Milestones: Celebrating 20 years of NBS in the Philippines

July 5, 2015, 1:50 am

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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).

↧

NSRC releases list of facilities offering Expanded Newborn Screening

July 11, 2015, 5:30 am

≫ Next: #DubsmashForACause: VYLH-Philippines celebrates 6th Founding Anniversary

≪ Previous: Milestones: Celebrating 20 years of NBS in the Philippines

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.

The NSRC also released brochures on eNBS for parents and health practitioners. The following is the brochure for parents in Filipino.

The other eNBS brochures are available online through the NSRC website (newbornscreening.ph).

About the NSRC

The Newborn Screening Reference Center (NSRC) is an office under the National Institutes of Health (NIH), University of the Philippines Manila created under RA 9288.

NSRC provides technical assistance to the DOH-NIH network in reaching the ultimate goal of screening Filipino newborns for common life-threatening heritable disorders. NSRC provides information and resources in the area of newborn screening to benefit health professionals, the public health community, consumers and government officials.

↧

#DubsmashForACause: VYLH-Philippines celebrates 6th Founding Anniversary

July 16, 2015, 8:29 am

≫ Next: DOH-NCR launches "Newborn Screening Jingle Video-Making Contest"

≪ Previous: NSRC releases list of facilities offering Expanded Newborn Screening

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.

The following are some of the videos posted by our volunteers:

Newborn Screening Promotion

#DubsmashThursdayMaking advocacy more fun than ever! Join us this Thursday as we Dubsmash for a Cause! Search NEWBORN...
Posted by Volunteer Youth Leaders for Health - Philippines on Wednesday, July 15, 2015

So it's #Dubsmashthursday & we just got to do this! HahaAs volunteer youth leaders for health, we advocate for newborn...
Posted by Gil Aurus Alcoran on Thursday, July 16, 2015

#DubsmashThursday #DusbmashForACauseBravo! Youth leader 'dubsmashes' this advocacy ad on Newborn Screening! Search Newborn Screening on Dubsmash and join the fun! :D(c) Ken Anino
Posted by Volunteer Youth Leaders for Health - Philippines on Wednesday, July 15, 2015

dubbed with a purpose.. #VYLHPhilippines #Happy6thAnniversary #DubsmashThursday#NewbornScreening #RareDisease Floyd Edrea Ruff Vincent Importante Valdevieso @ Crown Regency
Posted by Kharen Joyce on Thursday, July 16, 2015

Prolly the most challenging day so far in a series of activities celebrating VYLH's sixth founding...
Posted by Toffy Menchavez on Thursday, July 16, 2015

Before this day ends, let me make my pahabol. It's never too late! ^_^#DubsmashThursday#Happy6thAnniversary#VYLHPhilippines#BatchK4
Posted by Ram Nuique on Thursday, July 16, 2015

Finally... Got it ❤❤ My first ever dubsmash ??#DubsmashThursday#DubsmashforaCause#Happy6thAnniversary #VYLHPhilippines #K4Please like our page https://m.facebook.com/vylhphilippines
Posted by Vita Min Caparro Young on Thursday, July 16, 2015

Newborn Screening Advocacy :)#DubsmashThursday #Happy6thAnniversary #VYLHPhilippines #DubsmashForACause
Posted by Melorens Donoso Dumas on Thursday, July 16, 2015

Rare Disorders Support

Lalaban Kami ^^,#Happy6thAnniversary#DubsmashThursday#TatakVYLH#VYLHPhilippines#TeamBohol
Posted by Phoebe Ann Pocoy on Thursday, July 16, 2015

Squad goals! Dancemash for Newborn Screening! #vylh #hiraya #batchhiraya #proudvolunteer #newbornscreening #raredisease #vylh6thfoundinganniversary #happy6thanniversary #vylhphilippines
Posted by Yel Buscato on Thursday, July 16, 2015

↧

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

July 23, 2015, 7:21 am

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

≪ Previous: #DubsmashForACause: VYLH-Philippines celebrates 6th Founding Anniversary

REPOST

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~~

For the full contest mechanics and criteria for judging, please visit the website of the Newborn Screening Reference Center or this external link.

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.

Reminder: Interested individuals of groups should request the Official competition copy of the NBS Jingle from the DOH-NCR Regional Office. The VYLH-Philippines 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.

↧

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

July 28, 2015, 6:00 am

≫ Next: VYLH-Philippines Central Visayas welcomes Batch Hiraya

≪ Previous: DOH-NCR launches "Newborn Screening Jingle Video-Making Contest"

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.#

___________________

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

↧

VYLH-Philippines Central Visayas welcomes Batch Hiraya

June 15, 2015, 12:48 am

≫ Next: The NBS Playlist: Watch. Share. Celebrate #NBSWeek2015

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

Written by John Paul Oira and Floyd Edrea

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.

Serious Business

Day 2 of the camp featured a series of lectures. The first was a talk on how to use the powers of social media responsibly. VYLH-Philippines Vice-President for Visayas John Paul Oira presented “I am Social: Social Media and the Filipino Youth Volunteer” on behalf of the network's National Secretary Zapphire Zamudio. Meanwhile, National Youth Commissioner Jan Paul Peñol exemplified the youth’s power in his talk “The Role of the Youth in Nation Building and Health Promotion.”

Dr. Barbra Charina Cavan, the VYLH-Philippines Cluster Adviser for Visayas, oriented the new volunteers on the other VYLH major advocacy through her talk “Folic Acid Facts,” with a supplementary discussion on the National Birth Defects Surveillance. The third major advocacy was presented to the volunteers through a series of videos from the Philippine Society of Orphan Disorders; Aster Lynn Sur, VYLH-Philippines National Secretariat, showed “Caring for Children with Rare and Orphan Disorders.” VYLH-Philippines National President Christian Emmanuel Enriquez presented the VYLH Progress Report through the years.

After the lectures, the new volunteers underwent “Action-Plan Construction and Youth Mobilization Seminar,” which was followed by the campers’ presentation and feedback from the advisers. Batch Hiraya provincial representatives were also elected.

The camp’s second night featured a series of team-building activities (Amazing Race). The new volunteers were also officially inducted as members of the network through the traditional “Commitment Ritual.” A renewal of commitment was also held for old members. The camp ended with cultural presentations and the “VYLH Camp Awards.”

Background

VYLH-Philippines on the cover of Newborn Screening

VYLH-Philippines started in 2009 with a vision to empower the Filipino youth in becoming agents of change for a healthier Philippines. More than five years later, the network has empowered hundreds of young individuals. Since its inception, VYLH-Philippines has conducted promotional activities on newborn screening, folic acid supplementation, rare diseases, and birth defects through various approaches such as fora, symposia, seminars, radio and TV spots, exhibits, door-to-door campaigns, concerts for a cause, film showing, and distribution of promotional materials in strategic areas. JPOira, FEdrea

________________

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: May-June 2015 Issue

↧

The NBS Playlist: Watch. Share. Celebrate #NBSWeek2015

September 28, 2015, 7:16 am

≫ Next: Let's gear up for #NBSWeek2015!

≪ Previous: VYLH-Philippines Central Visayas welcomes Batch Hiraya

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.

1. Newborn Screening TV Ad (2007)

2. DOH-NCRO Newborn Screening Jingle (2014)

3. 24 Oras Interview of Dr. Carmencita Padilla (2006)

4. Dubsmash-for-a-Cause (2015)

#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.

Let's gear up for #NBSWeek2015!

September 28, 2015, 9:57 pm

≫ Next: Infographic: Expanded Newborn Screening

≪ Previous: The NBS Playlist: Watch. Share. Celebrate #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.

SOCIAL MEDIA

Make this your profile photo for
#NBSWeek

1. You can change your profile photo to expanded newborn screening (ENBS) logo from October 1 to 7 on Facebook, Twitter and any other social media sites. Remember to tell your friends or followers why you have changed your profile photo!

2. Are you a blogger? Check out the resources at http://www.newbornscreening.ph/ and write a post for Newborn Screening Week.

3. #NBSWeek. Tweet your support to the program by sharing your personal thoughts about newborn screening or by tweeting one of the following:

• Pres. Proclamation No. 540 declares the 1st week of October each year as "National Newborn Screening Week" #NBSWeek

• It’s newborn screening awareness week, learn more about screening by visiting http://www.newbornscreening.ph.#NBSWeek

• Learn about screening before giving birth at http://www.newbornscreening.ph. #NBSWeek

• New baby in the family? Be sure to ask your provider about newborn screening #NBSWeek

• Newborn screening is covered by PhilHealth. Ask your provider about it. #NBSWeek

• More than 20 disorders are now being tested. Ask for expanded newborn screening. #NBSWeek

• Expanded newborn screening is now available. Ask for it at the nearest health facility. #NBSWeek

Do not forget to attach the hastag #NBSWeek to your tweets. Tag @newbornscreenph and we will re-tweet (RT) your status.

4. Share your newborn screening experience or photo on Facebook or use one of these Facebook updates:

• Newborn screening is a public health program for the early identification of disorders that can lead to mental retardation and death. Ask your doctor about newborn screening or visit www.newbornscreening.ph. #NBSWeek #ENBS

• Babies with metabolic disorders look normal at birth. One will never know that the baby has the disorder until the onset of signs & symptoms. Ask your doctor about newborn screening or visit www.newbornscreening.ph. #NBSWeek #ENBS

• The effects of the conditions being screened range from mental retardation to death, which can be avoided by early detection & management. Ask your doctor about newborn screening or visit www.newbornscreening.ph. #NBSWeek #ENBS

• Presidential Proclamation No. 540 declares the 1st week of October each year as "National Newborn Screening Week." Everyone deserves the best start. Please visit www.newbornscreening.ph to learn about screening today. #NBSWeek #ENBS

• Check if your hospital/birthing home is among the 6000 health facilities in the country offering newborn screening. Visit www.newbornscreening.ph #NBSWeek #ENBS

• RA 9288 established the National Comprehensive Newborn Screening System to ensure that every baby born is offered newborn screening. Please visit www.newbornscreening.ph to learn about screening today. #NBSWeek #ENBS

• As a parent, I support newborn screening for EVERY baby! The 1st week of October each year is newborn screening awareness week. Please visit www.newbornscreening.ph to learn about screening today. #NBSWeek #ENBS

• You can’t tell by looking at a baby if he/she has a disease that #NewbornScreening looks for. Every baby should be offered newborn screening. Ask your doctor about expanded newborn screening or visit www.newbornscreening.ph. #NBSWeek #ENBS

Use the hashtags #NBSWeek #ENBS in your status.

5. Change your Facebook cover photo using the banner.

6. Don’t forget to follow our Twitter account (@newbornscreenph).

PRINT

Have you read the newborn screening brochures? Have you seen the newborn screening posters? You can download copies through this LINK. You are free to print and share them.

RADIO

Have you heard the newborn screening radio commercial? Do you want parents and expecting parents in your community to learn about the benefits of screening? Download the commercials through this LINK and work with your local radio stations to have these commercials air from October 1 - 7.

If you participate in any of these efforts, send us your photo or details of your participation. We will feature all efforts in our bi-monthly newsletter. This is another chance for you to get involved and help save Filipino newborns!
_________________

This primer was provided by the:

Newborn Screening Reference Center (NSRC)
National Institutes of Health - University of the Philippines Manila
Unit 104, Building A, UP Ayala Land Technohub,
Brgy. UP Campus, Diliman, Quezon City 1104

Trunk lines: +632. 373.00.13 / +632.373.01.19
Fax: +632.351.79.03
E-mail: info@newbornscreening.ph

↧

Infographic: Expanded Newborn Screening

October 4, 2015, 7:13 am

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

≪ Previous: Let's gear up for #NBSWeek2015!

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.

October 1-7 is National NEWBORN SCREENING WEEK. #NBSsaves #ENBSph #NBSWeek2015Early this year, the expanded NBS...
Posted by Volunteer Youth Leaders for Health - Philippines on Sunday, October 4, 2015

_________________
Infographic: Ryan John Pascual

UP Los Banos/UP Diliman

VYLH-Philippines NCR-South Luzon

Special Thanks: Ms. Vina Mendoza (NSRC-NIH-UP Manila) and the VYLH-Philippines Secretariat for reviewing this material.

↧

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

October 6, 2015, 11:57 pm

≫ Next: The Youth speaks for a Healthier Philippines

≪ Previous: Infographic: Expanded Newborn Screening

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.

Day One (06 October 2015)

KEYNOTE SPEAKER. Brian Llamanzares, accompanied by
Ms. Susan Roces, represented Sen. Grace Poe
(Photo: VMendoza, NSRC-NIH,UP Manila)

The first day of the event kicked off with a short commemoration of how NBS started and to where it stands today. Keynote speaker, Hon. Grace Poe, represented by her son Brian Llamanzares, lauded the cumulative efforts of the NBS facilities and Newborn Screening Centers (NSCs) for continually improving their services, hence, encouraging everyone to further address the need to augment the coverage in the existing underserved areas. Moreover, she emphasized in her message the continual push to subsidize the ENBS by including it in the PhilHealth package to favor those who may not be able to meet the expense of such.

2014 National Newborn Screening Coverage
(NSRC-NIH, UP Manila/ newbornscreening.ph)

NBS in the Asia Pacific. Looking onto a larger scale, Newborn Screening program in the Asia Pacific has reached significant heights, especially in the developed countries. The data, presented by the Director of Newborn Screening Reference Center – National Institutes of Health, Dr. Ma. Melaine Alcausin, reveals that the Philippines has a coverage of 65% as per 2014, standing behind Singapore and Malaysia with a coverage of 99% and 95% respectively. As the country’s coverage continue to dramatically increase, the Newborn Screening Centers has immensely responded by pushing to grow the number from 5 NSCs to 8. Likewise, targeting to increase the coverage to 70-75% for the next year.

Dr. Carmencita Padilla
(Photo: VMendoza,
NSRC-NIH,UP Manila)

ENBS Updates. In the recent update from the California Newborn Screening Program, significant occurrences of disorders that were not yet part of the panel of disorders in the regular NBS were identified in the Philippines, thus the ENBS program was realized. Started in the year 2014, ENBS is slowly reaping hype among the facilities and pregnant mothers due to lack of advocacy and its non-inclusion in the PhilHealth package. NSCs are now strengthening their campaign to popularize ENBS to better monitor the health status of our newborns and the population at whole. (Related: NSRC releases list of facilities offering ENBS)

The Philippines Newborn Screening
Project (1996)

What’s Next. Pushing for health in the hands of the Filipinos, the question for the NBS program now is “What’s next?” Going back 20 years ago, Dr. Carmencita Padilla, Founding director of the Institute of Human Genetics, NIH-UP Manila and Primary proponent of the Philippine NBS Program, shared the major obstacles in the past. Transitioning 20 years after, the dramatic growth of accredited facilities proliferated from a few hundreds to over six thousand. From this immense development, she highlighted that the country is now one of the leading movers and is setting an example to other developing countries in the implementation of the program in the Asia Pacific. Banking on this notion, Dr. Padilla is assured that NBS will reach greater heights in the next decade, given that we continue to innovate our tools, strengthen our advocacy and help promulgate policies that will benefit the program. (Related: Milestones: Celebrating 20 years of NBS in the Philippines)

Capping the first day of the conference were the lectures and exchange of discussions on hemoglobinopathies, confirmatory testing and management of metabolic disorders by Dr. Reynaldo de Castro and Dr. Mary Ann Abacan. Sample cases were also presented to better understand some disorders included in the panel of ENBS.

Day Two (07 October 2015)

As our health department is trying to keep up with the growing needs for the people’s well-being, our local health sectors, non-government organizations, the youth and individual advocates have proactively heeded the call to mitigate the existing gaps.

Dr. Virginia Narciso, NBS Program Manager of DOH-CAR
(Photo: VMendoza, NSRC-NIH,UP Manila)

Case in Point. Despite the unsettling increase in the number of Infant Mortality Rate (IMR) and Under Five Mortality Rate (UFMR) in the Cordillera Administrative Region (CAR), based on their Maternal and Neonatal Death Tracking Reports from 2012 to 2014, Dr. Virginia Narciso, NBS Program Manager of DOH-CAR, took to the plenary how they attempt to defy the numbers with one basic tool – commitment. It was a big challenge for CAR to embrace the ENBS program due to their lack of funds and their existing number of indigents who could not afford to pay for it. This roadblock gave birth to the joint efforts of different agencies to promote inexpensive yet effective ways to make ENBS more attainable. Similarly, development and passage of ordinances by some Local Government Units (LGUs) was also done to assure the implementation’s sustainability.

The Newborn Package. Essential newborn care, initial dose of BCG and Hepatitis B vaccine, newborn hearing test and the newborn screening test – these are the essentials of the newborn package. “But why not include the ENBS?” This is one of the questions raised by the audience during PhilHealth’s presentation, to which came the reply that the body “will look into it” in the efforts of providing the optimum level of service to all beneficiaries. Though the majority was expecting a less ambiguous response, they are positive that the inclusion of ENBS will transpire sooner. (Related; Infographic on Expanded Newborn Screening)

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

Big Shoes to Fill. “Today’s youth are tomorrow’s parents, teachers, doctors and future leaders.” Staying true to what the late hero, Dr. Jose Rizal, said about the youth as being the hope of the future, Mr. Emmanuel Christian Enriquez, RN, MAN, President of the Volunteer Youth Leaders for Health (VYLH) Philippines, imparted his share of insights as to why we must invest in the youth. In his 30-minute talk, Mr. Enriquez underscored the skepticisms that many have about what the youth can do and addressed these concerns with his clever mnemonics and riveting propositions. He reinforced everyone that with the right motivation and opportunity, the youth will champion future ordeals. (Related: The Youth Speaks for a Healthier Philippines)

The plenaries went on, saturating every mind with tons of information. I was one of those who took a breather to refresh my then throbbing temples, missing out on the lectures about Glutaric Aciduria and Genetic Counseling.

Other interesting topics included on the second day of the convention were the following:

Implementation of ENBS by NSFs and ABCs of ENBS, with emphasis on the flow of procedures, from the procurement to patient referrals and continuous monitoring;
The Roles of the Social Worker in the Newborn Screening Program, which highlights how the social worker reconciles health care and its accessibility to indigent patients;
Screening for Critical Congenital Heart Disease by Pulse Oximetry, focusing on the early detection of the disease and its immediate management in early life;
Newborn Screening Data for Preterm and Low Birth Weight Infants: Issues and Concerns, bearing on the updated NBS protocol and its implementation;
Minimizing Unfit and Unsatisfactory Samples, stressing on the importance of proper specimen collection and handling;
Newborn Screening Reference Center (NSRC) Online;
Updates on the Newborn Screening Continuity Clinics; and
NBS Program from a Parent’s Perspective.

As the clamor for better access and delivery of health in the country continue, the Newborn Screening Program remains steadfast in responding to and addressing the needs of the newborns and the women in their reproductive age, especially those in the underserved areas of the country. All throughout the plenaries, emphasis on joint efforts and collective responsibility are constantly echoed to achieve full coverage of the program and to save more lives.

Overall, the convention was very informative and the attendees will certainly have something to write or share about. I was not there by the time all the plenaries ended because I have to catch my flight back to Davao. But even so, i could say that the convention was a success and the essentials were delivered fairly to make us more informed and more encouraged.

I am optimistic that more lives will be saved through the Newborn Screening Program. As Mr. Enriquez puts it, “He who has health has hope and he who has hope has everything to succeed.” Together, we can make this happen.

________________
Ram Christian Cossid, RN is a graduate of Polytechnic College of Davao del Sur. In 2010, he became affiliated to the network during its Mindanao Island-wide Youth Camp (Batch K4). At present he is a Nurse at the Newborn Screening Center Mindanao - Southern Philippines Medical Center, Davao City.

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The Youth speaks for a Healthier Philippines

October 9, 2015, 9:37 am

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

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

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 Hote. 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.

What does the youth have?

Ang Kabataang Pinoy ay EPIC A+

(Energy, Passion, Innovative Ideas, Creativity, Access)

What can the youth do?

Ang kabatang pinoy ay hindi kailangan ma-HIA

(Health Education, Influence and Involvement, Awareness and Advocacy)

What is the impact?

Ang kabataang Pinoy ay IBAH

(Informed Society, Better Health Choices, Active Participation, Healthier Philippines)

The opportunity to talk for the youth was a memorable experience which made me realize that when the youth is given the chance to speak their ideas on a platform welcomed and acknowledged by the society, it can bring positive change towards their outlook on health - the youth not just being a recipient of health care services but prime movers and active partners of the government.

"Youth empowerment is not about blindly guiding the youth to follow what we have in store for them rather giving them the chance to share their insights, be heard and allowed to participate in the battles they will face in the future."

Knowing that our predecessors acknowledge the need of active youth involvement on health programs and endeavors for a healthier Philippines is truly inspiring.

I concluded my speech with a quote saying "He who has health has hope and he who has hope has everything to succeed. If we believe that the youth is our hope, and we want them to succeed we should invest on them and get them involved as it is their future we are fighting for."

Christian Emmanuel P. Enriquez, RN. MAN

VYLH-Philippines National President

__________________

VYLH-Philippines extends its deepest gratitude to the organizers of the 13th Newborn Screening Convention - The Newborn Screening Society of the Philippines, and Newborn Screening Reference Center (NSRC)-NIH, UP Manila, for the opportunity to convey the advocacy of the network and the role of the youth in health.

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

July 24, 2015, 1:46 pm

≫ Next: VYLH, GeneSoc attend NAST RTD on Folic Acid

≪ Previous: The Youth speaks for a Healthier Philippines

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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VYLH, GeneSoc attend NAST RTD on Folic Acid

July 24, 2015, 1:50 pm

≫ Next: Abra enacts Philippines' first local ENBS ordinance

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

“We need folic acid.”

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

These 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, “[t]he 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

________________

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

↧

Abra enacts Philippines' first local ENBS ordinance

October 21, 2015, 9:17 am

≫ Next: Take a break and watch these #FightForPreemiesPH videos

≪ Previous: VYLH, GeneSoc attend NAST RTD on Folic Acid

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).”

Authored by Sangguniang Panlalawigan Health Committee Chair Ramon Dickson, M.D., the ENBS ordinance covers the Abra Provincial Hospital, district hospitals, rural health units (RHUs) and all other medical and birthing centers under the jurisdiction of the province. Aside from following the screening protocol described in the Newborn Screening Act of 2004 (RA 9288) and its Implementing Rules and Regulations (IRR), the ordinance also mandates all health practitioners of the province, who delivers or assists in the delivery, to inform the parents or legal guardians of the newborn about the availability, nature and benefits of ENBS prior to the delivery.

Funding is also one of the important provisions of the ordinance. As stated in the ordinance, 500,000 pesos will be appropriated annually for the implementation of the ENBS program of the province, in addition to the amount allotted to the Newborn Screening Program (NBSP). According to Dr. Dickson, the budget allotment for ENBS will be used in the purchase of ENBS kits, as well as the confirmatory and medical management expenses of identified cases among indigent patients. There is also a possibility that the allotment would be increased in the coming years.

DOH-CAR NBS Probram Manager Dr. Virginia Narciso
(Photo: VMendoza/NSRC-NIH,UP Manila)

This milestone in NBSP and ENBS local legislation was covered in one of the plenary sessions of the recently concluded Newborn Screening Convention. Last October 7, Dr. Dickson commended NBSP implementers and briefly introduced the development of the ENBS legislation as a prelude to the presentation given by Dr. Virginia Narciso, NBS Program Manager – DOH Cordillera Administrative Region (CAR). Dr. Narciso talked on how healthcare providers and other stakeholders including the youth contributed to the DOH-CAR NBS and ENBS advocacy, and on how partnering with local government units led to the enactment of NBS-related ordinances.

Reports from the Newborn Screening Center - Central Luzon (NSC-CL) have showed that Abra Provincial Hospital screens 100 percent of their live births either in the basic NBS-6-panel or ENBS. The province have also sent 348 ENBS samples to NSC-CL as of September 2015.

The following is a copy of the landmark ENBS ordinance (Sangguniang Panlalawigan of Abra/NSRC-NIH, UP Manila):

_________________

The complete article on the Abra ENBS ordinance is part of the National Newborn Screening Week broadsheet spread published last October 18, 2015 in the Philippine Star. Download the complete article here (link).

The NSRC has also compiled NBS-related ordinances enacted at the municipal, provincial and regional level. Visit newbornscreening.ph .

↧

Take a break and watch these #FightForPreemiesPH videos

November 3, 2015, 10:26 am

≫ Next: Rare Disease bill moves closer to passage

≪ Previous: Abra enacts Philippines' first local ENBS ordinance

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:

#FightForPreemiesPH: 24 Oras feature on Preterm Births in the Philippines

"Preterm or Preemies" are babies born alive before 37 weeks of pregnancy are completed.

The Philippines ranks as the 8th country with the most number of preterm births and 12th country with the hightest number of preterm birth in every 100 live births. In 2010, country estimated indicated around 350,000 preterm cases which includes 12,411 deaths due to complications from preterm births.

"Hinga Hingalo"

HINGA HINGALO ni Baby; Choose Life, Reduce Newborn Deaths is a campaign championed by The Philippine Society of Newborn Medicine (PSNbM) in partnership with the Department of Health, PhilHealth and Dr. Jose Fabella Hospital to lead the discourse on prematurity as a prevalent national health issue.

Twenty six -year-old Mira of Bulacan gave birth to twins who never got to see the light of day. Mira’s twins MJ and JM were lost to the world’s largest killer of babies: preterm birth complications. The thing with Mira and with most grieving mothers who had lost their children to prematurity is that they think medication is expensive and inaccessible to the poor—this is not entirely true. Possible interventions are within reach; just like the case of Sara Padilla, the 19-year old mom who also gave birth to a preemie, King Phillip. Sara’s baby survived and passed the critical stage due to medical interventions.

Going back to Mira, her twins are, sadly, now part of the infant mortality cases in the Philippines—cases that are badly in need of a dramatic reduction. Albeit locally, the number of under-5 deaths declined significantly in the past twenty years, this is an achievement bound to be short-lived. The slow decline in newborn survival has had us missing out on our millennium development goal in reducing child mortality by two-thirds this 2015. (PSNbM Press Release)

#WorldPrematurity Day

The annual event, which takes place across the world every November 17, brings people together to raise awareness of the global problem of preterm birth, which is the leading cause of death globally in children under the age of five.

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.

According to the EFCNI, more than 200 countries participated in activities, and more than 60 countries planned special events. It is estimated that 1.6 billion people around the globe were reached in 2014.

Signs of Preterm Labor

In 2003, March of Dimes launched the MOD Prematurity Campaign. The campaign was centered in two goals namely (1) raising public awareness on the problems of prematurity, and (2) decreasing the rate of premature birth in the U.S.

The campaign specifically funds and encourages investment to research on the causes and possible interventions to preterm births. It also aims to educated women about risk-reduction strategies and the signs of preterm labor, as well as generate concern and multi-sectoral action on the problem.

In 2012, March of Dimes released the following video on the signs of preterm labor which is an updated version of its 2008 video on the same topic.

At Least 39 Weeks

Healthy Babies are Worth the Wait® is one of the recent campaigns of the March of Dimes. It aims to reduce elective deliveries before 39 weeks gestation. According to Babycenter.com, more and more first-time moms are asking about scheduling their baby's delivery by c-section, even when there's no clear medical reason to do so. Although more moms are interested in surgical delivery, major medical organizations are headed in the opposite direction, urging healthcare providers to avoid performing unnecessary c-sections.

There are two main reasons why at least 39 weeks of pregnancy is needed. First, the baby's brain, eyes, ears and lungs are still developing in the last few weeks of pregnancy. In fact, a baby’s brain at 35 weeks weighs only two-thirds of what it will weigh at 39 to 40 weeks. Second, a pregnant woman's due date is an estimate, hence there is a possibility that it is off by one to two weeks. (March of Dimes)

Kangaroo Mother Care

The newborn's basic needs are warmth, nutrition, protection & stimulation.

Kangaroo Mother Care (KMC) is a high-impact, cost-efficient intervention that has proven effective in saving the lives of premature/LBW newborns. KMC is the early, prolonged and continuous skin-to-skin contact between the mother (or adult substitute) and her baby—both in hospital and after discharge—with support for feeding (ideally exclusive breastfeeding) and close follow-up after early discharge from the hospital. This approach helps regulate the baby’s body temperature, facilitates early initiation of and continued breastfeeding, reduces the risks of infection, and enhances brain growth and development.

Kangaroo Mother Care is one of the feasible and cost-effective care interventions in saving premature babies.

Visit the VYLH-Philippines #WorldPrematurityDay Album for some quick facts and infographics.

Premature birth is a very serious health problem. Worldwide, 15 million babies are born preterm and more than a million...
Posted by Volunteer Youth Leaders for Health - Philippines on Friday, October 30, 2015

________________

Related Online Sources

World Prematurity Day Facebook Page.

https://www.facebook.com/WorldPrematurityDay/

EFCNI World Prematurity Day.

http://www.efcni.org/index.php?id=wpd&L=1%27%2522

EFCNI History of World Prematurity Day.

http://www.efcni.org/index.php?id=2150&L=1%27%2522

World Health Organization Fact Sheet on Preterm Birth.
http://www.who.int/mediacentre/factsheets/fs363/en/

World Health Organization: World Prematurity Day.
http://www.who.int/maternal_child_adolescent/news_events/news/2014/prematurity-day/en/

March of Dimes: Prematurity Awareness Campaign.

http://www.marchofdimes.org/mission/march-of-dimes-prematurity-campaign.aspx

March of Dimes: Fighting Premature Birth.

http://www.marchofdimes.org/mission/prematurity-campaign.aspx

March of Dimes: Global Problem of Premature Births.

http://www.marchofdimes.org/mission/the-global-problem-of-premature-birth.aspx

March of Dimes: Born Too Soon (Interactive Map).

http://www.marchofdimes.org/mission/global-preterm.aspx

Born Too Soon: The global action report on preterm births. http://www.who.int/maternal_child_adolescent/documents/born_too_soon/en/

Born Too Soon: Kangaroo Mother Care Saves Preterm Babies (Video). http://www.healthynewbornnetwork.org/multimedia/video/born-too-soon-kangaroo-mother-care-saves-preterm-babies

Baby Center C-section by choice.

http://www.babycenter.com/0_c-section-by-choice_1498696.bc?showAll=true

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Rare Disease bill moves closer to passage

November 9, 2015, 12:36 pm

≫ Next: VYLH welcomes PSNbM as prematurity awareness campaign partner

≪ Previous: Take a break and watch these #FightForPreemiesPH videos

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 the approval of the bill 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 people 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.

The bill also mandates the establishment of a National Rare Disease Registry– a health information system that contains data on the types of rare diseases, persons affected with the disease, and available orphan drugs and products. Data from the registry will also be vital for policymaking.

The bill also requires the referral of rare disease patients to a Regional Newborn Screening Continuity Clinc (NSCC) so that ample medical information and counseling will be provided to rare disease patients and their families.

Also included in the bill are provisions on the continuing education and training of health personnel; public education and information campaigns on rare disorders; development of medical protocols and drugs through research and development; funding for treatment and medication of rare disease patients; tax exemptions; facilitation of the entry of imported orphan drugs and products; and safeguards on the rights and benefits of rare disease patients as PWDs. Aside from the DOH, other government agencies that were identified and tasked under the bill include the Philippine Council for Health Research and Development (PCHRD)-DOST, Food and Drugs Administration (FDA), Philippine Health Insurance Corporation (PhilHealth), National Institutes of Health (NIH), Department of Social Welfare and Development (DSWD) and Department of Labor and Employment (DOLE).

On the other hand, the movement of the bill’s Senate version also showed great strides. Last October 7, Senator Pia Cayetano and Teofisto Guingona III of the Senate Committee on Health and Demography filed Senate Committee Report 286 which consolidates the five rare disease bills in the Senate into one bill, Senate Bill 2990. According to the committee report, four other committees were involved in the crafting of the bill namely the committee on social justice, welfare, and social development; ways and means; youth and finance.

A day after the resumption of the Senate's session (November 4), the Senate Committee Report was presented to the Senate. This is with Senator Pia Cayetano's sponsorship speech on SB 2990 - The Rare Disease Act of the Philippines.

As she asked for the swift passage of the bill, Sen. Pia Cayetano said that "on a policy level, this (SB2990) is a health bill which aims to reduce child mortality and reduce poverty. However, for the Filipinos who are directly affected by this condition, this measure will relieve some of the economic burden of managing rare diseases. More importantly, the can hope for a better quality of life for the ones they love".

Senator Pia S. Cayetano poses for a photo with her guests at the Senate gallery before delivering her speech on SBN 2990...
Posted by Pia Cayetano on Tuesday, November 3, 2015

VYLH-Philippines prepared a video of the sponsorship speech excerpted from the Senate video coverage of the session. The transcript of speech was uploaded in her website (senatorpiacayetano.com).

NAST sponsors Science Legislative Forum

A few days after approval of the Rare Disease bill in the House, the National Academy of Science and Technology - Department of Science and Technology (NAST-DOST) hosted a Science Legislative Forum (SLF) on Rare Diseases at the Philippine International Convention Center (PICC) last September. The forum aims to review the global scenario of rare disease; assess the Philippine situation and discuss challenges in the care of rare disease patients; orient various stakeholders on the proposed Rare Disease Act; and discuss the role of concerned government agencies.

Participants of the NAST-DOST SLF on Rare Disease (Photo: NAST-DOST).

During the forum, NAST Academician and SLF focal person Dr. Carmencita Padilla renewed her call for the passage of the Rare Disease Act. This is after the Roundtable Discussion on Rare Disease organized by NAST on October 2014. In relation to the importance of the bill’s passage, Dr. Padilla noted that “Even if we are just talking about one, ten, twenty, thirty or a hundred versus a hundred million, they sill deserve a right to life”. Dr. Padilla also expressed her hope that the bill will be passed within the 16th Congress.

Talking on the local and global setting, Dr. Mary Ann Abacan of the Institute of Human Genetics-NIH, UP Manila noted the challenges to the rare disease community such as the missed or delayed diagnosis of patients which often results to irreversible damages; the limited availability and high cost of treatment; and the social and emotional burden on patients and their families.

Dr. Anthony Calibo, Supervising Health Program Officer of the Family Health Office-DOH, discussed the integration of care of patients with rare diseases in the public health care system. He noted the action of DOH including the implementation of RA9288, the services available in NSCCs and the increasing attention to the “Kalusugan Pangkalahatan” or Universal Healthcare campaign.

At the end of the SLF, the participants raised their hands in support of the Rare Disease Bill. The SLF was attended by doctors, health professionals, scientists, government officials and advocates. (RPascual, with reports from GMANews, NAST-DOST)

The National Academy of Science and Technology, Philippines (NAST PHL) held the Science Legislative Forum (SLF) on Rare...
Posted by National Academy of Science and Technology (NAST), Philippines on Wednesday, September 30, 2015

Change.org Petition

VYLH-Philippines and the Philippines Society for Orphan Disorders (PSOD) launched an online petition for the urgent deliberation and passage of the Rare Disease Act within the 16th Congress. Both organizations invite the public to visit the Change.org petition (Change.org/RareDiseaseActPetition or bit.do/careforrare).

The easiest way to show your support for Filipinos with rare disorders is just a click away.Support the plight and...
Posted by Volunteer Youth Leaders for Health - Philippines on Thursday, July 24, 2014

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VYLH-Philippines was invited to the attend NAST-DOST SLF on Rare Disease. Representatives from VYLH-Philippines were present during the event namely NCR-South Luzon Coordinator Rufus Thomas Adducul and Maris Cura. The network extends its deepest gratitude to NAST-DOST for considering VYLH-Philippines as youth representative to its events related to the rare disorder support advocacy.

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VYLH welcomes PSNbM as prematurity awareness campaign partner

November 11, 2015, 12:57 pm

≫ Next: Are you at risk for premature birth? Preterm risk factors and how to reduce the risk

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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.

Quick Facts on Preterm Births

Prematurity is the leading cause of newborn deaths, and second-leading cause of death in children under the age of 5 (after pneumonia)
Preterm/Preemies/Premmies are babies born alive before 37 weeks of pregnancy are completed.
1 in 10 babies are born premature, worldwide
15 Million babies are "born to soon" every year and the numbers are rising
Almost 1 million children die each year due to complications of preterm birth
Babies who survive often have long-term health problems, including cerebral palsy, intellectual disabilities, chronic lung disease, blindness, and hearing loss.
More than 60% of preterm births occur in Africa and South Asia, but preterm birth is truly a global problem.
Babies born between 32 and less than 37 completed weeks of pregnancy (Late Preterm) make up 85 percent of the 15 million preterm babies born annually– 12.6 million. Late Preterm babies have a good chance of survival if the basic, low cost interventions are in place.
More than three-quarters of premature babies (>75%) can be saved with feasible, cost-effective care such as essential newborn care, antenatal steroid injections to pregnant women at risk of preterm labor; provision of antibiotics to newborns; and, kangaroo mother care.

Compiled from the World Health Organization and the March of Dimes.

Preemies in the Philippines

The Philippines ranks…

2^nd in the number of premature births in Southeast Asia.
8^th in the number of premature births worldwide.
12^th in terms of preterm births per 100 births (preterm birth rate).
14^th in terms of deaths due to complications from preterm birth worldwide.
Deaths due to complications of preterm birth account to 39% of neonatal deaths.

This is according to “Born Too Soon: The Global Action Report on Preterm Birth”, the first global report which provided national, regional and global estimates of preterm births. The report published in 2012 was produced by the March of Dimes, The Partnership for Maternal, Newborn & Child Health, Save the Children and the World Health Organization in support of the UN's Every Woman Every Child effort.

Napaagang Panganganak: Alamin. Sagipin. Kalingain.
(A.S.K. Dok!)

For the promotion of public awareness on preterm births, VYLH-Philippines adapted PSNbM’s Prematurity Awareness Month theme,"Napaagang Panganganak: Alamin. Sagipin. Kalingain." (Preterm Births: Know. Save. Care.). The theme is grounded on the need to instill to the Filipino society the importance of consulting our doctors on health concerns and issues, hence “A.S.K. Dok!”. Since pregnancy is a delicate condition, it is of great importance for expectant mothers to be fully aware of their needs, the baby’s needs, potential risks, and strategies in improving the outcome of the pregnancy – especially on preventing preterm birth and possible complications of preterm births.

Alamin (Know)

Even though a pregnant mother does everything right, preterm labor is still a posibility. Preterm labor means that the baby is starting to be born early, before nine months of pregnancy. It is important that expectant mothers should know that:

Babies born to early may have more health problems or need to stay in the hospital longer.
The specific cause of preterm birth is not yet clear. However, there are factors that may increase the risk of preterm birth such as

previous preterm pregnancy
multiple pregnancy (twins, triplets etc.)
a short interval between pregnancy (>6 months)
problems with the uterus, cervix or placenta,
smoking and illegal drug use,
poor nutrition,
some infections in the placenta or urinary tract,
chronic conditions such as high blood pressure and diabetes,
being underweight or overweight before pregnancy
stressful live events
multiple miscarriages or abortion
physical injury or trauma

Learning the signs of preterm labor may help you keep your baby from being born to early.

Get a copy of our "Signs of Preterm Labor Brochure"
Download (DOH. IHG, MoD)

Contractions for every 10 minutes, or more often
Bleeding or change in the color of vaginal discharge
Feeling that the baby is pushing down (pelvic pressure)
Low, dull backache
Cramps, similar to menstrual cramps
Belly cramps with or without diarrhea

Elective non-medically indicated delivery of the baby before the 39th week of pregnancy is not recommended. (Remember: Health Babies are Worth the Wait(R)). Here are some reasons:

Your baby’s brain, eyes, ears and lungs are still developing in the last few weeks of pregnancy.
A baby’s brain at 35 weeks weighs only two-thirds of what it will weigh at 39 to 40 weeks.
Remember, your due date is an estimate. It could be off by a week or two.

In case any of the signs of preterm labor is felt (even only one) and it doesn't go away, it is important to call a doctor or healthcare practitioner, or go to a hospital.

Try not to worry too much.
Getting help quickly is the best thing you can do.

Sagipin (Save)

Saving Preemies (TIME, May 2014)

Always remember thateveryone has the right to life. Preterm birth is not a death sentence. There is HOPE.

Cutting-edge medicine and dedicated healthcare providers are helping preemies survive. Medical advances have helped improved survival and long-term health for babies born as early as 22 weeks. There are also feasible, cost-effective interventions that can save more than 75% of premature babies such as:

Essential care during child birth and in the postnatal period for every mother and baby;
Antenatal steroid injections given to pregnant women at risk of preterm labor and to strengthen the babies’ lungs);
Kangaroo mother care - the baby is carried by the mother with skin-to-skin contact and frequent breastfeeding); and
Antibiotics to treat newborn infections.

Kalingain (Care)

The newborn's basic needs are warmth, nutrition, protection & stimulation.

Kangaroo Mother Care (KMC) is a high-impact, cost-efficient intervention that has proven effective in saving the lives of premature/LBW newborns.
KMC is the early, prolonged and continuous skin-to-skin contact between the mother (or adult substitute) and her baby—both in hospital and after discharge—with support for feeding (ideally exclusive breastfeeding) and close follow-up after early discharge from the hospital.
This approach helps regulate the baby’s body temperature, facilitates early initiation of and continued breastfeeding, reduces the risks of infection, and enhances brain growth and development.

Reduce preventable deaths among newborns. “Prematures represent one of the most vulnerable population of Filipinos”. This is according to Dr. Anthony Calibo of the Child Health Development Division – Disease Prevention and Control Bureau (DOH). During the launch of #HingaHingalo, Dr. Calibo noted that interventions can be done while the baby is still in the womb and the moment when they are born. The campaign on prematurity awareness will also contribute in the reducing newborn deaths.The 2013 National Demographic and Health survey reveals that newborn deaths were reduced from 18 per 1000 in 1998, 16 in 2008 and down to 13 deaths in 2013. As Dr. Calibo called for continuous action beyond the 2015 Millennium Development Goal, he mentioned that “reducing child mortality is an unfinished business, and we still have a long way to go to really ensure that no newborns die. Their deaths can be prevented, and with your help, we can ensure that more children survive the complications preterm births bring.”

Everyone has a role. According to former PSNbM President Carina Quimbo, the number of neonatologists are not enough in the country. From the 89 certified neonatologists, 50 percent are in Metro Manila hence making it difficult to cover all areas in the country. Quimbo added that newborn survival doesn’t depend on doctors alone. Doctors (neonatologists, obstetricians and other specialties), the allied medical professions, national agencies such as PhilHealth and DOH should work hand-in-hand in addressing the problem.

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Philippine Star. #HingaHingalo ni Baby gives prematures a chance. 02 March 2015. https://sg.news.yahoo.com/hingahingalo-ni-baby-movement-gives-000000385.html

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

November 13, 2015, 7:16 pm

≫ Next: WHO, UNICEF-PHL release advocacy videos on #WorldPrematurityDay

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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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WHO, UNICEF-PHL release advocacy videos on #WorldPrematurityDay

November 18, 2015, 9:59 am

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

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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.

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

November 29, 2015, 9:09 pm

≫ Next: 2015: A VYLH-Philippines Throwback

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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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