An Insight into Indonesia’s Challenges in Implementing Newborn Screening Programs and Their Future Implications

Abstract

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.

Current Status of Newborn Bloodspot Screening Worldwide 2024: A Comprehensive Review of Recent Activities (2020–2023)

“…A pilot project and health technology assessment was conducted in two hospitals between 2000–2005, which was then followed by the expansion of CH NBS to eight provinces in 2008 (West Sumatra, Jakarta, West Java, Central Java, East Java, Yogyakarta, Bali, and South Sulawesi). Although the MOH released a decree recommending CH NBS in 2014, lack of public awareness and lack of prioritization did not lead to sustainable NBS [ 529 ]. An interest in NBS has continued and in 2020 a review of CH and CAH activities in five Indonesian cities from October 2015 to January 2016 reaffirmed the high rates for both conditions, the high false-positive rate when screening for CAH and the overall need for NBS [ 530 ].…”

Prospects for Expansion of Universal Newborn Screening in Bulgaria: A Survey among Medical Professionals

“…Such an enterprise would require substantial public investment. NBS is not only a laboratory test but a sequence of coordinated and harmonized health services from diagnosis to treatment and follow-up [ 40 ]. To qualify for public funding, NBS programs should meet certain criteria for cost-effectiveness, cost-benefit, and budget impact.…”