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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

AMBASSADOR’S JOURNAL: Travels in Asia and Africa

Initiating a new project in Indonesia, encouraging Zambia to keep focused on leprosy, and visiting a home for people affected by the disease in Singapore.


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With Dr. Surin Pitsuwan, ASEAN Secretary General

INDONESIA (JUNE 13-15)

In June I traveled to Indonesia. The main purpose of my visit was to attend the official launch of a new project on leprosy and human dignity. This is a joint initiative of the Association of Southeast Asian Nations Secretariat (ASEC) and The Nippon Foundation of which I am chairman. The project is a region-wide movement to restore the dignity and realize the social reintegration of people affected by leprosy. It is one of five projects to be implemented based on a Memorandum of Agreement our organizations signed in June 2008. Never before has a regional body taken up leprosy as a human rights issue, so the ASECTNF Project has deep significance. Over time, I am hopeful it can make a real difference to the lives of people affected by leprosy.

The project, which is in its infancy, begins in Indonesia, where ASEC has its headquarters. It is an appropriate starting point, as Indonesia has the highest leprosy burden in ASEAN . 17,000 new cases in 2008 . and stigma remains a deepseated problem.

For an update on the situation in Indonesia, I arrived in the country a couple of days early, flying into Surabaya, the provincial capital of East Java. East Java has more new cases of leprosy than any other of Indonesia's 33 provinces, newly diagnosing about 5,000 cases annually. Of these, around 600 are children, or a ratio of 12 %. Because of the stigma, the disease can affect their education and create problems for them later in life in terms of work and marriage. The proportion of grade 2 disability is similarly high among new cases, at around 11 %, placing a burden on families and communities. Indicative of the scale of the problem, I was told that intensive surveys uncover still more new cases, indicating an urgent need for information, education and communication activities at the grassroots level.

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Winners of the coloring competition in Surabaya

Following my meeting with health officials, I visited a local convention center where I had been asked to hand out prizes to students in a coloring and writing contest to promote leprosy awareness. I also watched part of a drama about stigma and discrimination performed by high school students.

In the afternoon I traveled to Lamongan, about two hours from Surabaya, where I sat in on a lesson about leprosy being given by Ahmad Zainudin to a class of elementary school children. I first met Ahmad in Manila, when he attended the launch of Global Appeal 2007 to end stigma and discrimination against people affected by leprosy. It was around that time that he and Adi Yosep (see page 2) were in the process of forming PerMaTa, an advocacy organization of and for people affected by leprosy of which Ahmad is now president.

Several members of PerMaTa accompanied me during my stay in East Java. Among them was Farida, who was one of two people affected by leprosy to read out the text of Global Appeal 2009 in London at the start of this year. I was delighted to hear that Farida's visit to London has inspired her to study English and to become more active in PerMaTa as well.

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A patient at Sumber Glagah Hospital practices self-care.

On my last day in East Java, I traveled to Sumber Glagah hospital, about an hour's drive from Surabaya. Established as a leprosy hospital in 1955 by Dutch doctors, the 100-bed hospital today sets aside half its beds for people affected by leprosy. They receive all treatment free of charge, whatever their illness. The hospital offers reconstructive surgery, has a physiotherapy department, and also makes shoes and artificial limbs for patients. During my tour, I came across a group of patients practicing self-care, so I stopped briefly to chat with them and help them wash their feet. All in all, I found the hospital to be extremely well-run and was very impressed by what I saw.

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Scene from nearby Sumber Glagah village

A few minutes' walk from the hospital is the village of Sumber Glagah. Its population includes about 180 people affected by leprosy. Some run their own small businesses or work as day laborers, and others have land for growing crops, but I understand that many make a living from begging, traveling by motorcycle to nearby towns for that purpose. Just before I left, as I was addressing a group of villagers, one of them loudly announced that he was tired of visits such as mine that never amounted to anything, and demanded work. His anger was understandable. With social reintegration still problematic, I am hopeful that the ASEC-TNF Project will pave the way for more opportunities for this gentleman and others like him by making it easier for people affected by leprosy to find jobs and be accepted by society.


ZAMBIA (JUNE 30-JULY 4)

It had been almost 20 years since my last visit to Zambia when I flew into the capital Lusaka at the end of June for an update on that country's leprosy situation. With a population of around 12 million, this southern African nation famous for its copper reserves covers an area of over 750,000 square kilometers and shares borders with eight countries.

Zambia successfully achieved the WHO's goal of eliminating leprosy as a public health problem in the year 2000. However, as in many other countries that have passed this milestone, it is important to ensure that the disease is not forgotten. Thus my visit was intended to remind political leaders that they need to remain aware of leprosy, even though they have other disease priorities such as HIV/AIDS, TB and malaria.

Leprosy control activities in Zambia began in earnest in the 1930s, when the country was known as Northern Rhodesia. Missionaries established leprosaria, and by 1968, four years after Zambia had won its independence from Britain, there were a total of 31 leprosaria in the country.

With the introduction of multidrug therapy to Zambia in 1986 and the implementation of health reforms in the 1990s, there was a change in treatment policy and leprosaria were converted into general hospitals. I visited one of these, Liteta Hospital, during my stay.

But first I called on Health Minister Kapembwa Simbao and his team to learn more about the current leprosy situation. Accompanying me were the WHO's country representative Dr. Olusegun Babaniyi, and Dr. Landry Bide from the WHO Regional Office for Africa.

Zambia currently reports about 300 new cases of leprosy a year. Most are found in Northern Province and Western Province, prompting Dr. Bide to suggest that the health ministry consider scaling up activities in these areas.

The health minister said the government was committed to fighting leprosy, despite the heavy demands made by other diseases. However, the ministry's own presentation acknowledged that its efforts were hampered by a number of factors. These included inadequate staffing at provincial and health facility levels, inadequate knowledge and skill among general health staff, inadequate skills and competencies among district coordinators, lack of community awareness and participation, high levels of stigma, and inadequate rehabilitation and care services for people affected by leprosy.


Issues include inadequate human resources and lack of community awareness.

The ministry's presentation also showed there were some gaps in the records. Data for the years 2000 to 2002 was missing and there was low reporting from districts in 2005-2006.

On the subject of data, Dr. Babaniyi encouraged the ministry to implement measures to review data on leprosy control on an annual basis in order to make recommendations on ways to reduce the burden further.

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With Zambia's President Rupiah Banda in Lusaka

Later the same day, I called on President Rupiah Banda, who kindly made time to meet with me while recuperating from a recent knee operation. I emphasized that although Zambia had achieved the WHO's goal of eliminating leprosy as a public health problem, it should not become complacent, as there was still much to be done, including the work of eliminating stigma and discrimination.

The president remarked that while he was often called upon to address diseases such as HIV/AIDS and TB, he was never called upon to speak about leprosy. He was interested to learn that I would be visiting Liteta Hospital and said that "in our culture we are afraid to shake hands" with people affected by leprosy and that "there are a lot of diseases we are superstitious about." But after hearing about my work he said he now knew better. He asked the health minister, who was also present, to redouble efforts to eradicate leprosy.

On my visit to Liteta I was accompanied by representatives of the Zambian media, some of whom were learning about leprosy for the first time. After a briefing from hospital staff, I met with some people affected by leprosy who live in a nearby "invalid compound," a legacy of the days when the hospital was a national leprosarium and people who were sent there for treatment were effectively abandoned by their families. I made a point of shaking hands with each person I met, and I hope that these images captured in photographs and broadcast on TV will help to break down lingering discrimination toward people affected by the disease.

In concluding this account, let me mention an anecdote that the health ministry's permanent secretary, Dr.Velepi Mtonga, related. Attending a village function on World Leprosy Day, she heard a child say, "A friend with leprosy is still a friend to me." Remarked the permanent secretary, "It's a cause for hope if a young child says this." I couldn't agree with her more. Reaching children with the right messages is a key aspect of community awareness.


SINGAPORE (JULY 5)

Traveling back to Japan by way of Southeast Asia, I took the opportunity to pay a visit to SILRA Home in Singapore. Founded in 1971, SILRA Home provides accommodation and care for people affected by leprosy. In 2005, it relocated from aging premises to a newly-built facility. Today, 51 residents ranging in age from 59 to 90 live there . a generation with nowhere else to go. Their experiences, and those of their counterparts in the Sungai Buloh Leprosy Sanatorium in Malaysia, are recounted in a new book by Loh Kah Seng (see page 8). I look forward to reading it.


EXCERPT

"Persons affected by leprosy have a major role to play in leprosy services, especially in the areas of advocacy, awareness and rehabilitation. Organized efforts by persons affected by leprosy are vital to promote a positive perception and attitude about the disease among the public; to bring about essential changes in the legal measures that are discriminatory in nature; and to ensure that leprosy control continues to occupy an important place in the health policy framework of the country." (From the WHO's Enhanced Global Strategy for Further Reducing the Disease Burden due to Leprosy)