New study on leprosy reveals challenges, identifies potential solutions

Leprosy-affected people in Malaysia face significant socioeconomic and psychological challenges, reveals a new study led by Dr Norana Abdul Rahman, an adjunct researcher at Perdana University. However, the study also identified various potential strategies to address these challenges and emphasized the need for collaborative efforts to eradicate leprosy in Malaysia by 2030.

The study, approved and supported by the Ministry of Health (MOH), uncovered challenges such as delayed diagnosis, lack of knowledge, late escalation of symptoms, fear of relapse, limited job opportunities (including issues around economic sustenance) as well as social stigma. The study involved interviews with 50 leprosy-affected people in Pahang, Kelantan, and Selangor.

To address the challenges, the study proposed a collaborative effort amongst various stakeholders to equip leprosy-affected individuals with essential skills and knowledge and promote disease awareness and early detection among the public and healthcare professionals by working with digital platforms. Thus, Norana engaged with 40 stakeholders, including individuals with leprosy, MOH representatives, and NGOs such as the Malaysian Leprosy Relief Association (MaLRA) and Care and Share Circle, as well as other government agencies, including the Welfare Department, during a workshop.

The workshop provided a platform for all stakeholders to interact with each other and better understand the problems faced by leprosy-affected individuals as well as providing stakeholders with a forum to discuss issues faced in the care, control, and prevention of leprosy throughout Malaysia.

“By working together and equipping leprosy-affected individuals and the key healthcare workers with essential skills and knowledge, we can address the challenges and work towards achieving zero leprosy in Malaysia by 2030,” said Norana.

The recommendations from the workshop are believed to serve as a guide for policymakers, healthcare professionals, and organizations working to improve the lives of leprosy-affected individuals and help empower them post-recovery to become contributing members of society. Further research was also recommended to address the complex problems of leprosy patients using a transdisciplinary framework.

MaLRA’s president Datuk Seri Rajendran Ramasamy said, “MaLRA applauds Dr Norana’s efforts in getting the various stakeholders surrounding leprosy to work together, especially given the recent rise in cases in Peninsular Malaysia. MaLRA hopes to play a role in helping to marshal the efforts and resources in combating the scourge of this debilitating, highly infectious and potentially deadly disease.”

MaLRA, formed in 1959, works closely with leprosy-affected communities with the objectives of assisting patients, ex-patients, and their families, whilst educating the public to be empathetic towards those affected. Comprised of a national network throughout Peninsular and East Malaysia and headquartered in Kuala Lumpur, MaLRA is led and supported by volunteer members across Malaysia.