When I spoke with Indonesia’s health minister Dr. Nafsiah Mboi in Geneva last May, she told me of a village in Papua Province she visited in January 2013 where half the population was affected by leprosy. To learn more about the situation in Papua, which is Indonesia’s largest and easternmost province and forms one half of the island of New Guinea, I traveled there in January.
With dense jungle and mountains rising over 5,000 meters, Papua is a natural wonderland, but also one whose terrain presents particular challenges when it comes to health coverage.
|Inmates of Agua de Dios were issued with ID cards such as this one, belonging to Emma, seen here with daughter, Ana.|
In 2012, Papua recorded 1,384 new cases of leprosy. I was told, however, that of the province’s 28 districts and one municipality, only 17 report regularly on leprosy because of difficulty in accessing some highland areas, shortages of trained personnel and budgetary constraints. Dr. Arry Pongtiku, a national consultant for leprosy and yaws in the province, estimates that the actual number of cases is probably double that reported.
When I met with Vice Governor Klemen Tinal, he expressed surprise that his province had so many cases and said it would be necessary to form a special team to look into the situation. Not for the first time, I felt that my talks with a political leader had helped to generate awareness of this often overlooked disease and I hope that he will act on the concern he expressed.
|Greeting patients at a health center in Biak
|A mother with her daughter, who is being treated for leprosy, in Jayapura|
Jayapura municipality sees around 400 new cases of leprosy each year. Many of these — around 150 in 2013 — are diagnosed at the Hamadi health center, which is located opposite one of the city’s main markets. After I was given a traditional welcome of singing and dancing, the clinic’s specialist leprosy nurse, Vera Yoku, introduced me to about 20 people who were undergoing treatment for leprosy or already cured of the disease. They ranged in age from four to 72.
I don’t think I have seen a patient as young as four before, and she was one of a number of children I met there. In fact, I was told that children account for a troubling 24% of new cases in Papua, while the figure for neighboring West Papua is even more disturbing, at 40%. This suggests there are many infectious cases among the population.
One of the challenges appears to be convincing people to seek treatment and to complete their courses of MDT. Dr. Pongtiku suggested to me that Papuans have a different concept of sickness. Unless they feel unwell or in pain, the appearance of a patch on their skin is not going to trouble them and they won’t do anything about it.
I visited a community called Hamadi Gunung whose residents include 28 people affected by leprosy. Many who attended a ceremony to greet me told of being treated and cured and getting on with their lives. But afterward I spoke with a man who had stayed by his house because he was ashamed of his disease. In another part of the city, I was taken to meet a boy who had given up on his schooling because of the stigma he felt.
Dr. Pongtiku said there is a need for more doctors to work in remote areas of Papua; a need to train health staff to identify cases; and a need for more advocacy. Finding recruits to work in leprosy was also a challenge, he admitted, because there was a certain amount of leprophobia among health staff.
From Jayapura I flew to Biak, a small island off the north coast of New Guinea and part of Papua Province. It was the scene of heavy fighting during the Pacific War. After Jayapura, the district of Biak Numfor reports the highest number of cases in Papua. Here I visited a hospital and a health center, speaking with a dermatologist and talking with outpatients about their experiences. Later I went to visit a former fisherman. He had been treated for leprosy some years earlier but subsequently injured his leg and developed complications that have left him disabled. He lives alone in a small dwelling and his brother brings him food. It was a lonely existence.
From Papua I flew to Jakarta for the launch of this year’s Global Appeal to End Stigma and Discrimination against People Affected by Leprosy, which was endorsed by national human rights institutions and is featured on page 2.
I also attended a discussion group involving various stakeholders, among them the chairman of PerMaTa, an organization of people affected leprosy. “Stigma is still a serious issue,” Mr. Manek said. “And the worst stigma of all is within the family of the person affected.”
My stay concluded with a visit to Sitanala Hospital, a hospital in Jakarta specializing in leprosy. At the time of my visit there were 60 leprosy in-patients, including 11 long-term patients. Adjacent to the hospital is a community where many people affected by leprosy live.
Like Brazil, Indonesia faces many challenges because it is very spread out. But with the right focus, resources and dedication from top to bottom, progress will be made. I will be following its efforts closely and will do all in my power to assist in its work.