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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

AMBASSADOR’S JOURNAL: Building Momentum

The Goodwill Ambassador maintains his unrelenting schedule, with two visits to India either side of appearances at the 18th International Leprosy Congress in Belgium and a human rights symposium in Ethiopia.

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Meeting with Health Secretary Desiraju and colleagues

INDIA (August 28-30)

The recent International Leprosy Summit in Bangkok served to renew political commitment for a leprosy-free world among countries with a high burden of the disease. It was unfortunate, however, that no one from the central government of India - the country accounting for the most new cases of leprosy - had been able to attend.

Building on the momentum generated by the summit, I was keen to travel to India at the earliest opportunity and brief the Ministry of Health and Family Welfare on the outcome. My visit at the end of August, though short, was very productive.

I met with Health Secretary Keshav Desiraju, who assured me that India was firmly committed to leprosy control. He also promised the ministry's cooperation over upcoming visits I had planned to West Bengal and Uttar Pradesh, two high-burden states. Among others attending the meeting were Dr. Nata Menabde, WHO representative to India, Dr. Sumana Barua of the WHO's Global Leprosy Program and Dr. C.M. Agrawal, the DDG-Leprosy at the ministry. It was an important gathering.

After my meeting at the ministry, I called at the National Human Rights Commission. Next January's Global Appeal to end stigma and discrimination against people affected by leprosy is being supported by national human rights institutes and I wanted to seek the commission's endorsement in person.

I also attended a get-together of the recently inaugurated Forum of Parliamentarians to Free India of Leprosy, hosted by Dinesh Trivedi, formerly Union Minister for Railways and Union Minister of State for Health and Family Welfare. (See Interview on page 4.) It is very encouraging to have such influential figures engaged in tackling leprosy and I have high hopes for the contribution they can make.

Lastly, I took part in the board meeting of the Sasakawa-India Leprosy Foundation. I am happy to see the progress it is making in working with colonies to provide residents with alternatives to begging, and I look forward to further positive reports.

BELGIUM (September 15-16)

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Speaking at the opening ceremony of the congress

In September I flew to Brussels to attend the opening ceremony of the18th International Leprosy Congress, which was held in the presence of HRH Princess Astrid of Belgium.

Following on from the International Leprosy Summit in Bangkok in July, it was another opportunity to focus attention on the challenges that remain in leprosy, of which there are many.

The priority of leprosy in government health agendas is declining; clinical expertise is shrinking; and stigma and discrimination in society continue to inflict pain and suffering on people affected by leprosy and their families.

Securing renewed political commitment from high-endemic countries in Bangkok was critical, but this alone cannot directly prevent further transmission of leprosy, nor can it directly change the lives of patients or those affected by leprosy. That requires the efforts of all those gathered at the congress, I told delegates. "Each of us has a vital role to play; each of us is an agent for change."

Most importantly, I said, "it is vital to sustain a platform such as this congress, where experts from various fields can come together to share their findings, build networks and learn from each other to find innovative solutions for our common challenges."

I hope that the congress will have been successful in this respect.

ETHIOPIA (September 17-21)

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Participants in the African Regional Symposium on Leprosy and Human Rights

From Belgium I moved on to Ethiopia to attend the African Regional Symposium on Leprosy and Human Rights on September 18. This was the third in a series of five regional symposia The Nippon Foundation is organizing to familiarize governments and policy makers with the U.N. resolution on eliminating stigma against people affected by leprosy and to guide them on how to implement its accompanying principles and guidelines.

In my speech at the conference, I said that many of the problems facing people affected by leprosy today stem from society's misperceptions and ignorance about leprosy. I gave the example of Sinknesh, a 28-year-old woman born in the western region of Ethiopia. When she was 12, she began to develop symptoms of leprosy. Sinknesh was lucky to meet leprosy workers in town who took her to Addis Ababa to be treated. With a year of treatment, she was completely cured, but her family disowned her all the same. They burned all of her belongings, told her that she was a curse and a disgrace to her family, and that she was never to return home. Being abandoned, and with no skills, she had to resort to begging on the streets.

Within a year of treatment she was completely cured, but her family disowned her all the same.

Sinknesh was fortunate to find support from the Ethiopian National Association of Persons Affected by Leprosy (ENAPAL). ENAPAL is dedicated to empowering people affected by the disease by providing opportunities for education, skills training and microfunding. It also engages in nationwide campaigns to raise public awareness about leprosy. Now, Sinknesh no longer begs, she has found work at her church doing embroidery, and she has even returned to school. But even after many years of being cured, she still lives in a community of leprosy-affected people and, except for her brother, she has not reunited with her other family members.

It is imperative that governments work with NGOs, civil societies and media to formulate policies and plans of action to raise awareness in society and to foster respect for the human rights and dignity of persons affected by leprosy and their families. This is the most difficult task and the most time consuming. But if governments can make a commitment toward this end, I am convinced that we will be able to make an impact that is far-reaching. The more people understand what leprosy really is, the fewer stories we will have of ones like Sinknesh