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SOUTH-EAST ASIA: Leper Colonies on the Road to Extinction

Marwaan Macan-Markar

BANGKOK, Jun 23 2010 (IPS) - The Culion island, in the western Philippines, is increasingly becoming a magnet for tourists drawn to its corals in the shallow waters close to its shore, its deep green hills and its ancient Spanish fort.

“In the waters surrounding the island, mangroves, seagrasses and corals support a diverse range of marine life – from colourful butterfly fish to elusive dugongs,” wrote one visitor on a travel website following a trip. “The island is well positioned for tourism.”

Such suggestions of an island with a hopeful future and the openness of its residents to local and foreign visitors confirm how far this island has transformed from what it was better known for in that South-east Asian archipelago throughout the last century.

After all, the Culion island was the world’s largest leper colony, attracting medical researchers from around the world to study people living with leprosy who had been condemned to a life of ostracism and segregation.

In 2006, the island marked its 100-year anniversary since the leper colony was created in the Philippines, which currently has only 2,514 people with leprosy, according to the World Health Organisation (WHO).

The extinction of Culion island as a leper colony is also the path being followed by Indonesia. The South-east Asian giant, currently home to 17,723 people with leprosy, the largest number with the disease in the region, has earmarked its remaining 20 leper colonies for extinction.

“Indonesia decided to end sending people with new cases of leprosy to the leprosy colonies a decade ago,” said Christina Widaningrum, head of the leprosy control programme in Indonesia. “It followed the country achieving the goal of leprosy elimination in 2000.”

The people with leprosy living in the colonies, some with as many as 50 residents, others with close to 100 people, were those who have been living there for years, she told IPS on the sidelines of a WHO regional meeting on ‘Neglected Tropical diseases Targeted for Elimination/Eradication’ held on Jun. 21-22 in the Thai capital. “These are the last remaining colonies.”

In these colonies, found in northern and southern Sumatra, Java and Jakarta, the care ranges from food assistance, help with disabilities and support for its remaining residents to the pursuit of socio-economic activity such as making handicrafts, said Widaningrum.

Indonesia ranks third after India and Brazil among the 18 major endemic countries across the world where this disease is still being reported. India has 136,685 cases and Brazil has 39,125 cases, according to the WHO. Burma, also known as Myanmar, with 3,637 cases, is the only other country besides Indonesia and the Philippines where the disease exists in South-east Asia.

The current global total of 243,137 cases marks a dramatic drop in people living with leprosy from the 5.4 million cases of the disease recorded in 1985. “Now there are no leprosy colonies as institutions. But leprosy patients come together and live,” said S.K. Noordeen, former director of the leprosy programme at the Geneva-based WHO.

The medical breakthrough in the battle against leprosy, a much storied disease since Biblical times, evoking fear in the public imagination due to patients bearing visible signs of physical disfigurement and disability, came in 1981. That year, a WHO Study Group on Chemothrapy of leprosy prescribed the use of a multidrug therapy (MDT) as the standard treatment for the disease.

Three drugs “packaged together” that served as this new therapy was the WHO’s first landmark effort to control the spread of leprosy, which spreads through one-to-one contact and “respiratorially.”

“Between 1985 and the beginning of 2008, nearly 15 million persons affected by leprosy were diagnosed and cured with MDT, with very few relapses reported,” states the WHO in a background note distributed at this week’s regional meeting on neglected diseases.

The MDT’s success prompted the WHO to set another benchmark in 1991 – to eliminate leprosy as a public health problem by the end of 2000 by seeing the prevalence rate drop to less than one case per 10,000 people.

“This target has been achieved by all the countries where leprosy has been reported,” Noordeen said in an interview. “Early diagnosis and early MDT treatment has been a factor to prevent disability due to leprosy.”

“The WHO has been providing free MDT drugs to all leprosy endemic countries since 1995,” he added. “So governments do not need to spend on this; what they have to do is ensure good medical infrastructure to diagnose leprosy.”

On the strength of these drugs, which prevent disability, the global health body has set its sights on reducing by 35 percent cases of leprosy disability by 2015.

“(This) will spur the implementation of activities that will reduce delays in diagnosis and in starting treatment with multidrug therapy, which, in turn, is likely to have a positive impact on reducing the occurrence of new cases in the population,” states the WHO.

But one hurdle that still comes in the way of leprosy patients enjoying a full life is the stigma attached to the disease, public health experts from South Asia and South-east Asia confirmed. “Disability and deformity of people with leprosy is still the main cause of stigma,” said an Indian doctor at the conclusion of the two-day WHO meeting.

Indonesia reflects this reality where “stigma is very high,” admitted Widaningrum. “People with leprosy are still isolated from their families and their communities. Reducing such attitudes is a challenge.”