Leprosy: The Last taboo

By Bernard Thompson

Published in The Big Issue in Scotland, Issue 335

Since biblical times, it has been treated as a taboo, an illness which left its victims shunned by society. But following a landmark court ruling, the Japanese government has agreed to compensate hundreds of victims of Hansen’s Disease - better known as Leprosy - after years of inhumane treatment at the hands of the country's healthcare services.

Tokihiro Suzuki was only 12 when he, his father and two sisters were first diagnosed with Leprosy, in 1941. After initially going into hiding, the family were forced into a state-run sanatorium "All I wanted was to be recognised as a human being, he says, now aged 75.

With relatively mild symptoms, Suzuki was forced to trek 10km, daily, retrieving two to three bags of coal. Before long, he was paralysed and all his fingers and toes were removed. Suzuki recalls that sanatorium staff refused to turn on its heating, regardless of the cold, but always carefully maintained its crematorium and cemetery. To “inmates” this appeared to be symbolic of authorities caring for them more in death than in life.

Suzuki's misery was such that he tried to emulate his younger sister, who took her own life in desperation at her plight. However, despite several suicide attempts, he seemed fated to live. Now, although almost blind, he has fount peace through painting with a brush fixed to the stump of his arm, saying that "painting saved my life."

In 1953, Japan passed the Leprosy Prevention Law obliging health officials to keep patients in strict quarantine, something that had been unofficial public policy for years. However, despite the fact that it has been known that Hansen’s Disease is completely curable, since the 1960’s, patients continued to be segregated and the law was only revoked five years ago.

During the incarceration, treatment was meted out without regard for moral or human rights. Forced sterilisation and abortions were among the worst experiences but it has now been revealed that there were other equally disturbing practices. According to the findings of leading Japanese health expert, Masashi Egawa, at least 30 percent of Leprosy patients in government centres have been infected with the Hepatitis C virus, which often develops into liver cancer.

Egawa attributes this to unsafe practices such as the reuse of needles. He insists that the repeated use of hypodermic needles and inadequately sterilized scalpels led to the infection, adding that, as patients received treatment in isolation, he can find no other explanation for the extraordinarily high infection rate.

Former patients, like Mamoru Kunimoto, who was forced into the Tokyo facility support Egawa's theory. He recently testified that, where he was a patient, hundreds of sufferers could be injected with a single hypodermic needle. The 74-year-old witnessed several fellow patients dying from liver cancer, resulting from Hepatitis C.

None of them were aware of the true cause of their sickness. Ironically, staff at the centres, who were at virtually no risk, received enhanced payments, allegedly as danger money.

The government now accepts that such treatment violated patients' human rights and, in a historic motion by the Diet (Japan’s lower parliamentary house), it was unanimously agreed to offer a full apology.

This followed a similar statement of regret in a document issued by the Prime Minister, Junichiro Koizumi, in which he acknowledged "a major limitation and restriction to many patients' human rights, and that there has been extremely severe prejudice and discrimination against such people among the public."

However, neither of these official statements were issued before a court decision ordering the state to pay 127 people nearly two billion yen (approximately £13m) in compensation. The May 11 ruling said the Diet had taken no moves to dissolve the Leprosy Prevention Law, even after it became obvious in the 1960s that the disease could be completely cured.

This was despite the fact that, contrary to popular belief, the disease is not highly contagious and around 95% of people are immune to infection. Originally, the government had announced plans to appeal the ruling, on legal grounds, but the victims’ response caused them to rethink.

To date, 923 former patients filed new lawsuits demanding 115 million yen each in compensation from the state, bringing the total number of plaintiffs to 1,700. That was followed by more than 100 former patients and their lawyers laid siege to the Prime Minister's official residence, insistent on meeting with an initially reluctant, Koizumi.

Under sever pressure, Koizumi agreed to personally hear the demands of patients that the government accept the ruling and he conceded that he had to consider their feelings. During the meeting, Koizumi poignantly shook hands with each patient, including poet, Yuji Kodama, who responded simply, "My heart is full of joy."

Sadly, according to the leading British Leprosy charity, LEPRA, ignorance and prejudice are common wherever the disease is found. LEPRA’s Fundraising Mangaer, Vanessa Longley, explains: “The stigma surrounding Leprosy is still very strong in most countries and is probably far harder to treat than the disease itself.

“In predominantly Christian countries, images and beliefs about the disease may stem from The Old Testament which described Leprosy as a plague or a punishment which could be inflicted upon others.”

For this reason, use of the term "leper" is discouraged. "A major part of Lepra's work is to provide health education to break down the myths surrounding Leprosy. The term 'leper' reinforces stigma because it suggests that people have permanently changed and can be defined purely by their disease."

For organisations like Lepra, she says, changing attitudes are the key: “Now that we have an effective cure for the disease, our major challenge is reaching and treating people affected by Leprosy.

"People are often still reluctant to come forward for treatment if they suspect they have the disease because of the stigma. We still come across cases of people who have lost their family and home, or people who have been hurt and abused, simply because they have an illness.

Longley adds that the fear of such hostility can have tragic consequences, “If the disease is not treated early, disabilities and deformities can occur, and our second major challenge is to provide ongoing care for people who are living with Leprosy-related disabilities. Through health education campaigns we hope to encourage more people to come forward for treatment early, before disabilities set in.”

With more than two million people affected by the disease and another four million suffering Leprosy-induced disabilities, the scale of the problem is immense.

The World Health Organisation (WHO) still lists Leprosy as one of the major health problems of developing countries such as India, Brazil, and numerous African nations. It is estimated that one new case is diagnosed every 40 seconds.

Many people will be surprised that Leprosy could affect a developed country like Japan but the disease was only eradicated from Scandinavia in the 20th century.

Closer to home, there are currently 300 people in Britain who have been affected by Leprosy, all of whom were infected whilst travelling or living abroad.

Despite the global figures, Vanessa Longley is optimistic. She adds: “We are winning the battle against Leprosy. Since 1985, over 11 million people have been cured of the disease.

"About 800,000 new cases were still found last year, but every case we find we can cure."

So could we see a world free from Leprosy? Longley believes we will: "Right now we are at a turning point. If we can just reach out and treat more people we will be able to break transmission of the disease, and eventually eliminate the problem all together.

"The World Health Organisation has set a target date of 2005 to eliminate Leprosy as a public health problem. It will take a little longer to eradicate the disease completely - but we will get there.