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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

AMBASSADOR’S JOURNAL: From the Caucasus to the Congo

During a busy two-month period, the goodwill ambassador travels to six countries, including those where leprosy is still a public health problem, and others which see only a handful of cases a year.

INDIA (OCTOBER 9-13)

In October, I traveled to India for the launch of the Sasakawa-India Leprosy Foundation, or SILF (see page 2). SILF's role is to help break down the stigma and discrimination that surround leprosy. Among its tasks will be to assist people affected by leprosy and their families in gaining access to education, skills training and microfinancing. The Nippon Foundation provided an endowment of $10 million and SILF hopes to supplement this with additional support from the Indian corporate sector. SILF will also act as a catalyst for putting groups of leprosy-affected people in contact with existing self-help programs for disadvantaged communities.

The chief guest at the establishment ceremony in Delhi on October 9 was former President of India Dr. Abdul Kalam, who spoke of the need for "rehabilitation with compassion." One of the key goals is to break down the social and economic barriers that separate self-settled leprosy colonies from wider society. This will take time; the first step is to make the colonies self-sufficient.

A reception attended by Indian Finance Minister P. Chidambaram in the evening was followed 24 hours later by another SILF launch event, this time in Mumbai. While there, I took the opportunity to call on several of India's top industrialists to explain the workings of the new foundation and seek their advice and cooperation.

There was also time for a short field visit, which took me to Trombay, a colony on Mumbai's outskirts. Founded in 1942, it is home to 3,500 people affected by leprosy and their families, including about 1,000 children.

The colony has its own school. Tuition is free, so it also attracts pupils from outside the colony. As a result, it plays an important role in forging ties with the surrounding community and helping to reduce stigma and discrimination.

No one in Trombay begs for a living. But economic self-sufficiency is the major worry. City authorities put a stop to the production of bootleg liquor, which had been an important earner, and the colony is now looking for new ways to generate income.

Kathmandu seminar updates participants on Nepal's progress

NEPAL (OCTOBER 13-15)

From India I traveled to Nepal to attend a seminar on leprosy elimination. Nepal is one of the four countries yet to achieve the elimination goal but is moving in the right direction. Organized by the government with the help of the WHO, the meeting heard Minister of Health and Population Girirajmani Pokharel say that Nepal hoped to reduce the registered prevalence of leprosy to below 1 case per 10,000 population sometime next year.

Currently, Nepal has 3,700 leprosy cases, and a prevalence rate of 1.45. The elimination goal has already been achieved in 42 out of Nepal's 75 districts, but 20 out of the remaining 33 districts account for 80% of the leprosy caseload. All of these are in the Terai region.

The political and geographical realities of Nepal have made eliminating the disease a challenge, and matters have not been helped by frequent "changes of guard" among those in charge of the effort. In addition, stigma and discrimination remain a problem, and much more must be done in the area of rehabilitation.

However, the central government does recognize the problems and is working to resolve them. It is also able to count on the support of experienced NGOs, both local and international, key representatives of which attended an advocacy workshop the next day.

Because of the situation on the ground, it was unfortunate that people responsible for implementing the strategy at the regional and district level could not attend. They are vital for bringing services into the field, and we need to hear from them about the challenges they face. On my next visit to Nepal, therefore, I plan to visit the front lines, meet them in person, and see the situation for myself.

Umbaki sanatorium is located in a former oil workers' camp, about 80 kilometers from the Azerbaijan capital.

TURKEY (OCTOBER 16-18)

Leprosy on the Anatolian peninsula has a long history, with leprosaria dating back to Roman times. But not until the advent of the Turkish Republic in 1923 were systematic attempts begun to screen and record cases of leprosy. Turkey has long since eliminated the disease as a public health problem and last year there were just seven new cases.

A remarkable lady who has played a pivotal role in tackling the disease in her country is Professor Dr. Turkan Saylan, whom I had the pleasure of meeting when I called on the Istanbul Leprosy Hospital.

The hospital, which is not far from Istanbul's airport, began functioning as an independent leprosy hospital in 1981. However, the hospital buildings -- converted army barracks located on the grounds of a mental hospital -- had been used to accommodate leprosy patients since 1927.

Currently the hospital is home to 22 people suffering from leprosy-related disabilities, the youngest of whom is 45. It also offers surgical treatment and rehabilitation, and sees outpatients.

Dr. Saylan served as director of the hospital between 1981 and 2002. Now retired, she remains active in a Turkish NGO focusing on educational projects (see page 3).

One of the admirable things about the approach championed by Dr. Saylan and her colleagues is that they not only attended to patients' medical conditions, but also focused on their social needs. Based on the idea that medical treatment and social support are equally important, patients were properly cared for, provided with protective shoes and glasses, given assistance for social and economic rehabilitation, and their children provided with scholarship funds. In other words, Dr. Saylan and her team adopted a holistic approach to dealing with leprosy.

I was deeply impressed by Dr. Saylan's methods. At the same time, I was also reminded how implementing such a far-sighted approach to problem-solving requires a person with strong leadership qualities -- precisely the qualities that Dr. Saylan so obviously possesses.