Page 38 - Read Online
P. 38

Page 2 of 13             Padilla et al. Rare Dis Orphan Drugs J 2023;2:27  https://dx.doi.org/10.20517/rdodj.2023.38

               INTRODUCTION
               NBS is recognized globally as a successful public health prevention program that decreases morbidity and
                                                                  [1]
               mortality through early screening, diagnosis, and treatment . Program availability, newborn coverage, and
               number of screened disorders vary worldwide, i.e., North America (35 disorders, 100% coverage), Latin
               America (2-20+ disorders 10%-80% coverage), Africa (1 disorder, < 2% coverage), East Mediterranean and
                                                       [2-4]
               East Asia (5-20+ disorders, 60%-100% coverage) .
               Almost half of the world’s 134 million babies reside in the Asia Pacific (APAC) region . Countries in the
                                                                                         [5]
               region vary widely in size, economic development, language, culture, religion, and geography. APAC NBS
               progress is variable and can be broadly divided into three groups of countries: developed programs
               (Australia, China, Hong Kong, Japan, Korea, Malaysia, Sri Lanka, New Zealand, Philippines, Singapore,
               Taiwan, and Thailand) (1-30+ disorders; 80% to 100%); developing programs (Bangladesh, India, Indonesia,
               Cambodia, Laos, Mongolia, Nepal, Pakistan, Vietnam) (1-4+ disorders; < 1% to 5%); and undeveloped
               programs (Bhutan, Brunei Darussalam, Myanmar, North Korea, and Papua New Guinea). The undeveloped
               and underdeveloped programs are in low-income countries (LICs) and LMICs, challenged by poor
               economies, low literacy, inadequate health education, and poor government support [2,4,6] . In countries where
               screening is just developing or in the planning stages, there may be multiple projects ongoing within the
               country, often unknown to each other. In some countries, NBS may not appear to exist, but its availability
               from international screening laboratories may mean that a limited number are receiving the service anyway.
               Reviews of NBS activities in India, Malaysia, and Vietnam provide examples of some of the APAC NBS
               issues .
                    [7-9]

               Examples of international NBS collaborations that were useful in establishing NBS in developing settings
               exist, and these should be reviewed and considered as part of any planning process. Collaborations may
               include both commercial and/or non-commercial sources. For example, a portion of the Polynesian islands
                                                               [4]
               access NBS through the New Zealand screening program . Specialists from Singapore, Thailand, regions of
               China, Malaysia, and Vietnam have participated in training programs originating in Australia .
                                                                                                        [4]
               Collaboration with a German NBS program is providing laboratory services in Laos and a pilot project in
               Nepal is sending specimens to a commercial resource in India . Instrument manufacturers have provided
                                                                    [10]
               instrument training both onsite and abroad. International collaborative support for developing programs
               also exists within the region. In the latter case, six regional workshops since 2008 have resulted in written
               declarations by attendees aimed at providing development goals and encouraging related government
               support (at least philosophically) .
                                           [11]
               The Philippine NBS program (PNBSP) began as a pilot in 1996, utilizing the laboratory services of the NBS
               program in Sydney, Australia. Since then, the PNBSP has continued to grow and mature until it now
               provides screening services across the entire country, is part of the national insurance program, and is
               viewed by some as a worthwhile model of sustainability. Here, we review the development of NBS in the
               Philippines, including challenges and solutions, in the hope that these experiences can be helpful in
               developing NBS programs. It is not our intent to prescribe how NBS should be developed, but rather to
               review the experiences with one NBS program that has been initiated in LMICs and has become a
               successful, sustainable, and thriving system.

               THE PHILIPPINE NBS SYSTEM
               The Philippines is an archipelago with 7,600+ islands grouped into three major island chains: Luzon
               (north), Visayas (central), and Mindanao (south). It is classified as a LMIC in the Asia-Pacific and is home
                                                                                               [12]
               to a population of over 111 million. Administratively, the country is divided into 17 regions . The NBS
   33   34   35   36   37   38   39   40   41   42   43