Overcoming challenges in sustaining newborn screening in low-middle-income countries: the Philippine newborn screening system

Abstract

Newborn screening (NBS) was introduced in the Philippines in 1996, and the Newborn Screening Act of 2004 mandated its provision to all Filipino newborns. The program initially covered five conditions and has expanded to the current panel of 29 conditions. This report focuses on the steps taken for successful NBS implementation and the challenges that must be overcome to make NBS sustainable. While often considered a public health program, NBS is really a system of interacting parts that must be carefully considered and planned prior to embarking on their implementation. The basic challenges are the same in both high-income and low-middle-income countries (LMICs), but they are more difficult to overcome in LMICs. In addition to the technical aspects of screening, including supplies and maintenance, considerations must include human resources, professional and public education, and government support. Challenges may occur at any point in implementation and continuation, and it is important to learn from the experiences of others in order to make the process more efficient. Here, we report on the experiences in one LMIC, the Philippines, in creating and sustaining a NBS system so that others may gain from these experiences.

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

“…A lack of knowledge about the roles of physicians, nurses, and medical students within the NBS were evident in a recent survey suggesting a role for enhanced NBS education among health professionals [ 633 ]. Most recently, a review of the challenges in sustaining NBS in the Philippine NBS program has been published [ 634 ].…”

Integrating Genetic Services in the Philippine Public Health Delivery System: The Value of Networks

“…The Philippine newborn screening (NBS) program was introduced in 1996 as a pilot study in 24 hospitals in Metro Manila, and now covers over 7100 hospitals/birthing centers. From an initial NBS panel of 5 conditions, i.e., congenital hypothyroidism (CH), congenital adrenal hyperplasia (CAH), phenylketonuria (PKU), homocystinuria (HCY), and galactosemia (GAL), the screening panel now includes 29 conditions (CH, CAH, glucose-6-phosphate dehydrogenase deficiency [G6PDD], organic acid disorders, amino acid disorders, fatty acid oxidation disorders, urea cycle disorders, galactosemia, hemoglobinopathies, biotinidase deficiency, and cystic fibrosis) [ 13 , 14 , 15 ]. The vast majority of the included disorders are genetic conditions.…”

“…Guidance for life-long management is provided by the assigned CHGS. As of 2023, there are three CHGSs that provide island-wide services (Luzon, Visayas, and Mindanao) and facilitate comprehensive clinical evaluation, appropriate case management (diagnostic and therapeutic), and genetic counseling services for families or individuals with genetic conditions [ 13 ]. Table 1 gives the number of NSFs assigned to the various NSCs, the number of newborns screened, and the number of patients referred to NBSCCs.…”