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Leprosy Elimination Activities in Malaysia [2011/05/21]

Jerejak Island, Leprosy Island in Malaysia

Published in the [Shinsei] Tohoku Shinsei En
March 20, 2011

Leprosy Elimination Activities in Malaysia

WHO Goodwill Ambassador for Leprosy Elimination
Yohei Sasakawa

Leprosy in Malaysia

November, 2010. I visited Malaysia, located in Southeast Asia just north of the Equator. The total landmass of Malaysia is 330,000 (90% of Japan) and a population of 28 million people. It is a young federal constitutional monarchy having gained independence in 1963.The population density is one-fourth of that of Japan and much room for many rainforests. Ethnic groups are Malay, Chinese, Indians and others, religions are Sunni Islam, Christianity, Buddhism and Hinduism, and the languages used are Malay, English and Chinese. It is truly a country of diversity.

Malaysia achieved elimination of leprosy according to the WHO criteria of less than 1 patient for 10,000 population, in 1994. But there is a long history to tell until elimination was achieved. According to records, the oldest of the leprosy colonies is on the Island of Seribun, offshore of Malacca, established in 1850 by 21 leprosy patients. Later in 1871, leprosy centers were built on Jerejek Island (Pulau Jerejak) at the southeastern tip of Penang. In 1874 the enactment draconian law of isolation of leprosy patients led to the establishment of leprosy centers in each state. There were 100 new patients brought in to these centers every year but many of the patients were transferred to Jerejek Island and there were only about 20 patients who remained in isolation at these leprosy centers.

With the Leprosy Enactment Act of 1926, all leprosy patients in the Malay Peninsula were transferred to Sungai Buloh (Valley of Hope), 25 kilometers from Kuala Lumpur under the British colonial rule. As a result a leprosy hospital was opened in Sungai Buloh in 1930.

World War II impacted greatly on the treatment of leprosy. Because of the war, the number of leprosy hospitals declined and most patients were returned home. Yet there were some patients who had to stay on at the hospital and they had to survive on tapioca and snails to keep off starvation. Mortality rate went as high as 30% and according to records there remained 640 patients at Sungai Buloh and 300 at Jarejak Island. Leprosy Control Program starts six years after independence, in 1969. Sungai Buloh was then designated as the Leprosy Control Center of Malaysia once more and all other leprosy facilities were closed.

November 20. I visited the island of Penang, an island that has prospered for a long time as a commercial city, to attend a conference of Asia Fellowship, a Nippon Foundation scholarship r project. Penang is a small island in the western part of Malay Peninsula, 24kilometers north to south and 15 kilometers east to west. Right next to Penang is Jerejak Island. It is said that Captain Francis Light (1740-1794) landed there in 1786 before arriving at Penang.
Jerejak Island which is only 362 hectares in total area was the island where leprosy patients were taken to live in isolation. Leprosy increased rapidly as immigrant workers from China and India came to Penang and the Straits Settlements established forced isolation facility, in 1871, extended it in 1880 as Leprosy Center until its closure in 1969.

Jerejak Island functioned as a quarantine station from 1875 and a hospital for tuberculosis patients was also built there. However with the start of the Leprosy Control Program in 1969 leprosy patients were all transferred to Sungai Buloh. At the same period the tuberculosis hospital and quarantine station were closed and a prison was built on the site. Until the prison was closed n 1993, Jerejak Island was referred to as Alcatraz of Malaysia. Today the island has been developed into a resort and from what I hear many tourists are coming to the hotels there.

As with Sungai Buloh, Jerejak Island plays a very important role in the history of leprosy in Malaysia, as a place of isolation for leprosy affected people and their family members, yet that is not widely known. Even my guide, 29 year-old Faisal Omar who went to a local school until he graduated from high school told me that he was never taught that the island had such history. It was only two years ago that he first learned about it from an Indian visitor to the island who had once worked at the leprosarium, and whom he accompanied as a guide.

However in 1933, Dr. Fumio Hayashi, who was a medical officer at Nagashima Aisei-en visited the island from Japan and has written a valuable record published in the [Leprosy Travels around the World] published in 1942. According to the record, there were 765 patients on Jerejak Island at the time, among them 601 were Chinese and 128 Indians. In another words, 78% of the patients were immigrants from China. There were however also recorded that there were 1200 patients at Sungai Buloh and 80% of the patients were Chinese. Jerejak Island that Dr. Hayashi visited was a quarantine station with a capacity to take 4000 people and it occupied half the island, and the other half was occupied by the leprosy hospital. This leprosarium was also divided into 4 sections according to the severity of the illness and ethnic groups. The only treatment was with chaumoogra oil and it is written in the record that the patients ate the fruit of the chaumoogra tree that were planted on the premise.

On the morning of November 20, we rented a boat and went to the island. It is just 10 minutes from the Penang wharf. The hospital was on the side of the island that could not be seen directly from Penang, and arriving there I found along the coastline in the deep grass of the rainforest, traces of the old wharf and the office building of the leprosy hospital, now dilapidated, and a hut used by the guards but nothing else of the traces of the past were to be found. We were told that there were seen remains of the common kitchen for the patients and the housings for the hospital staff a while ago, but today, there is nothing left of the hospital or of the prison. Even the people of Penang say that they do not know much. The history of Jerjak Island had been obliterated..

On November 22, we visited Sungai Buloh which is about 1 hour by car from Kuala Lumpur. Sungai means river and Buloh bamboo or bamboo grass. (My name Sasakawa also has the following meaning. Sasa means bamboo grass and kawa means river, in Japanese) Indeed we were visiting the Sasakawa Village. It has been 8 years since I last visited Sungai Buloh. In 2002, the whole premise was a tranquil place with many shops selling plants and flowers. But a highway was built in 2006 dividing Sungai Buloh and a new hospital was opened also in the same year. I was very surprised to see how the whole area had changed.

The leprosy affected people and their family members of Sungai Buloh are self-supporting and have set up a contained community with their own school (opened in 1952 and closed in 1975), hospital, movie theater, fire station, and a self-government, as well as a training center for learning poultry raising and carpentry. Most of the residents are over the age of 60 and are handicapped but those who are able to work make their living mainly by cultivating plants and flowers. Today there are 232 residents and of these residents 113 (62 men and 51 women) live in the 409 chalets on the premise. 119 people (66 men 53 women) were hospitalized for diarrhea, hypertension or other illness.
I was able to meet and talk with 5 men representing the residents. The government has ordered the leprosy affected residents to move out of Sungai Buloh, in exchange of another piece of land and housing, as there is a plan to extend the campus of the nearby university.

“The eastern side of Sungai Buloh is already destroyed. At least we want the rest of the premise to be preserved by all means.”

“We are handicapped people and very few have families. Most of us live alone. The government has not done much for us. I wish that we are at least allowed to continue our peaceful life. We want to be left alone.”

These are their strong wishes.

I talked with the officer from the Ministry of Health later who told me that there were 2000 people living there at one time, but today that number has reduced to 200, only 10% of the original number. The land that will be re-developed will not be just to expand the university campus but there will be built a health center which will contribute to the promotion of health of the local community

I gathered by talking to the different people that there resides a very difficult question here. There is a clash of interest that surrounds this site. On the one hand, the significance of preserving this location as a heritage of historical value and the respect for the wishes of the residents to continue to live in the place that has been their home for so long, and on the other hand, developping the site to contribute to the welfare of the local community.

In conclusion:
The history of leprosy is the history of centuries of unjust discrimination and violation of human rights of people affected by leprosy and their family members. Patients were considered as people to be excluded and had no choice but to live isolated from society.

This history of discrimination is not just a history of the past. It is also the history of our own times. As an example of one of the offenses committed by mankind it is necessary to make every effort to pass down this history from generation to generation. The lives of the people affected by leprosy and their family members have been nothing but years of agony, and the memory of the life of those that fought bravely against stigma and isolation must be preserved. It can be rightly said that the legacy of the history of leprosy has just as much value as the UNESCO World Heritage in that it is a legend that must be preserved by mankind. I would like to call to the attention of all relevant people the importance of preservation of the history of leprosy and the its historical buildings.
Posted by Y.Sasakawa at 09:00 | Leprosy | URL | comment(0)