Issues Related to Hansen's Disease

Issues Related to Hansen's Disease

Issues related to Hansen's disease

The Hansen's disease problem is a human rights issue where the human rights of leprosy patients, former patients, and their families have been violated and the individuals have been subject to extreme prejudice and discrimination due to the wrong measures taken by the government regarding Hansen's disease since modern times.

Start of isolation policy

Since modern times, the government's approach to Hansen's disease has been based on the isolation of patients. In 1907, Law No. 11 of 1907 (commonly known as "(Old) Leprosy Prevention Law") was enacted, which stipulated that homeless patients with no means of medical treatment (vagrant patients) should be isolated in sanatoria. This was due to the fact that many people affected by Hansen's disease were living outdoors and begging, which was considered to be a "national disgrace."

The (Old) Leprosy Prevention Law was amended in 1931, which allowed forcible isolation of all patients regardless of their will. "Forced isolation" started from here.

"(Old) Leprosy Prevention Law" The original signed document, 1907

No Leprosy Patients in Our Prefecture Movement (Muraiken Undo) and its damage

The "No Leprosy Patients in Our Prefecture Movement" was implemented to promote the isolation of patients under the policy of forced isolation. This was a joint public-private effort to identify and isolate patients in each prefecture to achieve a patient-free prefecture. Confidential tip-offs were encouraged, and government officials carried out coercive measures to facilitate the detection of patients.

One of the messages emphasized by the No Leprosy Patients in Our Prefecture Movement was that Hansen's disease was a "terrible communicable disease." The movement overemphasized the dangers of Hansen's disease, stirred up fear, and instilled prejudice against the disease in the public. The houses where Hansen's disease patients were residing was disinfected to the extent of becoming white, which not only increased fear of the disease among people, but also gave a clear indication to the neighbors that there was a patient in that house. As a result, homes with patients suffering from the disease were subject to discrimination and exclusion, leading to divorce, unemployment, family separation, family suicides, and suicides.

Forced detention at Honmyoji Temple (Kumamoto), 1940

Harsh environment of the sanatorium

The patients were treated like prisoners in the sanatoriums, medical care and food were inadequate, and the patients were forced to work and or locked in confinement rooms. Sterilization and abortions were almost forcibly performed on the patients to prevent the birth of children. The leprosy sanatoriums were not facilities to cure patients of their disease and return them to society, but to die in the sanatoriums under the same treatment as prisoners.

Patients working to create a path through the sanatorium at Zensei Hospital (now Tama Zenshoen)

Introduction of Promin and continuation of forced isolation

A drug called Promin was developed in the U.S. just after the war, the drug was also used in Japan and Hansen's disease became a curable disease. In response, the inmates of the sanatoria demanded that the government should abolish forced isolation, however in 1953, a new law called the Leprosy Prevention Law was enacted and forced isolation continued.

The introduction of Promin and subsequent establishment of chemotherapy saw an accelerated abolition of the isolation policy in other countries, however in Japan, forced isolation continued until the Leprosy Prevention Law was abolished in 1996. Forced isolation continued for half a century even after Hansen's disease could be cured. During that time, there was no provision in the Leprosy Prevention Law to leave the sanatorium, so many people were unable to return to their hometowns or families even after being cured and died in the sanatorium.

Promin

Hansen's Disease Lawsuit Claiming Compensation from the Government

In 1998, former leprosy patients filed a lawsuit for compensation from the government, claiming that the Leprosy Prevention Law was a violation of Japan's constitution, and the Kumamoto District Court passed a ruling in favor of the plaintiffs on May 11, 2001. The government gave up on the appeal and the ruling was finalized. A major feature of the Hansen's disease problem is the judicial ruling "human rights violations by the state" has been determined.

The Act on the Promotion of Resolution of Issues Related to Hansen's Disease was enacted in 2008 (the law took effect in 2009 and is commonly known as the Basic Law on Issues Related to Hansen's Disease). The law in its preamble points out the necessity to make efforts "to ensure that people affected by Hansen's disease can lead a good and peaceful life without being isolated from the society" and "to create a society free of prejudice and discrimination." It also states that the issues related to Hansen's disease should be resolved through "measures to promote the welfare of Hansen's disease patients and restore their honor."

Lawsuit by Former Leprosy Patients' Families

It is not only the leprosy patients and former patients that have been affected by the government's misguided Hansen's disease measures and society's prejudice and discrimination, but also their families. In 2016, a group of people who shared this experience and having a family member affected by the Hansen's disease filed a lawsuit in Japan. On June 28, 2019, the Kumamoto District Court passed a ruling that the government was responsible for the discrimination suffered by the families, and the ruling was finalized without appeal by the government.

The issues related to Hansen's disease are not yet over

What became clear again through the Lawsuit by Former Leprosy Patients' Families was the reality that the issues related to Hansen's disease are not yet over. Most plaintiffs did not disclose their real names. Most people lead their lives hiding the fact that they have a patient in their family due to the fear of discrimination. The existence of ossuaries is one of the clearest indications of the continuing discrimination against the Hansen's disease. The ossuary is where the unclaimed remains of the inmates who died in the sanatorium are stored. The families refuse to take back the remains of the inmates who died fearing discrimination, and the inmates are unable to return to their families even after their deaths and are laid to rest in the ossuary. The scars of the forced isolation by the government have not yet healed.

Ossuary at Tama Zenshoen