Resilience in the time of pandemic: The experiences of NBS implementers

Newborn screening is an essential preventive public health program for the early detection of congenital disorders in newborns that may lead to mental retardation or even death if left untreated. It is performed shortly after 24 hours of the birth of the baby in hospitals, lying-ins, rural health units, health centers, and private clinics.

If screened positive in one of the disorders, the baby undergoes a confirmatory test and is subsequently followed up for management. Administration of the necessary treatment and management is the reason why newborns need to be screened immediately. Hence, the COVID-19 pandemic is a huge challenge in the provisions of newborn screening services. The lockdowns in many areas of the country, suspension of transportation services including air travels, non-operation of major couriers, and closure of borders in some provinces have posed challenges to the newborn screening program. Program implementers were faced with delays in the transmittal of newborn screening samples, significant decrease in the newborn screening sample receipt, overwhelming number of late samples, delay or cancellation of confirmatory testing, and suspended follow up visits of patients. Managing the operations at different levels was and continues to be a tough task.

To weather the storm, newborn screening program leaders quickly stepped up to respond and coordinated mitigation plans effectively and efficiently. Throughout the pandemic, all newborn screening centers (NSCs), regional newborn screening teams at the Department of Health - Centers for Health Development (CHDs), newborn screening continuity clinics (NBSCCs), and newborn screening facilities (NSFs) in the country remained operational and employed various strategies while observing standard protocols in continuously giving quality newborn screening services.

The recently concluded newborn screening virtual convention featured the best practices of some program implementers during the crisis. The Newborn Screening Reference Center keeps several stories of innovations - from the Newborn Screening Bayanihan Strategy in Northern Luzon, the active social media campaigns of Central Luzon, release of certifications for checkpoints in Southern Luzon, and extension of credit line in the Visayas, among others.

Newborn Screening Center - Mindanao

The NSC Mindanao and the CHD teams organized a system to help bridge the gaps and establish alternative plans to keep the program afloat in Mindanao.

The CHD Zamboanga formed a special task force on newborn screening. It also coordinated with the Office of City Mayor Isabelle Climaco-Salazar for the weekly transport of samples to the NSC. The Edwin Andrews Air Base and the Philippine Airforce Western Command made possible the airlifting of samples, medical milk supplies, and pertinent documents to and from Region 9 via military aircrafts.

Meanwhile, the CHD Northern Mindanao, together with city health offices and selected facilities, served as drop-off and pickup locations within the region. With lockdown protocols in place, the CHD and NSC Mindanao teams met at the border checkpoints of Davao City to turn over specimens and documents once a week. In three months’ time, Region 10 was able to deliver a total of 12,417 samples.

In Davao, many health facilities within Davao City hand carried samples to the NSC. The CHD 11 NBS team assisted these facilities using its service vehicles. A temporary delivery system was also established through the assistance of the different provincial DOH Offices. The Sta Rita Maternity Clinic, Isaac Robillo Memorial Hospital, Dr Lorenzo Principe Clinic and Malita District Hospital also volunteered as drop-off facilities.

Since vehicles were not allowed to enter Davao City, the NSC Mindanao requested the Viacrucis Medical Hospital to serve as drop-off points for Sultan Kudarat Provincial Hospital's samples. The assigned staff from both facilities met at the border of Davao del Sur and North Cotabato Province.

DOH vehicles and provincial ambulances were used to enter the border from the south. Along with provincial hospitals in Sultan Kudarat, and North and South Cotabato, they formed the backbone of the ENBS task force in the SOCCKSARGEN region.

The DOH CHD Caraga used the provincial DOH offices as drop-off and pickup locations. The NBS team of CHD Caraga and NSC Mindanao met at the northern border checkpoints of Davao City once a week.

The Maguindanao and Lanao del Sur areas of the Bangsamoro Autonomous Region in Muslim Mindanao were serviced by the CHD 9 and 12, respectively. The DOH-CHD 9 also transported samples of health facilities from Basilan and Tawi-tawi provinces. With the help of the Integrated Provincial Health Office Sulu, samples from Sulu were transported directly to Davao City courtesy of the Philippine Airforce Tactical Squadron Operations of Jolo, Sulu.

DOH Center for Health Development - Bicol

A series of consultations was held with several stakeholders, i.e. provincial health offices, city coordinators, health facilities, external partners, COVID team, and other internal stakeholders to discuss strategies to ensure the Business Continuity Plan (BCP) for the ENBS.

The CHD 5 immediately transitioned from conventional in-person activities to online orientations, meetings, trainings, advocacy activities, webinars, and other forms of technical assistance.

On the logistics side, the CHD 5 created and operationalized the timely receipt and sending of ENBS and confirmatory samples from health facilities to the NSC National Institutes of Health in Quezon City. It facilitated the delivery of kits from the NSC to the health facilities, and the delivery of essential medical supplies, foods, supplements to patients, among others.

Pira Hospital Cabugao, llocos Sur

Difficulties emerged regarding the transport of specimens and obtaining of filter kits on time from the NSC Northern Luzon in Mariano Marcos Memorial Hospital and Medical Center, Batac, llocos Norte, which is situated in another province.

Bless Macugay, chief medical technologist of Pira Hospital, goes to the border and hands over properly sealed specimens to the one manning the border from NSC. In turn, that personnel bring the specimens for testing at the NSC.

The Pira Hospital also used the acronym COVID to characterize the goals of the program - C for communication, O for obedience, V for vigilance, I for innovation and creativity, and D for diligence in performing timely screening.

Newborn Screening Continuity Clinic - Cebu

The Newborn Screening Continuity Clinic (NBSCC) is an ambulatory clinic based in a tertiary hospital identified by the DOH to be part of the National Comprehensive Newborn Screening System Treatment Network. One of the NBSCCs is located in Cebu, hosted by the Vicente Sotto Memorial Medical Center (VSMMC) serving 497 patients including those in Bohol, Dumaguete, Siquijor, and the entire Cebu Province.

Faced with challenges during the COVID pandemic, such as difficulty in recall of patients; non- compliance with follow up, treatment, and laboratory monitoring; travel restrictions; and low supply of medicines and medical food, the NBSCC in Cebu immediately transitioned to telemedicine and activated networks of referral in the region for patient monitoring. It currently uses text messaging, phone calls, and video calls through different online applications for remote patient monitoring and clinical validation together with sub-specialists (pediatric endocrinologists and metabolic specialists), and dietitian-­nutritionists. It also refers patients to the DOH-CHD, RHUs, or satellite clinics in some provinces either for follow ups or home visits.

Supply and logistics for medicines and medical food for patients were coordinated with the Institute of Human Genetics (IHG)- UP Manila, DOH-CHD 7, Office of the Civil Defense, Philippine National Police, and Philippine Air Force.

There are valuable lessons emerging from the current crisis. It has been proven time and again that collaborations among program partners, supporters, and those who lend their hand especially during the time of crisis can make a positive difference. COVID-1 9 is a threat but, at the same time, an opportunity for having efficient and effective continuity plans and creative strategies that allowed the newborn screening implementers to continue fulfilling their essential roles in ensuring the health and well-being of the most vulnerable in the populace - the newborns.#

First published on Philippine Star, October 18, 2020

MEDIA RELEASE

Newborn Screening Reference Center @newbornscreenph

National Institutes of Health - UP Manila

https://newbornscreening.ph

info@newbornscreening.ph

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Navigating the path towards a successful ENBS amidst challenges

"The pandemic has disrupted our usual protocols and systems, but the poorest and most vulnerable feel the inequalities more so than others. These are mothers who have no access to quality healthcare; babies who are born in less desirable environments:' said Vice-President Maria Leonor Gerona Robredo in her keynote address during the opening of the first ever virtual National Newborn Screening Convention on October 14.

Robredo cited data from UNICEF stating that an estimated 116 million babies will be born under the shadow of the pandemic and this should not stop the new families from getting support and access to primary care.

She then challenged the participants to keep protocols and systems in place to protect not only mothers and their babies but also frontliners who are their primary caregivers; to continue expanding services that can cover indigent families; and to ensure that patients and their families are properly informed and supported when their test comes back positive. She believes that the tasks are daunting and encouraged everyone to continue to find ways to extend service and build together a better future for the next generation.

Held on October 14-15, 2020, the 18th National Newborn Screening Convention attracted over 6,000 registrants composed of health professionals, program implementers, partners, and advocates of the newborn screening program. 1his year's theme, "Navigating the Path Towards a Successful Expanded Newborn Screening Amidst Challenges" was inspired by the exemplary response of the program stakeholders to the COVID-19 pandemic. The two-day event was organized by the Newborn Screening Society of the Philippines (NSSPI) and the University of the Philippines (UP) Manila through the Newborn Screening Reference Center (NSRC).

This was the first time that the convention was held online since it started in 2001. Notwithstanding the COVID pandemic, NSSPI still aimed to provide education, technical updates, and share best practices on newborn screening operations. 1his year's convention was also in honor of the life and strong leadership of NSSPI President Dr. Ephraim Neal Orteza, who passed away last April 8 due to COVID-19. Orteza had served as president from 2015 until his death.

Overall Program Chair and NSRC Director Dr. Noel Juban welcomed the participants and presented the status of the program after the implementation of expansion in the number of disorders being screened from 6 to 29 [expanded newborn screening], its continuing challenges, and the efforts to address them. "With the present national and global situation related to the Covid-19 pandemic, we, [the] newborn screening advocates, have continued giving our services towards our goal of saving every Filipino child from mental retardation and death;' he said.

UP Manila Chancellor Dr. Carmencita Padilla, one of the conveners of the newborn screening program in the Philippines, presented the strategic framework for the implementation of the Expanded Newborn Screening (ENBS) in the country, the strategies to be undertaken to attain the targets set in the framework, and the significant roles of the different program stakeholders.

Meanwhile, the plenary sessions featured the following topics: endocrinology, metabolic, hematology, genetic counseling, nutrition, and the resilience and solidarity of the various levels of newborn screening implementers as they responded to the challenges brought about by the pandemic.

In the plenary session on endocrinology, Dr. Lorna Abad, Chair of the UP-Philippine General Hospital Department of Pediatrics, presented the basic facts on Congenital Hypothyroidism (CH). She also differentiated between transient and permanent congenital hypothyroidism. Dr. Sylvia Estrada, Chair of the Newborn Screening Expert Committee on Endocrine Disorders, shared the prevalence and importance of early detection and treatment of Congenital Adrenal Hyperplasia (CAH). She also shared the hindrances in CAH care and current efforts to lessen these such as holding regional newborn screening clinics in collaboration with the Philippine Society of Pediatric Metabolism and Endocrinology (PSPME).

With the metabolic medicine in focus, two clinical geneticists, Dr. Leniza de Castro-Hamoy and Dr. Mary Ann Abacan, presented Tyrosinemia Type I and Glutaric aciduria Type I, respectively. Both are autosomal recessive disorders of amino acid metabolism which result in primarily hepatic, but also renal, skeletal, and neurologic manifestations. They also talked about the importance of early detection, proper management to prevent life-long complications, and the need to continue advocating for patients with rare diseases to make sure that treatment and medications become more accessible to the patients.

Day 1 ended with a plenary session focusing on Hemoglobinopathies. Drs. Maria Beatriz Gepte and Reynaldo de Castro, both hematologists from the Philippine Children's Medical Center (PCMC), correspondingly presented the prevalence in areas endemic to malaria of Alpha Thalassemia where the more severe forms are present, and the challenges of blood transfusion in Beta Thalassemia. Gepte highlighted the importance of physician, community education, and genetic counseling to prevent long term complications, development of more severe disease, and further perpetuation of alpha thalassemia in the population. De Castro on the other hand, emphasized significant health concerns as well as the economic impact of beta thalassemia.

Day 2 of the convention started with a plenary session that focused on the importance of evaluating and understanding a family's risk of an inherited medical condition through genetic counseling. Genetic counselors Dr. Ma-Am Joy Tumulak, Angela Pascua, and Peter James Abad emphasized the value of information and support to families affected by or at risk of a genetic disorder. Tumulak stressed the importance of a multidisciplinary team of doctors, nurses, social workers, therapists, and genetic counselors in the holistic management of the patients. She mentioned the role of genetic counselors in providing a unique opportunity for the family to receive continuous support, information, and continuity of care. Pascua cited that genetic counseling will help replace misconceptions about the causes of genetic diseases and promote psychological well­being and adaptation to the genetic condition or risk, specifically in hemoglobinopathies. Abad, on the other hand, focused on the crucial phase of disclosing the bad news and how primary care providers can best approach the relaying of information to families in a sensitive, respectful, and empathic manner.

The plenary session on nutrition featured practitioners of metabolic dietetics and developmental pediatrics. Aster Lynn Sur, dietician and metabolic nurse, discussed the history of metabolic dietetics and the critical role of dietitians in the management of patients with inborn error of metabolism (IEM). She mentioned the challenges faced by metabolic dietetics, including professional standards, development of outcome-based treatment guidelines and protocols, research and development, and local and international collaboration, among others. Jeanne Ruth Basas, metabolic dietician, tackled the challenge of IEM dietary management during the time of the pandemic. She specified difficulties in securing adherence to patients' nutritional management, transition from face to face consultation to telemedicine, and procurement of food and medicines for patients. Dr. Kaye Napalinga, developmental and behavioral pediatrician, discussed the techniques in improving the feeding experience of the child. She emphasized that feeding infants and young children not only ensures physical growth but shapes their emotional and social development.

In the last plenary session, four program implementers presented how they provided the newborn screening services amidst the challenges brought about by COVID-19. They shared what drove them to continue implementing newborn screening and how they responded to the challenge from collection to transmission, to testing and management of positive patients. It also featured how the DOH Center for Health Development responded to lessen the operational gap in the provision of newborn screening services in the region. Dr. Conchita Abarquez, Head of lhe Newborn Screening Center-Mindanao, Dr. Ma. Rita Anne Salve Boligao, Follow-up Head of the Newborn Screening (NBS) Continuity Clinic in Vicente Sotto Memorial Medical Center (Cebu), Dr. Monrey Isaiah Mancilla, Newborn Screening Program Manager of Bicol Center for Health Development, DOH, and Dr. Maria Alejandra Narcelles, NBS Coordinator of Pira General Hospital, Cabugao, Ilocos Sur, shared how the significant disruption of the operations of newborn screening required each of them lo adapt lo adversity and maintain resiliency during the pandemic.

The National Newborn Screening Convention, held every year in October, convenes participants from different health professions to learn from local and international experts, program consultants, and program implementers. The theme constantly follows the theme of the Newborn Screening Awareness Week Celebration every first week of October in accordance with Presidential Proclamation No. 540 issued by then President Gloria Macapagal on January 20, 2004.

First published on Philippine Star, October 18, 2020

MEDIA RELEASE

Newborn Screening Reference Center @newbornscreenph
National Institutes of Health - UP Manila
https://newbornscreening.ph
info@newbornscreening.ph

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PhilHealth introduces Expanded Newborn Care Package

In support of the National Comprehensive Newborn Screening System, the Philippine Health Insurance Corporation, Inc., or PhilHealth, recently released PhilHealth Circular No. 2018-0021, expanding its coverage of essential health services for newborns.

In the circular, which will take effect on January 5, 2019, the PhilHealth introduced the enhanced Newborn Care Package, increasing the amount of coverage from PHP 1,750.00 to PHP 2,950.00. The new

cost pays for supplies for essential newborn care, such as Vitamin K, eye ointment, and vaccines for hepatitis B and BCG. Included also are the Expanded Newborn Screening (ENBS) Test, Newborn Hearing Screening Test, and fees for attending professionals. 

The PhilHealth circular provides that the enhanced package shall be dispensed to qualified newborns delivered in all accredited health care institutions that perform deliveries and provide newborn care, which include hospitals, infirmaries/dispensaries, and birthing homes/lying-in clinics.

To ensure entitlement to the said benefit, newborns need to be in the facility for at least 24 hours after birth, except those who warrant immediate referral to a higher level facility. The state health insurer encouraged all active and expecting PhilHealth members to avail themselves of the said package in order to provide newborns with the needed services that will help reduce morbidity and mortality while reducing health care costs associated with treatment of lifelong debilitating conditions.

FAQs on PhilHealth Newborn Care Package

Press Release PhilHealth

Published in Newborn Screening
Official Newsletter of the Newborn Screening Reference Center
NSRC-NIH, UP Manila

November-December 2018 Issue

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