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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

AMBASSADOR’S JOURNAL: Global Emissary

The Goodwill Ambassador's travels take him to Brazil, Russia and the Ukraine. He also greets a visitor to Japan.

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With American Leprosy Missions President and CEO Bill Simmons

JAPAN (June 15)

On June 15 I welcomed visiting American Leprosy Missions President and CEO Bill Simmons to The Nippon Foundation. Mr. Simmons took up his post last year after two decades in management. He spent his teen years in Zaire (now DR Congo), where his parents worked as medical missionaries.

Like Mr. Simmons, I had a business background when I started my involvement in leprosy work some 40 years ago. I told him that the new perspective he brings would be very welcome.

His reaction on first learning that the number of new cases of leprosy had fallen below 300,000 was, "That's still a big number." His desire to do something about it was one reason why he joined ALM.

"I don't come from a medical field," he told me, "but I believe we can bring about an end to the disease. Some people may question that, but I believe we can do it."

He went on to say that he didn't intend to keep his organization alive beyond its stated purpose. "Leprosy is our focus, and when leprosy ceases to exist, we will cease to exist," he said. "I want to be the leader of one of the few NGOs to close the door when the job is done."

I told Mr. Simmons that his arrival on the scene was like "a fresh wind." I look forward to collaborating with him to achieve our common goal of a world without leprosy.

BRAZIL (June 20-22)

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With MORHAN in Brazil; law student Thiago is at far left

The Rio+20 U.N. Conference on Sustainable Development took place in Rio de Janeiro in June. I attended in my capacity as chairman of The Nippon Foundation, which is committed to securing the future of the world's oceans. During my brief stay in Rio, I arranged meetings with Artur Custodio, the national coordinator of the Movement to Reintegrate People Affected by Hansen's Disease (MORHAN), and with Brazil's Health Minister, Dr. Alexandre Padilha.

Since its founding, MORHAN has worked very hard to fight against leprosy, to educate the community about the disease and to end stigma and discrimination. Through its efforts, it has secured compensation for those who spent years isolated in hospital-colonies. More recently, it has been pursuing redress for the "second generation" - children separated at birth from parents with the disease. Artur introduced me to Thiago, a law student and a member of this second generation, who is writing a thesis on the subject.

I am impressed by the way that MORHAN is evolving and bringing new people into its ranks. It doesn't always have an easy relationship with the government - "we are social activists," says Artur - yet despite the occasional conflict, the two sides have built up a close connection based on trust. Indeed, I can think of few civil society organizations that have the ear of government in quite the way MORHAN does.

Symbolic of their working relationship, Artur was present at my meeting with Dr. Padilha the next day. The minister assured me that Brazil remains focused on eliminating leprosy as a public health problem by 2015, plans to expand education about leprosy in schools and is pushing for early detection of the disease.

Artur reminded me that Brazil is one of the few countries to mention leprosy in its Millennium Development Goals. In addition, President Dilma Rousseff has made the elimination of leprosy part of her strategy to eliminate extreme poverty from Brazil. As ever, I continue to follow Brazil's progress with keen interest.

RUSSIA (June 28-July 3)

A noticeable absence from the WHO's annual Leprosy Update has been the vast area covered by its European Regional Office (EURO), which stretches from Western Europe to Central Asia and the Russian Far East and is made up of 53 countries. In many of these nations, leprosy is no longer considered a problem. Nonetheless, there are countries and regions where leprosy has a history, and cases still get reported.*

To find out more, I decided to travel to the WHO's EURO region. I was particularly interested in the situation in Russia and Central Asia. In this, I was very much inspired by the trailblazing efforts of Dr. Romana Drabik, a retired German physician who has made it her life's mission to address the medical needs of persons affected by leprosy (see Issue No. 55 of this newsletter). Since the early 1990s she has made repeated visits to the lands of the former Soviet Union, where she has established very good contacts with leprologists and is warmly regarded. Dr. Drabik accompanied me on my mission and was an invaluable presence. Indeed, without her efforts, the visit would not have been possible.

My first destination was the city of Astrakhan in southwest Russia, in the delta region of the Volga River near the Caspian Sea. The Institute of Leprosy Training and Research was founded here in 1948, on the site of a leprosy hospital that had existed since 1896.

The institute was the center of leprosy research and technical guidance on the disease in the former Soviet Union. Under its energetic director, Dr. Victor Duyko, it remains the focus of leprosy activities in Russia and also serves as a resource for Russian-speaking leprologists in the Commonwealth of Independent States (CIS).

Some of those leprologists were on hand to greet me at a small international conference that had been arranged to coincide with my visit (see page 2). I learned that, like Russia, countries such as Tajikistan or Turkmenistan report few new cases, but that the possibility of undetected cases cannot be ruled out. I also discovered that a person diagnosed with leprosy in Russia and the CIS remains registered as a patient even after they are cured, which makes it hard to interpret the numbers and know how many patients are under treatment.

Representing the WHO was Dr. Sumana Barua, team leader of the Global Leprosy Program, and Dr. Alain Disu from the WHO's Moscow Office, whose input was very helpful. If one of the outcomes of the conference is closer cooperation between the leprologists in the region and the Global Leprosy Program, then it will have served an important purpose.

FOOTNOTE

* Data for the European Region is scheduled to appear later this year in the Weekly Epidemiological Record.