A/HRC/44/46/Add.1 five sanatoriums to be set up throughout the country. 5 The leprosy prevention law of 1931 extended the State’s control over all persons affected by Hansen’s disease, not only those who were homeless, providing for active case detection followed by institutionalization. At that time, public campaigns were promoted by local governments with the support of volunteers, aimed at finding and segregating affected individuals, which boosted stigmatization at the community level. The consequences of that policy can still be felt to this day.6 1931 was also the year in which the first national sanatorium was inaugurated and the already existing sanatoriums were nationalized. As a consequence, as of that year, the number of individuals forcibly interned in the sanatoriums grew exponentially. 7 15. The National Hansen’s Disease Sanatorium Residents’ Association, Zen Ryo Kyo, was established in 1951 to unite the voices of those who had been institutionalized in the 13 sanatoriums, following several cases of death and arbitrary punishment of some inmates. In 1916, the Government had given sanatorium directors the authority to arrest and punish residents. The directors had decided to build a special facility to that end, and in 1938, Jukambo prison had been installed in Kuryu Rakusen-en sanatorium. Records show that many prisoners died there as a result of the harsh conditions. Inmates of the sanatoriums also decided to organize themselves into an association in order to pursue their struggle to have access to the new sulfone drug to treat the disease. Thereafter, based on evidence of the curability of the disease, the members of Zen Ryo Kyo demanded the abolishment of mandatory confinement, compensation for their work inside the sanatoriums, an increase in the number of health-care staff, improvement of the health conditions, the use of the term “Hansen’s disease”, provision for the livelihoods of inmates’ families, regulation of punishment in accordance with penal law, and an end to the discriminatory practice of holding special trials outside standard courtrooms. 8 16. Despite their efforts, the leprosy prevention law was renewed in 1953, reinforcing the isolation policy and giving sanatorium directors more powers. Sterilization became part of the package with the adoption of the eugenics protection law in 1948, allowing doctors to sterilize individuals with a broad range of mental or physical impairments, those with hereditary diseases and those with Hansen’s disease. A government guideline from 1953 approved the use of anaesthetics and even deceptive strategies to force sterilizations on unwilling recipients. During her visit, the Special Rapporteur heard reports of persons affected by Hansen’s disease who, while living outside the sanatoriums in the 1990s, were advised by medical doctors to undergo sterilization and not to have children. 17. The Act to abolish the leprosy prevention law was not approved until 1996. It provided not only for that law to be abolished, but also established the Government’s responsibility for guaranteeing medical and social services for residents of sanatoriums, and provided that persons affected by Hansen’s disease had the freedom to choose whether to leave, remain in or return to sanatoriums. Also in 1996, the eugenics protection law was revised, becoming the maternal protection law, eliminating the discriminatory clauses, including the provision for forced sterilization. The preamble of the Infectious Diseases Prevention Act of 1998 establishes the importance of acknowledging the fact that discrimination and prejudice against persons affected by Hansen’s disease had been widespread and society should learn from those past experiences. 18. After 1996, persons affected by Hansen’s disease came to the view that putting an end to segregation was not sufficient to remedy the harm they had suffered and they started organizing and working with legal experts to access justice. In 1998, a group of persons affected by Hansen’s disease went to court demanding an apology and reparation from the State for the discrimination and violations they had suffered as a result of the implementation of the excessively protracted official policy of compulsory segregation. The 5 6 7 8 Shuichi Mori and Norihisa Ishii, “A study on the entering and out-going trends at Japan’s national Hansen’s disease sanatoriums”, Japanese Journal of Leprosy, vol. 86, No. 1 (2017). Makiko Kondo and others, “Bioethics and the experiences of Hansen’s disease survivors”, in Bioethics: medical, ethical and legal perspectives, Peter A. Clark, ed. (InTech, Rijeka, Croatia, 2017). Hajime Sato and Janet E. Frantz, “Termination of the leprosy isolation policy in the US and Japan: science, policy changes, and the garbage can model”, BMC International Health and Human Rights, vol. 5, art. No. 3 (2005); and Mori and Ishii, “A study on the entering and out-going trends at Japan’s national Hansen’s disease sanatoriums”. In February 2019, Kumamoto District Court declared such trials unconstitutional. 5