Leprosy Number in East Java
Leprosy is still a serious health problem in Indonesia. In the case of leprosy numbers, Indonesia is in the top three after India and Brazil. According to the data from Ministry of Health Republic Indonesia, per 24th January 2022 it shows that the number of leprosy cases are registered at 13.487 cases with the founding of new cases, 7.146 cases.
Especially in East Java, with the total population in 2023 reaching 41.416.407 people, according to BPS of East Java’s data, a new leprosy case per 100.000 population were discovered with 5,13 average. It means, in East Java in 2022, the discovery of a new leprosy case reached 2.124.
Lingkar Sosial Indonesia (LINKSOS) takes an important role in leprosy prevention and countermeasures in East Java. LINKSOS and NLR Indonesia are cooperating in community empowerment in the leprosy health field in Pasuruan, Nguling district. The cooperating is in the Mardika project or Masyarakat Peduli Disabilitas Kusta (Disability and Leprosy Care Community).
According to the BPS East Java’s data in 2022, new leprosy cases were discovered per 100.000 population, reaching 6.44 or 104 new cases from 1.619.035 population in Pasuruan regency. This number placed Pasuruan regency in 9th place after Sumenep (22,27), Sampang (22,540), Bangkalan (16,23), Pamekasan (12,69), Lumajang (10,39), Tuban (10,29), Probolinggo (7,74), Situbondo (6,93), per 100.000 population.
Discrimination to Leprosy Medical Personnel
“I have been entrusted with the responsibility as a leprosy medical personnel for 23 years, specifically since January 2000, and I’m glad I’m still consistent until now.” says Eriyanti. She explains, the main barrier is community stigma about leprosy. Then the stigma is growing, becoming a discriminative attitude to OYPMK or orang yang pernah mengalami kusta (people affected with Leprosy/ PAWL) both those still undergoing treatment and those who have recovered, including leprosy workers, have experienced discrimination.
The discrimination is come from the society, who are OYPMK family and nearby society, tell Eriyanti. OYPMK tends to isolate themselves, resigning and fearing the discovery of leprosy by their surroundings. The same is felt by their families; they are afraid that the community will find out that a family member has leprosy.
“Leprosy is considered a disgrace, an inherited disease, the result of black magic or spells, and so on,” said Eriyanti. Even the families of OYPMK prefer to be thought of as victims of black magic. We once tried to explain what leprosy is, but the result was being expelled. They said our child was affected by black magic, not leprosy, and we don’t need any examination, said Eriyanti, demonstrating the incident of expulsion.
Another form of expulsion is when residents close their doors and leave their homes. ‘Sorry, I have to work,’ Eriyanti mimicked. There were also instances where we were mistaken for beggars asking for donations and were turned away. ‘Sorry, we’re not giving any donations, find someone else.’ Ironically, at that time, we were conducting an educational outreach.
“People see leprosy workers as if they are already tired. Some residents prefer to avoid rather than meet me,” Eriyanti recounted. I am active in the field due to the demands of my job and my moral responsibility. In the past, I served as both a leprosy medical personnel and a Pustu or puskesmas pembantu (public health center assistant) in the Kapasan village. Because of my fieldwork, I often left the Pustu unattended. As a result, I was reported to the health center by the community, stating that the Pustu was frequently closed.
The Struggle in Recruiting Leprosy Volunteers
Finding someone willing to take care of leprosy is also challenging. In reality, I served as a leprosy medical personnel at the Nguling Health Center for 23 years before finally finding a replacement because I am retiring. Training volunteers for leprosy is also not easy. In the past, without asking, I was accompanied in the field by a young child in the village of Watuprapat. Interestingly, that child has remained loyal until now. He has grown up and become a member of the Kader Kusta (Leprosy Cadre). Her name is Holisa.
“Alhamdulillah, things have changed a lot now. As a leprosy medical personnel at the Nguling Health Center, I am no longer alone. There are now 160 Kader Kusta spread across all villages in the Nguling regency,” said Eriyanti.
She continued, “Because we actively promote leprosy awareness through involvement of village officials and the community, the stigma is gradually fading. This is marked by increased openness within the community. Since the establishment of the Kader Kusta, at least four individuals have taken the initiative to get tested after noticing signs of leprosy on their bodies.”
"Stumble upon Leprosy in Nguling."
“There used to be a saying, ‘If you go to Nguling, you won’t stumble over a stone but over leprosy,’ because of the strong leprosy stigma at that time,” said Dr. Eko Santoso Machfur, Head of Nguling Health Center.
“I was assigned to the Nguling Health Center in July 2019,” Eko continued. At that time, leprosy was a priority due to its relatively high prevalence. Additionally, the discovery of a child with leprosy indicated that the disease was still spreading in the area.
Then, we had a discussion with leprosy medical personnel and other healthcare professionals for leprosy management in the Nguling district. The discussion centered around the initiation of an innovation named Bengkura Mas or Bebaskan Nguling dari Kusta Mandiri Bersama Masyarakat (Liberate Nguling from Leprosy Independently with the Community). The main concept of this innovation is the ‘leprosy raid’ and the ‘spider web.’
“The ‘leprosy raid’ involves simultaneous screening, while the ‘spider web’ entails community involvement and networking during the leprosy raid,” explained Eko. This concept was introduced in 2019. The Bengkura Mas program was endorsed by the Decree of the Head of Nguling Health Center No. 440/012/424.072.035/2019 concerning new innovations in the prevention and control of leprosy.
“However, the implementation of Bengkura Mas was hindered by the pandemic,” said Eko. No activities could be effectively carried out due to various physical distancing regulations and budget policies. Then, in 2020, we met with Lingkar Sosial Indonesia (LINKSOS). During our discussions, LINKSOS proposed a community empowerment concept in the health sector that aligns with Bengkura Mas.
The Kader Kusta: 160 Volunteers Joining
“LINKSOS, supported by NLR Indonesia, then strengthened the Bengkura Mas innovation, which eventually delivered the Kader Kusta,” said Eko. The Kader Kusta are a leprosy awareness socialization team consisting of village officials, Nguling Health Center healthcare workers, as well as leprosy-aware community members, including people with disabilities and PAWL (people affected with Leprosy). Currently, there are 160 Kader Kusta from Bengkura Mas spread across 15 villages in the Nguling district.
The role of the Kader Kusta is quite simple. They actively and systematically provide education to the community, assist in finding suspects, and offer moral support to patients still undergoing Multidrug Therapy (MDT).
The involvement of the community group in breaking the chain of leprosy has proven effective and has been able to reduce the prevalence of leprosy in the Nguling district. The number of family and neighbor contact screenings until November 2023 was 4,656 people. There were 10 positive cases in total, with 2 in Watuprapat Village, 3 in Kedawang Village, 1 in Randuati Village, 1 in Sebalong Village, 2 in Wotgalih Village, and 1 in Sedarum Village.
Leprosy in the Nguling district once ranked first in the Pasuruan Regency. In 2000, the prevalence rate of leprosy in the Nguling district was 11.9 per 10,000 population, with a proportion of children at 25.5% and a proportion of disability level 2 at 19.6%, said Eko. However, over the past two years, there has been a significant decrease from 3.2 per 10,000 population to 1.7, approaching the elimination point.
“The prevention and control efforts for leprosy in the Nguling district involve cross-sectoral collaboration across networks, both locally, nationally, and internationally, with shared roles,” stated Eko. The collaborative project between NLR Indonesia and LINKSOS in the Nguling district has significantly accelerated efforts for leprosy prevention and control. LINKSOS and NLR Indonesia empower OYPMK and enhance the capacity of the Kader Kusta. Meanwhile, we from the Nguling Health Center focus on medical efforts and leprosy control.
This year, the Bengkura Mas innovation successfully secured the 3rd place in the Inovasi & Teknologi Pasuruan Maslahat 2023 Competition organized by the Bappelitbangda Kabupaten Pasuruan (Pasuruan Regency Research and Development Agency). Additionally, we were invited to a seminar by the Ministry of Health as speakers discussing Bengkura Mas as a role model for Desa Sahabat Kusta (Leprosy Friendly Villages).
OYPMK Empowerment
“Back then, I stayed at home and felt ashamed and desperate being affected by leprosy, but now I am active as a member of the Kader Kusta and as a member of Difabel Pecinta Alam (Difpala),” said Darojat, a man from Nguling Village. It’s a significant change compared to before; now I actively participate in community socialization with the Kader Kusta, attend various training sessions, and even engage in mountain climbing. Furthermore, whenever there are LINKSOS activities in Pasuruan, I am always actively involved, serving as a committee member and assisting in preparations. I have also been assigned to travel out of town for NLR Indonesia’s Community Organizing (CO) activities.
“The changes I’ve experienced include increased self-confidence, expanded knowledge about leprosy, organizational skills, and the ability to make brooms,” said Darojat. The challenges he faces include marketing the broom products, figuring out how to sell them, and the distance from Nguling to Malang when participating in mountain climbing activities with Difabel Pecinta Alam in Malang.
For the future, I hope there will be activities focusing on empowering OYPMK in villages, Darojat expressed. I am ready to actively participate as a motivator because, in general, OYPMK need to be encouraged first to open up.
Darojat is not alone; he is actively engaged with five of his friends who are fellow OYPMK and people with disabilities. They include Basori from Watuprapat Village, Suyono and Soarta from Sanganom Village, Wahid from Kedawang, and Guntur from Nguling Village.
Enhancing the Organizational Capacity of Partners
Mardika or Masyarakat Ramah Disabilitas dan Kusta (Disability and Leprosy Friendly Community) is one of NLR Indonesia’s projects that focuses on disability and OYPMK inclusion in development. In Pasuruan Regency, East Java, the Mardika project is implemented by the organization Lingkar Sosial Indonesia (LINKSOS).
“We have been collaborating with NLR Indonesia since 2019,” explained Ken Kerta, the Founder of LINKSOS. An important note for us is that the joint project with NLR is an effective effort in preventing and controlling leprosy while upgrading LINKSOS’s capacity as a partner.
“The collaboration between NLR Indonesia, LINKSOS, and the Pasuruan District Health Office through the Nguling Health Center effectively enhances the community’s capacity in the health sector. This empowerment particularly focuses on P2 Kusta or Pencegahan dan Penanggulangan Kusta (Leprosy Prevention and Control. Tangibly, there are currently 160 members of the Kader Kusta in the Nguling district. According to the health center’s data, the leprosy rate has also decreased. In the past two years, there has been a significant decrease from 3.2 per 10,000 population to 1.7, approaching the elimination point.
“Working with NLR Indonesia has also effectively upgraded the organization’s capacity,” expressed Ken Kerta. Through the NLR-LINKSOS collaboration, we learned how to create a logical framework and develop it.
Tangibly, by the end of 2023, the Kader Kusta were able to create a work plan for 2024. Meanwhile, LINKSOS also developed a medium-term work program for 2024-2026. LINKSOS also plans to create an Annual Report at the end of 2024. For us, NLR Indonesia serves as an ideal organizational template to follow.