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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

AMBASSADOR’S JOURNAL: India and the Middle East

Visits to colonies and a human rights workshop in India, to sanatoria in Egypt, and to a leprosy program managers' meeting in Lebanon.

INDIA (DECEMBER 10-12)

India sees approximately 130,000 new cases of leprosy each year. Nationwide, there are thought to be around 800 self-settled colonies of persons affected by the disease. I am striving to enable the social reintegration of these people, so that they too can lead dignified lives, free from discrimination and prejudice. I was keen, therefore, to attend the First International Workshop on an Inclusive Society: Leprosy and Human Rights, in Pune, Maharashtra.

Prior to arriving in Pune, I visited some leprosy colonies in the Mumbai area. The Sanjay Nagar colony in Borivali in the north of the city I have visited previously. It was formed in the 1940s and 50s opposite a cremation ground. Today it is home to approximately 1,500 people.

One of the problems the colony faces is posed by a nearby creek, which floods homes with untreated sewage during the rainy season. The colony's president, Bhimrao Madhale, has raised the issue of flood control with the authorities many times, but to no avail.

Landownership issues are a common concern for colony residents.

Another concern is that of landownership. As Mumbai has expanded, the city now encroaches on what was once wilderness. The colony residents are anxious about the future, but have made no progress with the authorities on the land issue. As they do not legally own the land themselves, they would be in a weak position were they to face eviction. This is a common problem among residents of colonies.

I told them the time had come to join forces with other colonies to address this problem. I believe that if the issue of landownership could be resolved in one state, this would serve as a model for the whole of India.

Next I visited the Panvel Colony about one hour east of Mumbai. It is divided in two by a railway line, and is home to about 28 families, totaling 150 people. A number of small-scale self-help groups operate there, supported by a Christian NGO. They produce household disinfectant and garments, and provide assistance to elderly and disabled people affected by leprosy.

Some residents beg for a living. I was told of an elderly woman who goes to a nearby temple a couple of times a week, where she makes about 15 rupees, or a third of a US dollar, a day. By contrast, young people I met said they wanted to become schoolteachers, cricketers and the like. One boy told me, "I want to grow up quickly so that I can help my parents." This sentiment was echoed by many others.

In Pune, it was a pleasure to meet up again with Dr. S.D. Gokhale, Honorary President of the International Leprosy Union (ILU), one of the conference organizers. I have known Dr. Gokhale for many years and respect all he has done for people affected by leprosy.

The conference was attended by participants from nine countries, including representatives from MORHAN (Brazil), CORSOHANSEN (Colombia), ENAPAL (Ethiopia) and HANVIT (Korea). It took place against the backdrop of a number of significant developments mentioned on page 2.

In order to pave the way toward an inclusive society, I stressed the significance of the new UN principles and guidelines on ending discrimination. However, I warned participants that the effectiveness of the principles and guidelines depends on how they are used. Each and every individual should familiarize himself with the guidelines, and refer to them in any discussion with the authorities. "You are the main actors," I said, calling on them to strengthen their organizations and solidify their ties with overseas counterparts.

While in Pune, I also visited another colony, named Anandvan, in the Dapodi district. Established in 1952, it is home to about 400 people. Recently a flour-milling operation run by women was established at the colony. There are also plans for a dairy farm nearby.

Compared to when I first began visiting India, it is apparent that the circumstances of people living in the colonies are improving. Nonetheless, there remain many instances of discrimination in society, and much work remains to be done.

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The Goodwill Ambassador with residents of Sungai Kundur settlement in Palembang, South Sumatra

EGYPT (DECEMBER 13-14)

From India, I traveled to the Middle East to attend the opening of a regional meeting of leprosy program managers in Lebanon. En route, I stopped in Egypt, where I called on the WHO's Eastern Mediterranean Regional Office (EMRO) and visited two leprosaria.

EMRO is one of the six WHO regional offices, and oversees North Africa, the Middle East and West Africa -- representing a total of 22 countries from Morocco to Pakistan. Most of the countries covered by EMRO, including Egypt, are considered low-level endemic countries for leprosy. There are, however, countries such as Afghanistan, Somalia and parts of Sudan where the situation on the ground makes leprosy control extremely challenging.

For its part, Egypt achieved the WHO's interim goal of eliminating leprosy as a public health problem in 1994. In 2009, only 700 new cases of leprosy were discovered. There were 912 registered patients at the end of that year, making for a prevalence rate of 0.13 per 10,000 people. At the provincial level, five of Egypt's 27 provinces have yet to achieve elimination.

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Attending the program managers' meeting in Beirut.

Abu Zaabal leprosy sanatorium is in the north of Cairo. When it was founded in 1932, it was some miles from the city; since then, the city has come to its door. At the time of my visit, there were around 700 patients, 35% of them women. When I arrived, I found plenty of patients in the grounds, enjoying the fine weather. It looked more like an old people's home than it did a sanatorium.

I was particularly impressed by the patients' warmth of feeling toward the medical staff and how pleasant the facilities were. At the same time, I noted how many patients I spoke with felt there was no place for them in society. As I told a television interviewer later, while I admired the set-up at Abu Zaabal, I regretted the fact that many who were being treated there had no homes to return to. Every country must work harder to eradicate the social discrimination that keeps marginalized groups living apart from the mainstream.

The next day I visited Egypt's second city, Alexandria, about 200 kilometers from Cairo. My destination was Amria leprosarium. At its peak, the facility housed around 200-250 persons; today, they number just 20. I was struck by the contrast with Abu Zaabal. Amria is situated in renovated barracks formerly used by British soldiers when Egypt was under occupation. The walls were thick and the atmosphere was heavy.

LEBANON (December 15-16)

From Egypt I flew to Lebanon, where I attended a meeting of leprosy program managers from EMRO countries. Representatives from 14 of the 22 countries attended. Invited to say a few words,

I stressed the importance of focusing on both on the medical and social aspects of the disease. I used the image I often do of a motorcycle, with the front and back wheels symbolizing the medical cure and social rehabilitation, respectively. The two must turn smoothly together if we are to reach our goal of a leprosy-free world.

I appreciated the opportunity to meet people working in EMRO countries. Over the coming months I would like to get to know the region better, so as to see for myself the challenges these countries face and the lessons that can be learned from their experiences.