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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

AMBASSADOR’S JOURNAL: A Visit to Europe

The Goodwill Ambassador travels to Geneva for the 67th World Health Assembly and visits a Romanian leprosy hospital by the Danube Delta.

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With Dr. Emma Guzman as she holds the Sasakawa Health Prize

SWITZERLAND (May 19-23)

I always value my visits to Geneva during the World Health Assembly. One of my purposes this year was to sustain the momentum generated by the Bangkok Declaration. This was the declaration endorsed by 17 leprosy-endemic countries at last July’s International Leprosy Summit in Thailand, when they agreed to renew their commitment to achieving a leprosy-free world at the earliest. The summit was called to inject fresh energy into leprosy control activities in the face of stagnating annual new case numbers.

At the summit, I announced that the Nippon Foundation pledged a maximum US$20 million for projects that would improve efforts to tackle leprosy for a period of five years from 2014. As I made the rounds in Geneva, I urged health ministers of the relevant countries to submit proposals for consideration if they had not already done so, while also asking the WHO’s regional directors to encourage the countries in their regions to take advantage of this opportunity to strengthen and refine their anti-leprosy efforts.

Some three-and-a-half years have elapsed since the adoption of the historic UN resolution on elimination of discrimination against people affected by leprosy and their families. Since then I have been organizing a series of regional symposia on leprosy and human rights to explore ways of implementing the Principles and Guidelines noted in the resolution.

Following symposia in the Americas, Asia and Africa, the next gathering is scheduled for the Middle East and will take place in Morocco this autumn. Meeting with Morocco’s director of epidemiology and disease control, Professor Abderrahmane, I was gratified to hear him say that the symposium comes at a good time for Morocco. “Human rights have a big place in our constitution,” he said, referring to the new constitution that came into effect in 2011. He also told me that the Ministry of Health had just signed a Memorandum of Understanding with the National Council for Human Rights in order to collaborate on addressing stigma in relation to HIV, leprosy, mental illness and other diseases. “I think this is a good context for Morocco to host the event,” he said.

I urged health ministers to submit proposals for funding consideration.

Another of my initiatives marks its 10th anniversary next January when Global Appeal 2015 to end stigma and discrimination against people affected by leprosy is launched in Japan. I am hopeful that the International Council of Nurses and its member associations will endorse next year’s appeal. As the ICN is headquartered in Geneva, I had the chance to meet its president, Dr. Judith Shamian, and chief executive director, David C. Benton, for a productive discussion.

Nurses represent the largest body of medical professionals in the world; they are also very close to the community. I am convinced that their backing for the Appeal would represent a huge step forward for our efforts to break down the remaining barriers of discrimination.

An important item on my Geneva agenda each year is to attend the award ceremony for the Sasakawa Health Prize. Given each year for innovative work in public health, the prize this year went to the Leprosy Control Foundation, Inc./ Hubert Bogaert Institute of Dermatology and Skin Surgery in the Dominican Republic.

Established in 1963, the foundation has played a major role in tacking leprosy in the republic and treated more than 13,000 patients. Collecting the award was Dr. Emma Guzman, who said the prize will be used to benefit those most in need. To Dr. Guzman and all her colleagues I offer my heartiest congratulations.

I also met with Dr. Margaret Chan, the WHO’s director general. In extending my term as Goodwill Ambassador for another two years, she expressed the hope we would be able to visit Brazil together one day. I would very much welcome the opportunity.

ROMANIA (May 26)

Romania’s Danube Delta in the southeast of the country is home to 300 species of birds and 45 species of freshwater fish and is on UNESCO’s World Heritage List. Less well known, but also part of our heritage, is the leprosy hospital at Tichilesti in the delta region, where the River Danube empties into the Black Sea south of the border with Ukraine.

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The sign at the entrance to the hospital.

A sign on the road from Tulcea, a city some 40 kilometers away, indicates the turn-off for “Tichilesti Hospital.” A five-minute drive down a narrow road that cuts through rolling countryside brings one to the entrance. Only then does the facility properly announce itself: “Tichilesti Hospital – Leprosarium.”

Strictly speaking, Tichilesti no longer functions as a leprosarium. No new cases of leprosy have been recorded in Romania in recent years and residents are free to come and go. In 2005, with the assistance of European Union funding, part of the hospital was turned into an old people’s home to help integrate Tichilesti into the community. More recently, it has also been accommodating patients with psychiatric problems.

Tracing its origins back to a monastery that cared for people with the disease, the current leprosy hospital dates from 1928.

When once there were as many as 200 patients under treatment for leprosy, there are just 16 persons affected by leprosy resident at Tichilesti today, ranging in age from their 50s to their 80s.

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Dr. Rasvan Vasiliu

Greeting me at the entrance was Dr. Rasvan Vasiliu. He has worked at Tichilesti since 1991. Dr. Vasiliu studied under a renowned Romanian dermatologist, Dr. Pavel Vulcan, who shaped Dr. Vasiliu’s approach. “His attitude really impressed me and was a kind of guideline for me in my life. He wasn’t just a professor or doctor but a human being. For him, the people at Tichilesti were normal human beings, just as he was. This was the most important thing I learned from him,” he said.

It was Dr. Vasiliu who showed me round Tichilesti. Its white-washed buildings were bright against the backdrop of forested hills and a clear blue sky.

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The pace of life is relaxed at Tichilesti.

Here and there I stopped to chat with residents, who I found sitting outside on benches passing the time of day. Maria was dressed in her finest and had a red flower behind her ear. In her 70s, she was diagnosed with leprosy at 15 and has lived at Tichilesti ever since. Long a widow, she joked that she was looking for a rich husband. “I can’t wait any longer. You’ll do!” she said. Her son and daughter-in-law live in the next village. “My daughter-in-law is wonderful. She is as beautiful as this flower,” she told me.

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Domnica: “My heart is here.”

Tichilesti has two churches, Orthodox and Baptist. The pastor of the Baptist church is a former patient. Romica, who had delivered a sermon the previous day, had stayed overnight especially so that he could meet me. I told him that he was the first pastor I had met who was also a person affected by leprosy.

Close by the Baptist church I met Domnica. Her mother Iona was a resident from 1941 until her recent death and Domnica herself was born here. She lived in Tichilesti until she was 13 before starting school and later getting a job. Now she is retired and lives on a pension. She told me that she used to come and stay with her mother every month, and still spends 10 to 15 days a month at Tichilesti. “My heart is here,” she said.

I visited another lady, also called Maria. She has five children, 11 grandchildren and two great grandchildren. She was listening to religious music on her radio. “I have been sustained by the love of God,” she tells me. “I have been a widow for 11 years, but I am fortunate.” She said that she appreciated my visit because it was an opportunity to meet someone new and chat about different things. “Usually, we just talk to the same old people.”

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Calling on Hima, Tichilesti’s oldest resident

Tichilesti’s oldest resident is Hima. She lives in a cottage up a hill, and negotiates a flight of steps each day to reach the main part of the hospital. She arrived in Tichilesti a month shy of her 18th birthday. On June 6, she turned 86. Of the 160 people receiving treatment when she first came, she is the only one who is still here.

When she first arrived, she was in such pain that she couldn’t leave her bed. Now she is a spry octogenarian. “It’s because I thank God every day that I am able to get up every morning and have been able to live healthily to this great age.”

I wondered what life was like under the Communist regime of Nicolae Ceausescu, which ended with his overthrow in 1989. According to Dr. Vasiliu, while leprosy was not talked about during the Communist era and the hospital’s existence was not acknowledged, the residents were provided for by the state and received the necessary food and drugs. “They were never abandoned,” he said.

“The big change today is in the mentality. Before, the gates were closed and there were very few visitors — and absolutely no foreigners. Now, the gates are open.”

I understand that Dr. Vasiliu has worked hard to remove any misunderstandings about leprosy among the public, giving interviews to the media over the years and dispelling myths about the disease. From talking with the residents, it was clear to me how much he and his staff were appreciated for the care they provide and what they have done to normalize life at Tichilesti.

Before I left, Dr. Vasiliu thanked me for visiting and said that it had been like a festival for residents and staff alike. “I hope you will become our ambassador and tell the world about us.” I am happy to do so.