RESUMO
Objectives: In this literature review, we describe the progress of Indonesia's NBS program (which is heavily centered on CH screening), its current pilot projects, and what lies ahead for this program. Setting: Since its conception began with congenital hypothyroidism (CH) screening, Indonesia has experienced plodding progress in NBS. There is a shortage of literature discussing the history, or the lack of, and journey of NBS in Indonesia. Methods: We searched for literature in Pubmed and Google Scholar with keywords such as "Newborn Screening, "Neonatal Screening," "Indonesia," "Asia Pacific," "Congenital Hypothyroidism," "Congenital Adrenal Hyperplasia,""Critical Congenital Heart Disease," "Hearing Loss," and "Inborn Error of Metabolism." Results: The only mandatory and regulated NBS program in Indonesia is congenital hypothyroid (CH) screening, with some pilot projects being conducted on screening for congenital adrenal hyperplasia (CAH), critical congenital heart disease (CCHD), hearing loss, and to a lesser extent, inborn error of metabolisms (IEMs). Conclusion: Despite the evidence and benefits, the government does not mandate or regulate newborn diseases such as CHD, CAH, hearing loss, and IEMs. The lack of regulation exists despite multiple pilot projects and studies showing a benefit in at least trying to screen newborns for those conditions.
RESUMO
Due to high entry barriers, countries might find it daunting to implement the NBS program, especially those just trying to start it. This review aims to discuss Indonesia's barriers that hinder newborn screening (NBS) implementation while discussing the future implications. Literature in Pubmed and Google Scholar was scoured with keywords such as "Newborn Screening", "Neonatal Screening", "Indonesia", "Asia Pacific", "Barriers", and "Challenges". We also searched for relevant references in those published articles. Grey literature, such as state regulations, informative webinars on the topics by experts regarding current situations, and press releases by the Indonesian Minister of Health (MoH), was also searched. Newborn screening is no longer considered just a laboratory test but an array of well-harmonized systems that must be orchestrated well. Some of the barriers Indonesia faces in implementing NBS are a lack of prevalence data, ethical issues, infrastructure, cost-benefit analysis, logistical issues, government support, patient issues, a lack of commitments, and a lack of healthcare workers, specialization, and training. Government support with professional advocates and support groups, proper infrastructure, and a single-payer system for NBS programs are necessary to accelerate NBS programs in Indonesia.