WHO ’S NEWSLETTER December 2009 • Number 41 FOR THE • Leprosy is curable Elimination • Free treatment is available OF Leprosy • Social discrimination has no place

The Goodwill Ambassdor (center) with staff of Kyun Kone Rural Health Center in Myanmar’s Bago division on October 25.

MESSAGE CONTENTS

Maintaining Awareness Message 1 Interview On a recent visit to Myanmar I had the in efforts to control and eradicate the disease. Dr. Vineeta Shanker, opportunity to visit a health center about This requires effective information, education Executive Director, SILF 2 four hours’ drive from Yangon and meet with and communication strategies reaching down Cambodia Report healthcare workers and several people affected to the grassroots level. This is particularly Steady progress 4 by leprosy. Over the years, I have visited many important in areas where there is still a high such facilities in different countries. The purpose degree of stigma attached to leprosy, resulting in Book Review of these visits is always the same: to see for the disease being concealed rather than cured. Making and Unmaking myself the situation on the ground, to show my Cases that go untreated perpetuate stigma and the Asylum 5 support and appreciation for the important work are a burden on families and communities. Heritage that frontline healthcare workers do, and to offer Governments have made enormous strides Saving Sungai Buloh 5 encouragement to people affected by leprosy and in controlling leprosy, working closely with the Human Story listen to their concerns. WHO and with local and international partners. Maya Ranaware 6 With the integration of leprosy services into This cooperation will continue to be essential. the general healthcare system, it is essential that But more must be done to involve people affected Ambassador’s Journal 7 health workers be familiar with the disease. by leprosy as key partners in the process. Having Myanmar However, as leprosy becomes less of an issue, experienced the disease themselves, they are News they will encounter fewer cases, making it the real experts and have an important role Drug surveillance, more difficult to recognize the signs. But it is to play in promoting community awareness, Father Damien book 8 a challenge that must be met, because early breaking down stigma and ensuring that people From the Editors 8 diagnosis and prompt treatment with multidrug affected by leprosy receive the treatment and therapy are the bedrock of leprosy control. understanding they need. The onus is not just on health workers. There also needs to be greater community involvement — Yohei Sasakawa, WHO Goodwill Ambassador

1 INTERVIEW FTEL Dec 09 • No. 41 Speaking of SILF Foundation aims to help people on a path to self-reliance and dignity.

The Sasakawa- Leprosy Foundation (SILF*) more about their needs and desires. What INTERVIEWEE was launched in October 2007, with an endowment of did you learn from this? Dr. Vineeta Shanker US$10 million from The Nippon Foundation, to create One of the major findings was that, although opportunities for people affected by leprosy and their the young people had high aspirations, they had family members. We asked SILF’s Executive Director, few life skills to translate these into reality. Dr. Vineeta Shanker, for a progress report. They were not well informed about the choices and the demands that different kinds of What is SILF’s mission? vocations and professions entailed with respect SILF’s mission is to make itself irrelevant. In to technical, interpersonal, communication other words, we would like to see an end to the and emotional skills. Clearly, they need both stigma that denies people affected by leprosy motivational and career counseling to be and their families equal access to education and successful in life. Also, they had all internalized income-earning opportunities and their rightful the stigma against people affected by leprosy place in society, and that also erodes their and their families and carried a sense of rejection Executive Director confidence and abilities. and isolation. Sasakawa-India Leprosy Foundation How well-known is SILF? In funding livelihood projects, what It’s a new foundation that started its program parameters has SILF set? activities just last year. I think in the field of For the time being, SILF has decided to leprosy SILF is well known, not because of what concentrate on the population living in self- it has done but because it is an initiative of Mr. settled colonies that are within the National Yohei Sasakawa, whose work in the area of Forum [of persons affected by leprosy] network. leprosy eradication is recognized the world over. One of the guiding principles of our livelihood funding is that the proposals have to come from What kind of feedback have you been the people themselves. Often these proposals getting from persons affected by leprosy? are just ideas of what people would like to do. The reaction has been mixed. On one hand, We take these seriously and try and develop there is excitement that funds have been given by them with the persons concerned into viable and Mr. Sasakawa for their upliftment. On the other sustainable projects. hand, there is disappointment that the funds are Initially there was an influx of proposals, not going to be available as grants and gifts, but not all of which were workable. To help bridge are going to be linked to a livelihood-generation this gap we started organizing training for initiative with oversight and monitoring by project identification, development and proposal SILF and The Nippon Foundation. Moreover, preparation. those who were hoping to get assistance for To ensure that there are concrete results the education of their children are even more from this training we insist that the workshop disappointed as, in the initial phase, SILF facilitators help develop at least one proposal decided to concentrate on livelihoods. We are from each of the participating colonies into a now in a position to introduce a small education detailed project outline with market feasibility program, which will hopefully begin soon.

What has been the response of the business community to SILF? Are you making any headway encouraging employers to think about hiring persons affected by leprosy and members of their family? We have not yet approached them in any systematic way, but overall there is interest and sympathy and a willingness to offer support. We will have to see how this translates into funds or training or employment in the coming months when we hope to approach them about their greater involvement. Footnote SILF asked career counselors to conduct Skills training at Kusth Ashram Viklang Sahayata in * For more information about interviews with colony residents to find out Dehradun, Uttarakhand SILF, visit www.silf.in

2 FTEL Dec 09 • No. 41

assessment and a business plan. This is done as a We focus on eradicating stigma through social follow-up to the workshops. and economic rehabilitation. Within this mandate we have prioritized livelihood funding, What sort of proposals have you been but there are other equally urgent needs that receiving? people affected by leprosy and their families By and large, the demand is for starting simple face, especially in the field of education and and traditional activities such as livestock, capacity building. tailoring, and candle-making. Eventually we We are now going to begin our educational would like to work toward activities that funding. We would like to initially focus respond to the demands of a changing economy, on vocational training for youths who have and expect to include non traditional activities. had some schooling but are now at a loose end, without jobs and without skills to start Please give some examples of recent something on their own. We are not going to projects SILF has funded. be running the training ourselves, but helping Recent beneficiaries include 15 people from people to tap int