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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

AMBASSADOR’S JOURNAL: The Road from Rabat

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Discussing a 10-year-old photo at Rovisco Pais

PORTUGAL (November 2-4)

It had been 10 years since I last visited Hospital Rovisco Pais, which is located about an hour’s drive from the historic university town of Coimbra. The hospital was established in 1947 as Portugal’s last leprosarium. It served exclusively in that capacity until 1996, when it became a general hospital with a focus on the rehabilitation of victims of accidents and strokes. On the occasion of my last visit, there were around 40 of the original residents still living here; now there are just 12 — ranging in age from 75 to 93.

On arrival, I was given a short presentation on Rovisco Pais’s history. In the year it opened, 374 leprosy patients were admitted. In total, 2,298 people with the disease have lived here. The sanatorium had its own shoe-making factory, football teams, cinema, agricultural land and other facilities, providing both recreation and employment for its inmates.

I was then taken on a tour of the grounds, first being shown a modern, brightly lit rehabilitation complex. This stood in contrast to one of the original hospital buildings where I was taken next to meet with some of the now-elderly residents living with the consequences of leprosy.

The intervening years have taken their toll on Rovisco Pais’s residents.

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The glass panels that kept children and their leprosy-affected parents apart

Among those I chatted with was a lady I had met a decade earlier. I gave her a photo from my previous visit of her and her husband, who has since died. As the decline in numbers attests, the intervening years have taken their toll on Rovisco Pais’s residents, while diseases of aging are also leaving their mark on those still living here.

Near the hospital entrance I was shown a small building that played a poignant role in the leprosarium’s history. It was here that children born to parents affected by leprosy were periodically taken to meet them. Separated by glass, they could not touch one another because the authorities forbade physical contact for fear of spreading the disease. The building appears to serve as a storeroom today, but it was possible to imagine the scenes that must have played out here in the past.

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Discarded records

The last stop on my visit was the hospital’s church. It was designed so that people affected by leprosy were kept apart from the rest of the congregation; in a further act of segregation, male and female inmates sat in separate wings.

The health authorities have expressed an interest in preserving the history of Hospital Rovisco Pais and the role it played in controlling leprosy in Portugal. I was told that there are plans to convert the church into a museum. The building will need extensive renovations before a museum can open; but this is an important initiative and I hope it will come about.

Before leaving Portugal, I visited the University of Coimbra where I called at the Anthropology Dept. There, Dr. Vitor Matos and his colleagues introduced me to their work on the origins and spread of leprosy. Showing me skulls and skeletal remains, Dr. Matos explained how it was possible to detect whether a person had had the disease from changes in the bone structure. I was impressed by the research they are carrying out and how they are helping to further our understanding of this ancient disease.

INDIA (November 17-24)

In November I traveled to the Indian state of Uttar Pradesh, my first visit in just over a year. Uttar Pradesh annually reports the most new cases of leprosy of any state in India.

Accompanied by Vagavathali Narsappa, the president of the Association of People Affected by Leprosy (APAL) and his colleagues, I had meetings in Lucknow with Principal Secretary (Health & Family Welfare) Arvind Kumar and Chief Minister Akhilesh Yadav. I expressed my hope that the state would fill the post of district leprosy officer in every district, and that it consider increasing the pension paid to people affected by leprosy, many of whom — especially the elderly and disabled — have to beg for a living.

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In Faizabad, where many elderly colony residents must beg in order to make a living

On November 19, I visited a leprosy colony in Faizabad, a three-hour drive from Lucknow. The Shri San Sewa Kush Ashram is home to 66 people, including 50 affected by leprosy. Some of the younger residents work as rickshaw drivers or sell ornaments, but most have no work and go begging each day. With a heavy heart, I accompanied them to their usual spot by the side of a river, knowing that my dream of seeing an end to begging among people affected by leprosy in India is far from being realized.

Three years ago, the colony applied for funding from the Sasakawa-India Leprosy Foundation (SILF) for a sustainable livelihood project, but the enterprise had to be abandoned because of a legal dispute over land ownership. Now that the issue has been resolved, the residents wish to try again. I hope they will be successful this time.

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With Governor Ram Naik of Uttar Pradesh

Returning to Lucknow, I had a meeting with an old acquaintance, Uttar Pradesh Governor Ram Naik. The governor has a deep understanding of leprosy: several years ago, he was among prominent individuals who submitted a petition to Parliament about the problems that people affected by leprosy face. In 2010, the Parliamentary Petitions Committee issued its report and recommendations, but these have yet to be followed up. The governor, who knows Prime Minister Narendra Modi well, said he had received an undertaking that the report would be discussed.

Moving on to Delhi, I attended a press conference on November 20 to announce the launch of the Dalai Lama-Sasakawa Scholarship for children living in leprosy colonies. The fund is worth US$100,000 a year and will be jointly administered by SILF and APAL. Meeting with His Holiness the next day, I thanked him again for his generosity.

The press conference was held at the residence of Member of Parliament Dinesh Trivedi. He is convener of the Forum of Parliamentarians to Free India from Leprosy. Seven members attended the press conference and a meeting with me afterward. They expressed a desire to visit colonies, which I encouraged. “Speak to the residents, relay your impressions to the media and ask questions in Parliament,” I urged them.

The next day, I attended a debriefing meeting on a mid-term evaluation of the Ministry of Health and Family Welfare’s current strategy for leprosy (2012-2017), held jointly with the WHO. India eliminated leprosy as a public health problem at the end of 2005, but despite its subsequent efforts at further reducing the burden of the disease, case numbers have leveled off. A number of recommendations were made at the meeting; for my part, I proposed holding an Indian Leprosy Summit in Tokyo in 2015.

My last appointment was with Prime Minister Modi. When we met in Tokyo in September, I said I hoped that on my next visit to India I could introduce him to the head of the Association of People Affected by Leprosy. The prime minister had not forgotten, and now I looked on as he and Mr. Narsappa shook hands.

Mr. Narsappa presented the prime minister with a list of the issues that APAL would like to see resolved; they include those relating to land ownership, pensions and discriminatory laws. I added that I hoped the prime minister would issue a message on India’s Anti-Leprosy Day on January 30, stating that leprosy is curable and discrimination has no place. I feel this would have a very big impact.

I am most grateful to the prime minister for making time for this meeting. I intend to redouble my efforts to work for an India without leprosy and its consequences.