WHO ’S NEWSLETTER August 2004 • Number 9 FOR THE • Leprosy is curable

Elimination • Free treatment is available OF Leprosy • Social discrimination has no place

Meeting a girl affected by leprosy at Gidakom Hospital, Bhutan A MESSAGE FROM THE GOODWILL AMBASSADOR CONTENTS Toward Social Integration

Leprosy has two aspects: medical and social. affected can speak out, and in which the wider Message 1 Thanks to multidrug therapy, we are winning the community is receptive to what they have to say. Report from medical battle, but it will take longer to overcome Their message is that leprosy is just another Demystifying the social stigma. This battle is just as important, disease, that it is completely curable, and that there Leprosy 2 for people will not be free of leprosy until they is nothing wrong with those who have been cured. Meetings are free of its associated discrimination. On the medical side, this message is Health Ministers Give Knowledge of the true nature of the disease increasingly understood. The general health Progress Report 4 needs to reach every corner of society. In this, the services no longer treat leprosy as a special role of the media is important. We also need to sickness. Treatment can be obtained at any health Human Stories mobilize the non-leprosy community. facility. Medical integration is proceeding well. Dan Izzett 5 It goes without saying that the best people to But to facilitate the social rehabilitation of Ambassador’s Journal talk about leprosy are those who have had the those affected by leprosy, to help them regain Journeys to Jordan, disease. Too often, though, they have lacked a their dignity, we also need social integration. The India and Bhutan 6 voice. As we approach elimination, it is more efforts of governments, corporations, unions, News important than ever that they make themselves schools and NGOs must be coordinated to ensure WHO Shifting heard, both to encourage others to seek that their human rights are respected. Leprosy Program treatment, and to break down barriers to social To help in these efforts, we need to empower to India 8 acceptance. those cured of the disease, have them speak out From the Editors 8 For this to happen, they will need to feel and assume positions of responsibility within comfortable talking about their experiences. influential organizations. We must do all we can However, because of the long history of social to create these opportunities. discrimination, it will not be easy. We have to create an environment in which the leprosy- — Yohei Sasakawa, WHO Goodwill Ambassador

1 REPORT FROM INDIA FTEL Aug 04 • No. 9 Demystifying Leprosy A workshop explores ways to familiarize people with the true nature of the disease.

Transforming a government program to eliminate was general agreement that the broadest possible leprosy into a people’s movement was the goal of definition of the term be used, to allow messages the National Consultation Workshop on Advocacy to be targeted and delivered in the most Strategies for the Elimination of Leprosy held in appropriate format. New Delhi June 4-5. Shamsher S. Bahadur (The Leprosy Mission Organized by Dr. S.D. Gokhale (International Media Center) said that TLM campaigns were Leprosy Union), the two-day event brought coordinated across a whole range of media, and use together an eclectic mix of participants tasked with a “building-block system” in accordance with formulating a strategy for demystifying leprosy and specific local conditions. The resulting media mix bringing about the social rehabilitation of those features a combination of mass media (radio and affected by the disease. television), interpersonal communications (use of “Killing the bacillus is not enough. We need to influential community figures), music, theatre, change mindsets,” said Dr. Gokhale. posters, billboards, leaflets, T-shirts, badges and One starting point is people-centered advocacy, keyrings. In particular, interpersonal defined by Dr. Amitabh Behar (National Centre of communications plays an important role in areas Advocacy Studies) as “a set of organized actions where hardly any mass media are available. aimed at influencing public policies, societal Among the mass media, radio was seen as attitudes and socio economic processes that enable having the broadest reach, although, as Julian Parr and empower the marginalized to speak for (BBC World Service Trust) pointed out, people only themselves.” listen to what is local, in their language and has He outlined several steps for effective advocacy, relevance to their lives. Given India’s profusion of including identifying and framing the issues, mobilizing interested parties, forming and sustaining networks and alliances, and getting media involved. For Razia Ismail Abbasi (India Alliance for Child Rights), the issue was why such a workshop was necessary in 2004, 20 years after she had become involved in a similar campaign to change attitudes toward leprosy, and despite the proven effectiveness of multidrug therapy in the interim. The reality, she said, is that leprosy is “not just a bacillus that a combination of drugs can defeat; it is as much a social condition with the power to irrevocably afflict a life.” Where the role of media was concerned, there Seeking ways to change mindsets

‘SOCIALLY RESPONSIBLE’ MEDIA page booklet gives an overview of the people do not have a clear leprosy situation at the global and understanding of the disease, says In December 2003, 80,000 copies of a national levels, contains Chatterjee’s colleague, Harnam booklet entitled Together We Can messages from the Shankar. “The upper classes Eliminate Leprosy were distributed with chief ministers of have a perception that leprosy The Times of India in Bihar and Bihar and Jharkhand, only affects the ignorant, who Jharkhand. In an area with a high rate and deals with both need to be quarantined. We of illiteracy, the idea was to target the the medical and wanted to generate educated decision-makers who form social aspects of the awareness among them, the paper’s readership and who have disease. It was try and sensitize them, and an influence on society and a positive produced in so influence people down role to play. conjunction with the the line.” Explains Gautam Chatterjee of WHO, with technical Although TOI was Times Response, who worked closely input provided by the publishing something on on the project, “First you have to reach National Leprosy leprosy for the first time, it the reachable, and then, through them, Eradication Program has previously produced booklets those who are not easily reached.” (NLEP). on hepatitis B, polio and HIV/AIDS, Aimed at the lay person, the 16- Even among the educated, many and also compiled a directory of

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tongues, translating a leprosy campaign into work with deeply entrenched belief systems rather different languages is thus time consuming and than trying to overturn them. “If somebody tells costly. As for the impact of a campaign, the BBC’s you he was fated to get leprosy, it’s no good telling research showed that its sustainability directly him it has nothing to do with fate. Why should he correlates to the amount of time it runs. “The believe you? Instead, agree that it probably was lesson is that you have to keep hammering away at fate, but that it was also fate that he came to you the message,” he said. However, this does not to be cured with MDT.” preclude innovative approaches. “Social messaging Another point that can be entertaining,” he added. the seminar underscored was that in order to reach the The purpose of the media broader community, it was necessary to should be to motivate rather employ the right people than to educate. for the job. Medical people can’t run social programs. These should Where the print media are concerned, the be left to people who workshop heard that a new role for newspapers understand the was evolving in the area of civic journalism, and Mahendra Shinde community at large. that this could provide opportunities for coverage The session also of more social issues, such as leprosy. But emphasized the important role that cured persons participants were reminded that newspapers were can play in speaking out about the disease and commercially driven, required articles that bore the assuming a leadership role in NGOs and other stamp of authenticity and that were suitably organizations. Mahendra Shinde (Bombay Leprosy packaged for the readership. Project) suggested this was easier said than done, On the subject of presentation, Dr. Mohan recalling how he had applied for a government Agashe (actor, theatre director, psychiatrist) said the position advertised as giving priority to a person purpose of the media should be to motivate rather affected by leprosy, only to find this was not so. than educate, “to stir curiosity and bring people to In closing the conference, Dr. Gokhale pledged the level where they want to be educated.” Make various follow-up activities, including creating a leprosy the subtext not the text, he said. “Tell a resource center on leprosy, identifying story while giving an injection.” spokespersons in hyper-endemic districts, Group sessions and open debate were also a reviewing discriminatory laws, and championing source of insights and ideas. the role of cured persons at the center of any In seeking to dispel myths and change initiative. mindsets, Dr. H. Srinivasan (Indian Journal on “We must recognize this hurts the pride of this Leprosy) suggested it was sometimes better to country,” he said. doctors in Bihar and Jharkhand. One man who was closely involved in can’t read about it for themselves. “As a media house, we have a the booklet’s production, and has made Therefore, the literate have a social responsibility,” says Chatterjee. full use of it since, is Dr. Rajan Shukla, responsibility to spread awareness.” “Basically, our job is disseminating NLEP’s state coordinator for Bihar. In addition to the copies distributed information. But at the same time, if “The aim of the booklet was not to with the newspaper in Bihar and we are able to disseminate information have people come and join us, but Jharkhand, another 10,000 copies were that society actually needs — about promote attitudinal change,” he says. “In printed, and these have proved very disease, for example — then I think the past, it was important to promote handy as a promotional tool to give to that is also our role.” awareness generation among patients; district officials, legislators, industry Reaction has been positive, with a today, with the success and availability federations, as well as banks, which have number of people saying they had not of MDT, this is less of a priority. Now is money for social initiatives. It has also been aware that the disease was the time to focus on members of the been useful to give to other doctors. Dr. curable, for example. “It showed that general public; their attitudes make or Shukla recalls handing the booklet to six our perception that influential break stigma.” or seven heads of department at Patna members of society did not know that In an illiterate society, every literate Medical College. When they started much about leprosy was correct, and person is an influencer, he points out. reading, there was a “pin-drop silence,” he that targeting them was the right thing “When literacy levels are low, people says. “They found out things about to do,” said Shankar. believe what others say, because they leprosy they never knew.”

3 MEETINGS FTEL Aug 04 • No. 9 Health Ministers Give Progress Report Elimination is getting closer, but a concerted effort is required.

At the annual World Health Assembly in Geneva in May, Goodwill Ambassador Yohei Sasakawa held meetings with health ministers from several African and Asian nations, who updated him on the status of leprosy elimination in their countries. The following is a summary of what they told him.

Dr. Kyaw Myint have yet to see the prevalence rate drop below Minister of Health, 1 per 10,000. We are carrying out active search Myanmar of the entire population, and the fact that IEC activities can be conducted in the same We achieved language — Swahili — throughout the country elimination in February is an advantage. District and regional 2003. The key to our TB/leprosy coordinators travel to schools and success has been to community dispensaries looking for patients have health workers in and providing information. the front line who are dedicated to the goal Dr. Francisco Songane of elimination. In Minister of Health, Myanmar, from midwives on, all our health Mozambique workers share that goal. However, outside urban areas, challenges remain, and we are We remain committed making intensive efforts to keep the prevalence to educating rate below 1 case per 10,000. schoolchildren to check and see if any Professor Andry of their family Rasamindrakotroka* members are showing Minister of Health and signs of leprosy. We Family Planning, hold meetings with Madagascar district administrators in every province to tell them about leprosy and Since your visit in 2003, give them literature about it. To achieve we have formed mobile elimination by the end of 2005, we will need an health teams that are extra push not just in the northern part of the making door-to-door country but nationwide. visits in remote areas to reach patients. Dr. Albertina Julia Currently there are 13 teams, and this year we Hamukwaya hope to increase the number to 23 teams covering Minister of Health, 22 regions. The teams help to sensitize and Angola mobilize government and religious leaders to recommend patients to go to hospital and receive The lengthy civil war is free treatment. We are also training people. As a finally at an end, and as result of these efforts, the prevalence rate has the domestic situation come down from over 4 per 10,000 to 3.34. At stabilizes, this is a good this pace, elimination by the end of 2005 is a opportunity to move possibility, but we will need ongoing support if ahead with leprosy LEPROSY LEXICON we are going to achieve this goal. elimination activities. IEC At present, these cover about 60% of the country. Information, Education Dr. Mwinyihaji From now on, the urgent task will be to achieve and Communication Makame 100% coverage, expand the MDT supply ratio activities serve several Minister of Health & (currently at 30%), and train health workers. An purposes: to raise Social Welfare, Zanzibar important aspect of this is community awareness of signs and (also representing involvement. Encouraging early detection of symptoms of the disease, Tanzania on this patients, spreading the word that treatment is free, encourage self-reporting occasion) and eliminating stigma are tasks that must be and bring about an end to carried out at the community level. stigma. IEC messages The number of are delivered via patients has dropped * In July, Professor Rasamindrakotroka was replaced as everything from TV to below 5,000, but we health minister by Jean-Louis Robinson. puppet shows.

4 FTEL Aug 04 • No. 9 REPORTHUMAN FROM STORIES INDIA Making the Best of Life Zimbabweans Dan Izzett and his wife Babs have both had leprosy, but they’ve also had the right attitude to coping with the disease, as Izzet describes.

I grew up with my mother and brother in Harare, my father having died when I was eight. When I was at boarding school in 1962, I kept burning and banging my hands without feeling anything, but thought this was a phase all 14-year-olds went through! AUTHOR: In August 1970, I married Babs and the Dan Izzett following November I broke out in a rash. I Chairperson of The went to see a dermatologist who diagnosed me Leprosy Mission as having an STD (Sexually-Transmitted . Also a partner Disease)! I told him that that was impossible in the Leprosy Forum of but he accused me of lying. Bewildered, I ended Zimbabwe, which reaches up taking three courses of treatment, none of out to those with the which had any effect. disease and trains people By this stage my feet and legs had also lost in early detection. all sensation. Eventually, the dermatologist referred me to another doctor who, after many other tests, took a biopsy and sent it off to the government medical officer in charge of leprosy work. It was only in July 1977 that I was finally diagnosed as having leprosy — a shock, but also a relief after my previous misdiagnosis. During all this time, Babs, our families and close friends stuck by me. I was aware of the stigma surrounding leprosy and I didn’t want to tell anyone except my family. At work I only told my boss. My mother Dan Izzett pictured at a Government Rehabilitation and I tried to work out how I had caught the Home near Chengalpattu, Tamil Nadu, on a visit to India disease as a child but we couldn’t come up with in September 2003 to participate in an IDEA workshop. any answers. to have a check-up at the tropical disease unit. Yes, Babs had contracted leprosy as well. There was no point wallowing She was put on Dapsone, which killed the bacilli before any disabilities developed. in misery, I just had to take However, over the next two years, she suffered hold of the situation. severe pain as her body’s defenses reacted to the dead bacilli and caused inflammation of the nerves. We had some dreadful days when we One morning in 1977, I soaked my feet in a were both confined to bed. basin while I was shaving. The water, which I’d On 23 August 1980, surgeons amputated my thought was cool, was extremely hot. After right leg below the knee as a last resort to stop scraping off the dead skin and rubbing in cream, the infection. There was no point wallowing in I went to work. That evening when I took my misery, I just had to take hold of the situation shoes off, my feet were a mass of blisters. An and plough on through. infection started in the little toe of my right And Babs? foot, which soon spread to the metatarsal Well, I call her the “Iron Lady” for coming bones. through her own illness, all the while The next few years were incredibly difficult supporting me and caring for the children. as I was in and out of the hospital as the Although I’ve felt frustrated, I’ve never felt infection worsened. Added to this, Babs, bitter about my illness. I’ve just kept going, pregnant with our second son, developed knowing that tomorrow I must provide for my patches on her skin. family, tomorrow I’ve got to get up and make The dermatologist told her it was the best of life. psychological — that she’d broken out in what she thought were insensitive patches in Originally published by The Leprosy Mission sympathy with me. Not convinced, she decided Zimbabwe

5 AMBASSADOR’S JOURNAL FTEL Aug 04 • No. 9 Bhutan’s Success WHO Goodwill Ambassador Yohei Sasakawa’s travels take him to Jordan, India and the “land of the thunder dragon,” Bhutan, which achieved elimination in 1997.

JORDAN 5 per 10,000, and nine more states where it is When I visited Jordan in May, I contacted the local between 2 and 5, so the need for still greater WHO office and the Jordanian Ministry of Health efforts at elimination remains unchanged. To make ahead of time, and asked them to look into the progress toward elimination and remove stigma, leprosy situation for me. I learned from this several widespread PR activities will be required to see things: leprosy was eliminated from the kingdom that correct information about the disease reaches long ago; there is virtually no evidence that it was everyone. This is not just a task for organizations endemic; and nobody knows anything about the and individuals specializing in leprosy; it needs to disease today. There was a hospital on the west involve people and organizations in every sector of bank of the River Jordan, but this was destroyed in society. Again, it is not only a question of medical 1967 at the time of the Six-Day War. There may integration, but social integration as well. The role be some hidden cases, but since leprosy does not the media can play in disseminating the right exist in government records, there is no way of messages about leprosy is enormous — and how finding out. Given that leprosy is described in the to involve the media in doing this was, of course, Old Testament and Jordan is not far from Christ’s one of the main themes of this gathering. birthplace, it’s hard to comprehend that no records In response to my remarks, Dr. S.D. Gokhale, of the disease exist today. the ILU president, proposed involving cured persons in a systematic and organized way as INDIA spokespersons to bring about an attitudinal change On June 4 and 5, I was in New Delhi to attend a regarding the disease and so work toward National Consultation Workshop on Advocacy elimination and the end of discrimination. Nothing Strategies for the Elimination of carries more weight than the Leprosy. Held under the auspices of statements of cured persons. Until the India-headquartered now, they have led a hidden International Leprosy Union, the existence. It is very important that workshop focused particularly on we now ask them to assume a what role the media can play in social role in making efforts for leprosy elimination, and was elimination and ending attended by government, NGO, discrimination, and I look forward and media representatives, as well to seeing real progress in this area. as people cured of the disease. I used the occasion to suggest to BHUTAN those present that we 1) come up From India I traveled on to the with a concrete plan on how to use Kingdom of Bhutan. Bhutan is the media, 2) consider putting about the same size as cured persons at the center of Dr. S.D. Gokhale Switzerland, and has a population elimination activities, and 3) of about 700,000. A mountainous promote not just medical integration but social country, it nestles in the Himalayas between integration. I urged them to treat discrimination and India and is known by its people as against cured persons and their families as a “the land of the thunder dragon.” About 80% of human rights problem, and reported that I am the population work the land. The national working to have the UN Commission on Human religion is Tibetan Buddhism. Rights take up the issue. Bhutan began fighting leprosy in the 1950s, As there is a separate report on the Delhi mainly under the patronage of the royal family, proceedings elsewhere in this issue, let me here and it wasn’t until the 1960s that the government just bring up two more important points. began elimination activities in earnest. In 1962, the First, I was delighted to hear Dr. G.P. Dhillon, royal family invited The Leprosy Mission to the deputy director general (leprosy) for India’s Bhutan, following which the government and the Ministry of Health and Family Welfare, say that NGO joined forces to tackle the disease. Thanks to the prevalence rate in India as of March 31, 2004, the effectiveness of MDT, which was introduced had dropped to 2.44 cases per 10,000 population. to Bhutan in 1982, the country achieved Of course, this is at the national level. There are elimination in 1997 and by 2003 the number of still two states where the prevalence rate is above cases had dropped from 4,000 in 1966 to just 18.

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Health Minister Dr. Jigmi Singay (left) in conversa- tion with Yohei Sasakawa

According to Health Minister Dr. Jigmi Singay, “unlucky people get leprosy.” the driving force behind Bhutan’s success was the For Bhutan, the challenge will be to sustain its powerful political commitment from the king successes. For that, ongoing monitoring and down and the devoted efforts of health workers. surveys are important, as well as an integrated The role of religious figures has also had a big approach to the rehabilitation of those who have impact. A Buddhist priest who came down with suffered from the disease. leprosy meditated, attained enlightenment, was With free healthcare and education for all, treated and cured, then traveled from village to Bhutan has a national policy that the king has village telling people about the disease. expressed as Gross National Happiness (GNH). It Currently, about 10 designated staff work in derives from the belief that the collective happiness the leprosy area, but the government program is to of the people is the most important indicator of integrate treatment into the general healthcare national well-being, and is based on a set of system as the goal shifts from elimination in the strategies for creating an environment in which direction of eradication. people have the best chance of finding happiness. These involve equitable and sustainable development, conserving the fragile Himalayan Bhutan began fighting leprosy environment essential to Bhutan’s survival, preserving the best aspects of its culture while in the 1950s, mainly through carefully choosing what to bring in from the the efforts of the royal family. outside, and creating good governance. While it is difficult to put happiness into figures, reducing the infant mortality rate and raising per capita income are two ways that it can be measured. To maintain Bhutan’s identity, both men and women are required to wear national dress in public. The role of the extended family, which acts as a social safety net, is also something to which Bhutanese attach much importance. In Prime Minister Jigme Y. Thinley’s words, GNH is a way of developing society that focuses Bhutan: 80% of people work the land on the human dimension, creating the conditions in which individuals can find happiness, reminding The national hospital at Gidakom, built them that material wealth is not everything and originally as a leprosy hospital and once the main that there needs to be a balance between the focus of elimination activities, is now a general material and the spiritual. Listening to his hospital. Nearby is a dwelling-cum-workshop for explanation, I felt his words served as a warning, cured persons, where I met a married couple and that Bhutan has raised an issue that everyone earning a living making handicrafts. should consider. But I wonder to what extent those However, stigma is deep-rooted, and there is a of us who have grown accustomed to affluence widespread fear that those who contract leprosy will be able to change the way we live, and rethink will suffer deformity. There is also a belief that our values.

7 NEWS FTEL Aug 04 • No. 9 WHO Shifting Leprosy Program to India Move will generate momentum at the front-lines of the elimination battle

The World Health Organization is relocating its disease burden is currently found — India and global leprosy elimination program from Southeast Asia — and generate additional Geneva to New Delhi. The move is in line with momentum toward elimination. a proposal by Director-General Jong-wook Lee While the program will now be managed at the beginning of his mandate. from WHO Regional Office for Southeast Asia, The idea is to bring WHO staff members New Delhi, it remains an integral part of the most closely associated with leprosy Department of Control, Prevention and elimination to the area where the highest Eradication at WHO’s Geneva headquarters. SASAKAWA CALLS ON DR. SAMLEE

During his visit to India in June, WHO Goodwill Ambassador Yohei Sasakawa paid a courtesy call on Dr. Samlee Plianbangchang, the recently-appointed regional director for WHO’s Southeast Asia Region, in New Delhi. While the region has achieved much in the area of health development, including higher life expectancy and lower infant mortality, Dr. Samlee noted that many challenges remain. In particular, he singled out polio eradication and leprosy elimination as unfinished items on the health agenda. For his part, Ambassador Sasakawa welcomed the regional director’s commitment and said that he looked forward to seeing leprosy eliminated in the region during Dr. Samlee’s term of office.

FROM THE EDITORS

CHANGING MINDSETS FOR THE ELIMINATION OF A couple of anecdotes related by a participant taken up by a person of influence. In Bhutan, it LEPROSY at the recent New Delhi workshop on was the king, a revered figure, who showed Publisher advocacy strategies (see pages two and three) the way by taking a personal interest in Yohei Sasakawa revealed the irrational logic of which people leprosy. Once the king and other members of Executive Editor are capable. A man with leprosy who went for the royal family indicated their concern, this Tatsuya Tanami reconstructive surgery on his hand exhibited helped to break down barriers and lead the Editor rare damage to his index finger, not normally way for Bhutan to achieve elimination in 1997 Jonathan Lloyd-Owen Associate Editors affected by the disease. “Unusual,” said the (pages six and seven). Akiko Nozawa, surgeon, “but it can be straightened out.” “Oh, Ultimately, though, it is the attitude of James Huffman you don’t have to bother with that finger,” those affected by leprosy and how they lead Layout said the man, “it wasn’t caused by leprosy.” their lives that is the starting point for shaping Eiko Nishida Or there was the man who was more worried public perceptions. “Stigma begins with me,” Photographer about his neighbor finding out that his daughter said Arvin Patel in a memorable phrase from Natsuko Tominaga was being treated for leprosy than he was about the Delhi workshop, arguing that if a person Editorial Office whether she would be cured or suffer deformity. with the disease treated himself or herself 5th Floor, Nippon What these stories reveal is how differently, then it was only to be expected Foundation Building, misconceptions can flourish if leprosy is not that other people would as well. 1-2-2 Akasaka, Minato-ku, seen for what it really is — just another One man who did not let leprosy get him Tokyo 107-8404 disease. But they also show the power of down was Dan Izzett of Zimbabwe, who Tel: +81-3-6229-5601 anecdote to convey a point. In seeking a recounts his and wife Babs’ story of coping Fax: +81-3-6229-5602 [email protected] strategy to generate awareness, a well-told with leprosy (page five). While there were story that engages people at an emotional level times when he felt frustrated about the With support from: and sets them thinking about issues can be an disease, he writes, he never felt bitter, and has Sasakawa Memorial extremely effective way to get society at large gone on to make the best of life. An example Health Foundation, to consider the topic. to everyone — and just the sort of inspiring The Nippon Foundation Another approach is to have the subject story that can make a difference. www.nippon-foundation. or.jp

©2004 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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