Beat Leprosy in Malang Raya

Lingkar Sosial Indonesia (LINKSOS) is a Disability Empowerment Center in Malang, East Java, serving the entire Indonesian region. LINKSOS aims to realize the respect, protection, and fulfillment of the rights of persons with disabilities. According to Indonesian Law Number 8 of 2016, disabilities caused by leprosy are considered a form of physical disability.

Since its establishment in 2014, LINKSOS has been consistently addressing leprosy issues. LINKSOS is even the only leprosy organization in Malang. The basis for LINKSOS’s consistency in leprosy issues is the high prevalence of leprosy in Indonesia, yet it is considered a neglected tropical disease, or what the WHO refers to as Neglected Tropical Diseases (NTDs).

According to the Indonesian Ministry of Health, there are 20 diseases classified as Neglected Tropical Diseases (NTDs). However, in Indonesia, some NTDs are prioritized, including filariasis, intestinal worms, schistosomiasis, leprosy, and yaws.

What is Leprosy?

Leprosy is a chronic infectious disease caused by the bacterium Mycobacterium leprae. The disease affects the skin, peripheral nerves, mucosa of the upper respiratory tract, and eyes. Leprosy can be cured, and treatment in the early stages can prevent disabilities. In addition to physical disabilities, leprosy patients also face stigma and discrimination.

Leprosy is transmitted through droplets from the nose and mouth. Prolonged and close contact for months with untreated leprosy patients leads to transmission. However, the disease is not transmitted through casual contact with leprosy patients such as shaking hands or hugging, sharing food, or sitting close together. Moreover, patients stop transmitting the disease when they start treatment.

Leprosy Figures in East Java

East Java Province, with a population of 41,416,407 people in 2023 according to BPS data, had an average of 5.13 new leprosy cases per 100,000 population. This means that in 2022, there were 2,124 new leprosy cases in East Java.

East Java ranks first nationally in the number of its residents affected by leprosy. Meanwhile, at the international level, Indonesia ranks third globally after India and Brazil.

Based on data compiled by the Ministry of Health as of January 24, 2022, the number of registered leprosy cases was 13,487, with 7,146 new cases discovered.

Leprosy in Malang Area

The number of leprosy patients in the Malang area has tended to increase over the past 4 years, although the data appears to fluctuate. This is because not all leprosy patients are willing to seek treatment. The main reason for this is the stigma associated with the disease, causing patients to fear being identified as having leprosy.

Looking at leprosy data in the Malang area, in Malang District, there were 27 cases in 2020, 26 cases in 2021, and 21 cases in 2022. In Malang City, there were 9 cases in 2020, 12 cases in 2021, and 10 cases in 2022. Meanwhile, in Batu City, there were 2 cases in 2020, 2 cases in 2021, and 3 cases in 2022.

Particularly in Lawang District, Malang Regency, there are 15 people affected with leprosy and have undergone treatment. Some of them, with the support of Lawang Integrated Health Center, have joined Omah Difabel, a empowerment center under the Lingkar Sosial Indonesia (LINKSOS) since 2020.

Table of Leprosy Figures in Malang in the Malang Area for Years 2020-2022

Furthermore, according to the latest data from BPJS East Java in 2023, the discovery of new leprosy cases per 100,000 population in Malang Regency is 1.40, in Malang City is 0.68, and in Batu City is 1.41. This means that based on the population of East Java in 2023, there were 37 new cases in Malang Regency, 6 cases in Malang City, and 3 cases in Batu City.

The discovery of leprosy cases in the Malang Area, when compared to neighboring cities/ regencies, is indeed lower. For instance, in the Pasuruan Regency, there were 104 cases, or 6.44 cases per 100,000 population.

Table of Leprosy Figures in the Malang Area for the Years 2023

Still a Lack of Leprosy Awareness Movement

Disabilities caused by leprosy as part of the spectrum of physical disabilities still receive less attention from society compared to other disabilities. An indicator of this is the scarcity of community groups addressing leprosy issues, resulting in a minimal leprosy awareness movement.

For example, in the Malang Area, which includes Malang Regency, Malang City, and Batu City, there are approximately 45 disability communities. These communities address various types and subtypes of disabilities, ranging from physical, intellectual, mental, visual, and hearing impairments. LINKSOS is the only organization working on leprosy issues in the Malang Area.

On a broader scale in East Java, only two leprosy organizations are known to exist: LINKSOS and the Perhimpunan Mandiri Kusta (Permata) of East Java. This indicates that the leprosy awareness movement is still minimal even at the regional level in East Java.

Leprosy Stigma and Social Construction

The reason for the lack of leprosy awareness movement is the lack of knowledge about leprosy. This lack of knowledge then leads to low awareness and stigma.

Leprosy is considered a curse, hereditary disease, and incurable contagious disease. These negative views cause leprosy patients to lose their jobs and become social outcasts.

The long-standing wrong paradigm about leprosy then creates a social construction. Some of the constructions formed include the belief that leprosy is so terrifying that people are reluctant to get close. This, in turn, makes it difficult to garner support for leprosy issues.

Leprosy stigma doesn’t just come from society but can also come from medical personnel and fellow people with disabilities. Forms of stigma include being labeled as having a contagious disease, a non-sterile disease, a disease that frightens other patients, and more.

Meanwhile, fellow people with disabilities often forget or are unaware that leprosy consequences also constitute a disability that needs to be fought for. In disability movements, leprosy issues are rarely heard.

Picture: LINKSOS collaborates with NLR Indonesia and local health centers to provide training on the rights of people with disabilities, lobbying, and advocacy as part of community organizing for Orang yang Pernah Mengalami Kusta (OYPMK) or people affected with leprosy in Nguling District, Pasuruan Regency, East Java.

The Importance of Community Involvement in P2 Kusta

The efforts of leprosy control and prevention or Penanggulangan dan Pencegahan Kusta (P2 Kusta) in Malang so far have not involved communities focused on leprosy issues. However, the role of the community, including those who have experienced leprosy, is mandated by Ministry of Health Regulation Number 11 of 2019 Regarding Leprosy Control.

The involvement of the community is directed towards empowering and increasing community participation in leprosy control activities. These activities include participation as cadres, supervision of medication intake, engagement in health promotion, early detection of leprosy patients, and other forms of participation and support in leprosy control activities.

Community empowerment in the health sector is also regulated in Ministry of Health Regulation Number 8 of 2019 regarding Community Empowerment in the Health Sector. In this empowerment, the community is accompanied by Facilitators and Cadres.

Facilitators are individuals who have the ability to accompany and assist the decision-making process undertaken by the community in adopting innovations in the health sector.

Facilitators can come from the Central Government, Local Government, community organizations, social organizations, private sector, universities, and/or community members.

Meanwhile, Cadres are individuals selected by the community and trained to mobilize the community to participate in community health empowerment. There are Cadres in various issues, such as KB cadres, toddler cadres, elderly cadres, TB cadres, and others.

However, among the various titles mentioned above, the term “Kader Kusta” is rarely heard. The first time in Indonesia, Kader Kusta exists in the Pasuruan Regency, precisely in the working area of Nguling Integrated Health Center. The Kader Kusta in Nguling District were developed by LINKSOS and the local Integrated Health Center through the Mardika project, or leprosy and disability care community project by NLR Indonesia.

Developing Support Personnel, Kader Kusta, and Optimizing Integrated Health Center

Returning to the leprosy figures, in 2023, there were 46 new cases of leprosy recorded in Malang. The reality could be even higher considering that some individuals choose not to seek treatment due to stigma.

Out of these 46 individuals, there are at least 46 families as close contacts. If each family has an average of 4 members, then there are potentially 184 close contacts who could be carriers. This means that if these 46 individuals delay seeking treatment and transmit the disease to their close contacts, the leprosy cases in Malang will continue to increase.

There are three things that can be done in accordance with regulations. Firstly, involving individuals or organizations focused on leprosy issues as support personnel. In this regard, LINKSOS, as the only organization in Malang focused on leprosy issues, is ready to collaborate.

Secondly, developing Kader Kusta to focus on addressing leprosy issues. Thirdly, optimizing Integrated Health Center (Posyandu). In this case, Posyandu can be utilized to conduct leprosy screening.

It’s Time to Show Compassion

The theme for World Leprosy Day in 2024 is “Beat Leprosy.” This theme encapsulates two objectives: eliminating leprosy stigma and enhancing the dignity of those affected by leprosy.

The theme “Beat Leprosy” serves as a powerful reminder that alongside medical efforts to eliminate leprosy, we need social and psychological aspects. It’s time to proclaim to the world that leprosy is no longer a source of stigma, but an opportunity to demonstrate love and respect for all individuals.