Newborn Screening: Research to Policy

Transcription

1 FEATURE ARTICLE VOL. N. 8 Newborn Screening: Reearch to Policy Carmencita David-Padilla, Juanita A. Bailio, Yolanda E. Olivero Department of Pediatric, College of Medicine and Philippine General Hopital, Univerity of the Philippine Manila Department of Health, Manila, Philippine Introduction Newborn creening (NBS) i a public health activity aimed at the early identification of infant who are affected by certain genetic/metabolic/infectiou condition. Early identification of thee condition i particularly crucial, ince timely intervention can lead to ignificant reduction of morbidity, mortality, and aociated diabilitie in affected infant. It repreent the firt population-baed genetic creening program, and ignalled the integration of genetic teting into public health program. NBS ha been univerally accepted for almot about five decade. Hitorically, it wa firt ued for the detection of phenylketonuria (PKU) with the filter paper creening method developed by Dr. Robert Guthrie. PKU i an inborn error of metabolim, which lead to mental retardation if not treated with a low phenylalanine diet early in life. Since it inception in the 96, at leat, affected patient all over the world are now leading normal live. Today, NBS i being ued for a number of other condition, including metabolic and infectiou dieae. NBS i the term ued to decribe variou type of tet that can be done during the firt few day of a newborn life. NBS eparate thoe who might have the diorder from thoe who probably do not have the diorder. In contrat, diagnotic or confirmatory teting i performed, to etablih the preence of a condition. NBS that i properly timed and performed ha the potential for preventing catatrophic health outcome, including death. 5 Thu, early identification of thee condition i particularly crucial, ince timely intervention can lead to a ignificant reduction of morbidity, mortality, and aociated diabilitie in affected infant. NBS i not jut a laboratory tet. For almot 5 year, NBS ha evolved into a SYSTEM that relie on mooth integration of the effort of a number of individual and procee. The NBS Sytem i compried of ix eential program component: () Education (including health Correponding author: Carmencita David - Padilla, MD, MAHPS Intitute of Human Genetic, National Intitute of Health - Philippine 65 Pedro Gil St., Ermita, Manila, Philippine Tel/ Fax Number: cpadilla@upm.edu.ph Part of the paper wa taken from the thei entitled: Proce Evaluation of the Screening Component of the Newborn Screening Program in Selected Region in the Philippine: Toward Improved Implementation of Republic Act No 988 or the Newborn Screening Act of (C Padilla, May 5) profeional, parent, the general public, and politician); () Screening (including proper timing and pecimen collection, tranport, laboratory teting, and reporting); () Early Follow-up (including abnormal tet notification, tracking and confirmatory teting); () Diagnoi (including clinical and biochemical evaluation); (5) Management (including counelling, treatment monitoring and long-term follow-up); (6) Evaluation (including outcome monitoring and quality aurance throughout the ytem).,5,6, It i thi ytem that mut be the focu of infratructure development in etablihing a new program. In order to enure the highet level of creening quality, all ytem component hould be included in an overall quality aurance plan and quality indicator hould be developed for each. The mooth integration of NBS Sytem component mut develop locally within individual geographic, economic, and political contraint. Creation of an appropriate and functioning NBS Sytem preent a challenge that require dedication and pereverance of the organizer() in order to ucceed. Traditionally, program overight i a reponibility of the public health department or the health minitry; however, coordination and cooperation with academic center and private partner [confirmatory laboratorie, medical center, rd party payer (e.g. inurance companie), and other non-government organization] are eential for the ucce of the overall ytem. Newborn Screening in the Philippine In the Philippine, NBS wa introduced by a group of obtetrician and pediatrician from Metro Manila hopital (Table ) in June, 996. The group named itelf the Newborn Screening Study Group (NSSG) and it project wa called the Philippine NBS Project (PNBSP). The objective of the PNBSP were: ) to etablih the incidence of 6 metabolic condition congenital hypothyroidim (CH), congenital adrenal hyperplaia (CAH), galactoemia (GAL), phenylketonuria (PKU), homocytinuria (HCY), and glucoe-6-phophate dehydrogenae (G6PD) deficiency, and ) to make recommendation for the adoption of NBS nationwide. The ultimate goal of the project wa to gather adequate data to upport legilation for a national NBS program. 8 In 998, the NSSG preented it reearch data to the Department of Health (DOH). The firt formal acknowledgement of the value of the reearch data wa in March 999 when the newborn creening wa included in Children Health 5, (a ubdocument of, and DOH input to CHILD, the Philippine National Strategic Framework 6 ACTA MEDICA PHILIPPINA Vol. N. 9

2 Newborn Screening: Reearch to Policy Table. Pilot Hopital of the Philippine Newborn Screening Project Private Hopital Capitol Medical Center Cardinal Santo Medical Center Children Medical Center Chinee General Hopital De Lo Santo Medical Center Dr. Victor R. Potenciano Medical Center FEU-NRMF* Manila Doctor Hopital Mary Chile General Hopital MCU-FDTMF* Medical Center Manila Metropolitan Hopital Our Lady of Lourde Hopital Perpetual Help Medical Center St. Luke Medical Center St. Martin de Porre Hopital UERMMMC* United Doctor Medical Center Government Hopital Opital ng Maynila Philippine Children Medical Center Philippine General Hopital Quezon City General Hopital Quirino Memorial Medical Center Rizal Medical Center *FEU-NRMF - Far Eatern Univerity - Nicanor Reye Memorial Foundation; MCU-FDTMF - Manila Central Univerity - Filemon Dioneio Tanchoco; UERMMMC - Univerity of the Eat Ramon Magayay Memorial Medical Center P H A S I N G ELEMENTS Foundation Laying Accelerated Sutained Implementation Implementation (999-) ( -) (5-beyond) Health facility involvement Major Hopital DOH Retained Hopital Expanion to with Model in RHU LGU Hopital, Private other health Set-up Hopital facilitie with MCH ervice Operation/ Sytem/Network Capacity Building(NIH) Maintreaming Expanion Sytem development Networking within Satellite Capability building interlocal health zone Laboratorie 6 QUALITY Service Delivery Package Advocacy Financing National Policy on NBS Integration into all exiting Standard Promotion maternal & child newborn/maternal health ervice package package Policy upport legilation Sutained Alliance building, Advocacy Feaibility of PHIC incluion, PHIC accreditation Working for Creative financial cheme and coverage Univeral Coverage N E W B O R N CARE Promotion Interperonal Trimedia 5 Sutained media promotion Target Participating % 5% 8% Overall Coverage % 5% % Figure. Newborn Screening Strategic Framework for Serie of workhop conducted for CHD/ Regional Coordinator & Director and DOH Retained Hopital (July 995-December 999) DOH Adminitrative Order No -A. Policie on the Nationwide Implementation of Newborn Screening (January, ) Republic Act 988. An Act Promulgating a Comprehenive Policy and a National Sytem for Enuring Newborn Screening (April, ) PhilHealth Board Reolution No. 95, S. 6. Reolution approving the Newborn Care Benefit Package (July 6, 6) 5 NBS in broadheet, radio, and TV (Magandang Gabi Bayan, ) 6 Opening of Newborn Screening Center-Viaya PhilHealth Board Reolution No. 95, S. 6. Reolution approving the Newborn Care Benefit Package Vol. N. 9 ACTA MEDICA PHILIPPINA

3 Newborn Screening: Reearch to Policy Table. Miletone in the hitory of newborn creening in the Philippine 996 February April June 99 8 September 999 March July January February April May 9 December January April 5 October 5 December 6 January January 8 June 8 Augut Firt organizational meeting attended by repreentative from Philippine Pediatric Society (PPS) accredited and Philippine Obtetrical and Gynecological Society (POGS) accredited hopital in Metro Manila Creation of the NBS Study group compoed of pediatrician and obtetrician from pilot hopital. Project name: Philippine NBS Project Commencement of the PNBS P - NBS ample were ent daily to the New South Wale NBS Program in Autralia for tet performance and analyi. Start of operation of the NBS Laboratory at the NIH Incluion of NBS in Children Health 5 9 Creation of the DOH Tak Force on NBS compoed of repreentative from DOH, Intitute of Human Genetic- NIH, DILG and other health group. Iuance of Adminitrative Order No A by the DOH tating the Policie for the Nationwide Implementation of NBS Iuance of Department Order No. 9-C, by DOH Subject: Creation of the National Technical Working Group on NBS Program, taked to provide direction and guidance for the nationwide implementation of the NBS program. NBS bill filed at Congre NBS bill filed at Senate Iuance of DOH Adminitrative Order No,, Subject: Strengthening Implementation of the National NBS Sytem Iuance of the Preidential Proclamation No 5 entitled Declaring the Firt Week of October of each year a National NBS Awarene Week Enactment of Republic Act No 988 known a the Newborn Screening Act of Signing of the Implementing Rule and Regulation of the Newborn Screening Act 5 Signing of the Memorandum of Agreement for the creation of the Newborn Screening Reference Center (NSRC) by the DOH and UP Manila Opening of the nd NBS Center at Wet Viaya State Univerity Medical Center 6 NBS included in licening requirement of Philippine hopital; 9% of NBS fee covered by national health inurance Scholarhip for Genetic and Endocrinology opened for Region without pecialit 8 Iuance of DOH Memo No. 8- impoing the following target: %-8, 5%-9 and 85% by 9 Iuance of AO No. 8 6 and 8-6A by DOH impoing penaltie for non-implementation and/or overpricing of NBS for Plan Development for Children) which i meant to be the road map for planning program and intervention that promote and afeguard the right of Filipino children (urvival, development, protection, participation) in the next 5 year (-5). 9 Figure preent a trategic framework on Newborn Screening for prepared by the National Technical Working Group on Newborn Screening. Thi framework give pecific target from foundation laying to utained implementation. Hitorical miletone are preented in Table. The major timeline phae in the development of NBS include: 996 Creation of PNBSP with routine creening for 6 diorder (CH, CAH, PKU, Gal, HCY, G6PD Deficiency) in the member hopital in Metro Manila compriing the NSSG. Adoption of the PNBSP by the DOH; program evaluation reulting to reduction of the time of ample collection to hour of age (from the initial requirement of 8 hour or older); and dicontinuation of creening for HCY; formal incluion of G6PD deficiency in the NBS panel. Enactment of the Newborn Screening Act of and completion of the Implementing Rule and Regulation. 5 Incluion of NBS in the licening requirement of hopital. 6 Incluion of NBS in the Philippine Health Inurance (PHIC) newborn package, covering 9% of the NBS fee. Current Statu of NBS Implementation in the Philippine Newborn Screening Legilation NBS wa integrated into the public health delivery ytem with the enactment of Republic Act 988 or Newborn Screening Act of a it intitutionalized the National NBS Sytem, which hall enure the following: [a] that every baby born in the Philippine i offered NBS; [b] the etablihment and integration of a utainable NBS Sytem within the public health delivery ytem; [c] that all health practitioner are aware of the benefit of NBS and of their reponibilitie in offering it; and [d] that all parent are aware of NBS and their reponibility in protecting their child from any of the diorder. The highlight of the law and it implementing rule and regulation are: DOH i the lead agency taked with implementing thi law; Any health practitioner who deliver or ait in the delivery of a newborn in the Philippine hall prior to delivery, inform parent or legal guardian of the newborn the availability, nature and benefit of NBS; Health facilitie hall integrate NBS in it delivery of health ervice; Creation of NSRC at the NIH and etablihment and accreditation of NSC equipped with a NBS laboratory 8 ACTA MEDICA PHILIPPINA Vol. N. 9

4 Newborn Screening: Reearch to Policy and recall/follow up program; Proviion of NBS ervice a a requirement for licening and accreditation, the DOH and the Philippine Health Inurance Corporation (PHIC) Incluion of cot of NBS in inurance benefit Key Player in the Implementation There are major key player in the implementation of the NBS Program both at the national level and local level. The organizational chart for the national implementation of NBS (Figure ) how the major partnerhip of the DOH with NIH with the latter erving a technical partner. Table lit the dutie and reponibilitie of the variou agencie involved in the implementation of NBS a detailed in the Manual of Operation for National NBS Implementation. NBS i done at an NBS facility (NSF), defined a any health facility that offer NBS ervice to infant born either within the facility, it catchment area or elewhere, and ha operational recall/follow-up program for newborn with heritable condition. An NSF organize an NBS team who hall overee the implementation of the program and erve a linkage with the NSC. The NBS team, chaired by an Overall NBS Coordinator, overee the NBS proce, collection of ample, releae of reult, prompt recall and follow-up of poitive cae. The NBS team organize health education activitie to inform parent and client of the importance of NBS. If the NSF doe not have pecialit for the poitive cae, it i their reponibility to arrange the referral. The NSF can be a hopital with maternity ervice, lying-in clinic or outpatient clinic uch a rural health unit, health center and outpatient department of hopital. A of December 8, there are, NBS facilitie,, hopital, 98 birthing home, 5 RHU, and other facilitie offering NBS in the country. Home delivered babie are advied to go to the nearet NSF for NBS. In limited cae, NBS i done at home. In the pat year, the Center for Health Development (CHD) have taken a more active role in NBS implementation. The CHD have an NBS Program Dek at the CHD to addre problem and iue encountered in the day-to-day implementation of the program. Every CHD ha a regional NBS coordinator that review the performance of all facilitie in their repective region, organize training and orientation, and ait in the recall of patient with poitive creen and referral to expert. [Note: The Philippine ha CHD correponding to the political region.] In, the etablihment of the Newborn Screening Reference Center (NSRC) marked a major initiative in addreing the need of the NBS ytem. The NSRC wa enviioned to provide technical aitance to DOH and other NBS takeholder and aume a leaderhip role in examining the totality of the NBS ytem, including the neceary linkage to health facilitie and birthing home. The charge to the NSRC wa to review and evaluate the iue and challenge facing the nation NBS program and to make recommendation to trengthen the program. 5, During it four year of operation, the NSRC ha outlined major recommendation for national, local, and other technical partner in addreing the identified barrier and needed enhancement of the National Comprehenive Newborn Screening Sytem (NCNBSS). It ha appropriately involved many group and individual from within and outide the NBS, pediatric, and genetic communitie, repreenting a diverity of view and expertie. Today, manifetation of the NSRC recommendation are evident, many of which occurred in partnerhip with the DOH. Teting of ample i done at the NBS Center (NSC). The NSC i a facility equipped with a NBS laboratory that complie with the etablihed tandard and provide all required laboratory tet and recall/follow-up ytem for newborn with heritable condition. 5, There are currently NSC and a third one will open oon in Mindanao. Newborn Screening Statitic (996-8) A of December 8, there are,8, babie that have undergone NBS and baed on thee data, the incidence of the following diorder are: CH (:,58); CAH (: 8); PKU ( :,); Gal ( : 89,) and G6PD deficiency ( : 5). The program ha aved the following number of newborn from complication and/or death: 8 from CH, from CAH, 5 from Gal, from PKU and 55 from G6PD deficiency. Coverage A of December 8, the coverage of NBS remain low at %. The following reaon have been identified a caue for the low percentage of newborn population covered: ) not all health practitioner are yet convinced of the merit of NBS; ) mot parent do not yet fully undertand the merit of NBS; ) cot of creening; ) no penaltie for NSF not complying with the licening requirement; 5) there i no organized advocacy campaign. Additionally, the etimated percentage of hopital deliverie i only % of the total while the remaining 6% are delivered at home. Strategie are needed to target the home delivered babie. To enure that the NBS i made more acceible and affordable to the general public, DOH releaed a Department Memorandum on June, 8, etting the following target for NBS coverage at all health facilitie: % coverage for 8; 5% for 9; and 85% for. Thi action i in accordance with the national comprehenive NBS ytem move toward more utainable program implementation by increaing coverage and trengthening participation at all level and in both public and private health facilitie. Table preent the newborn creening tatitic on number of NSF, number of confirmed cae, number of newborn creened and national Coverage (996-8). Thee data how that by the end of December 8, only 5,5 babie were creened or only % of the. million etimated annual live birth. Thi i below the % target et by DOH for 8. Vol. N. 9 ACTA MEDICA PHILIPPINA 9

5 Newborn Screening: Reearch to Policy *Source: Philippine Statitical Yearbook **baed on Actual Live Birth ** **5 **6 ** **8,68,68,65,6,6,859,6,5,66,,,9,666,,669,,669,,669,,669,,669,,669, ,99,,,5,888 6,55 6,69 66,8 88,98 8,85 5,69 6,8 5, Year Live Birth* NSF Newborn Screened CH Table. Newborn Screening Statitic for the period ACNBS Office of DOH Secretary NCDPC NTWG Convener- NCPDC Member: Repreentative from the following: a. NIH b. NEC c. BSHF d. NCHP e. NCHFD f. DOH retained Hopital g. Private Hopital h. Philippine Society of Pediatric Metabolim & Endocrinology (PSPME) RHU/ HC/ BHS CHD LGU BHSF NSC DOH Retained Hopital Hopital (Ditrict/ provincial NIH NSRC ,,,555,58,99,889 8,5 999,9,8, 5,666 8,,6 5,5, CAH GAL PKU G6PD National Coverage % Confirmed Poitive Cae Figure. Organizational Chart of National Implementation of NBS after the enactment of RA No 988. Meanwhile, the incluion of NBS in the licenure requirement for health facilitie in 6 ha led to a dramatic increae in the number of NSF offering NBS ervice over the pat three year. Figure how the number of NSF by category per region a of December. The DOH continually appeal to all health profeional group to ait in increaing creening coverage. The Adviory Committee for NBS, chaired by the Secretary of Health, ha leader of health profeional group, among it member. Workhop, lecture, focued group dicuion are conducted year-round. In addition to their regular activitie, the DOH and the NIH launched a trimedia campaign in 8, including: TV, cinema, and radio commercial; printed advertiement in broadheet and tabloid; and ditribution and intallation of billboard in trategic location all over the country. Globally, NBS i conidered the mot ucceful population-baed genetic creening program that ha been integrated into the public health ytem. Mot developed countrie and ome developing countrie with coverage of % validate thi tatement. The Philippine mut take advantage of leon that can be learned from other NBS program. The Philippine program provide unique inight into trategie for improved implementation of the NBS program throughout the country uing the Center for Health Development (CHD) a the foundation. The program dek at the CHD wa etablihed to addre problem of implementation and offer trategie to key player of DOH. The CHD provide capability-building activitie to trengthen the knowledge of the health profeional a ACTA MEDICA PHILIPPINA Vol. N. 9

6 Newborn Screening: Reearch to Policy Table. Dutie and Reponibilitie of Agencie in the Implementation National level National Center for Dieae Prevention and Control (NCDPC) National Technical Working Group for Newborn Screening (NTWG- NBS) NIH through the NSRC Adviory Committee on NBS (ACNBS) (Office of the Secretary of the DOH) National Epidemiology Center (NEC) Bureau of Health Facilitie and Service (BHFS) National Center for Health Facility Development (NCHFD) National Center for Health Promotion (NCHP) Regional Level Center for Health Development (CHD) at the Regional Level Local Level Local government unit (LGU) and their health facilitie (LGU through the Chief of Hopital and Municipal Health Officer) Overee the operation and nationwide implementation of NCNBSS. Set the goal of the program for long-term and mediumterm target-etting and planning. Enure that all policie, guideline and tandard of the program adhere to overall internationally accepted tandard and ethical conideration. Serve a the technical partner of DOH in enuring the quality of ervice and utainability of the NCNBSS. Reponible for the national teting databae and cae regitrie, training, technical aitance and continuing education for laboratory taff in all NSC a tipulated in RA 988. ly review and recommend condition to be included in the NBS panel of diorder; Review and recommend the NBS fee to be charged by NSC; and Review the report of the NSRC on the quality aurance of the NSC and recommend corrective meaure a deemed neceary. Reponible for developing a urveillance ytem for heritable condition Reponible for regulating health facilitie performing NBS procedure through: a. Accreditation procedure and monitoring for compliance and quality aurance; b. Development of needed rule and regulation pertaining to the regulation of the ame; and c. Monitoring and evaluation of the NSC. Provide technical aitance and leaderhip for the continuou effective and efficient implementation of NBS in hopital in coordination with the Center for Health and Development (CHD) Act a the lead office in the promotion of NBS and hall develop advocacy material for diemination to all partner agencie (LGU, academe, NGO ) and takeholder Facilitate and collaborate with health center and hopital to fully implement the program at the local level. Enure that adequate and utained NBS ervice uch a information, education, communication, creening, recall and follow-up are being provided in all LGU Health facilitie (Rural Health Unit/ City Health Unit, Lying-in, City/Municipal/ Ditrict/ Provincial Hopital); Etablihe a functional cae management referral ytem with trategically acceible tertiary hopital; Etablihe coordination and networking among concerned agencie in NBS implementation; Monitor and evaluate the NBS implementation in their localitie; and Define creative financial package to make NBS acceible particularly among the economically deprived populace well a the relevant public on the importance of NBS. A of December 8, CHD-NCR and CHD-6 have demontrated the trength of CHD in the implementation. Likewie, CHD- NCR and CHD-6 take the lead in NBS coverage. Selected cae tudie provide model of ucceful implementation that can be ued in other part of the country. Data alo how that private-public partnerhip are integral to helping health manager/adminitrator and other health care provider reach their goal of increaed NBS coverage. A Performance and Evaluation Aement Scheme (PEAS) tool wa initiated in collaboration between the DOH and the NSRC to develop a uable Philippine PEAS, baed on the PEAS indicator and experience in the U.S. to help enure and improve NBS quality at regional and local NBS health facilitie. Two evaluation tool were enviioned: () an evaluation tool for CHD a regional implementer of NBS; and () an evaluation tool for NSF, a participant in the creening procee. Knowing the gap in program implementation, better guideline and policie can be crafted to augment exiting policie. Financing In order to make the NBS more acceible and affordable to the general public, the DOH iued Adminitrative Order 5-5 tandardizing the NBS Fee at P55 and etting the maximum allowable ervice fee at P5. 5 One year later, in 6, a tipulated in the law, NBS became a mandatory DOH hopital licening requirement. Likewie, NBS wa included a part of Philippine Health Inurance Corporation (PHIC) accreditation of health facilitie, and 9% of the creening cot i paid by the national ocial health inurance a part of the PHIC tandard newborn care package. NBS i included in the PHIC Newborn Care Package (NCP). NCP may be availed by any qualified PhilHealth dependent delivered in accredited hopital and nonhopital facilitie for Maternity Care Package that are certified a a newborn creening facility. However, there i a large gap between amount of PHILHEALTH utilization for the Maternal Care Package (MCP) covering the mother normal delivery expene and the Newborn Care Package (NCP). In the firt half of 8, there were only,96 claim worth.8 million Peo for NCP while there were 6,5 MCP claim amounting to million Peo (Figure ). Thi mean that the utilization of NCP i only le than % of the MCP and the newborn care package i far from being maximized. Several health facilitie and LGU have addreed NBS financing through innovative action in their communitie. Thee action include LGU that have allocated budget item for NBS upport payment that can be ued by their contituent, 6 local ordinance making NBS to all newborn mandatory, a partial prenatal payment cheme, 8 and incluion of NBS in the benefit package of community micro-health inurance policie, 9 among other. Financing initiative for NBS need to be explored further, Vol. N. 9 ACTA MEDICA PHILIPPINA

7 Newborn Screening: Reearch to Policy NCR 55 Tertiary 6 Secondary 65 Primary 9 Infirmary Birthing Home/Clinic 66 RHU/MHO/CHO/PHO Other Region Tertiary 5 Secondary Primary 5 Infirmary Birthing Home/Clinic RHU/MHO/CHO/PHO 9 Region 55 Tertiary Secondary 6 Primary 9 Infirmary Birthing Home/Clinic 5 RHU/MHO/CHO/PHO Other 5 Region A Tertiary 5 Secondary 6 Primary 9 Infirmary Birthing Home/Clinic 9 RHU/MHO/CHO/PHO Other Region B 6 Tertiary Secondary Primary Infirmary Birthing Home/Clinic 8 RHU/MHO/CHO/PHO Region 6 Tertiary Secondary Primary 6 Infirmary Birthing Home/Clinic RHU/MHO/CHO/PHO 5 Other Region Tertiary Secondary Primary 5 Infirmary 6 Birthing Home/Clinic RHU/MHO/CHO/PHO CAR 59 Tertiary Secondary 6 Primary Infirmary Birthing Home/Clininc RHU/MHO/CHO/PHO 6 Region 89 Tertiary Secondary Primary 8 Infirmary 6 Birthing Home/Clinic 9 RHU/MHO/CHO/PHO Region 5 86 Tertiary 8 Secondary Primary Infirmary 6 Birthing Home/Clinic 5 RHU/MHO/CHO/PHO Region 8 6 Tertiary 5 Secondary 9 Primary 6 Infirmary Birthing Home/Clinic RHU/MHO/CHO/PHO Other CARAGA 5 Tertiary 6 Secondary Primary Infirmary Birthing Home/Clinic 5 RHU/MHO/CHO/PHO 8 Region 8 Tertiary Secondary Primary 6 Infirmary Birthing Home/Clinic 6 RHU/MHO/CHO/PHO Region 9 56 Tertiary 6 Secondary 5 Primary Infirmary 5 Birthing Home/Clinic RHU/MHO/CHO/PHO ARMM 5 Tertiary Secondary Primary Infirmary Birthing Home/Clinic 9 RHU/MHO/CHO/PHO Region 69 Tertiary 8 Secondary Primary Infirmary Birthing Home/Clinic RHU/MHO/CHO/PHO Region Tertiary Secondary 8 Primary 9 Infirmary 9 Birthing Home/Clinic 56 RHU/MHO/CHO/PHO 9 Figure. Number of Newborn Screening Facilitie (NSF) by Category per Region a of December 8. ACTA MEDICA PHILIPPINA Vol. N. 9

8 Newborn Screening: Reearch to Policy Figure. Utilization of Maternal Care Package and Newborn Care Package, t Semeter 8 (Source: Dr. Giovanni M. Roan, Benefit Development & Reearch Department, PhilHealth). particularly, variation of community financing action that have been ucceful in everal communitie. Proper documentation and reearch into thee method will be ueful in replicating thee activitie in other communitie. Community and family empowerment through prenatal education can alo help parent plan and prepare for the cot of NBS. Partnerhip with private organization and linkage with micro-finance intitution may alo provide a framework to addre financing concern. Future Direction In 8, approximately 5, or % of. million newborn were creened in the Philippine. Thi i far below the % DOH target for 8. If all babie were creened, approximately, babie could be aved annually from advere conequence of the five metabolic diorder. The challenge i to trengthen the NBS program at the community level in order to capture and ait all newborn with metabolic diorder. Today, the lead agency for implementing NBS, the DOH, it partner, and other program takeholder, remain aggreive in their effort to increae the coverage of creened babie acro the nation, and to enure quality tandard in the implementation of the NCNBSS. In September 8, NBS wa included in the maternal and newborn ervice package a eential ervice for the newborn through an Adminitrative Order on Rapid Reduction of Maternal and Newborn Death in the Philippine to fully intitutionalize the program. The program trategic direction i geared toward promoting awarene on NBS and increaing the number of newborn creened in the community by identifying and electing additional key player that have powerful influence at the graroot level uch a the midwive, women organization, and other interet group in the informal ector. Exploring the poibility of etablihing partnerhip with thee organization in advocating for NBS and enuring effective implementation of the NBS program at the community level will bring valuable contribution toward achieving our goal of aving more Filipino newborn. One of the major effort of DOH to encourage good performance on health delivery ervice and increae NBS coverage in LGU i to provide performance-baed grant. Thi grant i aeed againt a et of priority indicator for public health. The incluion of NBS in the aement criteria will erve a leverage for the LGU to make ure all their MCP accredited facilitie are performing NBS package. Program evaluation criteria are alo continuouly developed and applied to determine whether intervention are having the intended effect and which component contribute mot to the overall effectivene of the program. The DOH i continuouly working on improving regulatory ytem to enure trict implementation of the Law and the IRR and trengthen the capacity of the CHD and LGU in regulatory and monitoring apect. Furthermore, DOH and NIH are currently working on the expanion of reference laboratorie to make NBS acceible through the etablihment of Newborn Screening Center in Mindanao and G6PD confirmatory center in every region. While financing remain a challenge, the DOH and PHILHEALTH will need to work cloely to improve coverage of enrolment in the national health inurance ytem epecially among the indigent and include NBS ervice in the Provincial/Municipal Invetment Plan for Health. PHILHEALTH alo need to improve information diemination on what are the benefit package available for their client and the reimburement procedure for health facilitie and health practitioner need to be clarified. Empowerment through education can alo be helpful in helping parent plan and prepare for the cot of having their baby undergo newborn creening. Specifically, DOH trongly advocate for the development of a birth plan for the pregnant women. A birth plan i being done to determine where the woman will deliver, what tranportation he will ue, what thing he will prepare and what ervice he and her newborn hould be entitled to which include NBS. A Women Health Team or Barangay Health Team provide guidance to the expectant mother. The CHD will continuouly provide capability building activitie to increae the knowledge of the health profeional a well a the parent on the importance of NBS. Vol. N. 9 ACTA MEDICA PHILIPPINA

9 Newborn Screening: Reearch to Policy Reference. American Academy of Pediatric, Newborn Screening Tak Force. Serving the family from birth to the medical home - Newborn creening: a blueprint for the future. Pediatric. ;6(uppl):8-.. Guthrie R, Sui A. A imple phenylalanine method for detecting phenylketonuria in large population of newborn infant. Pediatric. 96; :8-, 96.. Bickel H, Gerrard J, Hickman EM. Influence of phenylalanine intake on phenylketonuria. Lancet. 95;65:8-8.. Therrell BL. U.S. Newborn creening policy dilemma for the twentyfirt century. Molec Genet Metab. :; Therrell BL, Panny SR, Davidon A, et al. U.S. newborn creening ytem guideline: tatement of the Council of Regional Network for Genetic Service (CORN). Screening. 99;: Pa KA, Lane PA, Fernhoff PM, et al. U.S. Newborn Screening ytem guideline II: follow-up of children, diagnoi, management and evaluation tatement of the Council of Regional Network for Genetic Service (CORN). J Pediatr. ;:S-6.. McCabe LL, Therrell BL, McCabe ERB. Newborn creening: rationale for a comprehenive, fully integrated public health ytem. Molecular Genetic and Metabolim. ;: Padilla C, Domingo CF. Implementation of newborn creening in the Philippine. Phil J Pediatr. ;5:-. 9. Child Health and Development Strategic Plan Year -. Available at Acceed on February, 9.. DOH Adminitrative Order a,. Policie on the Nationwide Implementation of Newborn Screening, January,.. DOH Department Order No. 9-C,. Creation of the National Technical Working Group on Newborn Screening Program, February,.. DOH Department Order No. S.. Strengthening Implementation of the Newborn Screening Sytem, December 9,.. Proclamation No. 5. Declaring the t Week of October of each Year a National Newborn Screening Week, January,.. Republic Act No 988 or Newborn Screening Act of. Available at Acceed on February, DOH Circular No... Rule and Regulation Implementing Republic Act No.988 otherwie known a the Newborn Screening Act of. October,. 6. DOH Memorandum. Authorized Newborn Screening Center. October 8, 5.. PhilHealth Board Reolution No. 95, S.6. Reolution approving the Newborn Care Benefit Package, July 6, DOH Memorandum. Newborn Screening Grant for Pediatric Endocrinologit and Clinical Geneticit, January,. 9. DOH Department Memorandum No. 8-. Newborn Screening Coverage. June, 8.. DOH Adminitrative Order No Addendum to the Rule and Regulation Implementing Republic Act No. 988, otherwie known a the Newborn Screening Act of.. DOH Adminitrative Order No. 8-6A. Amendment to the Adminitrative Order No. 8-6 on Addendum to the Rule and Regulation Implementing Republic Act No. 988, otherwie known a the Newborn Screening Act of.. Bailio JA, Caiño MTP, Etrada SC, Sur ALD. Manual of Operation of the National Comprehenive Newborn Screening Sytem. Philippine. 5.. Maternal & Child Health NSM Preentation, 6. Available at Acceed on February, 9.. DOH Department Memorandum No. 8-. Newborn Screening Coverage. June, DOH Adminitrative Order No Cot for the Newborn Screening & Maximum Allowable Service Fee for the Collection of Newborn Screening Sample in all Newborn Screening Collecting Health Facilitie. February 8, The Lipa City NBS Experience. Newborn Screening Publication Volume, No.. October-December.. Provincial Tax Ordinance No. - Serie of. An Ordinance amending Provincial Tax Ordinance No.9- S. 99, otherwie known a the Revied Provincial Revenue Code of the Province of Negro Occidental, November. 8. BCMH policie puh coverage to 9%. Newborn Screening Newletter Volume, No.. January-March PESO for Health. Available at Acceed on February, 9.. DOH Adminitrative Order No Implementing Health Reform for Rapid Reduction of Maternal and Neonatal Mortality, September 9, 8. ACTA MEDICA PHILIPPINA Vol. N. 9