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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VYLH-PHL joins"Jean/Gene" Ribbon Campaign: Raising awareness to the fullest

February marks another milestone for the Volunteer Youth Leaders for Health -Philippines after the network successfully participated in the 4th Rare Disease Awareness Week and the 6th International Rare Disease Day last February 28,2013.

The dynamic volunteers of VYLH-Mindanao led the advocacy campaign in different areas as far as the provinces of Surigao del Sur, Misamis Oriental, Bukidnon and Davao. Schools, communities and even the public and private sectors were engaged in this noble act of advocating. Among the activities conducted were radio plugging and airing of Philippine Society for Orphan Disorders or PSOD’s theme song “Lalaban Kami” in Radyo ni Juan, signature campaign for the enactment of Rare Disease Act of the Philippines, display of PSOD’s slogans and posters to various institutions as well as group lectures and room-to-room orientation to selected students of Xavier University, Central Mindanao University and community high schools in Davao. The event’s highlight was the denim ribbon distribution and wearing of maong jeans in solidarity with the Global Genes Project‘s “Wear that you Care” campaign during the Rare Disease Day.

The Newborn Screening Center-Mindanao employees, spearheaded by Dr. Abarquez, once again showed their support for the occasion by marking the special day as an official blue jeans day! The wearing of maong jeans and the pinning of denim ribbons signified the personnel’s call-for–solidarity with the campaign. The Southern Philippines Medical Center staff and employees and patients also joined the week-long PSOD video film showing, signature campaign, and lectures in the different areas like the OPD, SPMC lobby, OB and Pedia wards. With the theme “Rare Disorders without Borders”, this year’s main objective was to create awareness on the different orphan and rare disorders, not only locally but globally as well.

[For updating]

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Contributors: Aple Tadlas, RN (VYLH-Philippines Mindanao Secretariat)

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VYLH-Philippines joins Buntis Day 2013

MANILA - Volunteer Youth Leaders for Health (VYLH)-Philippines volunteers participated in the recently concluded Buntis Day activity by the Bayside Council on Obstetrics and Gynecology (BAYCOG) on March 10, 2013 at Robinson's Place Otis, Manila. 

Acknowledgements. VYLH-Philippines would like to thank Dr. Amelita Jover and BAYCOG. 

Participating volunteers: Romer Guerbo, Gessa Ramos, Kevin Lucas, Elmer Palomeno, Rufus Thomas Adducul, Ryan Pascual 

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