Pending legislation to pay compensation to family members of former Hansen’s disease patients, an outline of which was compiled by a group of lawmakers across party lines, finally paves the way for relief to relatives left behind after the government extended an apology and damages to the former patients themselves in the early 2000s. To make sure that the relief will help all of the former patients’ relatives who have long suffered discrimination, the financial compensation must be accompanied by greater efforts to eliminate lingering prejudice over the disease.

False perceptions of Hansen’s disease were long widespread in many countries and regions. In modern Japan, segregation of Hansen’s disease patients started without much medical basis. Under the Leprosy Prevention Law of 1931, the government pushed for forceful segregation of patients at state-run sanitariums — which in turn magnified social prejudice toward the disease and fueled discrimination against the patients and their family members.

The segregation policy was maintained even after a medical cure for the disease was established and isolation of the patients was no longer warranted. The law was eventually scrapped in 1996. Meanwhile, the mistaken perception of the disease as a horrible, highly contagious malady — which it was not — subjected relatives of the patients to severe discrimination in education, employment opportunities and marriage.

After the Kumamoto District Court, in its 2001 decision on a lawsuit filed by former patients, ruled that the segregation policy was unconstitutional and ordered the government to pay damages to the plaintiffs, the government accepted its responsibility and apologized to the former patients for their forced segregation, and a scheme was established to pay them ¥8 million to ¥14 million each for their suffering. However, the government long refused to accept blame for the suffering of the former patients’ relatives — until it decided not to appeal a ruling last June by the same court that ordered state compensation for the former patients’ kin.

According to the outline of the legislation, which is set to be submitted to the Diet during the current session, a lump sum payment of ¥1.8 million will be provided to each of the parents, children or spouses of the former patients as well as to spouses of the children who lived with the family, while the siblings of former patients and other relatives will be offered ¥1.3 million each. The legislation will also extend the “deep apology” of the government and the Diet for their inaction to remove the pain and suffering of the former patients’ kin.

The June ruling by the Kumamoto District Court ordered the state to pay damages ranging from ¥300,000 to ¥1.3 million to each of the 541 plaintiffs who took part in the lawsuit. The government has since said that compensation will be provided to victims irrespective of their participation in the suit.

People who qualify for the compensation will be screened by a government panel on the basis of the former patients’ medical treatment records and family registry, and must apply for the payment within five years. The government estimates that 20,000 to 30,000 people will qualify.

There is concern, however, that many relatives of the former patients may not come forward out of fear of the lingering prejudice and discrimination against the disease and former patients. Such concerns are backed by the fact that most of the roughly 560 relatives of former patients who took part in the lawsuits did so anonymously, with only several plaintiffs identifying themselves in the legal fight.

Many relatives of former Hansen’s disease patients reportedly hid their family connections out of fear of social persecution. People familiar with the issue voice concern that the relatives may not apply for the compensation to keep their ties hidden. What’s needed are greater efforts to enlighten the public and eliminate the false perceptions about the disease to ensure that those people can come forward without fear. The government must come up with a scheme to ensure that the relief measures will broadly cover the victims of the prejudice and discrimination related to Hansen’s disease.

The legislation to compensate the kin of former patients alone will not fix society’s distorted view of the disease. Prime Minister Shinzo Abe, when he announced the government’s decision not to contest the court decision, pledged efforts to root out the deep-seated discrimination and prejudice over the disease — which the government admits has been insufficient to achieve the goal. Only when a correct understanding of the disease has been established through various efforts will the dignity and human rights of the former Hansen’s disease patients and their relatives be fully restored.

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