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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

AMBASSADOR’S JOURNAL: Joining Forces to Fight Stigma

Visits to London for the launch of Global Appeal 2008, Hyderabad for the 17th International Leprosy Congress, and Nepal's Terai belt to meet with health workers.

UNITED KINGDOM (JANUARY 26-29)

At the end of January I went to London for the launch of the third Global Appeal to end stigma and discrimination against people affected by leprosy. I began these appeals in 2006 to draw attention to an issue that I feel the world has overlooked. While the wording of the appeals differs slightly from year to year, their intent is always the same: to emphasize the injustice of persistent discrimination toward people affected by the disease and their families, and to call on the public at large to acquaint themselves with the true facts about leprosy as a step toward ending the stigma.

Each year I seek the support of a different set of people or organizations so as to involve a broad coalition of interests from both within and outside the leprosy world. The first appeal, launched from Delhi in 2006, was endorsed by world leaders such as former President Jimmy Carter and Archbishop Desmond Tutu. The second was cosigned by leaders of people affected by leprosy from 13 countries. This year I approached major human rights bodies such as Amnesty International and the International Save the Children Alliance to join me in issuing the appeal, and I was delighted that nine recognized the importance of this issue and lent their valuable support.

This year's appeal was launched from London, since many of the organizations are headquartered in the United Kingdom. As with previous appeals, it was timed to coincide with World Leprosy Day, although for organizational reasons Global Appeal 2008 was issued one day later, on January 28.

I am extremely grateful to the Royal Society of Medicine for allowing us to host the event at at its London headquarters. I would also like to thank Sahira Hamadi and Ame Juma Muhamed, the two young people from Tanzania who read out the appeal, Dr. Sira Mamboya who accompanied them, and Jose Ramirez for recounting his experiences as a person affected by leprosy in the United States.

Two businesses run by people affected by leprosy in Rock Land Colony

INDIA (JANUARY 30-FEBRUARY 1)

From London I traveled to India to attend the opening of 17th International Leprosy Congress in Hyderabad. This congress, which is organized by the International Leprosy Association, takes place every five years. While the ILA remains a professional body of doctors and scientists concerned with the science of leprosy, it has over time started to give increasing weight to the social aspects of the disease. Hence, I was encouraged to note that speakers at the opening session referred to the human rights of people affected by leprosy and the necessity of ensuring their social and economic integration.

For my part, I said that that we must work harder to counter the ignorance and superstition that still color the way many people regard the disease. We can do this by working closely with the media, spreading correct information about leprosy and condemning the use of stigmatizing terminology.

Ultimately, I believe that people affected by leprosy themselves will be the main actors in a social movement to end discrimination. I look forward to seeing assembly members, government officials, social leaders and industrialists emerge from their ranks. When that happens, they will serve as role models that will help the next generation to develop more quickly.

One such role model is Mr. Md. Salahuddin, the founder of Parvath Nagar, or Rock Land Colony, in Hyderabad. I have met Mr. Salahuddin several times now, and respect him greatly. He established the colony for people affected by leprosy in 1978 after he came to an arrangement with the city authorities for the use of some 50 acres of rockstrewn land.

Mr. Salahuddin's iron-clad rule was "no begging". People affected by leprosy could have land to live on but only if they agreed to work for a living. This did not happen easily. He fought battles with the authorities over employment rights of residents, and later waged a legal struggle over the title to the land, but in the long run the colony has survived and thrived.

Today there are about 7,500 people living in Rock Land, of whom about 600 are people affected by leprosy. It is an integrated community with many amenities owned and operated by affected persons.

Mr. Salahuddin, who once trained as a bodybuilder and aspired to be "Mr. Hyderabad" before being diagnosed with leprosy, was his usual dapper self and greeted me in his trademark white suit. Now in his sixties, he remains a true leader, and Rock Land is a fitting monument to his achievements.

NEPAL (FEBRUARY 2-5)

After my last visit to Nepal in October 2007, I was determined to return at the next opportunity and see for myself the issues confronting health care workers in the field. With that in mind, I traveled from Hyderabad to Kathmandu, and thence to Nepal's Terai belt, which accounts for about 80% of the country's leprosy cases. My destination was Chitwan District, some 100 kilometers southwest of the capital. The area is famous for the Royal Chitwan National Park, a World Heritage site.

While Nepal's leprosy prevalence rate at the national level has decreased to 1.2 cases per 10,000 people, in Chitwan it lingers at 1.88. Of new cases, 70% are multibacillary. Also worrisome is the high grade II disability rate of 17% among new cases, indicating a pressing need for early detection.

With volunteer health workers at Bakulahar health post in Nepal



I was encouraged by the number and dedication of the health volunteers I saw.

A morning mist covers the Rapti river in Chitwan.

Health officials had told me beforehand that services do not adequately reach some parts of the country because of political problems, although they are hoping for the situation to improve following the election in April. So it was indicative of the challenges that exist that my travel arrangements could not be finalized until almost the last minute; my movements in Chitwan were restricted; and there were reports of explosions while I was there. Nevertheless, I was able to call at a leprosy clinic and several other health facilities.

Although I had been told of the difficulties of motivating local health workers, on this visit at least I was encouraged by the number and dedication of the FCHV (Female Community Health Volunteers) that I encountered. Rooted in the local community, they make an important contribution to the welfare of the populace.

This was a brief but instructive trip. Clearly, Nepal must sustain effort at every level to make further progress against the disease.