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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

AMBASSADOR’S JOURNAL: Sing a Song, Find a Patch

The Goodwill Ambassador travels to Indonesia, where a catchy song-and-dance routine forms the centerpiece of a new campaign to promote early detection of leprosy within families.

INDONESIA (MARCH 13-16)

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“Let’s find a patch”: students get with the beat at a leprosy awareness campaign in Sampang city on Madura Island in Indonesia’s East Java Province.

Indonesia eliminated leprosy as a public health problem in 2000, but continues to account for the third highest number of annual new cases in the world after India and Brazil. At the sub-national level, 12 out of the country’s 34 provinces have yet to achieve elimination, defined as a prevalence of less than 1 case per 10,000 population.

Of these, East Java reports some 40% of Indonesia’s cases. Annual new case numbers in the province have remained more or less constant between 2004 and 2014, and between 8% and 10% of newly diagnosed patients have Grade II or visible disability — a sign of late diagnosis.

To address the challenges posed by leprosy, the Indonesian government has come up with a “zero” strategy: zero illness, zero transmission, zero disability, zero discrimination and stigma. The strategy has a number of elements, including raising awareness of leprosy within communities and families.

It was to witness the start of new awareness campaign targeting families that I traveled to Surabaya, the provincial capital of East Java, after a stop-over in Jakarta for a briefing at the WHO Country Office.

My first order of business was a visit to Sumber Glagah Hospital, about an hour’s drive from Surabaya, which I had last visited in 2009. It was established as a leprosy hospital by Dutch doctors in 1955 and today sets aside a proportion of its beds for the disease.

En route, I called at the adjacent Sumber Glagah village, whose residents include 93 people affected by leprosy and their families. On arrival I was taken to an assembly hall that had been built with the support of the social welfare ministry, where about 100 people of all ages were waiting for me. I told them that if they found a patch on a child’s skin, they should go the hospital without delay — a message I requested the media covering my visit to report.

It is certainly a snappy tune, and they clearly enjoyed performing it.

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Taking part in the campaign in Sampang city

Moving on to Sumber Glagah hospital, I could hear music as I passed through the gates. In the courtyard, staff greeted me with a song-and-dance routine. “Let’s find a patch,” they sang. This was the song that had been written for the new awareness-raising campaign to encourage families to check their skin for signs of leprosy. It is certainly a snappy tune, and they clearly enjoyed performing it.

I visited with some of the inpatients. The first patient I spoke with, a 50-year-old man, had been admitted two weeks earlier. He had ulcers on his right hand and leg. He was the only person in his village to have leprosy, but he didn’t confide in anyone for five years because he thought it would cost money. It wasn’t until a neighbor told him he should go to hospital and see a doctor that he did, but by now the disease had left its mark. It had also caused his wife and children to abandon him, he told me.

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Chatting with residents of Sumber Glagah village

In a courtyard I spoke with two men practicing self-care. They turned out to be brothers, aged 30 and 36. The younger brother had a prosthetic leg and both showed after-effects of the disease. I couldn’t help thinking that if they and the previous gentleman had sought treatment sooner, their lives might have turned out differently. It is so important that people have access to correct information about leprosy and that they act on it.

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Practising self-care: brothers at Sumber Glagah Hospital

The following day I departed for Madura Island for the official start of the campaign. The island is reached via the country’s longest bridge, spanning the Strait of Madura. From the far shore, the island appeared shrouded in mist, but gradually came into view. It has a population of some 3.6 million. It took a further hour after crossing the bridge to reach the city of Sampang. There I met Sampang Deputy Regent Haji Fadhilah Budiono and the head of the Sampang District Health Office, Dr. Firman Pria Abadi.

Dr. Abadi told me: “There is still strong stigma attached to leprosy, but you have to keep in mind that 30% of the population lives in poverty and most children get an average of only four years of education. There are those who can’t read or don’t understand what’s being said, and this makes it hard to spread knowledge about leprosy.”

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Meeting the media: an essential part of the Goodwill Ambassador’s work is spreading awareness of leprosy.

That’s where the new initiative I had come to see has a role to play. The deputy regent told me: “We’re starting a campaign to get families to look for skin patches. With the help of families and volunteers, we want to make efforts at early detection.”

We moved to a city square for what was billed as a World Leprosy Day celebration. There were tents and a stage decorated with red and white cloth. A red carpet had been laid out. About 800 people had gathered, many of them elementary and middle school students. A health ministry official explained that in conjunction with World Leprosy Day, a new campaign was being launched that would become the driving force behind protecting each family’s health. It would encourage family members to look for skin patches and, if they find any, have them examined at a hospital without delay.

To mark the start of the campaign, health ministry staff, children and dignitaries — myself included — began dancing in the high heat and humidity to the song, “Let’s find a patch!” The lyrics go something like this:

If there are patches on your body, friend
Around the ears
On your face
On your hands
On your back or your legs
Do not be ashamed
Go and get them checked immediately
Let’s keep the family healthy

This year, the campaign rolls out in East Java, South Sulawesi and Central Sulawesi, and goes nationwide next year.

In the fight against leprosy, we need to persevere, no matter what the obstacles are. Along with India and Brazil, Indonesia is of particular importance to reducing the global disease burden. Next time I visit, I shall listen out for the song wherever I go.