WHO ’S NEWSLETTER June 2009 • Number 38 For the • Leprosy is curable Eliminationof • Free treatment is available Leprosy • Social discrimination has no place

Prakash Adhikari, editor of Nepal’s Rajdhani National Daily, interviews a member of a leprosy self-care group in Mahottari district in April.

MESSAGE CONTENTS

Encouraging Words Message 1 Report In May I went to Geneva for the 62nd World She was elected Judge President of the International Meeting endorses Health Assembly. While there, I had meetings with Criminal Tribunal for Rwanda and has served as a Enhanced Global two top leaders. One was Dr. Margaret Chan, the judge on the International Criminal Court in The Strategy 2 director-general of the World Health Organization. Hague. Throughout her career, she has stood up Book Review The other was Dr. Navanethem Pillay, UN High for the rights of the weak and oppressed. An Uncertain Cure: Living Commissioner for Human Rights, who assumed She expressed surprise that leprosy had not with Leprosy in Brazil 4 the post last September. been taken up as a human rights concern at the Since the outbreak of the new strain of UN until relatively recently, and complimented Geneva Memo influenza, Dr. Chan has had a punishing schedule. the Japanese government for bringing the matter Conversations on sidelines of 62nd World Therefore, I much appreciated her presence at a before the Human Rights Council. Her office, she Health Assembly 5 small meeting on leprosy elimination. In response assured me, would be following the subject closely. to my remark that the last mile of a 100-mile Between them, Dr. Chan and Dr. Pillay Ambassador’s Journal journey is the hardest, Dr. Chan recalled the grasp the medical and social issues surrounding Liaising with the media lessons of small-pox eradication, when “energy, leprosy and have demonstrated their unwavering in Nepal 6 resources and political commitment” were needed support for eliminating the disease and rooting News to finish the journey. As for leprosy elimination, out stigma and discrimination. Hence I want to ASEC-TNF Project; the director-general said that the “energetic, share their words of encouragement with national Professor Turkan Saylan; persistent and consistent global effort” of the governments, NGOs, health workers, and of course Delhi Social Welfare goodwill ambassador would surely ensure the people affected by leprosy and their families. Dept. 8 completion of this journey, too. Together let us walk the “final mile” and move From the Editors 8 Dr. Pillay is a South African Tamil. Born in a nearer to our ultimate goal of a leprosy-free world. poor neighborhood, she grew up to be a lawyer, courageously defending opponents of apartheid. — Yohei Sasakawa, WHO Goodwill Ambassador

 REPORTHUMAN RFROMIGHTS FTEL Jun 09 • No. 38 Enhanced Global Strategy Takes Shape Program managers, partners meet in India and agree on new target for 2011-2015.

A new global target for leprosy has been agreed Household Contacts following a three-day Global Leprosy Program Another enhancement agreed to at the meeting Managers Meeting in New Delhi to discuss was to examine all household contacts of newly leprosy control strategy for 2011-2015. detected cases, as household contacts of leprosy The new target is a reduction in the rate of patients are at significantly greater risk of new cases with Grade 2 disabilities per 100,000 developing leprosy than contacts that are not living population by at least 35% by the end of 2015, in the same household. compared to the baseline at the beginning of Although this was recommended in June 1997 2011. Such a reduction would indicate that by the 7th WHO Expert Committee, there has only leprosy is being detected early before nerve been limited implementation of this strategy due to damage leading to impairments and disabilities. concerns over exacerbating stigma and difficulties Making new cases with Grade 2 disabilities in implementation. However, the re-introduction the key indicator to monitor progress was one of of this examination policy is regarded as a positive a number of enhancements to the current leprosy step that could have the potential to detect cases strategy for 2006-2010 that emerged from the earlier and prevent disabilities, even though much April 22-24 discussions at the WHO’s South East remains to be discovered about infection and Asia Regional Office. transmission of leprosy. Delegates included over 40 National Leprosy The Enhanced Global Strategy will be further Program Managers from around the world as well boosted by: as members of the WHO Technical Advisory Group (TAG) for Leprosy. Also represented were • Reinforcement of the humanitarian issues and international NGOs and organizations of persons rights of people affected by leprosy and absolute affected by leprosy, the Novartis Foundation assurance of equity and social justice for Sustainable Development, which donates • Rigorous advocacy of the use of more dignifying the drugs used to treat leprosy, and The Nippon terminology whenever talking about or referring Foundation, which sponsored the meeting. to people affected by leprosy Leprosy FACT Under consideration was the Enhanced Global • Stress on the particular needs for improved ● At the beginning of Strategy for Further Reducing the Disease Burden Due leprosy control in underserved areas including 2008, a total of to Leprosy (2011-2015). This is formulated as a urban slums and migrant populations 218,605 leprosy cases natural extension of WHO’s earlier strategies • Highlighting of opportunities to explore public- were registered for and intended, along with the accompanying private partnerships treatment in the world. Operational Guidelines, to serve as a basis for each • Assurance of quality clinical services The number of new national leprosy program to develop its own • Training of peripheral health workers so they can cases reported during country-specific strategy. refer people affected by leprosy to the appropriate 2007 was 258,133.

The three-day meeting at WHO SEARO in New Delhi achieved consensus on leprosy control strategy for 2011-2015.

 FTEL Jun 09 • No. 38 Enhanced Global Strategy Takes Shape

Left: National program managers Dr. Jean Norbert L. Mputu (DR Congo) and Dr. Alcino Ndeve (Mozambique); Right: Professor Diana Lockwood of the London School of Hygiene & Tropical Medicine is flanked by LEPRA’s Terry Vasey and Dr. P V Ranganadha Rao.

services according to their personal needs that is equitably distributed, affordable and easily • More holistic assessments of the needs of each accessible. These will continue to form the basis of person affected by leprosy and provision of the strategy for 2011-2015. appropriate support under community based Participants had had several opportunities rehabilitation. in the months leading up to the meeting to • Promoting further research in the area of submit their comments and feedback on earlier chemoprophylaxis for future use as a control drafts of the Enhanced Global Strategy and the measure and in developing better treatment accompanying Operational Guidelines. As a result of regimens with shorter duration of treatment. this consultative process, the meeting was able to concentrate on the enhancements that had been On the question of drug security, the Novartis proposed. Foundation reiterated its commitment to providing In a statement, the WHO said: “A great deal the drugs used in multidrug therapy (MDT) free of serious thought and deliberation, considerable of charge. time and effort has been dedicated to finalizing this global leprosy strategy. The interest and ideas GUIDING PRINCIPLES of those who have contributed to this process is Underpinning the Enhanced Global Strategy will be evidence of the clear and continuing commitment a renewed commitment to the main principles of to provide quality care for all individuals affected leprosy control outlined in the current strategy, by leprosy wherever they are in the world, and to namely, the timely detection of new cases and build on the considerable progress already made in their treatment with MDT, and quality patient care reducing the burden of this disease.” ■

Targeting Grade 2 DISABILITIES INDICATOR IS ‘ROBUST MARKER’

The rate of new cases with Grade 2 disabilities the indicator of new cases detected with Grade per 100,000 population was proposed as the 2 disabilities can be used to estimate under- new target because it is less influenced by detection; measure the impact on the need for operational factors than other indicators, it physical and social rehabilitation; advocate the focuses attention on impairments that are critical use of prevention of disabilities activities; and to persons affected by leprosy and it stimulates promote collaboration with other sectors. improvements in case detection. In addition, the use of this indicator will help It is a “robust marker” of the level of occurrence to put emphasis on the issues that are important of leprosy in the community and operationally it to persons affected by leprosy, governments and is easier to recognize compared to the early signs non-governmental organizations, donors and of the disease. other partners. Reported data show a downward trend in new The new target as initially proposed called cases with Grade 2 disabilities. A reduction in new for reducing the rate of cases with Grade 2 cases with Grade 2 disabilities is expected to reflect disabilities by 50%, but this was scaled back a reduction in the total number of new cases. to 35% based on the response from national When reviewed together with other indicators, program managers at the April meeting.

 BOOK REVIEW FTEL Jun 09 • No. 38 An Uncertain Cure Medical anthropologist examines the patient experience in Brazil.

In the era of multidrug therapy (MDT), the how the patient perceives it. Leprosy is cured with treatment program that has transformed MDT within 6 to 12 months, yet someone who leprosy from a chronic disease requiring has been technically cured of the disease may lifelong surveillance into one that can be treated continue to suffer from leprosy reaction, or may and cured on an outpatient basis, the title of be permanently impaired because they were late Cassandra White’s book catches the eye. Dr. to start treatment. As Dr. White writes of one of White, an assistant professor in the department her interviewees, who had suffered severe nerve of anthropology at Georgia State University, damage to his feet as a result of leprosy, “Celso has made a study of how leprosy affects the was skeptical that leprosy was curable; to be daily lives of people in Brazil and the ways that cured, for him, would mean a return to the way economic and social realities constrain their life was before he began noticing symptoms.” attempts to get well. Having observed healthcare workers argue She carried out the bulk of her research in with patients, telling them that they were 1998 and 1999. During those years, and on “cured” and no longer had leprosy, even though subsequent trips, she conducted they were still experiencing in-depth interviews with 41 symptoms that were related to persons diagnosed with leprosy the disease, Dr. White suggests and two more who were being healthcare workers should find tested, and took field notes a way to acknowledge patients’ on the clinic visits of 144 suffering while helping them separate individuals. She also to understand the process of interviewed 14 people who treatment for leprosy reaction. work with leprosy. Most of her This is a lesson not to be lost research was done in Rio de on anyone treating the disease Janeiro, at a referral center that and its aftermath. primarily served patients living A chapter is devoted to in the city’s industrial North the complexities of stigma — Zone and in the working-class on the job, among friends and suburban municipalities to neighbors, within the family Rio’s north. — and the book also addresses Dr. White’s interviewees the campaign to rename lepra were from the favelas, or (leprosy) as hanseniase (Hansen’s shantytowns, from low-income disease) as a way to reduce government housing, or lower the stigma associated with middle class neighborhoods. An Uncertain Cure: Living with the disease. Interestingly, While discarding the Leprosy in Brazil among the people Dr. White stereotypes of all favelas as By Cassandra White, Rutgers University interviewed, there was a dangerous, crime-ridden and Press (February 2009) wide range of understanding filthy, she acknowledges and interpretation of the two problems favelados face, including flooding, poor terms. While many knew lepra as a synonym for sanitation, prevalence of disease, violence and hanseniase, a few believed it was what they would economic hardship. get if they did not comply with the treatment Conditions such as these provide a clue as program for hanseniase, while still others did not to why leprosy persists in Brazil, Dr. White associate hanseniase with lepra at all. contends: the disease is a byproduct of structural Some of the individuals featured in An factors, including an unequal distribution of Uncertain Cure sail through their treatment with wealth, power and healthcare services, which relative ease and only minimum disruption to have negatively affected the health of the poor in their lives; others experience a range of physical, Brazil. Added to that, for the individuals she met social and economic problems as a result of their in Rio whose health, social life and work situation disease. had changed because of the disease, “leprosy All are given a voice in this sensitive and well- tended to exacerbate the problems of being poor documented study of the leprosy experience in this Brazilian megacity.” among low-income and working-class Brazilians The ‘uncertain cure’ of the title arises which, while firmly rooted in its cultural context, from the difference between how the medical succeeds in conveying what it is like for people to establishment defines the cure for leprosy and cope with leprosy. ■

 FTEL Jun 09 • No. 38 GENEVA MEMO ‘Passion, Persistence, Patience’ No let-up in efforts to control leprosy and reduce the disease burden.

Goodwill Ambassador Yohei Sasakawa traveled persistence and patience.” With reference to Brazil, to Geneva in May for the 62nd World Health which still has to deal with many new cases of Assembly. On May 21 and 22, on the sidelines leprosy each year, she said the country was using of the assembly, he met with representatives of “a different language” in its approach to tackling governments and international organizations to the disease. However, she stressed that this did not discuss leprosy issues. signal a lack of commitment to reducing the leprosy In a meeting with Francisco T. Duque, burden, and added that full surveillance of Brazil’s Secretary of the Department of Health of leprosy control activities was being planned. the Philippines, he thanked the Philippine In a meeting with Dr.Kyaw Myint of government for supporting last June’s Human Myanmar’s Ministry of Health, Dr. Myint told Rights Council Resolution 8/13 calling for an the Goodwill Ambassador that the leprosy end to stigma and discrimination against persons prevalence rate in Myanmar continues to fall. affected by leprosy and their families. He also Early detection and treatment are contributing to had praise for Dr. Arturo Cunanan, head of the a decrease in cases with disability, which in turn technical division of the Culion Leprosy and results in a lessening of stigma. As part of this Rehabilitation Program, for his work not only in effort, Myanmar is conducting leprosy awareness the Philippines, but also recently in Nepal, where campaigns on television. he conducted technical training. Professor P. I. Garrido, Mozambique’s Minister In a meeting with Dr. Suriya Wongkongkathep, of Health, said in a meeting that Mozambique had Senior Health Supervisor at the Office of Health achieved elimination at the national level at the end Inspector General of Thailand’s Ministry of of 2007, but that the president waited to make a Public Health, he similarly thanked the Thai formal announcement until the following year. By government for its support of HRC Resolution then, Mozambique had achieved elimination at the 8/13. For his part, Dr. Suriya Wongkongkathep provincial level too. The country is now focusing said that Thailand had conducted some intensive on specific districts where the prevalence rate case-finding activities three years ago and was remains high, he said. now focused on assuring quality leprosy services. In a brief meeting with ’s health minister, Kapemba Simbao, the Goodwill Ambassador said that he looked forward to visiting Zambia over the summer to learn more about that country’s leprosy control program.

WORKING LUNCH During a working lunch attended by WHO Director-General Margaret Chan, Dr. Plianbangchang Samlee, WHO Regional Director for South East Asia, and Dr. Mirta Roses, WHO Dr. Pillay (left) with Yohei Sasakawa Regional Director for the Americas, and others, Dr. Chan honored the Goodwill Ambassador On May 22, the Goodwill Ambassador by saying that she appreciated his “energetic, met with Dr. Navanethem Pillay, UN High persistent and consistent global effort” for leprosy. Commissioner for Human Rights, when he Dr. Roses underlined the necessity for “passion, explained the background to his efforts to bring leprosy to the attention of UN human rights experts. Dr. Pillay, who was appointed last September, expressed surprise that leprosy had not been taken up as a human rights issue in the past. She commended the Goodwill Ambassador’s continuous efforts to draw attention to the issue and acknowledged the initiative taken by the Japanese government in overseeing the passage of resolution 8/13. She said she looked forward to the report that the HRC Advisory Committee was preparing on leprosy and human rights, and promised that her office would remain fully Dr. Mirta Roses Dr. Margaret Chan focused on the issue. ■

 AMBASSADOR’S JOURNAL FTEL Jun 09 • No. 38 Enlisting the Help of Nepal’s Media Recent visit spent in the company of reporters promotes coverage of leprosy.

MARCH (April 24-27) Kumar Shah, this local NGO’s mission is to In my role as Goodwill Ambassador, I improve the socio-economic status of people believe that reaching out to the media is affected by leprosy and other persons with especially important. Drawing the attention of disabilities. It is now working to ensure that the press to the issues surrounding leprosy and their voices are reflected in the new constitution having leprosy covered in an appropriate way of Nepal that is being written. leads to the public being better informed. This READ-Nepal recently completed an eight- gives people the knowledge and encouragement bed ward for ulcer care and I was asked to to seek treatment and serves to debunk myths perform a ribbon-cutting ceremony to formally about the disease. open it. Later I addressed the 50 or so attending Thus I was delighted that my latest visit to the workshop . Among those joining me on the Nepal was spent in the company of five local dais were Dr. Garib Das Thakur, director of the print, radio and television journalists, who health ministry’s Leprosy Control Division. would be reporting on my activities during my four-day stay. In addition, I took part in two well-attended interactions with journalists, “As journalists, we must one in the capital Kathmandu, and the other in Janakpur, Dhanusha district. These were discharge our social designed to brief media about the disease and to responsibilities,” Mr. Jha said. enlist their greater involvement in Nepal’s bid to eliminate leprosy as a public health program. Nepal’s health authorities believe that they The tireless Dr. Thakur was one of the main will be able to reach the elimination milestone speakers that evening at the first interaction of less than one case per 10,000 population by with journalists at a Kathmandu hotel, the end of this year. As of mid-March, 3,165 briefing them on the progress Nepal is making patients were registered for treatment and the tackling leprosy, and stressing that the leprosy prevalence rate stood at 1.16. The burden of elimination program is a government priority. the disease is mostly in the Terai belt and some He also accompanied my party to Danusha and hilly districts in Nepal’s Mid-Western and Far- Mahottari districts in the Terai the following Western regions. day, where a second get-together with local On arrival in Kathmandu, I paid a courtesy journalists had been arranged in Janakpur. call on Minister of Health and Population “This is a poor, impoverished area,” Dr. Girimajrani Pokharel, apologizing for visiting Thakur said to the assembled media. “But with him on a holiday. “This is not a holiday for me,” your help we can achieve the elimination goal. he replied. “We don’t take holidays in the midst Tell people that leprosy is not a curse. Let them of this important work.” know that treatment is free.” In the afternoon I attended a workshop Both the Kathmandu and Janakpur events at READ-Nepal. Under the leadership of Raj were arranged in cooperation with the president

With Raj Kumar Shah (2nd from left) and Dr. Thakur Dhamendra Jha, president of the Federation of Nepali (2nd from right) at the READ-Nepal workshop Journalists, speaking in Kathmandu

 FTEL Jun 09 • No. 38

Devpura subhealth post near Janakpur, Danusha district of the Federation of Nepali Journalists, women’s development group. Dharmendra Jha. Addressing his colleagues in In this way, the group members have served Janakpur, he said that the goodwill ambassador as agents of change within their community, had come all the way from to fight and now work along side village committees leprosy, and it would not do for the media to tackling issues such as hygiene and sanitation. remain silent on such an important issue. “As One of the results has been a reduction in journalists, we have to discharge our social stigma through interaction with other members responsibility,” Mr. Jha said. of the community, who have responded Danusha and Mahottari are among two positively to what they are doing. “By helping of four districts served by Lalgadh Leprosy the village, we are Services Center, the NGO run by Nepal Leprosy contributing to Trust. LLSC serves a key role as a leprosy society,” says Muslim treatment and referral center in support of Momen, the head of the government’s leprosy control program. the group. Beyond that it performs many other important I learned later functions, including capacity building of health that when LLSC workers, building community awareness of first approached Mr. leprosy via educational dramas, and organizing Momen to serve as community-based empowerment and leader, he denied that rehabilitation activities.* he had been a leprosy I was able to see for myself an excellent Muslim Momen patient. Such was the example of the good work done by LLSC when stigma attached to the I was taken to visit Loharpatti Primary Health disease that it took several attempts before he Center in Mahottari district. The journey took could be persuaded to get involved. about one hour by car from Janakpur along a Shortly after I left Nepal, the prime minister dusty, unpaved road busy with carts, bicycles, resigned, plunging the country into political pedestrians and the occasional bus. Here I met chaos. A new cabinet was being selected as this with a self-help group of some 30 persons affected newsletter went to press. Assisted by the WHO by leprosy that gets together once a week. and other partners, the health authorities have This is one of 10 groups started between been taking leprosy very seriously. The strategies 2002 and 2004 by LLSC, which gave them and activities of the leprosy elimination program Reference training in how to prevent disability and have been strengthened and upgraded. I hope * Sasakawa Memorial Health encouraged them to conduct self-care camps for that the work of the leprosy control division will Foundation has been others. From these beginnings, the group has continue unchanged under the new government. supporting Nepal Leprosy reached out to other disabled and marginalized In the meantime, I would like to thank the Trust activities, especially people. It has embarked on income-generation journalists who accompanied me for their educational street dramas, projects working with loans provided by LLSC, coverage of my visit and I hope they will keep since 1999. and it has used some of these loans to support a leprosy in their sights. ■

 REPORTNEWS FROM INDIA FTEL Jun 09 • No. 38 ASEC-TNF Project Set to Begin New initiative on leprosy and human dignity to be launched on June 15.

The ASEC-TNF Project on Leprosy and Human The new project will focus on empowerment Dignity will be inaugurated this month at a workshops, the creation of networks of people ceremony in Jakarta, Indonesia. A joint initiative affected by leprosy, capacity-building programs of the Association of Southeast Asian Nations and the formation of partnerships with different Secretariat and The Nippon Foundation, the five- sectors, including the business community, with year project aims to address the social and economic the goal of achieving a society in which people consequences of leprosy in Southeast Asia. affected by leprosy can live with dignity.

PROFESSOR TURKAN SAYLAN

Thousands of people turned out for the funeral of Professor Turkan Saylan in Istanbul on May 19. Professor Saylan, who died of cancer the previous day at the age of 74, gained an international reputation for her leprosy work. She was ahead of her time in appreciating that it was necessary to address patients’ social and economic needs as well as treating them with drugs. In recognition of her efforts, she was presented with the International Gandhi Award in 1986. In Turkey, she was best known as the founder, in 1989, of the Association in Support of Contemporary Living, an organization that built schools and financed the education of poor students, especially girls, from some of Turkey’s most impoverished regions.

HISTORIC DECISION IN DELHI FOR THE ELIMINATION OF LEPROSY The Delhi state government has invited the Mr. G. Venu Gopal of the National Forum of people Publisher president and secretary of the Delhi Leprosy affected by leprosy, said, “It provides us with a Yohei Sasakawa Patients Union to join the Advisory Board of the chance to throw away the crutches — in the shape Executive Editor Delhi Social Welfare Department. This is the first of other people — that we have been using for our Tatsuya Tanami time that people affected by leprosy have been requirements and to tackle matters by ourselves. Editor invited to serve on the board. We hope the decision of the Delhi government will Jonathan Lloyd-Owen Commenting on the groundbreaking decision, serve as a model for all other state governments.” ■ Associate Editors Sumiko Okamoto, from the editors James Huffman UNCHANGING GOAL Layout Eiko Nishida When program managers and partners endorsed success breeds complacency. As the disease Photographer the Enhanced Global Strategy for leprosy 2011-2015 burden declines, much work must be done Natsuko Tominaga in New Delhi recently, they fixed in place an to reaffirm national and local commitment Editorial Office important next step on the journey to eradicate to tackling leprosy in the face of many other 5th Floor, Nippon this age-old disease. The basic principles remain competing demands. Now more than ever, Foundation Building, early detection, proper diagnosis, and prompt strong partnerships and the prioritizing of 1-2-2 Akasaka, Minato-ku, treatment with MDT, combined with quality resources will be important to ensure that the Tokyo 107-8404 patient care available to all who need it on goals of the enhanced strategy are achieved. Tel: +81-3-6229-5601 an equitable basis. But for these principles to Beyond these goals lies the ultimate vision Fax: +81-3-6229-5602 be uniformly applied, there must be effective of a world without leprosy. Based on current [email protected] and efficient leprosy control activities in all knowledge of the disease, the scientific endemic countries. Also essential are awareness consensus is that complete eradication of leprosy With support from: campaigns that educate people about the is not feasible. Yet that seems no reason to Sasakawa Memorial disease and its treatment, and that counter question, as one delegate did in New Delhi, the Health Foundation, erroneous beliefs that give rise to stigma and inclusion of this vision in the enhanced strategy. The Nippon Foundation discrimination. As another delegate gently chided, nowhere is it Past strategies have brought success, yet written that we’ll never find the answers. www.nippon-foundation. or.jp/eng/

©2009 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.