Department of Child Health
Faculty of Medicine Universitas IndonesiaCiptoMangunkusumo Hospital
Primary immunodeficiencies (PID)are a group of over 300 different disorders that result from many different defects involving the innate and adaptive immune systems. Most of patients with PID presented with recurrent infections although they can also present with autoimmunity or malignancy. The diseases caused high morbidity and mortality if not treated.
Primary immunodeficiency considered as a rare disease but its prevalence is increasing. Prevalence of PID varyaccording to the type of PID and country. Overall prevalence varies around 1-80 per 100,000 population, with the B cells defects was the most common PID diagnosis.
Indonesia is a big country with thousands of islands with population of 260 million. Diagnosing PID in Indonesia is a challenge as a result of low awareness from the healthcare professional, limited immunology consultant, and laboratory facilities. Not only for diagnosis, Indonesia also has problem with PID management such as limited access to immunoglobulin replacement and no hematopoietic stem cell transplant service for PID.
Reports from 4 hospitals in Indonesia showed that we have only 45 PID cases, with 28.9% cases related to B cells defects and 35% mortality rate. Most of PID patients in the registry came from 2 hospitals in Jakarta, the capital of Indonesia.It showed that PID in Indonesia was underdiagnosed and not well treated. Most of the patients came with severe infections and the diagnosis of PID was delayed. In order to improve outcome of PID patients, we organized some campaigns and education forums to increase doctor’s awareness about PID. We also improve the laboratory facility and set up collaboration with other PID centers. We expect that the PID care in Indonesia will improved in following years.
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