Threat Amid Ignorance

KOMPAS/HENDRA A SETYAWAN

Suwarti, 49, whose legs were amputated because of leprosy during adolescence, has to do extra work to support her family because her husband cannot work anymore because of diabetes. Her prosthetic feet have been out of order for the past two months and can longer be worn. She has been forced to borrow a neighbor\'s prosthetic limbs to carry out her daily activities.

In the beginning, people in Somnak and Daikot hamlets, Joutu district, Asmat regency, Papua, saw their numb and blistery skin, painful joints, stiff fingers and paralyzed limbs as something usual. Many people experienced these symptoms.

Most people infected with leprosy in Daikot and Somnak are children, many of whom have deformed limbs. A 12-year-old child from Somnak hamlet, who had just been diagnosed with leprosy, said he had no idea how dangerous the disease is. He said that he often complained about painful joints and numb and whitening back.

“We thought it was just a regular skin disease. We don’t know when it began but people here have had that disease for a long time,” Somnak hamlet head Tadius Joutu, 60, said.

We were informed by local nurses in February 2019 that many residents had leprosy. However, reaching the two hamlets is difficult and costly. We could do a survey in the locations only two months later.

In April this year, Papua health research and development agency personnel under leprosy researcher Hana Krisnawati, along with a team from the Asmat Health Agency, visited the two hamlets located six-seven hours away by speedboat from Asmat regency’s capital, Agats. An initial check found that around 30 percent of people in the two hamlets, which has 200 and 300 people, respectively, had leprosy.

“We were informed by local nurses in February 2019 that many residents had leprosy. However, reaching the two hamlets is difficult and costly. We could do a survey in the locations only two months later,” said Hana, who visited the two hamlets again in August. In the visit, researchers from the Eijkman Molecular Biology Research Center conducted a genetics research.

The researchers identified more leprosy cases during their visit. Like people in other villages in the remote Asmat regency, people in Somnak and Daikot regularly live in the forest and are only in the hamlets on certain days.

“The symptoms are clearly of leprosy. The skin has started to go numb and cannot feel when touched,” said Elihud Robaha of the Papua health agency to a mother who brought her 9-year-old boy for a medical checkup.

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Juleha, 38, from Pemalang, Central Java, had her right leg amputated because of leprosy during adolescence. Her artificial leg has been out of order for the past year and can longer be used, so she cannot move easily where she wants. Even when she fetches her child from school, she has to ask for help from her neighbors.

The boy was thin with white marks on his back. One of his legs was smaller than the other, signifying that the one of his legs was smaller than the other, which means that the Mycobacterium leprae germ

has reached the bone. Elihud took a skin tissue cell behind the boy’s ear and a blood sample for further checks.

“When children have leprosy, most likely they get it from their parents. The disease is not easily infectious. It requires intensive interaction with sufferers to catch it, or [living in] certain population who are genetically prone [to the disease],” Hana said.

Leprosy is highly affected by our physical condition. If our personal hygiene is poor, when leprosy bacteria attacks us, we won’t have the immunity to protect ourselves. Furthermore, if we lack nutrition, our resistance will also be poorer.

Proneness toward leprosy in Papua is also caused by behavior and environment. Tadius said that locals rarely bathe. When they bathe in the river or the swamp, usually they bathe with their clothes on.

“Leprosy is highly affected by our physical condition. If our personal hygiene is poor, when leprosy bacteria attacks us, we won’t have the immunity to protect ourselves. Furthermore, if we lack nutrition, our resistance will also be poorer,” Hana said.

The spread of leprosy in the two hamlets in Asmat is also due to delays of identifying the disease and treating the sufferers. With earlier treatment, the potential of infection will be smaller.

Tip of an iceberg

With many isolated regions, leprosy in Papua is like the tip of an iceberg. The region’s high proneness towards leprosy was first detected in 2009, when the first leprosy case was found in Mumugu hamlet, Sawaerma district, Asmat. Over 70 percent of locals in the hamlet have leprosy.

Since then, the government has conducted intensive treatment in Mumugu hamlet, including by working with the Agats diocese. “In January 2015, the government provided intensive treatment after two visits by Health Minister Nafsiah Mboi,” said Alfons Suwada Asmat Foundation (YASA) chair Pastor P Hendrikus Haga Pr of the Agats diocese.

Nowadays, the fight against leprosy in Mumugu has begun to bear fruit. However, new pockets of the disease are still found. Other than poor accessibility, social factor also poses a huge challenge.

Papuans commonly have a different perspective on sickness. Hana said that Papuans commonly think of sickness as being incapable to move. “As long as they can still do their regular activities, no matter if they are suffering from severe malaria, they will still feel healthy,” she said.

Another challenge is that some infected people in Papua are allergic to leprosy medicine dapson, which the World Health Organization (WHO) recommends to take daily for a year. Patients allergic to dapson will have yellow eyes, scaly skin and shortness of breath. The medicine may also be fatal for these people. Hana said that she alleged Papuans have certain genetic factors that made them hypersensitive towards the drug.

WHO data in 2017 showed that Indonesia had 17,441 lepers, the world’s third highest after India and Brazil. Of Indonesia’s 34 provinces, leprosy had yet to be eradicated in nine provinces, including Papua, West Papua, South Sulawesi and North Maluku. Leprosy prevalence in these regions are higher than one per 10,000 people.

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Titin, 52, had her leg amputated because of leprosy during adolescence. Her prosthetic leg has been out of order for the past two years and can longer be used. She has been forced to use the damaged limb to attend important events. Mostly she prefers to stay at home.

Poor knowledge, lack of hygiene awareness and the mingling of healthy people with the infected persons are the causes of the high prevalence of leprosy, especially in isolated hamlets in Papua. Locals’ poor knowledge on leprosy is also found in other regions. Subur, a resident of Sitanala hamlet in Tangerang, Banten, for instance, often had high fever, red eyes, blackened skin and fungus-like white spots on the back. After a medical check, he was diagnosed with leprosy.

Due to the issue’s complexity, special treatment is required to eliminate leprosy in regions, especially in Papua. However, the most worrying problem is people’s lack of knowledge and limited healthcare access. Because of this, there can be delays in treating leprosy, which is actually not easily infectious.