. In extending my term into an old people’s home to help integrate former patient. Romica, who had delivered a which ended with his overthrow in 1989. as Goodwill Ambassador for another two Tichilesti into the community. More recently, sermon the previous day, had stayed overnight According to Dr. Vasiliu, while leprosy was not years, she expressed the hope we would be able it has also been accommodating patients with especially so that he could meet me. I told him talked about during the Communist era and to visit Brazil together one day. I would very psychiatric problems. that he was the first pastor I had met who was the hospital’s existence was not acknowledged, much welcome the opportunity. Tracing its origins back to a monastery that also a person affected by leprosy. the residents were provided for by the state and cared for people with the disease, the current Close by the Baptist church I met Domnica. received the necessary food and drugs. “They ROMANIA (May 26) leprosy hospital dates from 1928. Her mother Iona was a resident from 1941 until were never abandoned,” he said. Romania’s Danube Delta in the southeast of the When once there were as many as 200 her recent death and Domnica herself was “The big change today is in the mentality. country is home to 300 species of birds and 45 patients under treatment for leprosy, there are born here. She lived in Tichilesti until she was Before, the gates were closed and there species of freshwater fish and is on UNESCO’s just 16 persons affected by leprosy resident at 13 before starting school and later getting a were very few visitors — and absolutely no World Heritage List. Less well known, but also Tichilesti today, ranging in age from their 50s job. Now she is retired and lives on a pension. foreigners. Now, the gates are open.” part of our heritage, is the leprosy hospital at to their 80s. She told me that she used to come and stay I understand that Dr. Vasiliu has worked Greeting me at the entrance was Dr. Rasvan with her mother every month, and still spends hard to remove any misunderstandings about Vasiliu. He has worked at Tichilesti since 1991. 10 to 15 days a month at Tichilesti. “My heart leprosy among the public, giving interviews Dr. Vasiliu studied under a renowned Romanian is here,” she said. to the media over the years and dispelling dermatologist, Dr. Pavel Vulcan, who shaped I visited another lady, also called Maria. myths about the disease. From talking with Dr. Vasiliu’s approach. “His attitude really She has five children, 11 grandchildren and the residents, it was clear to me how much he impressed me and was a kind of guideline for two great grandchildren. She was listening and his staff were appreciated for the care they me in my life. He wasn’t just a professor or to religious music on her radio. “I have been provide and what they have done to normalize doctor but a human being. For him, the people sustained by the love of God,” she tells me. life at Tichilesti. at Tichilesti were normal human beings, just as “I have been a widow for 11 years, but I am Before I left, Dr. Vasiliu thanked me for he was. This was the most important thing I fortunate.” She said that she appreciated my visiting and said that it had been like a festival learned from him,” he said. visit because it was an opportunity to meet for residents and staff alike. “I hope you will It was Dr. Vasiliu who showed me round Dr. Rasvan Vasiliu Domnica: “My heart is someone new and chat about different things. become our ambassador and tell the world The sign at the entrance to the hospital. Tichilesti. Its white-washed buildings were here.” “Usually, we just talk to the same old people.” about us.” I am happy to do so. n

6 7 NEWS FTEL Jun 14 • No. 68 Interrupting Leprosy Transmission Novartis, NLR announce collaboration on preventative treatment.

On June 10, Novartis Foundation for it is recognized that close and frequent contact Sustainable Development and Netherlands with an individual who is infectious increases Leprosy Relief (NLR) announced they the risk of transmission. would be collaborating with national In recent years, the case detection rate leprosy programs and other partners from of leprosy has leveled off at around 220,000 the International Federation of Anti- to 250,000 new cases annually. As a way to Leprosy Associations (ILEP) to interrupt the break this impasse, Novartis is looking to transmission of leprosy. shift the focus of anti-leprosy activities to The newly announced collaboration, interrupting the transmission of the disease known as the Leprosy post-exposure through preventative treatment. prophylaxis project (LPEP), aims at introducing Operating at several sites across Asia, preventative treatment for contacts of newly- Africa and Latin America, LPEP aims to diagnosed patients to decrease their risk of provide evidence of the impact of post- developing leprosy. exposure prophylaxis on case detection rates While unanswered questions remain about and its feasibility as a strategy to prevent how leprosy is passed from person to person, leprosy transmission.

LEPROSY VACCINE

A vaccine for leprosy is being developed by (ALM). For the clinical testing phase, they American researchers and is set for toxicology have partnered with the Philippine-based tests toward the end of 2014 and for Phase I Cebu Leprosy and Tuberculosis Research FOR THE ELIMINATION clinical trials in human volunteers by 2015, Foundation. For the past 12 years, the ALM OF LEPROSY SciDev.Net reports. The project is led by has invested US$4 million in the endeavor Publisher the Infectious Disease Research Institute to develop the leprosy vaccine and a new Yohei Sasakawa (IDRI) and the American Leprosy Missions diagnostic test for the disease. n Executive Editor Tatsuya Tanami FROM THE EDITORS Editor Jonathan Lloyd-Owen BROTHERS IN ARMS Associate Editor James Huffman Last month saw the passing of two men who had of them living with disabilities. Layout been leading lights in the movement to restore the Yuji Kodama, who died of lung cancer on May Eiko Nishida dignity and human rights of people affected by 11, was also a key figure in championing the rights Photographer leprosy in Japan. of people affected by leprosy. Born in 1932, he Natsuko Tominaga Michihiro Ko, the president of Zenryokyo, the displayed symptoms at 7 and was sent to a Editorial Office All-Japan Hansen’s Disease Sanatoria Residents’ sanatorium in Tokyo. He was later transferred to 5th Floor, Nippon Association, died at the age of 80 on May 9. Born Kuryu Rakusenen in Gunma Prefecture. An activist Foundation Building, in Fukuoka Prefecture, he developed symptoms of and poet, he led the fight for compensation from 1-2-2 Akasaka, Minato-ku, leprosy at 17 and was sent to Oshima Seishoen, a the central government for its decades-long policy Tokyo 107-8404 leprosarium on an island in Japan’s Inland Sea. As of isolating those with the disease. Tel: +81-3-6229-5601 general secretary of Zenryokyo from 1995 (and Following a legal challenge mounted by Mr. Fax: +81-3-6229-5388 president from 2010), he campaigned tirelessly to Kodama and a group of plaintiffs, the Kumamoto [email protected] improve conditions for Japan’s sanatorium residents District Court ruled in 2001 that the policy had been and was active in the movement that saw the unconstitutional and those who suffered under it With support from: overturning of Japan’s Leprosy Prevention Law in should receive an apology and compensation. Just Sasakawa Memorial 1996. At the time of his death, Mr. Ko was before he died, he was able to attend the opening in Health Foundation, working on an appeal against the government’s April of a museum he had campaigned for: a The Nippon Foundation plans to cut back the number of personnel at reconstruction of a detention facility showing the sanatoriums, arguing that this posed a danger to appalling conditions in which sanatorium residents www.nippon-foundation. the lives of the remaining elderly residents, many were held for disciplinary reasons. or.jp/en/ www.smhf.or.jp/e/

©2014 The Nippon Foundation. All rights reserved by the foundation. This document may, however, be freely reviewed, abstracted, reproduced or translated, in part or in whole, but not for sale or for use in conjunction with commercial purposes. The responsibility for facts and opinions in this publication rests exclusively with the editors and contributors, and their interpretations do not necessarily reflect the views or policy of the Goodwill Ambassador’s Office.

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