Bill awards compensation to marginalized leprosy patients

After almost three years of lobbying, a bill addressing the plight of the nation's leprosy sufferers passed third reading in the Legislative Yuan late last month. Patients and activists, however, have expressed mixed feelings about the legislation.

The Statute on the Human Rights of and Compensation for Hansen's Disease Patients was written into law July 18. The bill provides recompense for sufferers of leprosy, also known as Hansen's disease, who were quarantined or otherwise poorly treated by previous administrations since 1945. Under the law, the government will make a public apology, seek to raise awareness of the disease, compensate mistreated sufferers financially and provide life-long care to residents of the country's first and only leprosy facility-- the Taipei County-based Losheng Sanatorium.

Legal experts applauded the passage of the bill, saying it represented a triumph for human rights in Taiwan. However, nongovernmental organizations that have campaigned for the preservation of the sanatorium expressed disappointment that certain articles had been either toned down or written into the appendix to the statute as resolutions. While the original draft of the act had 25 articles, the final version has 13.

The leprosarium has been at the center of a legal battle since at least 2002, when its residents became aware that the land on which it was built had been sold to the Taipei Rapid Transit Corp. in 1995. The TRTC's plan called for the facility to be demolished to make way for the extension of the Taipei Mass Rapid Transit System, with patients being relocated to the Huilung Community Hospital. However, some of the leprosy sufferers refused to leave the leprosarium they had come to call home and were soon joined by activists in lobbying the government for the preservation of the facility.

By way of a compromise, Article Eight of the new law states that the Cabinet-level Council for Cultural Affairs should draw up a proposal for the Losheng compound to be transformed into a memorial park that will be used to educate the public on health issues. The appended resolution requires the government to form a human-rights committee to oversee the project, one-third of whose members must be sanatorium residents or their representatives. The buildings must also be repaired and the history of the facility and the disease in Taiwan documented.

But some activists argued that the legislation is too ambiguous. "The law does not state clearly that the community in which patients have spent their whole lives should be preserved," Lai Tse-chun said July 29. Lai is executive secretary of IDEA Taiwan--a local affiliate of the International Association for Integration, Dignity and Economic Advancement, which supports people with leprosy around the world.

The Save Losheng Association stated July 19 that its efforts would continue, with some patients planning to donate a percentage of their compensation money to the cause. "We will continue to fight for the preservation of Losheng," Lee Tien-pei, 74-year-old head of the association, said at a news conference. "Having passed the law on sufferers of Hansen's disease, preserving the sanatorium is the government's obligation," stressed Lee, himself a Losheng resident.

Others said that the legislation was at least a step in the right direction. "It is something to celebrate that the government has acknowledged the unfairness of past policies on leprosy sufferers," said Cheng Wun-long, a lawyer with the Legal Aid Foundation, which provides legal services free of charge.

The leprosarium was built by the Japanese colonial administration in Taiwan (1895-1945) in 1930 to quarantine leprosy sufferers on the island. The policy was continued by the Kuomintang administration until 1962, when segregation was abandoned. Yet due to ignorance about the disease, discrimination against its sufferers persisted into the new millennium. This undermined the government's strategy since 1981 of encouraging patients to undergo multidrug therapy and lead normal lives.

To address these injustices, the law states that people who were forced to undergo treatment in the Losheng leprosarium between Oct. 25, 1945 and March 31, 1962 will receive approximately US$4,000 for each year they were quarantined, while those who were at the facility between April 1, 1962 and Dec. 31, 1982 are eligible for US$2,620 per year. Leprosy sufferers who fall outside these two groups may receive a one-time payment of US$6,560.

Lobbying for the passage of the act on the sufferers of Hansen's disease began in November 2005, the month after the Tokyo District Court ruled that the Japanese government must compensate leprosy patients who were treated inhumanely under colonial rule, including those at Losheng Sanatorium.

The Taiwanese bill was first submitted to the Legislature in December 2005. However, it was stalled by legislators who favored the demolition of the leprosarium to facilitate the expansion of the MRT.

Over the past three years, Losheng residents and their supporters have appealed to various government agencies, and staged protests that have captured the media's attention. They have been rewarded for their efforts with the passage of a law protecting leprosy patients' rights, but for some activists this is just the beginning.

Having consulted with Yohai Sasakawa, chairman of the Nippon Foundation and the World Health Organization's special envoy for the elimination of leprosy, at the International Leprosy Congress in India in January, Lai said IDEA Taiwan would seek to have the island's only leprosarium designated a world heritage site. "Taiwan's Losheng Sanatorium definitely has the potential to be listed as a UNESCO World Heritage Site if the government joins us in working toward this goal," she argued.

Lai said Yukio Nishimura, a University of Tokyo professor and former chairman of the International Council on Monuments and Sites, had also affirmed the leprosarium's importance after making several visits to the facility. Nishimura had pointed out that the Losheng story represented a rare case in which leprosy patients stood up for their rights, Lai related. "How the government deals with Losheng and its residents is an important index of how it values culture and human rights," she concluded.

Write to June Tsai at june@mail.gio.gov.tw