Discrimination Even in a Small Village of 23 Pygmies

When resolving issues that concern leprosy, both medical and social, it is necessary to adapt the approach to the particular country and region. In this way, advocacy organizations can best respond to local conditions and needs when delivering medicines and carrying out other activities.

Indonesia reports the third highest number of annual new cases of leprosy after India and Brazil. Although the WHO elimination target has been achieved at the national level, there are still 12 states that have not yet done so. And health agencies are now making efforts to ensure early detection and treatment.

In 2007, PerMaTa (Independent Association of Leprosy Indonesia), a network of persons affected by leprosy, was organized in Indonesia, and now with 29 branches in 4 states, it is becoming highly successful in making their voices heard. PerMaTa addresses the strong prejudice and discrimination against leprosy that continues to exist, and endeavors to recover and maintain the dignity of all those affected by leprosy, including family members.

A number of local groups have been established by people affected by leprosy. I visited one group in North Sulawesi called Tomotou, meaning “the most human of human” in the Minahasan language. Tomotou works not only to uphold the rights of persons affected by leprosy but also to reverse the self-stigma that many have come to accept. It also strives to eliminate the stigma and discrimination associated with leprosy, at times, directly negotiating with the state government. These organizations tie up with other advocacy groups at the regional level as well as with PerMaTa’s many branches.

Africa also remains a region with a high number of newly diagnosed cases of leprosy. In the late 1920s, The Leprosy Mission previously known as MTL and the British Empire Leprosy Relief Association (BELRA) were established to provide relief, and their activities were also introduced in the 1959 film “The Nun’s Story” starring Audrey Hepburn. However, the sheer size of the African continent has meant that many communities are located too far from towns or the local government for support to reach them easily. In addition, political instability has hindered relief effort.

The Ethiopian National Association of Persons Affected by Leprosy (ENAPAL), founded in 1996, is one organization in Africa known for its unique approach. Its administrative costs are partially covered by dues from members. Together with the Ministry of Health, ENAPAL organizes programs to raise awareness about leprosy and undertakes a variety of initiatives to promote the socio-economic independence of those who have been affected by leprosy. One of its initiatives is the making of embroidered handicrafts by local women. They face dual discrimination on the basis of gender and medical history, and for most of them, it is their first chance to earn an income on their own.

While some countries like Ethiopia make effort to address discrimination, in many countries in Africa, it is still very difficult to find cases, dispense medicine to each person, and ensure that the medicine is taken properly. Although directions for taking the free multi-drug therapy (MDT) offered in blister packs have been translated into local languages, a considerable number of people are illiterate. And just the act of ingesting the MDT tablets is not an easy task for those who have never taken pharmaceutical medicine before.

Some communities in Africa are remote and not easy to reach, and the local culture and lifestyle may also hinder treatment. Take, for example, the extremely remote Pygmy communities in the forests of the Democratic Republic of the Congo, formerly called Zaire, and the Republic of Cameroon that have had almost no access to medical services until recently. These Pygmy communities also include leprosy-affected people, but in the early days, those receiving free MDT blister packs for treatment seemed to show no improvement in their condition. We later discovered that just as hunting societies share their catch with the entire community, the Pygmies were also collectively sharing the MDT. Despite this egalitarian practice, however, they discriminated against those affected by leprosy.

One village, where 23 members of two families lived, included two people who had once had leprosy, and when I asked if they had been subject to discrimination, they answered that persecution and torment were so frequent and widespread that it was too disturbing to talk about. Then, they echoed the view that leprosy is “the devil’s curse or divine punishment.” For me, it was the moment of sudden realization. Despite differences in social issues and conditions due to geographical location, discrimination against leprosy exists wherever human beings live.