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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

AMBASSADOR’S JOURNAL: Awareness-raising in Sulawesi

The Goodwill Ambassador pays another visit to Indonesia to meet with local decision makers and carry out more media work.

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Posing with Chia, an ambassador for TB and leprosy awareness, in South Sulawesi

INDONESIA (March 15-22)

In March I made a return visit to Indonesia. It reports the third highest number of leprosy cases after India and Brazil, and is a country I have been focusing on of late.

Since Indonesia’s provinces and districts are relatively autonomous, I believe it is important to meet with local decision makers and impress upon them that in a world of competing health priorities, they cannot afford to overlook leprosy.

With that in mind I flew back to the island of Sulawesi, following my mission to Gorontalo Province last November. This time I travelled to the provinces of South Sulawesi and Central Sulawesi. They are among 12 of Indonesia’s 34 provinces yet to eliminate leprosy as a public health problem.

Arriving in Makassar, the provincial capital of South Sulawesi, the first item on my agenda was a visit to Kanjilo Health Center in Gowa District. There I was briefed by staff and local officials on the work they are doing to detect and treat leprosy.

“I have many bitter memories and scars on my body,” Ermawati said. But she also shed tears of joy.

One of the speakers said he had seen clips of me on YouTube “shaking hands with patients and treating leprosy as just another disease, and this inspires us to do the same.”

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Ermawati tells her story at Kanjilo Health Center

Of all the presentations, the most moving was by a young lady called Ermawati, who was reduced to tears as she gave an account of the stigma she had faced after being diagnosed with leprosy. Her testimony was so affecting that my interpreter began to cry.

“I have many bitter memories and scars on my body,” Ermawati said. But she also shed tears of joy as she recalled making friends with other patients and encountering the people’s organization, PerMaTa, of which she is now a proud member. “I am so grateful to PerMaTa,” Ermawati said. “They told me I should not feel ashamed.”

Next I called on two households to offer encouragement to family members currently being treated for leprosy with multidrug therapy (MDT). I found them in good spirits and told them that they were on track to make a complete recovery because they had been diagnosed early.

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Taking part in a radio phone-in show in Makassar

Later in the day I made the first of four live TV and radio appearances I had scheduled during my stay, continuing the media work I did on my previous visit to Indonesia. This was on TVRI Makassar, where I was joined by a local health official and PerMaTa Vice President Al Qadri for an hour-long discussion about leprosy.

The following morning found me at a local radio station, Gamasi 105.9, where I was again one of three guests, including Al Qadri. He told listeners about his experience of leprosy and said: “My wife is also a person affected by leprosy. We have two children and they are perfectly fine.”

To learn more about PerMaTa’s activities, I visited one of its branches in South Sulawesi; in total, it has 29 branches in four Indonesian provinces. Among their activities, members make home visits, accompany patients to hospital and promote self care.

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Sharing a light-hearted moment at the home of a patient in Gowa District, South Sulawesi

Before leaving South Sulawesi I attended a stakeholders’ meeting in Gowa. I appreciate these meetings because they bring together representatives of different government agencies. This is important, because only through the cooperation of many sectors will it be possible to beat leprosy and its stigmas.

In Central Sulawesi, I first visited Sigi District, a mountainous district with many remote communities. “People talk about Papua Province as having areas that are difficult to access, but the same is true of Sigi,” Mayor Moh Irwan Lapatta told me. He said he would draw up a strategy involving different departments to better tackle leprosy in the district. “It’s all about synergy,” the mayor said, a message he repeated later in the morning when we visited Biromaru Health Center together.

The presentations at the health center illustrated the challenges to leprosy control in the area. These included the difficulty of keeping track of patients; low living standards; severe stigma; lack of awareness in the community; hard-to- reach areas; and inability to retain staff.

Among those invited to speak was Paulus Manek, the president of PerMaTa, who expressed the hope that the new strategy the mayor was planning would involve the input of a person affected by the disease. “Please use us,” he said.

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Appearing in a live TV broadcast in Palu

I had two more media appearances scheduled. The first was on TVRI Palu, where I shared the stage with a health official and a local man who spoke about his experiences with leprosy. I also featured in a discussion about leprosy on RRI Radio. Appearing with me was Paulus Manek: “Leprosy is not the problem,” he told listeners. “It is lack of awareness that’s the problem.”

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Central Sulawesi Governor Longki Djanggola

While in Central Sulawesi, I appreciated the opportunity to call on Governor Longki Djanggola. I requested that he use his position to convey to local legislators, educators and other persons of influence that leprosy is curable and treatment is available free of charge.

I also recorded a short video message on leprosy to be used for awareness-raising purposes as part of the People’s Healthy Lifestyle Movement (Germas). The initiative promotes community health via different means, including video clips shown in public places such as shopping centers, restaurants and even aboard ferries. I hope my message plays its part.

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With members of Commission IX and other health representatives at a meeting in Jakarta

Before leaving Indonesia, I had a meeting in Jakarta with a group of parliamentarians who are members of Commission IX, a cross-party body whose responsibilities include health. They took a real interest in leprosy and suggested creating “local ambassadors” to engage in awareness building.

I am very glad to have made this contact. With the support of Commission IX, I think there could be fresh impetus against leprosy.