Stigma Hampers Leprosy Management

KOMPAS/HENDRA A SETYAWAN

A neighbor helps Abdurahman enter his home on Friday (6/9/2019) in the RT 1/RW 13 neighborhood community unit of Sitanala village in Karangsari district, Tangerang, Banten. The village, which is located behind Dr. Sitanala Hospital, is home to around 1,000 residents, 90 percent of whom are former leprosy patients who have chosen to stay in the area with their families after completing their treatment. People with leprosy and former leprosy patients continue to face social stigma and discrimination due to a lack of public awareness about the disease.

MAKASSAR, KOMPAS – The social stigma of people with leprosy and people who had leprosy is hampering leprosy management in the country. Disadvantaged people are more at risk of contracting the disease due to undernutrition, poor sanitation and low awareness of hygiene.

The stigma that leprosy is highly contagious, along with the disease’s visible symptoms, is at the root of the discrimination against people with leprosy and former patients. This also means that many people are unwilling to be examined for diagnosis and treatment, even if they are aware that have contracted the disease, which can lead to permanent disabilities. Those who have recovered from leprosy often find it difficult to secure jobs. Leprosy management is therefore not just a health issue, but also a socioeconomic issue.

Leprosy Independence Society deputy chairman Al Qadri, 47, expressed in Makassar on Monday (9/9/2019) his hope that the government would campaign for public awareness and advocate the early diagnosis of leprosy. So far, the majority of leprosy patients did not recognize the early symptoms of the disease and did not seek treatment until their condition had grown worse.

“Actually, there is a long span of time between the initial symptoms and organ damage. If they recognize [the disease] at an early stage, they can be treated more quickly and recover before any organ is damaged,” said Al Qadri.

“Many interrelated things complicate leprosy management. However, stigma and isolation play a major role, causing sufferers to be reluctant to acknowledge [that they have the disease] or seek treatment. When they recover, they can’t plan their lives because of prolonged isolation. The establishment of leprosy shelters and hospitals, as well as separating leprosy-related disabilities from other kinds of illness, also constitutes a form of discrimination and isolation,” he added.

People with leprosy and people cured of leprosy have spoken about the stigma and isolation they experienced. Al Qadri said that when he was a sixth grader in Wajo, South Sulawesi, he was expelled from school for showing symptoms of leprosy.

KOMPAS/FAJAR RAMADHAN

Neighborhood children pose with an unidentified man who was cured of leprosy in Sitanala village of Karangsari district, Tangerang, Banten. The village is a safe haven for former leprosy patients, who continue to face social stigma and discrimination due to a lack of public awareness about the disease.

Munawar (not his real name), 67, a resident of Bangkalan regency, said his neighbors drove him out of his village because he had contracted leprosy. He eventually sought treatment from the Kediri Leprosy Hospital, which amputated his fingers that had become paralyzed. Because the hospital had limited facilities, he was referred to Sitanala Leprosy Hospital in Tangerang, where he was treated for 25 years without ever returning to his village.

People who were cured of leprosy also experienced a similar stigma, especially those who developed physical disabilities from the disease. Samina, 63, a Medan resident who has been cured of leprosy, worked as a janitor at several offices, but he was fired for his leprosy-related disabilities. He eventually ended up begging on the streets and became dependent on regional government aid to survive.

Sitanala Leprosy Hospital inpatient manager Rabiatun said that former leprosy patients continued to be plagued by social stigma. For example, former patients who visited general hospitals for a routine checkup were referred to leprosy hospitals. “They seem to have the leprosy stigma for life, even though they have recovered,” she said.

Director general of disease prevention and control Anung Sugihantono at the Health Ministry said that the stigma of leprosy was due to the lack of public awareness about how the disease was transmitted. Therefore, public education and awareness programs should be intensified through the Rapid Village Survey.

A public assumption existed that open lesions were a source of transmission, whereas the leprosy bacteria were not always present in lesions. It took a long time for such lesions to heal, because the blood flow into the affected areas slowed as a result of the disease, particularly peripheral blood flow.

Environmental factors

The public should understand that leprosy is only transmitted through prolonged and direct contact. Unclean environments contributed to the development of Mycobacterium leprae, the bacteria that caused leprosy. “The bacteria die easily when exposed to sunlight. Treatment for three days drastically reduce the number of bacteria,” he said.

According to Leprosy Services public health coordinator Edy Cahyono at Sumberglagah Hospital of the East Java Health Office, the problem was that people of low-income households paid less attention to environmental hygiene. Ventilation allowed sunlight into houses to prevent humidity, so that the leprosy bacteria would die off.

Apart from poor hygiene, most leprosy cases were found in communities that did not have direct access to clean water, such as communities in the interior of Asmat regency, Papua. The people in the region found it difficult to maintain cleanliness and hygiene, like bathing at least twice a day and washing their hands before meals, due to their minimal access to clean water.

The risk of leprosy infection was also higher among disadvantaged people, because it was difficult for them to maintain a balanced diet. According to Anis Fitriana, a research assistant at the Cipto Mangunkusumo Central Hospital-University of Indonesia medical school, the body’s immunity declined as a result of poor nutrition and became susceptible to infectious diseases like leprosy.

The lack of knowledge, prevailing stigmas and discrimination of leprosy prevented people who had contracted the disease from being examined. This was because they feared isolation from their families and society, including access to public services and jobs.

KOMPAS/BAHANA PATRIA GUPTA

Nurul Hidayah, a double amputee, attends to her daily chores on Tuesday (3/9/2019) at the Babat Jerawat community shelter (Liponsos) in Surabaya, East Java. The city-managed Liponsos is caring for 93 leprosy patients, providing them with shelter, food, medical treatment and training.

The stigma and discrimination against leprosy patients, people who had been cured of leprosy and their families needed to be eliminated. This could be done through public education on leprosy, its symptoms and management, as well as issuing an appeal that members of the public and families urge people with leprosy to seek immediate diagnosis and treatment.

Adherence to medical treatment can disrupt the cycle of leprosy transmission and prevent the bacteria from developing drug resistance. No less important is post-treatment monitoring of patients who have completed their leprosy multidrug therapy to ascertain their condition.

(FRD/REN/NIK/AIK/NSA)