Japanese with Hansen's Disease Welcome Closure (July.2001)

Hansen's disease is a chronic and infectious disease caused by a leprous bacillus. In the past, when it was called "leprosy," the patients and their families suffered from groundless prejudice and discrimination, as it had long been considered to be incurable and hereditary. In 1873, however, Dr. Hansen of Norway discovered a leprous bacillus and proved that it is a simple infectious disease, and the ailment was renamed Hansen's disease.
In 1943 effective medicines such as sulfas were found and it became curable. Despite this fact, patients in Japan continued to be isolated from society and suffer from discrimination.

Lawsuits filed against government
In July 1998, 13 patients filed a lawsuit against the state at a district court in Kumamoto, while 12 did the same in Tokyo in March 1999, and 11 in Okayama in September the same year.
They sought monetary compensation for damages caused by the Leprosy Prevention Law that took effect in 1907 and was revised in 1953.
The law, which was abolished in April 1996, required that people with the condition be isolated. After a long painful struggle, on May 11, 2001, the plaintiffs won the suit at the Kumamoto District Court. On May 21, 923 former patients filed additional suits at the above three district courts. As a result, the total number of the plaintiffs increased to 1702. On May 23, the government abandoned plans to appeal the ruling, effectively recognizing the justice of the plaintiffs' cause.

Visit to national sanitariums
The following is a translation of an article by Mr. Shinsei Toyonaga, staff member of the Obama City Council of Social Welfare, which may be found on its home page.

What I Learned from Former Hansen's Disease Patients - A Society Where We can Live Together with Respect for Human Rights and No Discrimination

Everyone's life should be respected.
Several years ago, I had a chance to visit two national sanitariums for Hansen's disease patients, Oku-Komyo-En and Nagashimaaiseien, on a small remote island in the Seto Inland Sea.
Some patients from Fukui Prefecture were staying there. I had a talk with them in Oku-Komyo-En and heard that they had been struggling against the discrimination for half a century.

Here are some of the things they told me:
"When I was sent to a sanitarium, an official in charge was marking my footprints as I walked on a platform at a station. I suppose it was to prevent others from walking where I had. I was put on a train in what was no better than a freight car, and was never treated as a human being."
"I would like people to learn about this disease and understand us more. The patients under treatment at present do not carry any bacilli, so there is no possibility of infection. However, people still have prejudice against the disease, and I cannot even go back to my hometown."
"Please think about our future. What shall we do 20 or 30 years from now? Although this remote island is connected with the mainland by a new bridge, I will not be able to return home even after my death. I have no choice but to have my ashes interred here."

Parallels to treatment of people with AIDS?
"I'm afraid that people with AIDS will suffer from similar problems in future."
After this visit, I came to be interested in Hansen's disease.
The disease is infectious, but the possibility of infection is extremely low. Soon after the end of war, an effective drug called Promin was developed, and now it is difficult even to find a bacillus.
Nevertheless, the Japanese government maintained its policy of forcing the patients into isolation and sterilizing them in accordance with the Leprosy Prevention Law, which caused even more discrimination. Under these policies, patients throughout the country were sent to sanitariums, separated from their families, and suffered from prejudice and segregation. What a difference from patients in Europe and the USA, who had already been receiving outpatient treatment at that time! There arose a movement against this discriminatory law, and at last the Leprosy Prevention Law was abolished on April 1, 1996 by the Diet.

Family reunion project
In Fukui Prefecture, people became more concerned about Hansen's disease from the 1970s. Granting the former patients' wish to go back home, "Association Encouraging Ex-Hansen's Disease Patients to Return Home" (headed by Takeo Kitamine) carried out a program by which patients could visit their hometowns.
The reunion of the separated families was very touching. Fukui Nishi Betsu In, a temple, cooperated by offering rooms, as it was rather difficult to find places to stay. These efforts by private organizations bore fruit, and later a return program sponsored by the prefecture was also realized. Since 1995 Fukui Prefecture has been carrying out the project thanks to the efforts of Mr. Kazuo Kawahara of Health Promotion Division, Department of Welfare and Environment.

Lessons learned
Prejudice and discrimination are often caused by ignorance. These still exist not only against people with this disease but also against people with mental disabilities, AIDS patients and so on.
Recently HIV lawsuits have been filed all over the country, and the responsibilities of the state and pharmaceutical companies are being discussed. The faulty policies of the state must not be forgiven or repeated. Human rights should be more deeply respected. We need to make a society where we can accept each person's disability and live together without any discrimination.