With the development of effective medicine to treat leprosy in the 1980s, the number of patients greatly declined in many endemic countries. Those of us working with WHO to eliminate leprosy began to sense that we were on the verge of a major breakthrough that would truly make a difference.
In many cases, those who showed signs of leprosy were abandoned by their families and forced to live in sanatoriums or colonies. We worked to ensure that this effective medicine reached them. However, on visits to such colonies, what I witnessed was that even those who were cured of the disease continued to live there. They had nowhere to go and their lives did not change much even after being cured.
They no longer had the disease that been the reason for their seclusion from society, but nothing had changed. In other words, once affected by the disease, they were forever stigmatized as “a former patient” and bore that label for the rest of their lives. And they continued to live in a leprosy colony as before.
Some of the colonies were located on remote areas on hills or barren land, and others on a narrow strip along the railway tracks. Boundaries sometimes marked these spaces and walls separated them from the outside world. But they were also surrounded by invisible walls that were even stronger. Even after being cured, as “former leprosy patients,” they had to live within these boundaries.
Witnessing this situation, I realized that I had been too optimistic about the problem of discrimination against leprosy and the stigma associated with it. I had simply assumed that if the disease could be cured, the problem of discrimination would resolve itself. But discrimination and stigma are not caused by bacteria. The root cause is in the minds of people.
In the course of its long history, discrimination against leprosy has become entrenched in customs and culture. A change in consciousness is not an easy task. In the case of leprosy, misunderstanding and fear arising from ignorance have amplified the discrimination. This fear has also been fostered by religion, and the legal system has played a role in codifying discrimination.
Until recent years and even today, laws and regulations in India, Thailand and Singapore have recognized leprosy as grounds for divorce, prohibiting the use of public transportation, discharge or denial of employment, disqualification from running in local elections, and restricting the right to receive an education.
In the state of Orissa, India, Dhirendra Pandua was disqualified from holding municipal office in 2003 on the grounds that he had once had leprosy. He contested the law in court, but in 2008, India’s Supreme Court ruled that the state law did not violate the constitution. This law was later amended in 2012.
In 2008, the organizing committee of the Beijing Olympic Games announced that in accordance with a 1989 regulation, they would not grant entry visas to foreign visitors with certain conditions including those suffering from leprosy. In communication with the committee, I stressed that leprosy was curable, only mildly infectious, effective medicines were available, and 95% of people have immunity to it. The ban was subsequently lifted.
Despite the fact that leprosy is now curable, discriminatory laws are still on the books, and they serve to justify discrimination and isolation in daily life. As in the case of the Beijing Olympic Games, it is important for politicians and government officials to have access to current knowledge of leprosy. This will promote the lifting of old laws, regulations, and rules. Changing these rules and systems is a first step in changing public consciousness.