Promoting NBS Awareness through Hospital-based Strategies

Written by Robin Charles Ramos 

Saving the future of our babies lies in our hands.

Undergoing newborns to the newborn screening test (NBS) partially fulfills what has been agreed in the Fourth Millenium Development Goal (MDG) – Reduce Child Mortality. Through the program, we can save lives of our children through early detection of metabolic disorders. Congenital metabolic disorders are genetic diseases which do not physically manifest at birth but can lead to detrimental effects to the child such as mental retardation or death. These effects can only be averted with early detection and therapy. 

As a VYLH-Philippines volunteer, my active involvement in the advocacy, since I was trained to educate people especially the youth about the program, has allowed me to find my niche. Though I am not a medical or health professional, I see the importance of participation by playing an important role in educating the community about the program and its importance. I believe that relevant and basic information is the key towards successfully reaching zero-rate newborn fatality and a hundred percent newborn screening coverage.

Valencia Sanitarium and Hospital Foundation in Valencia City, Bukidnon
(Photo Credits: VSH Facebook Page)

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Valencia Sanitarium and Hospital spearheads G6PD Forum

Written by Robin Charles Ramos
Originally Published in VSH's Lifeline Weekly Vo. 1 No. 15

Sixty-five parents and their children participated in the 1st G6PD Forum spearheaded by VSH on August 29, 2013 at the VSH Conference Room. Out of the 80 VSH G6PD deficiency cases confirmed through newborn screening, 30 were being represented by either a parent or a close relative. The rest of the 65 participants came from other health facilities within Valencia City.

“We felt a great need to promote newborn screening and at the same time answer the many questions lingering in the minds of parents with G6PD deficient children. And we felt that organizing this forum will be a big help", Mrs. Lylibeth Halasan, the VSH Chief Medtech and one of the main organizers of the program explained". As such, we invited Dr. Conchita G. Abarquez, a pediatrician and the only geneticist in Mindanao to be our guest speaker", she added. Dr. Abarquez currently heads the Newborn Screening Center – Mindanao based in Davao City.

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VYLH expands network in UP Diliman

Written by Gina Valera

The Volunteer Youth Leaders for Health (VYLH) UP Diliman Chapter conducted an orientation for invited university organizations last August 16 at the Institute of Biology Pav 4. The event was attended by 32 students from UP Diliman belonging to six different organizations namely: UP Psychology Society, UP Buklod-Isip, UP Red Cross Youth, UP Zoological Society, UP Pre-Medical Honor Society, and Philippine Association of Nutrition – Alpha.

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Med Mission 2013: Lingkod-Alay ng GeneSoc

Written by Gessa Ramos

Last July 28, one of the pioneer organizations of VYLH-Philippines and the coordinating group of the UP Los Banos (UPLB) Chapter, The UPLB Genetics Society (GeneSoc), conducted its annual medical mission at Barangay Bagong Silang, Los Banos, Laguna - a community located within the Mt. Makiling Forest Reserve which can only be reached through a horse backride or a hike. GeneSoc's Medical Mission was held in connection with the organization’s outreach program and advocacies. 

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All set for Expanded Screening Program

Health Promotion Update No. 2 – Series 2013
Health Promotion and Advocacy Working Group

Newborn Screening Newsletter (March-April 2013 Issue)

Photo credits: Newborn Screening Reference Center

To save more babies, the Department of Health (DOH) Advisory Committee on Newborn Screening (ACNBS) has approved the implementation of the expanded newborn screening. Starting January 2014, the expanded panel will include hemoglobinopathies and additional metabolic disorders, namely, organic acid, fatty acid oxidation, and amino acid disorders. All these conditions can be treated at birth, avoiding complications of no treatment.

Data of Filipino newborns screened in the California newborn screening program from 2005 to 2009 have prompted the formal recommendation of expanded newborn screening program in the Philippines to the ACNBS on January 16, 2012. The data revealed that of the 111,127 Filipino newborns screened, more than 20 disorders were identified to be present—a mix of endocrinologic and metabolic conditions as well as hemoglobinopathies. The necessary confirmatory centers and network for referral, management, and treatment of patients are now being set up in strategic areas in the country. The DOH already has a list of nominated hospitals to house the Newborn Screening Follow-up Clinics (NFCs) . The establishment of NFCs will ensure capable management of identified positive cases.

Initially, one NFC will be setup per region. The NFCs will coordinate with a team of specialists and subspecialists. Due to the shortage of some of the subspecialists, teleconsultations will be one of the features of this clinic.A more intensive advocacy to reach the general public will be launched on October 2013, targeting provincial and marginalized urban communities with a high rate of homebirth needs. A new set of campaign materials will be released, emphasizing the value of responsible parenthood.

Expanded newborn screening will be optional and will be offered to parents in all participating facilities with the following options:

Option 1: Six (6) disorders (CH, CAH, GAL, PKU, G6PD, and MSUD) at P 550.
Option 2: The full complement of the disorders at P 1,500

The cost of newborn screening, which is now at P 550, is presently included in the newborn care package for members of PhilHealth. There are ongoing discussions with PhilHealth management to increase the subsidy for the expanded newborn screening. VMendoza

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Ms. Vina Mendoza is the Managing Editor of Newborn Screening, the official newsletter and bimonthly publication of the Newborn Screening Reference Center - National Institutes of Health, UP Manila.

Visit newbornscreening.ph, the Official Website of the Newborn Screening Reference Center to get the latest copy of Newborn Screening.

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Youth on fire: VYLH marks four years of advocating health

Written by Joan Mae Barredo*

July 18, 2009. A challenge was accepted.

July 18, 2013. Four years after, the commitment, our commitment, is still on fire. Igniting, better than ever. Young health advocates all over the nation came together as we celebrated the Volunteer Youth Leaders for Health or the VYLH-Philippines’s fourth anniversary. Distance was not even a hindrance as VYLH from different clusters—Luzon, Visayas, and Mindanao—bonded in solidarity as we commemorated our four years of health advocacies, four years of volunteerism, and four years of solid friendship.

“As we celebrate our 4^th anniversary in our own unique and creative ways, may it be true to all to light four white candles representing our growth, and fly four VYLH colored balloons, where our wishes are tied,” states VYLH Philippines President Christian Emmanuel Enriquez.

VYLH-Philippines Annual Skype Gathering
 (Photo credits: Ms. Anna Lea Millares RN, inset)

United by the common objective to empower the youth for health and the goal to have a more health-conscious community, youth leaders gathered in each cluster marked VYLH’s four years through simple gatherings, happy chitchats via Skype, and commemorative “selfies” posted on Facebook days before the actual celebration.

Youth Leaders’ says

Christine Querubin, VYLH NCR Vice President enthuses, “friendship is one of the greatest treasures in life and I have gained hundreds of amazing friends because  of VYLH. The best part is that we share the collective desire to become harbingers of change and for four years now, we have become the change we want to see in the world.”

Irish Faith, from VYLH Mindanao, agrees through sturdy statements, “VYLH: good desire, good constituent, strong connection.” Remarkable events and accomplishments have colored the past four vibrant years of VYLH: a youth camp in Tagaytay, another three cluster-wide camps in different areas in the country, two nationwide congresses, among others. Amidst these gatherings, there’s the diverse activities each volunteer conducts in various institutions and communities, carrying VYLH’s three main advocacies: folic acid awareness campaign, newborn screening promotion, and orphan disorders support. This November, VYLH will once again exhibit the magnitude of deed youth can do during the International Conference on Birth Defects and Disabilities which will be held in Cebu.

We continue to expand and reach more volunteer youth leaders in every corner of the country, all in the name of a more informed and healthy Philippines. And as we embark the next four years and more of our journey, we remain steadfast to the commitment we have made during that rainy day, 18^th of July, four years ago.

Related article: Message of the National President on the observance of the 4th VYLH-Philippines Founding Anniversary

Related video: Anniversary Greeting from VYLH-Philippines National and Cluster Advisers

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*Joan Mae Barredo is the former Coordinator for Advocacy and Development of the Social Awareness and Community Service Involvement (SACSI) Office of Ateneo de Zamboanga University (ADZU). She finished her BS Mass Communications degree in ADZU last 2011. Joan became affiliated to VYLH-Philippines as a representative of her university to the 2010 VYLH-Philippines Mindanao Island-wide Camp.
**Video credits: Christine Querubin and Joan Barredo

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VYLH-Philippines Fourth Anniversary Message from the National President

Indeed we have come a long way.

As we celebrate this year’s growth, I would like to share four points that I think we should remember.

Value

Let us value the things that matters. Each of us has different experiences as volunteers. May we value the real essence of what we are fighting for.  May we also value the people who are with us as we move forward, and value the growth we have had for the last four years.

Yearn

May we continue to have a strong and genuine desire to continue what we have started despite the difficulties and struggles we face in everyday. May we yearn to do more, to give more, to share more, and to live more for the good of oneself and others.

Learn

May we seek not just knowledge but rather wisdom for all the experiences that we have. May we continue to learn from each other’s stories and challenges.  May we continue to advocate the power of the youth to educate and become agents of change for a better, brighter and healthier Philippines.  And, may we continuously seek to learn and not limit ourselves to what we are accustomed to.

Hope

May we find hope amongst ourselves that despite the difficulties and challenges of being one at all times. May we find hope in the cause that we are fighting for, and draw strength from within as we continue to move forward towards further growth and development.  May we also find hope from every individual that we meet because there will come a time that things will be better off as they are now.

As we celebrate our 4th anniversary in our own unique and creative ways, may it be true to all to light four white candles representing our growth, and fly four VYLH colored balloons, where our wishes are tied, before sun sets at the end of this week.

May every VYLH cluster/division let go of their wishes for the organization and offer the purest of our intentions to the Almighty.

My heartfelt gratitude for the opportunity of being one among the few to be part of an organization one can always be proud to call our own despite the distance or challenges which everyone may find on their way back to a place we call home.

Happy 4th Anniversary VYLH!

In humble representation of your great accomplishments, my salutations and congratulations for another successful year full of values, yearning, learning and hope

With much honor,

Christian Emmanuel "Kuya Emman" P. Enriquez RN
VYLH-Philippines National President

2012-2014

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Originally posted at the President's Facebook account.

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Enhancing Case Detection of Selected Inherited Disorders through Expanded Newborn Screening in the Philippines

Health Promotion Update No. 1 – Series 2013

Health Promotion and Advocacy Working Group

Acta Medica Philippina 47(1) 2013

Carmencita D. Padilla*1,2
*Tomas B. Aguirre Professorial Chair in Pediatrics

1Department of Pediatrics, College of Medicine and Philippine General Hospital, University of the Philippines Manila
2Newborn Screening Reference Center, National Institutes of Health, University of the Philippines Manila

ABSTRACT

Background. Newborn screening in the Philippines currently includes screening for 6 disorders – congenital hypothyroidism (CH), congenital adrenal hyperplasia (CAH), phenylketonuria (PKU), glucose-6-phosphate dehydrogenase (G6PD) deficiency, galactosemia (GAL) and maple syrup urine disease (MSUD). With improved newborn screening technologies, the potential of screening more than 70 disorders has become a possibility. Worldwide, there has been a move towards increasing the number of disorders included in newborn screening panels. The California Newborn Screening Program (CNSP) screens for over 70 disorders and its database includes a large number of Filipino newborns.

Objectives.  To describe the profile of Filipino newborns screened through the CNSP and to extrapolate these data to the Philippine newborn population in order to assess the potential value of expanding the Philippine newborn screening program.

Methods.  The newborn screening database of the CNSP was reviewed. Projections based on the California data were made relative to expanded newborn screening and related outcomes in the Philippines.

Results. From 2005 to 2011, a total of 3,460,839 newborns were screened in the CNSP which included 111,127 Filipinos. Among the Filipinos, there were 199 confirmed having one of the screened disorders categorized as follows: endocrinologic disorders (51); hemoglobinopathies (109); amino acid disorders (6); organic acid disorders (7); fatty acid disorders (10); and other disorders (16). Extrapolating these findings to the Philippine newborn population predicts the detection of significant additional cases of screened disorders including:  2180 hemoglobinopathies, 140 organic acid disorders, 200 fatty acid disorders, and 240 other disorders.

Conclusion.  Data from the CNSP show serious disorders detected by newborn screening in Filipino babies that are not currently included in the limited newborn screening program in the Philippines. Expanding the panel of screened disorders to approximate that in the CNSP will result in significant additional case detections in the Philippines that will save lives and reduce unnecessary negative health outcomes through early detection and treatment.

Key Words: newborn screening, expanded newborn screening, Philippine newborn screening program

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