The central outpatient clinic for the residents of the Sungai Buloh Settlement or Leprosarium, officially known as the National Leprosy Control Centre, is still in part-time operation. — Photos: Dr Norana Abdul Rahman
Many may consider leprosy as a disease of the past, but this communicable disease is still very much amongst us.
This is why World Leprosy Day is still celebrated: to raise awareness of a disease that many believe does not exist any more.
World Leprosy Day has been observed since 1954 and is marked annually on the last Sunday of January, which was on Jan 29 this year (2023).
This date is significant as it marks the anniversary of Mahatma Gandhi’s death.
Raoul Follereau, a French humanitarian, chose this date as a tribute to the life of Gandhi, who worked closely with, and had much compassion for, the people with leprosy.
It allows us to celebrate the lives of the people affected, raise awareness of the signs and symptoms of leprosy, and tackle the stigma and discrimination surrounding the disease.
This year’s theme is “Act Now: End Leprosy”.
Ongoing transmission
Leprosy, also known as Hansen’s Disease, is a chronic infectious disease caused by a bacillus, Mycobacterium leprae.
It is one of the neglected tropical diseases (coincidentally, World Neglected Tropical Diseases Day was on Jan 30), and it impacts impoverished communities in resource-limited countries.
Many affected people live in poor, crowded housing and lack access to basic medical care.
The infection has a long incubation period of about five years, but it may take up to 20-30 years before signs and symptoms of the disease develop.
It can affect the skin, eyes, mucous membranes (especially the lining of the nose) and the peripheral nerves.
Leprosy is curable, and the World Health Organization (WHO) provides free treatment to those affected.
The multidrug therapy (MDT) for leprosy has been a game-changer, and since its introduction, the number of cases worldwide has decreased considerably.
According to the WHO, the registered global number of leprosy cases in 2021 was 133,802.
In addition, there were 140,594 new cases, indicating ongoing transmission of leprosy.
India, Brazil, and Indonesia have the highest burden of leprosy, with more than 10,000 new cases each.
A total of 9,052 new cases were in children, an increase of 4.7% in 2021, compared with 2020 (8,642).
The Covid-19 pandemic disrupted leprosy services in many countries, and there may be undetected cases that are contributing to its continued transmission.
Stigma and discrimination surround people affected by leprosy, and some countries still have laws that allow discrimination on the basis of leprosy that have not been repealed.
Leprosy has physical, psychological and social consequences, leading to economic inequalities.
Fear of the disease leads to concealment by the people affected.
It prevents the timely diagnosis of leprosy, as people who fear that they may have the disease avoid coming forward to confirm the diagnosis.
Hence, stigma leads to delays in starting treatment and the development of disfigurements and deformities.
Unfortunately, the impact is not only limited to the people affected, but also their families and communities.
Once a major problem
Historically, leprosy was a public health problem in Malaya.
Staff of a mobile skin clinic carrying out the slit-skin smear test to detect leprosy, which involves getting a skin sample from the patient.
The then-British government in Malaya enacted the Leprosy Act In 1926 to protect the general population.
It required compulsory notification and isolation of leprosy patients, resulting in leprosy cases being reported in all the states of Malaya.
Although Sungai Buloh Leprosarium eventually took charge of most of the leprosy patients when it was opened in 1930, there were three leprosaria on record in the country.
They were Pulau Jerejak, Penang, for the northern states; Sungei Buloh, Selangor, in the central region; and Tampoi, Johor, for the southern region.
In addition, there was a 67-bed ward attached to the Kota Bharu Hospital in Kelantan, which served leprosy patients on the East Coast.
Sungai Buloh Leprosarium was a research centre and a self-sufficient community with its own facilities.
Despite the freedom of movement within the settlement, many leprosy-affected people continued to live in isolation from the rest of society even after their cure.
Aside from the medical centres, there were 24 mobile skin clinics stationed at various health centres all over the country that offered outpatient services.
A leprosy-trained assistant nurse, an attendant and a driver staffed each mobile unit.
They assisted the doctors, followed up on patients, tracked those who defaulted treatment and/or follow-up, kept records, and prepared the monthly reports for the Central Leprosy Registry in Sungai Buloh.
In 1969, the National Leprosy Control Programme was implemented in Peninsular Malaysia.
It was extended to Sarawak in 1974, and Sabah in 1985.
The programme is the government’s effort to control leprosy through early case finding and effective treatment.
The compulsory segregation policy was officially axed under this programme.
Treatment of leprosy was integrated with basic medical and health services in Malaysia.
In 1985, MDT for leprosy was introduced in Malaysia, which led to a substantial reduction in the prevalence of leprosy.
Nine years later, in 1994, the WHO declared that Malaysia had eliminated leprosy as a public health problem.
Continuing efforts
Malaysia has done well in its efforts to combat leprosy.
After a patient's skin sample is collected, the mobile skin clinic staff can use their lab equipment to look for M. leprae in the samples on the spot for an instant diagnosis.
In 2021, according to the WHO report, there were 142 new cases reported in Malaysia and six new child cases.
Even though the number of new leprosy cases remains low, unless concerted efforts are made to trace and treat these individuals, the infection will continue to be spread by those who are untreated.
There are pockets of endemicity: new cases are still being reported among local residents, indigenous people and foreign-born migrant workers.
Sarawak and Pahang reported high incidences among the Orang Asli.
Migrant workers probably contributed to the higher incidence reported in Sabah and Selangor.
Malaysia is working towards integrated active case detection in targeted populations to interrupt the continued transmission of leprosy.
Early detection and control of leprosy are dependent on active case detection and promotional activities in endemic areas.
Despite the disruptions caused by the Covid-19 pandemic in Malaysia, health workers have persevered with screening the contacts of leprosy-affected people and high-risk populations.
We must continue to raise public awareness and insights into leprosy through advocacy and health education.
Leprosy-affected people must be empowered to come forward to be screened, treated and taught self-care.
Healthcare workers must be trained to detect, treat and manage leprosy.
The Health Ministry has generated and developed The National Strategic Plan for Leprosy (Hansen’s Disease) 2021–2030 to guide relevant stakeholders in establishing their leprosy control activities and aligning their strategies to the Plan to achieve their targets.
Together, we need to act now to end leprosy!
Raising awareness
Education and improving access to health services for all will help to eliminate the disability and stigma associated with leprosy.
Many living with the disease may be unable, or not given the opportunity, to work because of their disability.
The good news is that leprosy is curable, and if treated early, these people can continue to work and lead active lives during and after treatment.
Malaysia has acted early to increase efforts to facilitate the inclusion of leprosy-affected people.
Stigma, discrimination and the barriers to their participation in society have improved with time, but there are still challenges to overcome, especially among certain communities like the Orang Asli.
Understanding their lived experience and how they cope with the burden of the disease will help us understand their concerns and needs.
Listening to their voices will help the relevant agencies tailor support for them to become contributing members of society.
So, it is important to remember that leprosy is not as highly contagious as once thought.
It is curable with antibiotics, and you cannot get leprosy through casual contact, e.g. by talking to an infected person or shaking their hands.
A patient is no longer contagious a few days after starting their antibiotics, but they must complete their treatment (which may take up to two years) to ensure that the infection does not return.
They can continue to live normal lives, so let us focus on their abilities, not their disabilities!
Dr Norana Abdul Rahman is an adjunct research fellow at Perdana University. For more information, email starhealth@thestar.com.my. The information provided is for educational and communication purposes only, and should not be considered as medical advice. The Star does not give any warranty on accuracy, completeness, functionality, usefulness or other assurances as to the content appearing in this article. The Star disclaims all responsibility for any losses, damage to property or personal injury suffered directly or indirectly from reliance on such information.
