From May to August 2020, a project to help communities of persons affected by Hansen’s disease suffering from the effects of the COVID-19 pandemic (report) was carried out in five districts of South Sulawesi, Indonesia. The project was implemented by young leaders of the South Sulawesi branch of PerMaTa (report), an organization of persons affected by leprosy operating in three of Indonesia’s 34 provinces, with support from Dare This Indonesia. The project involved door-to-door visits, based on lists of names and addresses of persons affected by leprosy PerMaTa had obtained from local health centers. These visits brought to light the difficulties that persons affected by Hansen’s disease are facing amid the coronavirus pandemic, and the difficulties they face in general because of their experience of leprosy.

Economic distress

On their visits, PerMaTa members came across people who had lost their jobs and their livelihoods, but were unable to receive government support because they didn’t have identity cards. After helping with their immediate wants by providing food supplies such as rice and eggs, PerMaTa asked district and village authorities to issue them with identity cards and add their names to the list of those eligible for public assistance so that they could receive ongoing assistance.

Stigma and discrimination

They also met people who were experiencing discrimination because of mistaken notions about leprosy. In fact, most people have a natural immunity and do not develop the disease even if exposed to the bacteria, but misunderstandings abound. In one household the young PerMaTa leaders visited, the husband was isolating his wife during her treatment for fear of becoming infected himself. When told his wife was no longer infectious having started taking her medicine, he seemed relieved and promised to support her throughout her treatment.

In addition, they came across children who had been cured of leprosy but were prevented from going to school because their fingers were deformed and it was thought they were still infectious. Some schools require a certificate showing that a child has been cured before allowing them to return, but many families don’t know how to organize this. PerMaTa leaders consulted with the authorities and made arrangements so that the children could resume their studies.

Self stigma

As well as being discriminated against by the surrounding community, persons affected by leprosy may also experience self-stigma. This can be a major problem and result in people avoiding others and shutting themselves up at home. It is not an issue that is easily resolved, but as PerMaTa members have experienced the disease themselves, they play an important role in helping people regain the confidence to return to society.

In one village they traveled to, they called on a house but were unable to meet with the occupants—brothers who feel they can no longer go out. PerMaTa is planning to work with the community where the young men are shut away at home in order to find a solution.

Access to healthcare

Although treatment for Hansen’s disease is meant to be provided free of charge, local health center staff are sometimes not aware of this with the result that some patients who start their treatment are unable to complete it because they can’t afford to continue to pay for the medication. Here too PerMaTa was able to intervene, consulting with the area leprosy officer and working with the local health center to enable treatment to be resumed. The home visits by PerMaTa also uncovered people in urgent need of medical care. In one instance, they arranged for a man in a serious condition with severe foot ulcers to be taken to hospital where he underwent surgery. It showed the importance of PerMaTa being able to cooperate the government and health centers.

New approaches

During this project, PerMaTa tried crowdfunding for the first time, raising money to help an elderly man living alone in a small hut that was on the verge of collapse. Mr. Lepu’s hut didn’t look like it would survive the coming rainy season, so PerMaTa turned to crowdfunding to raise the US$1,100 need to rebuild it. They quickly achieved the target figure and work on Mr. Lepu’s new home was implemented immediately and now he lives in a new house. (You can see pictures of his house on the crowdfunding page.)

Through their involvement in this project to respond to the challenges posed by COVID-19, PerMaTa’s leaders were able to expand the scope of their activities in collaborating with different people and organizations and utilizing a new way to raise funds. We hope that these experiences will help them become an even more dependable ally of persons affected by leprosy and their families.

Catch up with the day-to-day activities of PerMaTa’s South Sulawesi branch and of DTI on their Facebook pages.

Related articles

2020/8/13 COVID-19 Response Project in Indonesia
2020/9/4 COVID-19 Response Project in Indonesia Part 2: Young Leaders of PerMaTa
For more information about our COVID-19 aid projects, click here.