2015: A VYLH-Philippines Throwback

Aside from the year-long advocacy activities conducted by volunteer youth leaders (VYLs) across the country, VYLH-Philippines took great strides in terms of volunteer recruitment, social involvement and social media campaigns this 2015. As the network strives to fulfill its goal of empowering the youth for health, VYLH-Philippines has also increased its presence on the national and regional level.

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IHG-NIH and VYLH highlight the Youth's Role in Health Promotion at CUPSCon

NCR-South Luzon Coordinator Rufus Adducul presenting
the IHG-NIH and VYLH-Philippines experience
in mobilizing the youth for health.
Photo: VYLH-Philippines

LOS BAÑOS, LAGUNA – VYLH-Philippines NCR-South Luzon Coordinator Rufus Thomas Adducul gave a talk on the experience of the Institute of Human Genetics– National Institutes of Health (IHG-NIH), UP Manila in organizing a national volunteer youth leaders network – the Volunteer Youth Leaders for Health (VYLH)-Philippines. The talk was included in the parallel session on Health and Wellness Programs during the Luzon-leg of the inaugural Colleges and Universities Public Service Conference (CUPSCon) held last November 26-27, 2015 at the University of the Philippines Open University (UPOU).

The VYLH-Philippines presentation focused on the establishment and the achievements of the network and its volunteers. It provides an example on how the academe can partner with a youth organization and the youth, in general, for advocacy work. 

VYLH-Philippines was established in order to address the call of the March of Dimes – Global Network for Maternal and Infant Health (GNMIH) in engaging the youth and youth professionals on volunteer public health and GNMIH activities. Founded in 2009, VYLH-Philippines was the result of the collaboration between IHG-NIH, the Department of Health and The UPLB Genetics Society. 

Adducul noted that VYLH-Philippines flagship advocacies on promoting folic acid awareness, prematurity awareness, newborn screening and lobbying public support for rare disease patients were chosen and adopted by the network since these are pro-active, preventive and progressive interventions which address the Millennium Development Goals (MDG) of reducing child mortality and improving maternal health (MDG 4 and 5).  Likewise, there is no similar youth organization in the country which focuses on these advocacies. 

IHG-NIH (http://ihg.upm.edu.ph/) is the largest provider of genetic services in the country and it has also been involved in research, advocacy and policy recommendations. The proof of IHG-NIH’s efforts on research which translated into a policy is the Newborn Screening (NBS) Program institutionalized by the the NBS Act of 2004. Since the 13th Congress, IHG has also been involved in drafting a bill for the care and welfare of Filipino rare disease patients - the Rare Disease Act. At present, the bill has already reached Senate deliberations after gaining the concurrence of the House of Representatives last August.

UP Manila speakers and delegates from IHG-NIH, College of Allied Medical Professions,
College of Dentistry, and College of Medicine participating in the parallel session on
Health and Wellness Programs together with UP System Vice President for
Public Affairs Prospero de Vera III Photo VYLH-Philippines

ABOUT CUPSCon.  The Los Banos event participated by Higher Education Institutions (HEIs) from Luzon is the second installment of CUPSCon1 with the first held on November 16-17 in UP Cebu and participated by HEIs from Visayas and Mindanao. The two-day conference with the theme "From the Ivory Tower to the Communities: Engaging Society with Commitment and Expertise" featured plenary and parallel sessions on the policies and projects of HEIs that beneift sectors outside the university community. 

CUPSCon covered various topics such as community-engaged teaching and learning, institutionalization of community engagement and public service, knowledge-driven volunteerism, community engagement and public service; and university-industry linkages and engagements. 

CUPSCon was made possible through the support of the Office of the President, and Office of the Vice President for Public Affairs of UP, the Office of the Chancellor of UP Los Baños (UPLB), the Office of the Chancellor of the UP Open University (UPOU), and organized through the cooperation of the UPLB Ugnayan ng Pahinungod, UPLB Office of the Vice Chancellor for Research and Extension, UP Manila Ugnayan ng Pahinungod, UP Diliman Office of Extension Coordination, UP Baguio Office of Public Affairs, the System Committee on Public Service Monitoring and Reporting, and the University of the Philippines Padayon Public Service Office.# (RPascual for Genews/The UPLB Genetics Society)

For the complete GENEWS article, visit http://uplbgenews.blogspot.com

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WHO, UNICEF-PHL release advocacy videos on #WorldPrematurityDay

Health Promotion and Advocacy Update

2015 World Prematurity Day Philippines. (Modified screenshot: UNICEF Philippines videos, see below).

WHO's Recommendations to improve Premature Birth Outcomes

Preterm babies are prone to serious illness or death during the neonatal period. Without appropriate treatment, those who survive often face lifelong disability and poor quality of life. Complications of prematurity are the single largest cause of neonatal death and currently the leading cause of death among children under 5 years. Global efforts to further reduce child mortality therefore require urgent actions to address preterm birth. With this, the World Health Organization released its recommendations on interventions to improve preterm birth outcomes. 

According to WHO, "the primary audience for this guideline includes health-care professionals who are responsible for developing national and local health-care protocols and policies, as well as managers of maternal and child health programs and policy-makers in all settings. The guideline will also be useful to those directly providing care to pregnant women and preterm infants, such as obstetricians, pediatricians, midwives, nurses and general practitioners. The information in this guideline will be useful for developing job aids and tools for pre- and in-service training of health workers to enhance their delivery of maternal and neonatal care relating to preterm birth."

Download the complete guidelines or the document's highlights prepared by the WHO.

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UNICEF Philippines advocates for Kangaroo Mother Care

UNICEF Philippines Representative Lotta Sylwander explains what can be done to address this problem: regular check-ups for pregnant mothers, skin-to-skin contact after birth, and early and exclusive breastfeeding can improve survival rates of prematurely born babies.

Simple interventions like skin-to-skin contact can help increase the chances of survival for premature babies. Listen to Raquel and Jodee as they share their story of giving birth to premature twins, and how they're caring for them through Kangaroo Mother and Father Care.

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Are you at risk for premature birth? Preterm risk factors and how to lessen the risk

Health Promotion and Advocacy Update
Info-graphics for World Prematurity Day and
Prematurity Awareness Month

Have you had a premature baby in the past? Are you pregnant with twins or other multiples? Do you have problems with your cervix or uterus?  If so, you are more likely to give birth early.

We often get questions from women wondering whether they are at risk to have a premature baby. What makes some women give birth early? We don’t always know what causes preterm labor and premature birth. However, there are some things that we do know make it more likely. These things are called risk factors. Having a risk factor doesn’t mean that you will definitely have preterm labor or give birth early. But it may increase your chances. Read the full article

Content Adapted from March of Dimes

Visuals prepared by VYLH-Philippines

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March of Dimes. 2014. Are you at risk for premature birth? Accessed November 14, 2015 Url: http://newsmomsneed.marchofdimes.org/?p=19498 

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VYLH welcomes PSNbM as prematurity awareness campaign partner

Health Promotion and Advocacy Update

Prematurity Awareness Month and 

World Prematurity Day Primer

This 2015, VYLH-Philippines welcomes a new partner in the advocacy - the Philippine Society for Newborn Medicine (PSNbM), a sub-specialty society of the Philippine Pediatric Society (http://www.psnbm.org.ph/). The PSNbM is an organization of board-certified neonatologists who are firmly committed to establish promote sand provide a continuum of care of the highest standard for all newborn infants. Early this year, PSNbM launched #HingaHingalo ni Baby a movement set to forge partnerships between various stakeholders in the health sector, in educating the public about prematurity, its implications, and available interventions.

PSNbM together with its partners sponsors “Prematurity Awareness Month” this November and this aims to help in focusing the nation’s attention on premature births and bring people together on raising awareness on the global problem due to preterm births. Prematurity Awareness Month is also practiced in the United States and promoted by the March of Dimes (MoD), a leader in the awareness campaign for preterm births. MoD launched its campaign in 2003 (http://www.marchofdimes.org/).

#WorldPrematurityDay (Nov. 17)

The global event takes place across the world every November 17. According to the WHO and March of Dimes, ‪#‎WorldPrematurityDay is a crucial moment to reflect and commit to action to help address the inequities in preterm survival between low and high-income countries,  and to prevent unnecessary deaths and health problems caused by preterm births.

In 2008, the idea to create an international awareness day for preterm infants and their families was conceived during the first meeting of European parent organization organized by European Foundation for the Care of Newborn Infants (EFCNI). During the same year, the March of Dimes launched its Prematurity Awareness Month in the United States. The first international day for preterm births was first celebrated in 2009. The event was celebrated by a greater number of countries outside the region, hence the adoption of World Prematurity Day in 2011.

Based from the EFCNI website, more than 200 countries participated in activities, and more than 60 countries planned special events for World Prematurity Day. It was estimated that 1.6 billion people around the globe were reached by the campaign in 2014.

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Rare Disease bill moves closer to passage

The House of Representatives 

Health Promotion and Advocacy Update

There are already a number of rare disease bills filed in the Senate and House of Representatives since the 14th Congress, and now, the Rare Disease Bill moves closer to passage within the 16th Congress with its approval in the House of Representatives last August 24, 2015.

The Rare Disease bill ensures that persons with rare diseases will receive necessary medical information, healthcare, as well as rights and benefits as Persons with Disabilities (PWDs). It will also integrate the care and management of patients with rare disease to the current public healthcare system, and contribute on achieving Universal Healthcare.

Rare diseases are life-long, progressive, degenerative, life-threatening and disabling conditions. At present, a disease is considered rare if it affects 1 in 20,000 individuals or less, as defined by the Institute of Human Genetics (IHG)-NIH, UP Manila. It is estimated that around 6,000 to 10,000 individuals, mostly children, in the Philippines are afflicted with rare diseases. 

Among the rare diseases mentioned in the bill are Gaucher Disease, Maple Syrup Urine Disease, Pompe Disease, Galactosemia, Phenylketonuria, Methylmalonic Acidemia, Urea Cycle Defects, Hurler Syndrome, Hunter Syndrome, Prader-Willi Syndrome and Lubag. Some rare diseases are detected through newborn screening (NBS) – both basic (6-test panel) and expanded NBS.

The version of the Rare Disease bill in the House is a consolidation of nine house bills and it was authored and supported by principal author Diosdado Arroyo (2nd District, Camarines Sur) and 30 other legislators. House Bill 5973, otherwise known as the “Rare Diseases Act”, mandates the formation of the Rare Disease Technical Working Group (RDTWG) under the Department of Health (DOH), the lead agency in implementing the measure. Among the tasks of DOH-RDTWG is the identification of rare diseases, designating orphan drugs and products corresponding to a type of rare disease, as well as formulate policies on its regulation.

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Take a break and watch these #FightForPreemiesPH videos

Health Promotion and Advocacy Update
Prepared for World Prematurity Day 2015

Photo: World Prematurity Day Facebook Page

Premature birth is a very serious health problem. Worldwide, 15 million babies are born preterm and more than a million die as a result. This is more than one in 10 babies – and these numbers are rising. Babies who survive often have lifelong health problems such as cerebral palsy, vision and hearing loss, and intellectual disabilities.

Whilst 60% of preterm births occur in Africa and South Asia, preterm birth is a global problem. There is however, a dramatic difference in the survival of premature babies depending on where they are born. More than 90% of extremely preterm babies (less than 28 weeks) born in low-income countries die within the first few days of life, whereas less than 10% of extremely preterm babies die in high-income settings.

‪#‎WorldPrematurityDay‬ is a crucial moment to reflect and commit to action to help address these inequities and to prevent unnecessary deaths and health problems caused by preterm births.

Here are six videos and a list of online resources for #FightForPreemiesPH:

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DOH, VYLH Central Luzon boost IEC Campaign for NBS

In celebration of National Newborn Screening (NBS) Week, the Department of Health–Regional Office 3, in collaboration with the Newborn Screening Center–Central Luzon, held the Second Annual Volunteer Youth Leaders for Health (VYLH) Central Luzon Chapter Assembly at King’s Royale Hotel and Resort, San Fernando City, Pampanga, on October 1-3, 2015.

Forty-one youth leaders from different colleges and universities in Central Luzon together with young professional nurses participated in creating information, education, and communication (IEC) materials for the promotion of the NBS program.

The workshop produced IECs such as brochures, slogans, posters, tarpaulins, billboards, and comic books. The best design for each category received sets of basic and expanded NBS kits to be given to their choice of Newborn Screening Facility in their respective provinces. These designs will be developed and used as official promotional materials for Central Luzon.

The activity ended with the traditional rainstorm closing ceremony where participants pledged their commitment to uphold  the advocacies and values of VYLH-Philippines. RDione

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This article was also published in the September-October 2015 Issue of Newborn Screening, the official newsletter of the Newborn Screening Reference Center (NSRC)-NIH, UP Manila. To download a copy. visit www.newbornscreenph.com

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VYLH CARAGA holds 2nd Regional Camp, welcomes Batch Hiraya

Written by Shane Paul Baula

As part of its expansion, the Volunteer Youth Leaders for Health (VYLH) Philippines–CARAGA Region, in cooperation with Department of Health (DOH)–CARAGA Regional Office Caraga, City Health Office of Butuan, and Newborn Screening Center (NSC)–Mindanao, organized a youth camp to increase awareness on health issues at Veranda Beach Resort, Carmen, Agusan del Norte, on October 15-16, 2015.

The camp, which is on its second year, also welcomed Batch Hiraya, the new set of VYLH volunteers composed of 28 participants from different organizations in the community and academe. Hiraya is a Filipino word for dream, imagination, or vision. The camp also hosted the Peer Educators Training and Workshop organized by the City Health Office of Butuan and DOH-CARAGA.

This year’s activity highlighted the history of VYLH, youth empowerment, and the roles of volunteers in advocating health issues. The current situation of the newborn screening program in CARAGA and how the new volunteers can achieve VYLH’s advocacies were also presented. There were also lectures on newborn screening,expanded newborn screening, folic acid and rare disorders.

During the camp, Batch Hiraya prepared its action plans and presented it to the facilitators. On the night of the second day, the new volunteers went through a commitment ritual where they lit floating candles at the beach, followed by cultural presentations. 

Overall, the camp was a colorful and productive experience for the new members of the VYLH family. Despite hailing from different walks of life and having diverse insights, the new volunteers would become catalysts of change and actors of the network’s vision.

VYLH-Philippines CARAGA  hosted the first VYLH-Philippines Regional Camp on October 2011. SPBaula

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This article was also published in the September-October 2015 Issue of Newborn Screening, the official newsletter of the Newborn Screening Reference Center (NSRC)-NIH, UP Manila. To download a copy. visit www.newbornscreenph.com

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Abra enacts Philippines' first local ENBS ordinance

Health Promotion and Advocacy Update

The Province of Abra leads the nation in supporting Expanded Newborn Screening (ENBS) through local legislation. Last May 6, 2015, Abra Governor Eustaquio P. Bersamin promulgated Ordinance No. 231 or “The Expanded Newborn Screening Program of the Province of Abra.” According to the Newborn Screening Reference Center (NSRC), the local ordinance is “the first and, so far, the only ordinance legislated for ENBS in the Philippines since the start of its implementation on December 24, 2014 as approved by the Department of Health Advisory Committee on Newborn Screening (DOH-ACNBS).”

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The Youth speaks for a Healthier Philippines

VYLH-Philippines National President
Christian Emmanuel Enriquez
(Photo: VMendoza/NSRC-NIH,UP Manila)

Last October 6-7, 2015, the 13th Newborn Screening Convention was held at the Manila Hotel. The event was participated by over a thousand attendees from the medical and allied professions all over the Philippines. This year’s theme is Enhancing Newborn Care, Nurturing Minds, Brightening the Future and Saving more lives.

I was given the privilege to speak in behalf of the youth through our network, Volunteer Youth Leaders for Health - Philippines. An allotted time of 30 minutes was given to me to deliver an important message, "What is the Role of the Youth in Health Issues?" which I explained further by answering the following WHAT questions through acronyms.

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13th NBS Convention: Enhancing Newborn Care, Nurturing Minds, Brightening the Future and Saving Lives

Written by Ram Christian Cossid, RN

Batch K4

13th NBS Convention. The 13th NBS convention gathered health
practitioners, technical experts and NBS advocates
(Photo: VMendoza, NSRC-NIH-UP Manila)

Newborn Screening or NBS is a routine test for newborns ideally done after the 24th hour of life, as mandated by the Newborn Screening Act of 2004 (Republic Act 9288). NBS is bound to detect metabolic disorders that may hamper a newborn from living life to the fullest. From the basic six tests – which screens for Phenylketonuria (PKU), Congenital Adrenal Hyperplasia (CAH), G6PD Deficiency, Galactosemia, Congenital Hypothyroidism (CH) and Maple Syrup Urine Disease (MSUD) – NBS has now expanded its scope by adding 22 more disorders to the panel, now commonly known as the Expanded Newborn Screening program or ENBS.

With this venture, NBS further fortifies its take on the 5th Millennium Development Goal to help abridge the incidence of worldwide infant mortality and to promote their wellness. Now, NBS facilities once again convened to discuss updates regarding the program’s expanding scope and coverage, as well as the challenges and noteworthy steps that are being assumed to save more lives.

The 13th Newborn Screening Convention with the theme, Enhancing Newborn Care, Nurturing Minds, Brightening the Future and Saving more Lives, was held on October 6 and 7 at the Manila Hotel. The convention was organized by the Newborn Screening Society of the Philippines and the Newborn Screening Reference Center-NIH, UP Manila. 

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Infographic: Expanded Newborn Screening

Health Promotion and Advocacy Update

Early this year, the expanded NBS program started and this allowed the screening of 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.

Expanded newborn screening is optional. This makes newborn screening to 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 28 disorders (including the previous six 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.

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Let's gear up for #NBSWeek2015!

REPOST

Newborn Screening Reference Center

The implementation of expanded newborn screening in December 2014 provided opportunity for identification of more babies with life-threatening inherited conditions and timely initiation of appropriate management and care. This early diagnosis and management impact greatly on helping these affected babies live healthier lives.

There is no doubt that the active participation, support and dedication of our program partners will make the vision of saving all babies from mental retardation and death a genuine victory.

We have achieved a lot since the inception of the program in 1996. Let our efforts not end here as there will always be better ways to improve the newborn health care system of the country. Let us work together and share more celebrations of saved lives!

In this year’s celebration of the Newborn Screening Awareness Week, help us in our efforts to let the general public know about the benefits of newborn screening for the newborns and their families from October 1-7, 2015.

Help spread the word about this celebration either through the 15sec and 30sec radio commercials for your local radio stations or online by sharing the links to our brochures and posters so your health facilities can print them.

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The NBS Playlist: Watch. Share. Celebrate #NBSWeek2015

Health Promotion and Advocacy Update

We searched the web for videos about newborn screening. In addition to videos from our Youtube channel (vylhphilippines), we looked for uploaded videos from various news and current affairs programs. These videos are useful to all soon-to-be-parents and newborn screening advocates. 

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VYLH-Philippines Central Visayas welcomes Batch Hiraya

Written by John Paul Oira and Floyd Edrea
Newborn Screening 
May-June 2015 Issue

Reigniting the spirit of youth volunteerism in Central Visayas, the Volunteer Youth Leaders for Health (VYLH)–Philippines, in collaboration with the Department of Health–Regional Office (DOH-RO) 7 and Newborn Screening Center (NSC)–Visayas, organized this year’s regional youth camp to increase awareness on health issues among the youth and to mobilize youth leaders in the region toward health advocacy work.

This year’s newest breed of volunteers took the name Hiraya, from the Filipino word for “vision,” giving emphasis on the theme “Revolutionizing Health Promotion through Youth Participation.” This was the first time for VYLH to adopt a single Filipino word to name their batch. This was also the first time VYLH opened its doors to public applicants, adding to those who were selected by schools or organizations. A total of 20 applicants were accepted into the camp.

The first batch of Hiraya volunteers were inducted at the VYLH-Philippines Central Visayas Regional Camp in Boljoon, Cebu, on May 22-24, 2015. Students and young professionals from Siquijor, Cebu, Negros Oriental, and Bohol, as well as new volunteers from Tacloban City, comprise the 53-member strong batch.

Participants were greeted by camp facilitators at the Cebu Club Fort Med Resort. The camp officially opened on May 22 with GTKY (Getting-to-know-you) activities, camp introduction, messages from regional partners, and a video message from VYLH National Adviser Dr. Carmencita D. Padilla.

Dr. Emmelie Pfleider-Silao, NBS Medical Coordinator, through NBS Nurse Coordinator Mr. Ruff Vincent Valdevieso, presented the Department of Health Programs and DOH-RO 7 Updates on Newborn Screening—one of the three major advocacies of VYLH. It was followed by an orientation on the National Newborn Screening Program by Ms. Yugie Caroline Demegillo, NSC-Visayas Program Manager. Anna Leah Millares, NSC-Visayas ENBS Nurse, presented the Expanded Newborn Screening Program. 

A Social Night and Talent Expo was held in the evening to facilitate campers get acquainted with one another. Spicing up the night was an on-the-spot Mr. and Ms. Social Night, with Zecariah Chito Jumawan and Khem Alvarez as camp heartthrobs.

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"I am Rare": VYLH-PHL UP Manila lights up charity drive for 'Rare' kids

Written by Feliss Sanchez 

Original Published in Newborn Screening

March-April 2015 Issue

In its commitment to empower the youth toward optimal health, the Volunteer Youth Leaders for Health–Philippines University of the Philippines Manila (VYLH-Philippines UPM) held "I Am Rare: Alone We Are Rare, Together We Are Strong", a pilot standalone advocacy project for children with rare disorders, at the Tipunan grounds, UP Manila, on April 25.

This year’s program gathered 40 kids from its affiliate institution, the Philippine Society for Orphan Disorders (PSOD). The day-long charity drive was held to uplift the children’s spirits by evoking physiological and psychosocial awareness for young patients with rare diseases. UP Manila Chancellor Dr. Carmencita D. Padilla, who is also the National Program Coordinator and Founding Adviser of VYLH Philippines, graced the event.

“Isa akong proud na Chancellor ng UP Manila dahil sa event na ito ay mabibigyan natin ng kasiyahan ang mga batang may rare disorders,” Dr. Padilla said in her opening remarks.

Orphaned by Society

According to Rufus Thomas Adducul, VYLH–National Capital Region (NCR)-South Luzon Cluster Coordinator, Filipino children born with rare diseases are usually “orphaned” by society through social abandonment and lack of medical help. In the Philippines, a disease is considered rare if it affects one in every 20,000 individuals or less.

Celebrating Bravery

VYLH-UPM Co-Project Head Feliss Sanchez said that UPM chapter’s “I Am Rare” program recognizes the kids’ courage in facing daily challenges and that was a success in terms of giving the children what they truly deserve.

“We did this event to celebrate the strengths of these rare kids who go through the daily struggles of rare diseases, to celebrate the childhood of these kids,” she added.

Together with Cluster Secretariat Marian Therese Cuenca and participating UPM student organizations, namely, UP Health Sciences & Pre-Medicine Society (HS+PM), ALAB and College Student Council of UP College of Public Health (CPH), AWSAMS and Volunteer Corps of UP College of Allied Medical Professions (CAMP), YEARN of UP College of Nursing (CN), ProPharm of UP College of Pharmacy (CP), Biological Sciences Society, Biochemistry Society, and OMAKE of UP College of Arts and Sciences (CAS), VYLH prepared several presentations and booths for the children.

Disney-themed characters presented different theatrical plays for the kids who were given “student buddies” to guide them throughout the day. Moreover, the UP College of Medicine Choir sang the national anthem, while UPM’s Indayog dance varsity, CAMP Synergy, and Pharm Jam also performed for the children.

Fight for Quality Life

During the commitment ritual led by National Secretariat Aster Lynn Sur, parents and guardians of the rare kids expressed their deepest gratitude to the National Institutes of Health (NIH), VYLH-Philippines, PSOD, and UPM students for inspiring the kids to fight another day.

“Malaki ang pasasalamat namin sa inyo dahil bilang isang magulang, basta makita namin silang masaya ay masaya na rin kami,” expressed a parent of a child with Gaucher’s disease.

To cap off the program, selected children performed a dance number to the tune of PSOD theme song, Lalaban Kami. The song encourages the children further to continue their fight for a better life.#

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To read more articles from the Official Bi-monthly publication of the Newborn Screening Reference Center, download the full issue of 'Newborn Screening' through the following link: March-April 2015 Issue

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VYLH, GeneSoc attend NAST RTD on Folic Acid

“We need folic acid.”

Participants of the NAST-DOST RTD on Folic Acid
(Photo: NAST-DOST)

Those were the words mentioned by UP Manila Vice-Chancellor for Research Dr. Eva Cutiongco-de la Paz as she concluded the Round Table Discussion (RTD) on Folic Acid hosted by the National Academy of Science and Technology (NAST) last June 23, 2015 at Hotel Jen Manila. 

The RTD on Folic acid focused on the importance of taking enough folic acid by all women in the reproductive age. Folic acid is a B-vitamin (Vitamin B6) that is important in the prevention of neural tube defects (NTDs) or problems in the development of the baby’s brain and spinal cord. It is recommended that all women in the reproductive age need 400 micrograms of the vitamin per day, while the dose increases by ten times for high-risk mothers such as those who had a child with an NTD (4,000 micrograms/day). 

Dr. Carmencita Padilla presenting the highlights of the
proposed bill on Folic acid supplementation and
mandatory fortification (Photo:NAST-DOST)

According to a NAST release, “the RTD acknowledged the role of different sectors in the drafting of the policy on Folic acid supplementation and food fortification”. In the RTD, invited experts discussed the burden of neural defects; the importance of folic acid supplementation to avoid NTDs; and the current local and global programs in food fortification. 

Highlights of the proposed legislation on folic acid, “An Act Establishing a Comprehensive Policy on achieving adequate intake of Folic acid through Fortification and Supplementation” were also presented in the RTD by NAST Academician and UP Manila Chancellor Dr. Carmencita Padilla. In her presentation, Dr. Padilla mentioned that “there are already many efforts addressing folic acid deficiency that only require coordination and support of policy…and when the bill will be passed, there are other challenges in implementing and monitoring it, but it is important to already start in crafting it (the bill)”. Dr. Padilla, also the focal person of the RTD, asked the audience to give their inputs and support to the bill. 

As representatives of the youth, members of VYLH-Philippines and The UPLB Genetics Society (GeneSoc) joined the Folic acid RTD. Aside from newborn screening promotion and rare disorder support, both organizations are involved in the campaign on increasing public awareness, especially among women in the reproductive age, on the importance of folic acid and its role on preventing neural tube defects.(RPascual; with reports from NAST-DOST)

The National Academy of Science and Technology, Philippines (NAST PHL) conducted the Roundtable Discussion on Folic Acid...
Posted by National Academy of Science and Technology (NAST), Philippines on Tuesday, June 23, 2015

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VYLH-Philippines extends its gratitude to NAST-DOST for considering the network as youth representative to this event. 

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VYLH celebrates 6th Founding Anniversary, launches “Dubsmash-for-a-Cause”

Last July 13-18, Volunteer Youth Leaders for Health (VYLH)-Philippines celebrated its 6th Founding Anniversary. The network held various social media activities: "Heart of a Volunteer Monday", "Advocacy Tuesday", "Jumpshot Wednesday", Dubsmash Thursday", "Fansign Friday" and "Skype Dinner Saturday". The Skype “Pasasalamat” Dinner is an annual dinner-celebration held in key cities such Manila, Cebu and Davao which are connected through Skype. 

#DubsmashForACause

How to join #DubsmashForACause
(Photo: VYLH-Philippines)

Dubsmash is a free video messaging application for smart phones. The application allows users to choose an audio recording and record a video of themselves dubbing the chosen piece. Volunteers were invited to use the popular app Dubsmash and post their videos through their social media accounts with the hashtags #DubsmashThursday, #DubsmashForACause and #TatakVYLH.

Since 2009, VYLH-Philippines has used social media and the internet in connecting the network and its volunteers. Every year, the network innovates and adapts to popular trends among social media users. This year's activity is an example on how a popular app can be used not only for entertainment, but also in the service of the advocacy.

Looking Back

Founded on July 18, 2009, VYLH-Philippines is the result of the collaboration between the Institute of Human Genetics (IHG)-NIH, UP Manila, the Department of Health and The UPLB Genetics Society, a student organization from UP Los Baños. VYLH-Philippines is a network of youth leaders and youth organizations based in schools and communities throughout the country that will champion in increasing public awareness on existing health programs and on the significance of a healthy lifestyle at an early age. 

Through the years, the network has conducted national leadership congresses, regional and island-wide youth camps, and youth leader orientations. As of present, VYLH-Philippines has trained more than 500 volunteer youth leaders representing more than 170 youth organizations nationwide. They conduct year-round health promotion and advocacy projects directed towards the promotion of folic acid supplementation, prematurity awareness and newborn screening. The network is also in the forefront of gathering public support for the passage of the Rare Disease Act, an act addressing the needs of Filipino rare disease patients.(RPascual)

Visit fb.com/vylhphilippines and vylhphilippines.blogspot.com for more details or follow us @vylhphilippines for updates.

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DOH-NCR launches "Newborn Screening Jingle Video-Making Contest"

REPOST (Updated)

Newborn Screening NCR/

Newborn Screening Reference Center

The Department of Health National Capital Regional Office is giving the college students the chance to showcase their own interpretation of "Blessing Ka Baby", the newborn screening jingle through a unique music video.

This Jingle Video Making Competition is part of the Newborn Screening Advocacy Activities for the National Capital Region, aiming to increase the awareness not only of parents but all men and women of reproductive age about the importance of Newborn Screening and how it saves babies from mental retardation and death.

Interested parties need to request for the jingle by sending an email to nbs.dohncr@hotmail.com. Interpret the jingle using your own music video, then submit entries in digital format, saved in a CD or DVD on or before 25 March 2016, 5:00 PM October 23, 2015, 5:00pm to:

Department of Health -
National Capital Regional Office 

Blk 6 Barangay Road WelfareCompound, Brgy. Addition Hills, Mandaluyong City 

Tel. Nos: 531-0021, 531-0027, 531-0034 local 105

Cash prizes await the Top Three (3)
Best Video finalists:First Place: Php40,000.00
Second Place: Php30,000.00
Third Place: Php20,000.00

The following are the important dates for the contest:

Deadline for submission of application/contest entry forms:

26 February 2016 (11 September 2015)

Deadline for submission of video (CD/DVD):

25 March 2016, 5:00 PM (23 October 2015, 5:00 PM)

Announcement of Top Finalists: 

To be announced November 2015

Awarding Ceremony: 

To be announced 20 November 2015

In 2014, VYLH-Philippines made a lyric video of the jingle in celebration of Newborn Screening Awareness Week. The jingle was commissioned by DOH National Capital Regional Office and composed by Mr. Lloyd Oliver Corpuz.

For the full contest mechanics and criteria for judging, please use this Google Drive link (Contest Mechanics from DOH-NCR).

Reminder: Interested individuals of groups should request the Official competition copy of the NBS Jingle from the DOH-NCR Regional Office. The VYLH-Philippines lyric video was embedded for preview and information dissemination purposes only.

Disclaimer: VYLH-Philippines has voluntarily helped the organizers in the promotion of this contest. It's members and their organizations are still allowed to join this competition. Affiliation to VYLH-Philippines does not have any bearing in this competition. 

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#DubsmashForACause: VYLH-Philippines celebrates 6th Founding Anniversary

In celebration of its 6th Founding Anniversary, members of Volunteer Youth Leaders for Health - Philippines were invited to use the popular app Dubsmash and post their videos through their social media accounts with the hashtags #DubsmashThursday, #DubsmashForACause and #TatakVYLH. Dubsmash is a free video messaging application for smart phones. The application allows users to choose an audio recording and record a video of themselves dubbing the chosen piece. 

#DubsmashThursday is one of the social media activities included in this year's week-long celebration which will culminate on July 18 (Saturday) with the Annual "Skype"-Pasasalamat Dinner. 

Through the years, VYLH-Philippines has tapped social media and the internet in connecting the network and its volunteers. Every year, the network innovates and adapts to popular trends among social media users. This year's activity is an example on how a popular app can be used not only for entertainment, but also in the service of the advocacy. 

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NSRC releases list of facilities offering Expanded Newborn Screening

Expanded Newborn Screening is NOW AVAILABLE.
(Photo: Newborn Screening Reference Center,
@newbornscreenph)

The Newborn Screening Reference Center (NSRC) has released a list of facilities offering Expanded Newborn Screening (eNBS). Early this year, the expanded NBS program started and this allowed the screening of 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.

(Read: All Set for Expanded Screening Program)

Expanded newborn screening is optional. This makes newborn screening to 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.

MedTalk (Solar News/9 News and Current Affairs/CNN Philippines)

The following is the list of Newborn Screening Facilities offering Expanded Newborn Screening as of October 2015.

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Milestones: Celebrating 20 years of NBS in the Philippines

Photo: VYLH-Philippines
(Unofficial Commemorative Logo)

2016 marks the 20th year since the pilot implementation of the Philippine Newborn Screening Program then known as the Newborn Screening Study Group of the Institute of Human Genetics - NIH, UP Manila.

Join us as we discover the steps and leaps taken in order to reach the NBS program of today - the same program that has saved and has been saving lives of Filipinos from death and mental retardation.

Milestones in the history of newborn screening in the Philippines

1996

22 February First organizational meeting attended by representatives from Philippine Pediatric Society (PPS) accredited and Philippine Obstetrical and Gynecological Society (POGS) accredited hospitals in Metro Manila

02 April Creation of the NBS Study group composed of pediatricians and obstetricians from pilot hospitals. Project name: Philippine NBS Project 

27 June Commencement of the Philippine Newborn Screening Program (PNSP). NBS Samples were sent daily to the New South Wales NBS Program in Australia for test performance and analysis.

1997

18 September Start of operation of the NBS Laboratory at the NIH

1999

March Inclusion of NBS in Children’s Health 2025 

30 July Creation of the DOH Task Force on NBS composed of representatives from DOH, Institute of Human Genetics-NIH, DILG and other health groups.

2000

3 January Issuance of Administrative Order No 1A s 2000 by the DOH stating the Policies for the

Nationwide Implementation of NBS

2001

07 February Issuance of Department Order No. 29-C s, 2001 by DOH Subject: Creation of the National Technical Working Group on NBS Program, tasked to provide direction and guidance for the nationwide implementation of the NBS program.

2003

April NBS bills filed at Congress 

May NBS bills filed at Senate

9 December Issuance of DOH Administrative Order No 121, s2003, Subject: “Strengthening Implementation of the National NBS System

2004

20 January Issuance of the Presidential Proclamation No 540 entitled “Declaring the First Week of October of each year as “National NBS Awareness Week”

07 April Enactment of Republic Act No 9288 known as the Newborn Screening Act of 2004

05 October Signing of the Implementing Rules and Regulations of the Newborn Screening Act and signing of the Memorandum of Agreement for the creation of the Newborn Screening Reference

Center (NSRC) by the DOH and UP Manila

2005

02 December Opening of the 2nd NBS Center at West Visayas State University Medical Center

2006

22 January NBS included in licensing requirement of Philippine hospitals; 90% of NBS fee covered by national health insurance

2007

January 2 Offering of Scholarships for Genetics and Endocrinology for Regions without specialists

2008

12 June Issuance of DOH Memo No. 2008-0123 imposing the following targets: 30%-2008, 50%-2009 and 85% by 2010

08 August Issuance of AO No. 2008—0026 and 2008-0026A by DOH imposing penalties for non-implementation and/or overpricing of NBS

2009

January Creation of Expert Panel Committees

July Creation of National Follow-up Committee
July 18 Institution of Volunteer Youth Leaders for Health - Philippines, a national collaboration of youth leaders of youth organizations from universities and communities throughout the Philippines.

September Opening of Newborn Screening Center in Mindanao (3rd NBS Center)

2010

October Opening of the 4th Newborn Screening Center in Central Luzon

2011 

Streamlining and Revision of the Philippine Performance Evaluation System (PPEAS)

February Creation of the Committee on Use, Retention and Storage of Residual Dried Blood Spots for policy recommendation

Unbundling of the NBS from the other services in the Philhealth Newborn Care Package

June Offering of MS Genetic Counseling Program at the PGH- Department of Pediatrics, UP College of Medicine, University of the Philippines Manila

2012

March Creation of the Technical Group on Expanded Newborn Screening

October Inclusion of MSUD in the Panel of Newborn Screening 

2013

September Opening of the 5th Newborn Screening Center in Southern Luzon servicing to Region IV-A. Samples from Region IV-B, V and the National Capital Region are processed at NSC-NIH.

2014

October 30 Issuance of DOH Administrative Order (AO) No. 2014-0035 or the Guidelines on the Setting-up of Newborn Screening Continuity Clinics.The order provides for the setting up and implementation of NBS Continuity Clinics and Birth Defects Continuity Clinics for referral and management of all screened-positive newborns.

November 19 Issuance of DOH Administrative Order (AO) No. 2014-0045, or the Guidelines on the Implementation of the Expanded Newborn Screening Program which laid down the rules and procedures on how the expanded newborn screening should be implemented on all levels, including local, regional, and national.

__________________

Newborn Screening Reference Center. Program Briefer as of December 2012. 

Padilla, C. et al. 2009. Newborn Screening Research to Policy. Acta Medica Philippina 43(2).

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Legislation for mandatory folic acid fortification discussed in DOST Forum

REPOST
DOST S&T Media Service

VYLH-Philippines and GeneSoc members join the delegates
of the NAST RTD on Folic Acid
Photo: NAST-DOST

Foods and ingredients fortified with folic acid such as rice and flour will easily find their way in stores and supermarket shelves once legislation is in place. This will provide more Filipina consumers with more amounts of a nutrient proven to help prevent the incidence of neural tube defects (NTDs) in their future children.

At a recent Roundtable Discussion on Folic Acid organized by the Department of Science and Technology-National Academy of Science and Technology (DOST-NAST), Food Fortification Initiative’s Executive Officer for Asia Dr. Karen Codling stressed the necessity of mandatory legislation to create an impact on public health.

“Eighty-one countries currently have mandatory legislation for the fortification of wheat flour,” Codling revealed. “All but five of these require fortification with folic acid. The Philippines is one of the five countries with mandatory fortification of wheat flour that does not include folic acid.”  

In the same discussion, NAST Academician and UP Manila Chancellor Carmencita D. Padilla shared that the Institute of Human Genetics of the National Institutes of Health is proposing a legislation to establish a comprehensive policy on achieving adequate folic acid intake via food fortification and supplementation. This proposed bill, said Padilla, will hopefully be submitted to the Senate and the House of Representatives by August 2015.

“We want to ensure that there is adequate supply of folic acid fortified food and food products and folic acid tablets at an affordable price,” Padilla stated.

Read the full article

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IN FOCUS: Phenylketonuria

Health Promotion Update

The following is a 2010 Interview of Dr. Carmencita Padilla. She is the current chancellor of UP Manilaand VYLH-Philippines National Program Adviser. One of the rare genetic disorders discussed in this episode was Phenulketonuria (PKU).

(Salamat Dok, Hosted by Ms. Bernadette Sembrano-Aguinaldo, ABS-CBN Broadcasting Corporation)

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VYLH-Philippines joins Buntis Day 2015

Photo: POGS-Southern Mindanao Chapter

Held in separate locations, VYLH-Philippines joined the Philippine Obstetrical and Gynecological Society (POGS) in celebrating the 12th Buntis Day across the country. The network considers "Buntis Day" as an ideal avenue in promoting the network's advocacies since it gathers hundreds of pregnant women. During the event, VYLH-Philippines volunteers were given the opportunity to give some freebies and informational materials on the importance of folic acid supplementation and newborn screening  to the participants.

As mandated by Presidential Proclamation 569, the National Day for Pregnant Women aims to promote the needs of pregnant women in order to have a healthier pregnancy. This objective is also reflected to this year's theme, "Kadakilaan at Malasakit ng Ina: Tulay sa Magandang Kinabukasan". The annual event also aims to recognize all pregnant women who are considered heroes in their own right as they bring and nurture another life into the world.

This year marks the fourth year of VYLH-Philippines' participation to the Buntis Day. The network first participated in this annual celebration in 2012 which coincided with the successful attempt of the Philippines, led by POGS to obtain the Guinness World Record on the Largest Prenatal Class held in multiple locations.

Davao City (POGS Southern Mindanao Chapter)

March 8, 2015

Cebu City (POGS Cebu Chapter)

March 10, 2015

Iloilo City (POGS Panay Chapter) 

March 10, 2015

Manila (POGS BAYCOG/Bayside Council in Obstetrics and Gynecology)

March 10, 2015

Lipa City, Batangas (POGS Southern Tagalog)

March 10, 2015

Los Banos, Laguna (Municipal Government of Los Banos/POGS Southern Tagalog)

March 11, 2015

Acknowledgements:

• POGS Chapters and our contact persons: Dr. Amelita Jover (BAYCOG), Dr. Fritzie Tenorio (Lipa/POGS-STC); Dr. Luz Cambonga (POGS-Cebu); (POGS-SMC); (POGS-Panay)
• Newborn Screening Center Visayas 
• Newborn Screening Center Mindanao
• Municipal Health Office of Los Banos, Laguna 
• VYLH-Philippines volunteers and Secretariat: Katrina Gurro, Robin Charles Ramos, Aple Dowanie Tadlas (Davao); Emil Martin Pelias (Cebu); Floyd Edrea, Anna Leah Millares (Iloilo), Elaine Dimayuga (Lipa City, Batangas), Rufus Adducul, Maris Cura, Mark Tulisana, Marian Teresa Cuenca (Manila); Kraniel Papera, Jerome Florendo (Los Banos, Laguna)

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