Former patients of Hansen’s disease are hoping their fight to restore the human rights they have long been deprived of will build public awareness and eventually lead to the creation of a society in which no one’s dignity is denied.
The former patients, plaintiffs in a legal battle with the government, were awarded damages Friday by a Kumamoto District Court for suffering caused by a national policy of isolation and sterilization. They want the public to learn a lesson from their plight and create a better future.
The first legislation to control Hansen’s disease was enacted in 1907 following strong recommendations the year before by Kensuke Mitsuda, then the nation’s top medical authority on the infection.
He warned that allowing the patients, with their “dangerous pathogen,” to roam free in society would not only threaten public health but “disgrace the honor of the state.” The law was named the Leprosy Prevention Law in 1931.
The bacterial infection causes no symptoms in most instances. But in some cases it causes skin irritation, fatigue and peripheral nerve impairment, sometimes including numbness. In very severe cases it can lead to deformity and loss of extremities such as fingers, ears and nose.
The invention of Promin and other effective medicines since 1943, however, has made the infection easy to cure, and all industrialized nations that could afford the expensive medication abandoned their segregation policies by the 1950s, according to experts.
Despite the medical advances, Japan enacted the new Leprosy Prevention Law in 1953, continuing forced isolation. This legislation was also based on strong advice by Mitsuda.
In addition, the doctor, who received the nation’s top two decorations for his work on Hansen’s disease — the Order of Culture in 1945 and the Grand Cordon of the Order in 1957 — recommended patients be sterilized.
Meanwhile, the conditions inside 15 sanitariums around Japan — 13 national and two private — were improved dramatically through the activities of patients beginning in the 1950s, and residents were allowed free contact with the outside world.
But the patients claim that the existence of the law promoted public fear and prejudices that are still deeply rooted in society.
With the enactment of the new law in 1953, the patients’ association of the 13 national sanitariums petitioned the then Health and Welfare Ministry to halt mandatory segregation.
Ministry officials, however, responded that even up-to-date medical science could not completely cure the disease and patients still needed to be isolated, according to a document on negotiations between the ministry and the patients.
The document says that in concluding the negotiations, a top ministry official told the patients that from the perspective of preventing the infection, it was regrettable they left their facilities to visit the Diet or the ministry.
Fujio Otani, 77, a former ministry official in charge of policies related to Hansen’s disease, recalls his impressions when he joined the ministry in 1959. All of his colleagues stuck to the traditional belief that the infection was incurable and the patients should be isolated.
“World medical circles and even some doctors in Japan said at the time that Hansen’s disease was not very contagious and the patients did not need to be isolated,” Otani said. “I informed my colleagues of this, but they just turned a deaf ear.
“After meeting this reaction, I gave up voicing opposition to the segregation policy in the ministry, where consensus and harmony meant everything,” said Otani, who as a medical doctor worked in the field of administration.
Otani, currently the president of the International University of Health and Welfare in Otawara, Tochigi Prefecture, said the tragedy would not have occurred if ministry officials had tried to take an objective approach and acquire new knowledge from abroad.
Instead of working to abolish the law, Otani redirected his energy to improving living conditions at the sanitariums and to easing regulations related to the segregation policy.
But Otani said that even now he regrets these efforts, reasoning that such stopgap measures might have helped the law to survive into the late 1990s.
During a hearing before the Kumamoto District Court in October 1999, Otani testified that his good intentions only prolonged the discrimination.
“Without restoring dignity and freedom, they would never be liberated,” he told the court. “The history of the patients illustrates the irresponsibility of government officials, including myself.”
After retiring from the ministry in 1983, Otani started to work to abolish the law from outside the government by leading a group of former patients. Their activities, however, received no support from the public, politicians or the media.
Otani charged that the hardships suffered by the former patients is a result of the extremely conformist nature of the Japanese people, who blindly follow majority opinions and existing social values, including prejudices.
“We must learn from their experiences. We must learn that we must fully respect the rights of minorities and the socially weak,” he said.
“Otherwise, we will make another mistake again, as seen in the recent HIV debacle involving hemophiliacs who received tainted blood coagulants.”
The Leprosy Prevention Law was finally abolished in 1996, based on doctors’ recommendations.
Lawyers representing the Hansen’s disease plaintiffs say public indifference to the plight of minorities allowed the enactment of the AIDS Prevention Law in 1988, which was designed to prevent the spread of the syndrome at the expense of the human rights of people with HIV or AIDS.
They say that failure to restore the dignity of people who had Hansen’s disease would make it highly likely Japan will make similar errors in the future.
Struggle for recognition
The following is a chronological list of events involving compensation suits lodged by former Hansen’s disease patients.
* March 1907: Japan’s isolation program for Hansen’s disease patients is introduced as part of a law designed to prevent the illness from spreading.
* November 1930: Japan’s first state-run sanitarium, Nagashima Aisei-en, opens in Oku, Okayama Prefecture.
* April 1931: The Leprosy Prevention Law goes into effect, with all patients subject to isolation regardless of the degree of their symptoms.
* May 1947: The Constitution takes effect.
* September 1948: The Eugenic Protection Law takes effect.
* August 1953: The revised Leprosy Prevention Law is enacted, retaining the isolation program.
* 1960: The World Health Organization submits a report urging outpatient treatment for those suffering from Hansen’s disease.
* April 1996: The Leprosy Prevention Law is abolished.
* July 1998: Thirteen Hansen’s disease patients at sanitariums in Kagoshima and Kumamoto prefectures file a compensation suit at the Kumamoto District Court, the first such legal case in Japan.
* March 1999: Twenty-one patients file a suit at the Tokyo District Court.
* January 2001: Hearings in the first four suits, involving plaintiffs from Kagoshima and Kumamoto prefectures, are concluded at the Kumamoto District Court.
* April 2001: A nonpartisan group of lawmakers is set up to promote the final resolution of issues involving Hansen’s disease patients. A nationwide plaintiffs’ organization is set up.
* May 2001: The first ruling concerning former patients is reached by the Kumamoto District Court.
In a time of both misinformation and too much information, quality journalism is more crucial than ever.
By subscribing, you can help us get the story right.