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The Official Publication of Volunteer Youth Leaders for Health - Philippines

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    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.


    Volunteer Recruitment

    Youth camps and orientations were held in Central Visayas, National Capital Region, Cordillera Administrative Region, Central Luzon and CARAGA. These orientations were made possible through the assistance of the Department of Health Regional Offices (DOH III, VII, NCR, CAR, and CARAGA), and Newborn Screening Centers (NSC Central Luzon, NIH, Visayas and Mindanao). Starting from the Central Visayas Camp, new volunteer youth leaders were enlisted to our fifth batch dubbed as Batch Hiraya. Hiraya is a Filipino word for dream, imagination, or vision. This was the first time for VYLH-Philippines to adopt a single Filipino word for a batch name, and the first time the camp was opened to the public—augmenting those who were recommended by schools and organizations. These applicants were subjected to an application and screening procedure designed by the cluster.

    Related:VYLH Central Visayas welcomes Batch Hiraya


    VYLH in the Universities

    Growing university networks continue to diversify throughout the country. In Northern Luzon, VYLH-Philippines was able to reach student leaders from Kalinga State College, University of Cordillera and Benguet State University through the help of DOH-CAR Regional Office.

    Photo: Dr. Virginia Narciso (DOH-CAR)
    The student network in UP Manila and Los Baños also showed progress. In UP Manila, a number of student organizations from different colleges and the College of Public Health Student Council have been active partners in activities conducted by the network in the campus, while in UP Los Baños, seven student organizations have already enlisted their support to VYLH-Philippines and its advocacies. During the first semester of AY 2015-2016, more than 300 students comprise the UP Los Baños network. The network is composed of the UPLB Genetics Society, UPLB Microbiological Society, UP Oikos, UP Community Broadcasters’ Society, UNESCO Club UPLB, Philippine Association of Nutrition Alpha-Omega Chapter, and Concordia Scientia Animalis.

    UP Manila students joining VYLH-Philippines UP Manila activities (Photo: Shaila Bautista)
    and UP Los Baños students handling "I Care for Rare" placards for Rare Disease Week 2015

    In Iloilo, NSC Visayas sponsored the first Students’ Forum on Expanded Newborn Screening and this was attended by student leaders coming from West Visayas State University, St. Paul’s University-Iloilo, Central Philippine University, University of San Agustin, and Iloilo Doctor’s College. In Cebu and Dumaguete, a VYLH-Philippines Advocacy Forum was held at the University of San Carlos and Collegio de Santa Catalina de Alejandria, while in Siquijor, VYLH-Philippines volunteers, together with the Supreme Student Government of Siquijor State College, conducted a school-wide Youth for Health Symposium and it was attended by SSC students and faculty.

    In Butuan, VYLH-Philippines CARAGA volunteers conducted a forum on newborn screening and folic acid among the BS Radiologic Technology students of Asian College Foundation.

    Social Involvement

    L to R: Mr. Floyd Edrea, Dr. Carmencita Padilla and
    Mr. Christian Emmanuel Enriquez
    Two volunteer youth leaders were also selected to participate the National Academy of Science and Technology Future Health Leaders Workshop. VYLH-Philippines National President Mr. Christian Emmanuel Enriquez, together with former Vice President for Visayas and current Visayas Cluster Secretariat Mr. Floyd Edrea, was invited to attend said workshop. The NAST workshop is designed for promising leaders below 40 years old, with demonstrated outstanding accomplishments in clinical medicine, medical education, public health, health policy, or any health related program development. The workshop is tailored for individuals who show significant leadership potentials in their chosen fields.

    VYLH-Philippines also participated in two events organized by the National Academy of Science and Technology (NAST), an agency under the Department of Science and Technology (DOST). These include the Roundtable Discussion on Folic Acidwherein the proposed legislation on folic acid supplementation and fortification was presented and the Science Legislative Forum on Rare Diseases in support of the Rare Disease Bill filed in Congress. 

    VYLH-Philippines participated in two NAST-organized events: (L) Roundtable Discussion on Folic Acid on July 23, 2015
    and (R) Science Legislative Forum on Rare Diseases on September 2, 2015

    As part of its efforts in promoting the network and its advocacies, VYLH-Philippines volunteers participated in various regional, national and international events. Volunteers were able to participate in this year’s Cordillera Youth Congress (January) and Global Youth Summit-Manila (March). The network also joined the NBS Orientation for NCR MAPEH (Music, Arts, Physical Education, and Health) Teachers (April) wherein a lecture on the role of the youth in NBS promotion and the need to integrate NBS in the Grade 8 MAPEH curriculum was given. VYLH-Philippines National President Mr. Christian Emmanuel Enriquez and CARAGA Regional Coordinator Mr. Anthony Torralba presented the role of the youth in health issues and the works of VYLH-Philippines volunteers at the 13th National Newborn Screening Convention (October) and First CARAGA Newborn Screening Convention (December), respectively.

    Related: The Youth speaks for a healthier Philippines
    CARAGA Regional Coordinator Anthony Torralba (in blue) at the First CARAGA NBS Convention (L)
    and National President Christian Emmanuel Enriquez at the 13th National NBS Convention (R).
    On the other hand, NCR-South Luzon Cluster Coordinator Mr. Rufus Adducul presented the experience of the Institute of Human Genetics of NIH-UP Manila in organizing VYLH-Philippines and the achievements of the youth network during the first Colleges and Universities Public Service Conference (CUPSCon) organized by the University of the Philippines (November). Lastly, VYLH-Philippines was represented during the 12th Asian Congress of Nutrition (ACN) in Japan by Former National President Mr. Ryan Pascual. VYLH-Philippines also participated this year’s ACN poster presentations.

    Related: IHG-NIH and VYLH highlight the Youth's Role in Health Promotion at CUPSCON

    VYLH-Philippines NCR-South Luzon Cluster Coordinator Rufus Adducul at CUPSCON (L)
    and Former National President Ryan Pascual (R) at the 12th ACN (R).


    DOH-Central Visayas NBS Fun Run
    VYLH-Philippines volunteers also participated in the Reunion of Saved Babies and Newborn Screening Fun Run. The Reunion of Saved Babies is an annual event organized by the Newborn Screening Centers nationwide. This year, volunteers were able to participate in various areas namely Dumaguete, Iloilo, Cebu, Talisay, Tagbilaran, Tacloban, and Davao. More than volunteering and serving patient-families, the event is an occasion where volunteers can interact with  children saved by the network’s advocacies. It is through this interaction that the volunteers can fully appreciate the role they play while being a part of VYLH-Philippines. On the other hand, Cebu-based volunteers were also able to participate in this year’s Newborn Screening Fun Run organized by DOH-Central Visayas. 

    VYLH-Philippines joined the Reunion of Saved Babies held in
    Dumaguete, Iloilo, Talisay, Cebu, Tagbilaran, Tacloban and Davao

    VYLH-Philippines volunteers and Newborn Screening Centers also participated in this year’s National Pregnant Women’s Day Celebration (Buntis Day) organized by the Philippine Obstetrical and Gynecological Society (POGS). The said event is held every March 10. Members from Manila, Los Baños, Lipa City, Cebu, Iloilo and Davao were able to participate in this national event. This year’s VYL participation is the biggest in four years. VYLH-Philippines has always been an active participant of the Buntis Day Celebration since 2012– the same year when POGS successfully claimed the Guinness Record on the Largest Prenatal Class held in multiple locations. Buntis Day is considered as one of the major occasions where the network can reach a large number of expectant mothers – one of the target audiences of VYLH-Philippines advocacies. Materials on folic acid supplementation, prematurity awareness, newborn screening, and a number of freebies were distributed during the activity.

    Related:VYLH-Philippines joins Buntis Day 2015



    VYLH-Philippines also spearheaded the national “Raise your Hands for Rare” campaign together with the Philippine Society for Orphan Disorders (PSOD) in celebration of National Rare Disease Week and International Rare Disease Day last February 2015. The campaign was aligned with similar international efforts under the theme – “Living with a Rare Disease: Day-by-day, Hand-in-hand”.

    Related:Social Media activities for Rare Disease Week 2015





    Another milestone in the rare disease support advocacy is the “I am Rare” event organized by VYLH-Philippines UP Manila where volunteers organized a one-day program filled with fun activities for children with rare diseases. Said event aimed to increase public awareness on rare diseases and how they can support the cause. Articles about the activity and the network were published in ABS-CBN Publishing Inc.’s Metro Society magazine, and Health Ripples, The UP Manila Health and Life magazine.

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

    Excerpt from the Metro Society magazine article, Power of the Youth (June 2015 Issue)

    VYLH-Philippines also joined the Philippine Society for Orphan Disorders and the Institute of Human Genetics in holding their Christmas parties for children with rare genetic conditions and Philippine General Hospital Clinical Genetics patients. The latter dubbed as I am IHG (I am In for Hope-Giving) was a collaboration with the Institute of Human Genetics-NIH, UP Manila students, sponsors, and institutional partners.



    Thank you for the love for these kids! Maligayang Pasko 󾌲
    Posted by Rufus Thomas Adducul on Monday, December 14, 2015


    Social Media and Online Campaigns

    This year, a large amount of campaign materials in the form of infographics and videos were made available to the public through social media. These materials cover expanded newborn screening, prematurity awareness, and the rare disease advocacy. VYLH-Philippines also led the online community with the following advocacy hashtags: #NBSsaves, #ENBSph, #FightForPreemiesPH, #RareDiseaseDayPH, and #DubsmashForACause. 

    The hashtag campaign was amplified in social media during the celebration of the network’s 6th Founding Anniversary. In our first “Dubsmash Thursday”, VYLH-Philippines volunteers were invited to dub audio recordings about newborn screening and the PSOD Rare Disease song, Lalaban Kami, using the popular app, Dubsmash. Through these efforts, VYLH-Philippines has once again proved that the use of social media and popular mobile applications in connecting volunteer youth leaders and the promotion of our advocacies is a certified #TatakVYLH.

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



    #DubsmashThursdayMaking advocacy more fun than ever! Join us this Thursday as we Dubsmash for a Cause! Search NEWBORN SCREENING on Dubsmash and hit play! Ask for Newborn Screening! "A single drop of blood, saves live" #NewbornScreening #Dubsmash #VYLHPhilippines #Advocacy #TatakVYLH
    Posted by Volunteer Youth Leaders for Health - Philippines on Wednesday, July 15, 2015

    The network’s expanded newborn screening video featuring Dr. Carmencita Padilla’s MedTalk (CNN Philippines) Interview, and Newborn Screening Jingle lyric video were released during the National Newborn Screening Week. These videos were later shown during the 13th National Newborn Screening Convention. The Newborn Screening Jingle was commissioned by DOH-NCR Regional Office and was released in 2014.

    Related: The NBS Playlist: Watch. Share. Celebrate #NBSWeek2015
    YouTube: Dr. Carmencita Padilla's MedTalk (CNN Philippines) Interview


    A series of expanded newborn screening infographics was also released this year conforming to its first year of implementation. The infographics focused on the comparison between NBS basic six-test panel and expanded NBS which covers 28 disorders, and the importance of expanded NBS.


    VYLH-Philippines Infographics on Expanded Newborn Screening
    (Facebook Album)

    In our effort to collaborate with our advocacy partners, poster designs were shared and submitted for the Jingle Video Making Contest and the National Newborn Screening Week to DOH-NCR and the Newborn Screening Reference Center, respectively. Both materials were also published in the August-September Issue of Newborn Screening, the official newsletter of the NSRC.


    Recently, Dr. Salimah Wallani of the March of Dimes Global Programs commended the network’s innovative visuals on the campaign for prematurity awareness. Dr. Wallani disclosed that “[VLH-Philippines] are an example of young people who take charge.” These were part of the network’s intensified online effort to increase global awareness on preterm birth situation and the prevention of preterm births. The release of these materials coincided with the commemoration of World Prematurity Day last November 17.VYLH-Philippines also gained the concurrence of the Philippine Society for Newborn Medicine (PSNbM) on the network’s adoption of their Prematurity Awareness Month theme, “Napaagang Panganganak: Alamin, Sagipin, Kalingain (ASK Dok!).” Aside from the folic acid awareness campaign for neural tube defects prevention, the campaign on preterm births is aligned with the call for youth engagement spearheaded by the March of Dimes – Global Network for Maternal and Infant Health (MoD-GNMIH).

    VYLH-Philippines Prematurity Awareness materials (Facebook Album on (1)Infographics/ (2)World Prematurity Day)








    In relation to the rare disease advocacy, VYLH-Philippines continuously updates the public on legislative developments through online posts and petition updates through Change.org. A petition video for the Change.org petition was also prepared.

    Related:Rare Disease Bill moves closer to passage.










    Moving Forward

    Next year, VYLH-Philippines will try to go further with regional orientations across the country. These regional orientations would eventually provide the network inputs and insights on revitalized leadership which the network will focus on 2017.


    The year 2016 will also mark the official participation of the network to the Second World Birth Defects Day celebration. The annual celebration held every March 3 and is spearheaded by the March of Dimes and eleven international organizations. World Birth Defects Day aims to raise awareness of this serious global problem and advocate for prevention, care, and research. Earlier this year, VYLH-Philippines joined the First World Birth Defects Day through the worldwide Thunderclap which March of Dimes also organized. The network’s participation marked the Philippines among the 34 countries that supported the said event.


    Lastly, the network is looking forward to join the celebration of the first two decades of Newborn Screening in the Philippines (1996-2016). As mentioned in the recent National Newborn Screening Convention, one of the goals that is expected to be achieved by 2016 is to increase the national newborn screening coverage to 95% (35% of which are ENBS) through advocacy-related initiatives. With this, VYLH-Philippines will continuously strive to represent the youth as an active and dynamic partner-stakeholder, and lead the youth’s contribution in promoting newborn screening among peers and the community. 

    This year was indeed filled with great opportunities for the network and its members. It is our hope and prayer that the support given by our mentors, partners and volunteers will continue as we take bigger and bolder challenges this 2016.#

    Written by RPascual (NCR-South Luzon)
    Edited by: JBarredo (Mindanao)


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    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. SPBaula



    ____________________
    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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    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

    ____________________
    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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    Repost from WorldBDday-PHL


    MANILA - Under the auspices of UP Manila Chancellor Dr. Carmencita Padilla, the three lead organizations constituting the World Birth Defects Day (WorldBDday) PHL Secretariat namely the Institute of Human Genetics  (IHG-NIH,UP Manila), Newborn Screening Reference Center (NSRC-NIH, UP Manila), and Volunteer Youth Leaders for Health (VYLH)-Philippines  gathered different national agencies, NGOs and student organizations for the first meeting of partners for WorldBDday. The meeting was held at the UP Manila Chancellor's Board Room on January 20, 2016. 



    Twenty one participants representing thirteen organizations attended the event. The represented agencies include the Department of Health (DOH), National Academy of Science and Technology (NAST) - Department of Science and Technology (DOST), Food and Nutrition Research Institute (FNRI) - DOST, Philippine Council for Health Research and Development (PCHRD) - DOST, Integrated Midwives Association of the Philippines (IMAP), Philippine Obstetrics and Gynecological Society (POGS), Philippine Association of Speech Pathologists, Operation Smile Philippines, Philippine Band of Mercy, A.N.A.K. Foundation (Aruga ng Nanay sa Anak na may Kapansanan), UP Manila University Student Council (UP Manila USC), UP Manila Health Sciences and Pre-Med Society (UPM HS+PM), and BIGKIS-UP Manila. 

    Representatives of partner government agencies, NGOs and student organizations take a pose with UP Manila Chancellor Carmencita Padilla at the UP Manila Chancellor's Board Room. (Photo: VYLH-Philippines)

    UP Manila Chancellor Dr. Carmencita Padilla and IHG Director Dr. Mary Ann Chiong opened the meeting by giving an inspirational talk and the welcome message, respectively. Since one of the objectives of the meeting is to introduce birth defects and the WorldBDday campaign among potential partners, lectures on birth defects and preventive strategies, local birth defects surveillance initiatives, and the importance of preconception care were given by IHG WorldBDday Committee Head Dr. April Berboso, NSRC Director Dr. Maria Melanie Liberty Alcausin and Ms. Aster Lyn Sur, RN. Meanwhile, the significance and mechanics of World Birth Defects Day Social Media and Online Campaign was presented by VYLH-Philippines NCR-South Luzon Coordinator Mr.Rufus Adducul.

    Related: WorldBDday PHL Campaign Materials Now Online

    After the presentations, each of the agencies was called for activity pledges, as well as asked for their comments and suggestions on the event. Dr. Jaime Montoya representing PCHRD and NAST (Health Sciences Division) recommended the formulation of a national theme in the vernacular in order to attract the attention of the public. On the other hand, representatives from government agencies also called for earlier preparations for the next World Birth Defects Day in order for the event to be considered in their budget preparations. 

    About WorldBDDay. Held every 3rd day of March, WorldBDday is a global campaign to raise awareness on birth defects and expand birth defects surveillance, prevention, care, and research worldwide. The event was launched on March 3, 2015 by a consortium of twelve international organizations which include the March of Dimes and the International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR) and the US Centers for Disease Control and Prevention (US CDC). This is in response to the 2010 World Health Assembly resolution (EB126.R6) urging member states to raise awareness and develop programs for the prevention and care of birth defects.

    WorldBDday is grounded on five goals namely to increase global awareness about the occurrence of birth defects; increase awareness of available treatment services; expand referral and care services for all persons with birth defects; increase implementation of programs to prevent birth defects; and encourage the public, governmental agencies, non-governmental organizations, and healthcare providers to improve the care of affected children. 

    Call for Partners. The ​WorldBDDay-Philippines Secretariat calls for organizations and agencies interested to join and contribute to the Philippines' formal observance of World Birth Defects Day. Last year, the Philippines' participation was initiated by VYLH-Philippines as it joined and promoted the World Birth Defects Day Thunderclap. This act helped in placing the Philippines among the 34 identified countries of the social media campaign's supporters. This year, the ICBDSR coordinated with Dr. Padilla and suggested the inclusion of representative agencies to the global partners of WorldBDDay. 

    Interested parties may contact the ​WorldBDDay-Philippines Secretariat through the Institute of Human Genetics (Tel. 526-1725/525-7459/Fax 526-9997/email worldbddayph@gmail.com) and the WorldBDday Philippines Facebook Page (fb.com/worldbddayph).# (RPascual)

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    MEDIA RELEASE
    Health Promotion Update

    Every year nearly 8 million babies around the world—6 percent of all births (1 in 33 babies)—are born with a serious birth defect. It is also estimated that around 3.3 million children less than 5 years of age die annually because of serious birth defects. In many countries, birth defects are one of the leading causes of death in infants and young children. In the Philippines, congenital anomalies rank among the top 20 causes of death across the life span and are the third leading cause of death in the infancy period. Babies who survive and live with these conditions are at an increased risk for long-term disabilities. The effects of birth defects are not only limited to individuals and their families since these conditions also impact their communities, and all of us.

    To increase global awareness on these conditions, ​a growing network of local and international organizations have jointly observed and dedicated the 3rd day of March as "World Birth Defects Day"

    What is World Birth Defects Day?

    Held every 3rd day of March, World Birth Defects Day (WorldBDday) is a global campaign to raise awareness on birth defects and expand birth defects surveillance, prevention, care, and research worldwide. The event was launched on March 3, 2015 by a consortium of twelve international organizations which include the March of Dimes and the International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR) and the US Centers for Disease Control and Prevention (US CDC). This is in response to the 2010 World Health Assembly resolution (EB126.R6) urging member states to raise awareness and develop programs for the prevention and care of birth defects.

    Specifically, The observance of World Birth Defects Day is grounded on five goals namely:
    • to increase global awareness about the occurrence of birth defects; 
    • to increase awareness of available treatment services; 
    • to expand referral and care services for all persons with birth defects; 
    • to increase implementation of programs to prevent birth defects; and 
    • to encourage the public, governmental agencies, non-governmental organizations, and healthcare providers to improve the care of affected children. 

    About WorldBDday-Philippines

    During the launch of World Birth Defects Day last year, the Philippines' participation was initiated by VYLH-Philippines as it joined and promoted the World Birth Defects Day Thunderclap. This act helped in placing the Philippines among the 34 identified countries where supporters of the social media campaign came.

    This 2016, the ICBDSR coordinated with UP Manila Chancellor Dr. Carmencita Padilla and suggested the inclusion of representative agencies to the global partners of WorldBDDay, including VYLH-Philippines. With this, the WorldBDDay-Philippines Secretariat was formed by the collaboration of three organizations and the Newborn Screening Centers (NSCs) in the country:
    • Institute of Human Genetics-NIH, University of the Philippines Manila
    • Volunteer Youth Leaders for Health-Philippines
    • Newborn Screening Reference Center-NIH, University of the Philippines Manila
    • Newborn Screening Centers (North Luzon, NIH, Southern Luzon, Visayas and Mindanao)

    Partners from different government agencies, non-government and student organizations have also formally agreed to support the WorldBDday campaign in the Philippines. As of February 26, there are 19 organizations that have joined the campaign. Click here to see the list of official partners [LINK].

    First Meeting of WorldBDday Partner Organizations at the Chancellor's Board Room, UP Manila

    The Philippine WorldBDday Theme

    As agreed during the first meeting of WorldBDday-PHL partners on January 20, 2010, a local theme will be formulated in order to get the attention of the public and establish a connection among Filipinos. This year which is also the first formal observance of WorldBDday in the country, WorldBDday-PHL will be observed with the theme, "Sa Sama-samang pagkilos at pagkalinga, Sa Birth Defects, Tayo ay may magagawa"(“Responding to Birth Defects through Collective Action and Better Care”).


    Sama-samang Pagkilos refers to our collective efforts channeled through various activities such as birth defects prevention through health promotion, advocacy and awareness campaign activities, birth defects surveillance and research. These activities are important in promoting public awareness on birth defects - a common, costly, and critical public health challenge. 
    • Health Promotion and Birth Defects Prevention. With some birth defects preventable through lifestyle changes and healthier choices prior and during preganancy, there is a need to increase the awareness of future parents on such strategies that will provide each baby a great and healthy start.
    • Birth Defects Surveillance. Birth defects surveillance is important in finding and collecting information about the prevalence and possible causes of birth defects. The data from birth defects tracking systems are useful to public health officials, policymakers, and scientists. Still, there is a need to intensify birth defects surveillance in the country.
    • Research. With the causes of most birth defects remaining unknown, supporting birth defects research is important in order to determine underlying causes and develop measures for birth defects prevention.
    Pagkalinga corresponds to healthcare services made available to persons with birth defects and the support given to patient families. Persons living with serious birth defects may suffer lifetime disability but good quality healthcare services can improve their quality of life. 

    Sa Birth Defects, Tayo’y May Magagawa is an affirmation that it is never too late to act on birth defects. We can still do something on birth defects. This statement also relates to existing and future programs by the government and civil society organizations that would support the prevention of preventable birth defects, and improve the welfare of persons with birth defects through better care.

    The Success of the first WorldBDday in Social Media

    On the ground and online activities were done before and during the first WorldBDday (March 3, 2015). In social media, #WorldBDday was launched as the official hashtag for the campaign. The Twitter-sphere was all aglow last March 3, 2015 for the first-ever World Birth Defects Day. In fact, 6,154,146 people were reached worldwide from February 6 to March 4, 2015. More than half of these were obtained during World Birth Defects Day (March 3) through the the Twitter BuzzDay and the WorldBDday Thunderclap, one of the important metrics of the campaign.

    The first WorldBDday Thunderclap was hosted by the March of Dimes and it contributed to the total social media reach of the campaign. Thunderclap is the first-ever crowdspeaking platform that helps people be heard by saying something together. Similar to an "online" flash mob, Thunderclap allows supporters of a campaign to share a single message at the same time thru various social media platforms (e.g. Facebook, Twitter and Tumblr). The first Thunderclap was able to gain 544 supporters from 34 countries and reach 1,101,843 people worldwide. 

    More than half of the campaign social media reach came from the Twiter BuzzDay and the Thunderclap. Photo: ICBDSR

    How can you support #WorldBDday?

    1. Be active on social media and use #WorldBDday
    2. Support the Global Thunderclap
    3. Join the Twitter Buzzday on March 3

    An international media toolkit on WorldBDday was made available by the ICBDSR. Download a copy of the WorldBDday Toolkit [LINK]

    For interested institutions and organizations in the Philippines, you may contact the WorldBDday-PH Secretariat (worldbddayph@gmail.com) to learn more on how to become a PHL partner organization.

    Quick Guide on Joining the WorldBDday Thunderclap


    2. Click "Support with Facebook" and/or "Support with Twitter"
    3. Click "Add My Support"
    4. Click "Authorize App" to allow Thunderclap to post the message on your behalf.

    In Facebook, it asks to access your "Friend List". According to the FAQ, Thunderclap needs to access your "Friend list" in order to calculate social reach for Facebook. The app assures campaign supporters that it will never interact with your friends' accounts, store their information, or post on their behalf.

    After these, Thunderclap will be able to publish the WorldBDday post on your timeline on March 3.
    To learn more about Thunderclap, visit https://www.thunderclap.it/faq

    Go Social #WorldBDday: Suggested Tweets and Posts 

    Support the #WorldBDday campaign by sharing your personal thoughts or by posting any of the suggested posts on Facebook and Twitter. Do not forget to use the hashtag #WorldBDday (not case sensitive) to your tweets.
    I’m ready to raise awareness on March 3 because birth defects are common, critical and costly! #WorldBDday
    Join me March 3 to promote World Birth Defects Day to improve prevention and research worldwide #WorldBDday
    On March 3 let’s spread the word – every child born with a birth defect has the right to have a full and happy life #WorldBDday  
    Birth defects may result in long-term disability, placing a huge burden on families & health-care systems around the world #WorldBDday
    Birth defects survivors may suffer lifetime disability but good health care services may improve their quality of life. #WorldBDday
    Did you know that 1 in 100 newborn has a heart defect? #WorldBDday
    Birth defects affect 1 in 33 infants and result in approximately 3.2 million birth defect-related disabilities every year #WorldBDday 
    Too few countries have a birth defects surveillance program. Why not in all countries? #WorldBDday 
    An estimated 270,000 newborns die during the first 28 days of life every year from birth defects #WorldBDday
    Did you know? Intake of 400 micrograms of folic acid daily can prevent occurrence of neural tube defects (NTD) by up to 70% #WorldBDday
    Did you know? Taking folic acid supplements is the only neural tube defect (NTD) prevention method proven to date #WorldBDday
    In PH, congenital anomalies are among the top 10 causes of infant mortality for the past 50 years (DOH) #WorldBDday 
    The existing birth defects surveillance project in the PH is led by the Institute of Human Genetics,NIH-UP Manila @IHGenetics #WorldBDday  
    Currently, newborn screening in the PH can detect up to 28 disorders #NBSsaves @newbornscreenph #WorldBDday 
    Babies with metabolic disorders look normal at birth. Some Inborn errors of metabolism are detected through newborn screening #WorldBDday
    Alam mo ba? Ilan sa mga birth defects ay maiiwasan sa pagsagawa ng akmang hakbang bago magbuntis at habang nagbubuntis #WorldBDday 
    Paigtingin ang National Surveillance System ng birth defects sa Pilipinas! #WorldBDday
    Join the Twitter BuzzDay on March 3

    On March 3, share your story about the impact of birth defects on you, your child or someone you know. With our partners, we’ll be urging policymakers, researchers, health care providers and citizens across the globe to help improve birth defects surveillance, prevention, care, and research worldwide.

    Plan to post one or more messages using #WorldBDday at some point during the day. Everyone is also invited to retweet both promotional and day-of messages to build the buzz for the day.

    Download Materials and Update Your Social Media Profile

    In preparation for WorldBDday, we would like to invite our partners to update their social media profile (Facebook Profile Picture and Cover Photo), and banner templates for partners.

    Suggested Facebook Profile Pic and Cover Photo
    https://www.dropbox.com/sh/3ojwo4foocsquor/AABmGEudRyE9gZVGmoqlBvS6a?dl=0

    Fansigns
    https://www.dropbox.com/sh/uy7wzlnghm2hafd/AADo7s6QVfmbZCebKXzvFbTqa?dl=0

    Poster and Banner Templates
    https://www.dropbox.com/sh/82b3rgch9cqdlbj/AABIdy3_BnQshMCCe24wnuCQa?dl=0

    Media Toolkit
    https://www.dropbox.com/sh/4eyfcgl1hcbm7wv/AAB9ZQo7SBBAXo27r6hsxj0Fa?dl=0

    Presentations
    https://www.dropbox.com/sh/6ne4tkaiioap5a4/AAC2piODSmk42GGZQQ9dcKeZa?dl=0

    Learn more about Birth Defects

    Birth defects refer to any structural or metabolic abnormality most often present at birth, identified prenatally (before birth) or later in life. The International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR) prepared a Powerpoint Presentation on Birth Defects, get a copy through this link [LINK].

    To learn more about birth defects (congenital anomalies), here are some recommended pages to visit:


    Contact Us! Coordinate with the WorldBDday-PHL Secretariat

    Interested parties may contact the ​WorldBDDay-Philippines Secretariat through the Institute of Human Genetics (Tel. 526-1725/310-1780 loc 108/Fax 526-9997/email worldbddayph@gmail.com) and the WorldBDday Philippines Facebook Page (fb.com/worldbddayph).# (RPascual)


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    • Newborn Screening Continuity Clinics (NSCCs)  provide long-term follow-up management of patients confirmed with heritable disorders.
    • Fourteen (14) NSCCs were established throughout the country before the end of 2014.
    • Initially, one NSCC will be set-up per region. NSCCs are based in regional and provincial referral center identified by the Department of Health.
    • It is hoped that provincial continuity clinics will be established in the future.
    • NSCCs will also assume an important role in the referral and management of rare disease patients as mandated by RA10747.

    Health Promotion and Advocacy Update
    Series of 2016



    Newborn Screening Continuity Clinics (NSCCs)  provide long-term follow-up management of patients confirmed with heritable disorders. Their creation is a response of the Department of Health (DOH) to the mandate of RA9288 (Newborn Screening Act of 2004), as well as its implementing rules and regulations,  on its role on ensuring the establishment of a network of facilities for referral and management of all positive cases. Before the end of 2014, fourteen (14) NSCCs were fully instituted and operationalized. This is according to the Newborn Screening Reference Center's (NSRC) report published in the January-February 2015 Issue of Newborn Screening.

    Following DOH A.O. No. 2014-0035, the establishment of NSCCs will strengthen the National Comprehensive Newborn Screening System Treatment Network by ensuring the early treatment and appropriate management of positive cases. The NSCCs are based in regional and provincial referral centers identified by the DOH. Initially, one NSCC will be set-up per region. It is hoped that provincial continuity clinics will be established in the future. 
    Photo: Newborn Screening/NSRC January-February 2015 Issue

    Photo: Newborn Screening/NSCR January-February 2015 Issue
    Continuity clinics conduct regular monitoring and assessment of patients confirmed with heritable disorders. Continuity clinics also serve as birth defects center under the Philippine Birth Defects Surveillance Project. All of the continuity clinics are manned by at least a full-time nurse and a part-time pediatrician. The NSCC team members ensure that newborns confirmed to be having the disorders in the panel are followed up regularly and get to live normal lives. Their core responsibilities include performing patient and family-centered activities. 



    The NSCC team also maintains a continuous relationship with the family of patients; monitors their compliance to treatment through scheduling, follow-up appointments and workups; facilitates referral of patients to available subspecialists in their facility or region; and provides continuing education to patient, family, and support group.

    NSCCs also collaborate with other agency partners of the program (DOH Regional Offices, Newborn Screening Centers (NSCs), Clinical Genetics Units, Newborn Screening Reference Center (NSRC), health facilities, health practitioners, and local government units) in the course of fulfilling their responsibilities.




    With the recent enactment of RA10747 or the Rare Diseases Act of the Philippines, the NSCCs shall also play an important role in the referral and management of rare disease patients.  As stated in the new law, rare disease refers to disorders such as inherited metabolic disorders and other diseases with similar rare occurrence as recognized by the DOH upon recommendation of the Rare Disease Technical Working Group to be created by the agency. At present, the Institute of Human Genetics-NIH of the University of the Philippines Manila has categorized rare disorders as any health condition resulting from genetic defects that afflicts no more than 1 of every 20,000 individuals in the country.



    The following are the contact details and host facilities of the NSCCs (as of August 2015):
    Source: Newborn Screening Reference Center
    For updates, visit the Newborn Screening Reference Center website (newbornscreening.ph)
    __________________
    Reference: Newborn Screening (The Official Bi-monthly Newsletter of the NSRC) January-February 2015 Issue

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    • With the recent end of the Millennium Development Goals (MDGs), the global community has moved towards the adoption of 17 Sustainable Development Goals (SDGs) that are set to be completed from 2016-2030.
    • Building on the eight Millennium Development Goals (MDGs), the SDGs aim to end poverty, fight inequality, tackle climate change and protect the environment.
    • VYLH-Philippines advocacies primarily respond to the Health SDG (Goal 3) particularly the prevention of newborn deaths and promotion of universal health coverage.
    • In addition to this, promoting public awareness on the importance of folic acid supplementation in the prevention of neural tube defects addresses prevention of potential newborn deaths while the nutritional needs of women in the reproductive age, at the same time.
    • Meanwhile, the enactment and future implementation of the RA 10747 (Rare Diseases Act of the Philippines) will not only address the health of Filipino rare disease patients but also their inclusion to society.

    Health Promotion and Advocacy Update
    Series of 2016


    What are the SDGs?

    The Sustainable Development Goals, also known as Global Goals, were adopted by world leaders at the UN Sustainable Development Summit on 25 September 2015. The 17 goals set for another fifteen years, 2030, aim to end poverty, fight inequality, tackle climate change and protect the environment. The SGDs are included in the 2030 Agenda for Sustainable Development.


    Moving Forward: From MDGs to SDGs

    Built on the progress made by the Millennium Development Goals (MDGs) or the eight anti-poverty targets that the world committed to be achieved by 2015, the SDGs have a broader sustainability agenda that go beyond the MDGs. Adopted in 2000, the MDGs were targets that tackled poverty, hunger, disease, gender inequality and access to water and sanitation.

    Based from a World Health Organization release, “the 17 SDGs are broader and more ambitious than the MDGs, presenting an agenda that is relevant to all people in all countries to ensure that "no one is left behind." The new agenda requires that all three dimensions of sustainable development – economic, social and environmental – are addressed in an integrated manner”.


    VYLH-Philippines and Its Advocacies

    The Volunteers Youth Leaders for Health – Philippines (VYLH-Philippines) is a national collaboration of youth leaders of youth organizations in universities and communities in the Philippines. This novel undertaking is part of an international effort to establish the March of Dimes - Global Network for Maternal and Infant Health (GNMIH) participated by youth counterparts in China and Lebanon linked by the common interest of volunteerism and public service, to improve birth outcomes worldwide through advocacy.



    Since its inception in July 2009, the leaders of the VYLH network have been conducting advocacy and promotional work in their respective schools and communities focusing on the following health concerns:


    • Increasing awareness among women in their reproductive age on the significance of folic acid supplementation in the prevention of birth defects;
    • Increasing public awareness in saving babies from mental retardation and death through newborn screening; and
    • Lobbying public support for the urgent passage of the Rare Disease Act, an act addressing the needs of patients with rare, orphan disorders.

    Causes of 2.761 M deaths during the
    neonatal period, worldwide (2013/WHO)
    In 2015, promoting prematurity awareness was placed as an advocacy for consideration of the network. According to the WHO, prematurity is the leading cause of death in children under the age of 5 worldwide. In social media, materials and infographics on global and national statistics on premature births, complications and risk factors were posted and shared in time for World Prematurity Day (November 17). One of the points highlighted in the campaign is the importance of awareness in the prevention of preterm births.

    Furthermore, the network has also played an active role in promoting the concern on birth defects - awareness, prevention, care and research, as it participated as an international partner of World Birth Defects Day (March 3) this 2016.

    Both birth defects and preterm births contribute to more than 40 percent of neonatal deaths in  2013(WHO). The two are also within the scope of the goals and programs of GNMIH.

      
    VYLH-Philippines Advocacies and the SDGs

    In the MDGs, the VYLH-Philippines advocacies fall within the two health goals: MDG4 (reduce child mortality), and MDG5 (improve maternal health). While the health goals were previously placed in separate MDGs (4, 5, and 6), these goals were combined and placed in a single SDG – Goal 3: Ensure healthy lives and promote well-being for all at all ages. There are also some advocacies particularly the folic acid awareness campaign and rare disease advocacy that correspond to other targets aside from SDG 3.


    In promoting folic acid awareness, volunteer youth leaders are also promoting the nutritional needs of women in the reproductive age and this has an impact to the well-being of their future child - a target under Goal 2: Hunger and Food Security. It is known that folic acid supplementation is the only proven neural tube defect (NTD) prevention method, to date. Neural tube defects are problems in the development of the brain and the spinal cord. Data from the FNRI-DOST have also shown that 1 out of 5 women in the Philippines is folate deficient. This shows that public awareness on the importance of folate and folic acid is also low among Filipinos.
    2 HUNGER AND FOOD SECURITY: End hunger, achieve food security and improved nutrition and promote sustainable agriculture
    The work done on lobbying public support for a rare disease act, its recent enactment and future implementation support SDG targets related to the welfare of persons with disability. SDGs that relate to persons with disability include Sustainable Development Goals 4, 8 and 10.
    4 QUALITY EDUCATION: Ensure inclusive and equitable quality education and promote lifelong learning opportunities for all

    8 DECENT WORK & ECONOMIC GROWTH: Promote sustained, inclusive and sustainable economic growth, full and productive employment and decent work for all 

    10 REDUCED INEQUALITIES: Reduce inequality within and among countries
    RA10747 has included a provision which grants “Person with Disability (PWD)" rights and benefits as defined by law (Article IV, Section 10) to persons with rare disease. Government agencies such as the DILG, DepED, DSWD and DOLE were also tasked to ensure that persons with rare disease are given the opportunity to be productive members of society and that they are given the same rights and benefits as PWDs (Article VI, Section 18).

    The act also recognizes the importance of a "culturally-sensitive public education and information campaign"on the nature of rare disease in helping the public understand the special needs of persons afflicted with rare diseases, as well as their right against ridicule and discrimination. Such campaign would involve the participation of concerned government agencies, professional societies and non-government organizations, including the youth (Article VI, Section 17). At present, the network has to define its new role in the rare disease advocacy.
    The Health Goal: SDG 3
    "The 2030 Agenda for Sustainable Development heralds a new era of global public health, offering the opportunity to strive for a global development agenda of unprecedented scope and ambition." (WHO)
    According to the WHO, it may be considered, at first glance, that health has a less central role in the SDGs than the MDGs with just one out of the 17 SDGs set specifically for health. However, this SDG is broad with a wide spectrum covered by 13 specific targets. Moreover, almost all of the other 16 goals are directly related to health or will contribute to health indirectly.” SDG 3 also reflect a new focus on noncommunicable diseases, the toll of injuries and determinants of health (such as urbanization, pollution and climate change), and the achievement of universal health coverage.

    Two of the thirteen SDG 3 targets that are reflected by the VYLH-Philippines advocacies center on preventable newborn deaths and universal health coverage. 
    3.2 By 2030, end preventable deaths of newborns and children under 5 years of age, with all countries aiming to reduce neonatal mortality to at least as low as 12 per 1000 live births and under-5 mortality to at least as low as 25 per 1000 live births.

    3.8 Achieve universal health coverage, including financial risk protection, access to quality essential health-care services and access to safe, effective, quality and affordable essential medicines and vaccines for all.
     
    For the complete list of SDG3 targets visit, http://www.who.int/topics/sustainable-development-goals/targets/en/

    Child Mortality in the Philippines

    The Philippines has reported a great decline in child mortality and high probability of meeting MDG4 - reducing the mortality rate of children under 5 by two-thirds. According to a 2014 report, both infant and under-five mortality were reported to decline to numbers close to the 2015 targets as early as 2011.

    Photo: Philippine Daily Inquirer
    There are three periods of life monitored in early childhood mortality: neonatal (0-28 days), infant (1-11 months) and under-five (1-4 years old). The 2013 WHO Country profile for the Philippines shows that it is estimated that 47% of child mortality in the Philippines are neonatal deaths.

    From all neonatal deaths, 39% were caused preterm complications, the leading cause of newborn mortality. In 2011, 11,290 deaths were attributed to preterm complications – the equivalent of 31 newborn deaths every day (UNICEF Philippines/Born Too Soon)

    Photo: Philippine Country Profiles (WHO Western Pacific/
    Countdown to 2015 MNCH)
    On the other hand, 15% of neonatal deaths were associated with congenital anomalies. Congenital malformations has also been part of the top 10 leading causes of infant mortality in the past 50 years (1960-2010/DOH). 

    Notably, neonatal deaths in the country have remained unchanged for the past twenty years. Promoting the public’s awareness on strategies and choices that would prevent or lessen preterm births and certain birth defects can certainly help in reducing child and neonatal mortality in the country.

    Promoting Universal Health Coverage

    While promoting newborn screening, VYLH-Philippines volunteers also promote the benefits of Philippine Health Insurance Corporation (PHIC/PhilHealth) membership through the newborn care package. According to PhilHealth, the Newborn Care Package which includes NBS and Newborn Hearing Screening tests at a package rate of P1750 ensures the well-being and survival of babies, particularly to babies with inborn errors of metabolism. 

    VYLH volunteers also inform the public on the existing PhilHealth coverage for newborn screening which is now offered in two options: basic and expanded. While the package currently completely covers the fee for the basic 6-test panel of disorders amounting to 550 pesos, parents who opt for the expanded test covering 28 disorders (including the basic panel) would shoulder the remaining amount. It is hoped that in the future, PhilHealth coverage will include expanded newborn screening. Such change will give an equal opportunity for the expanded test to every Filipino child.

    Aside from NBS promotion, the recently enacted Rare Disease act mentions the provision of a  basic benefit package from PhilHealth, which shall be provided in accordance with its guidelines. Aside from this, medical assistance to rare disease patients would also be appropriated from the revenues of Sin Tax Reform Act (RA10351) (Article VII, Section 21). Fiscal incentives such as exemptions to taxes and customs duties will also be given to donations for the purchase and importation of orphan drugs or orphan products for the sole use of rare disease patients, as certified by the FDA (Article VII, Section 22).

    These mechanisms supporting the health needs of rare disease patients support what Senator Pia Cayetano mentioned during her sponsorship speech of the bill in the Senate - including the rare disease sector in public health policy will promote universal health care by making sure that nobody is left behind. 

    Conclusion

    It is undeniable that the state of health of a nation and its people is a major consideration, contributor and beneficiary of sustainable development policies such that social, economic and environmental factors have an impact on health, and in turn benefit from a healthy population. Aside from SDG 3 and its specific targets, other SDG targets can directly impact health. VYLH-Philippines and its advocacies have been identified, in this review, to respond to six specific targets under five goals: Goal 2, 3, 4, 8 and 10.

    The WHO has also noted that more than saving lives in developing countries as previously covered by the MDGs, the SDGs are involved in creating healthier societies and promoting the well-being of mankind. Likewise, it is also important to know that the Global Goals speak about and fight for equity by addressing the needs of women, children, the poorest and most disadvantageous groups. In terms of the VYLH-Philippines advocacies, these groups would include the unborn, newborns, and rare disease patients and their families.

    Through the individual, humble, and collective efforts of volunteer youth leaders (VYLs) on the fulfillment of the network's advocacies, the VYLH-Philippines, as a network, will continuously aim to remain true to its mission of empowering the youth for health, and providing service that would advance the SGDs in the Philippines to its capabilities. #RPascual

    __________________
    Republic Act 10747 (Rare Diseases Act of the Philippines) http://www.gov.ph/2016/03/03/republic-act-no-10747/
    Congenital Anomalies (WHO Fact Sheets).http://www.who.int/mediacentre/factsheets/fs370/en/
    Preterm Birth (WHO Fact Sheets) http://www.who.int/mediacentre/factsheets/fs363/en/
    1 in 5 pinays is folate deficient (DOST Media Release).http://region4a.dost.gov.ph/news/12-updates/631-1-in-5-pinays-is-folate-deficient
    Child death rate now lower, but maternal mortality up (Philippine Daily Inquirer) http://newsinfo.inquirer.net/631866/child-death-rate-now-lower-but-maternal-mortality-up
    PH 'likely' to meet education, infant mortality MDGs (Rappler) http://www.rappler.com/nation/66783-philippines-progress-report-mdgs
    Philippines Country Profile (Countdown to 2015: Tracking Progress in Maternal, Newborn and Child Survival) http://www.countdown2015mnch.org/documents/2014Report/Philippines_Country_Profile_2014.pdf
    Sponsorship Speech of Senator Pia Cayetano for SB2990.http://senatorpiacayetano.com/?p=2915


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    • The Rare Disease Bill was first filed in 2009 and it took three Congresses (14th, 15th and 16th) spanning almost seven years before it was enacted.
    • On its third and final reading, lawmakers unanimously approved the bill in both Houses of Congress.
    • President Benigno Aquino III signed RA 10747 or the Rare Diseases Act of the Philippines on March 3, 2016 - the first formal observance of World Birth Defects Day in the country.
    • RA 10747 is an act promulgating a comprehensive policy in addressing the needs of persons with rare disease.


    Health Promotion and Advocacy Update
    Series of 2016


    Photo: VYLH-Philippines/National
    Rare Disease Week Facebook Page
    A THROWBACK.Rare disease bills were first filed in 2009 during the third regular session of the 14th Congress. It was filed again in 2010 when the 15th Congress started. However, the bill only reached the committee level for both attempts.

    In 2013, numerous rare disease bills were filed in the two Houses of Congress. In the 16th Congress, nine rare disease bills were filed in the House of Representatives while five were filed in the Senate. As compared to the two previous Congresses and the early years of the 16th Congress, much of the legislative developments for the proposed bills happened in 2015 with both Houses consolidating rare disease bills, and rare disease bills passing beyond the committee level.

    At the plenary level, the rare bills gained high approval on its third and final reading as reflected by the unanimous votes among lawmakers (204-0 and 16-0). The House of Representatives was able to vote on the bill in August while the Senate followed in December. 

    Before going into its Christmas break, the Lower House approved the Senate's bill as an amendment to its version which made the bill skip bicameral proceedings. The consolidated version reached the President's Desk for his signature and approval on February 2016 and it was eventually signed on March 3, 2016. The day is also the first formal observance of World Birth Defects Day in the Philippines.




    THE LIST.Here are the TEN (10) Key provisions of RA 10747 or the Rare Diseases Act of the Philippines:

    1. Rare Disease Patients are PWDs

    Under the law, patients with rare disease will be considered as persons with disabilities. With this, they will also enjoy the rights and benefits of persons with disabilities (PWDs) under RA7277 or the Magna Carta for Disabled Persons, as amended.

    2. A Healthcare System for Rare

    The Department of Health (DOH) together with the National Institutes of Health (NIH-UP Manila) shall create a system for the identification, management and registration of persons with rare disease.
    Under this system, all rare disease patients shall:
    • be referred to a Regional Newborn Screening Continuity Clinic (NSCC) 
    • be included in the National Rare Disease Registry, a secured health information system on the data on rare diseases, persons with rare diseases, orphan drugs and products.
    • have better access to a support system through the Rare Disease Management Program, a comprehensive program that encompasses diagnosis, clinical management, genetic counseling, and drug research development. 

    3. The RDTWG 

    The DOH shall organized the Rare Disease Technical Working Group for the identification of rare diseases, orphan drugs and orphan products.

    4. Reporting to the Registry

    Healthcare institutions and practitioners are required to report diagnosed cases and the status of patients to the Rare Disease Registry. 

    5. A Practitioner's Responsibility

    A healthcare practitioner attending to a person with a rare disease has the responsibility of informing patients and their families of available resources and the nearest available specialist.

    6. Continuing Education and Training Programs

    The DOH, together with the NIH, professional societies and academic institutions shall conduct continuing education, information and training programs for healthcare practitioners on the identification, referral, and medical management of persons with rare disease.

    A system that would train a sufficient number of medical specialists to diagnose and manage persons with rare disease will also be developed by the DOH and the NIH.

    7. Public Education and Information Campaign

    The act recognizes the importance of a "culturally-sensitive public education and information campaign" on the nature of rare disease in helping the public understand the special needs of persons afflicted with rare diseases, as well as their right against ridicule and discrimination. Such campaign would involve the participation of concerned government agencies, professional societies and non-government organizations. 

    8. Inter-agency Action

    Government agencies such as the DOH (as lead agency), Food and Drugs Administration (FDA), NIH-UP Manila, DILG, DepEd, DSWD, DOLE, DOST and other related agencies shall be involved in the implementation of the Rare Disease Act.

    Four agencies namely the DILG, DepED, DSWD and DOLE were tasked to ensure that persons with rare disease are given the opportunity to be productive members of society and that they are given the same rights and benefits as PWDs.

    9. Medical assistance for Rare Disease Patients

    Medical assistance under the Philippine Health Insurance Corporation (PHIC/PhilHealth) and the Sin Tax Reform Act (RA10351) shall be given to persons with rare disease.

    10. Tax and Custom Duties Exemption

    An exemption on taxes and custom duties shall apply to all donations intended for research on rare diseases. maintenance of the rare disease registry, and the purchase and importation of orphan drugs and products for use solely by patients with Rare Disease, as certified by the FDA.

    For a complete copy of RA 10747, visit the Official Gazette. #RPascual



    The bill for a Rare Disease Act of the Philippines has gained congressional approval with the passage of the bill at...
    Posted by National Rare Disease Week Philippines on Sunday, February 21, 2016



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    Written by Lera Almendral (I3)

    Batch Kabilin (Western Visayas) together with the facilitators and invited guests.


    The Volunteer Youth Leaders for Health-Philippines welcomed Batch Kabilin, the newest batch of volunteer youth leaders during the Western Visayas Regional Camp held at Bacolod Pavilion Hotel last April 9-10, 2016. Kabilin is the Cebuano word for heritage and legacy.

    Camp Starters. Volunteer Youth Leaders participating in the games "Hammer" and
    "How well do you know your co- camper?"

    With the theme, “Revolutionizing health promotion through youth participation”, the two-day camp introduced the participants to the organization and prepared them to be part of VYLH-Philippines. A total of 39 youth volunteers were able to qualify for the camp, 16 of which came from Negros Occidental and 23 from Panay Island provinces. Meanwhile, the camp was facilitated by selected volunteer youth leaders (VYLs) from prior batches (Pioneer, I3, K4 and Hiraya) as part of the tradition and conscious effort of the network of preserving its formation and heritage from each generation of VYL to another.






    Notable individuals were also invited in the camp to discuss about the programs and progress of the organization - Dr. Renilyn Reyes (Updates on NBS and DOH Programs), Mr. Val Peter Billiones (Youth, Volunteerism and NYC Programs), Ms. Yugie Caroline Demegillo RN (Newborn Screening) and Ms. Aster Lynn Sur (Pre-conception Health and Birth Defect Surveillance). The lecture on Folic Acid and its importance in the prevention of neural tube defects, and the Orphan Disorders advocacy of the network was discussed by Dr. Camilie Potato who is also a pioneer volunteer of the network. 







    After dinner, the group proceeded to the much awaited team building activities and commitment ritual. During the team building, the participants were divided into groups composed of five members. Each group had to prepare a yell and perform it in front of the crowd and they have to complete the given tasks from each station. Indeed, each station taught all the members of the team the essence of hardwork, patience and teamwork—all of which are very important factors in the success of an event or an organization. The team building activity was then followed by the commitment ritual. The activity is basically the most significant part of the camp wherein each volunteer will have to solemnly pledge and uphold the principles of the organization. In the activity, the volunteer youth leaders were reminded that being a volunteer entails a lot of positivity and selflessness. The previous volunteers also wrote down love letters for the new set of volunteers to inspire them on their journey as members of VYLH-Philippines as well as to welcome them into the family. Afterwards, candles were lit one by one to symbolize burning desire and passion of the youth in building a healthier nation through the network’s advocacies. 

    The VYLH-Philippines Commitment Ritual
    During the second day of the camp, senior volunteer youth leaders of the network served as lecturers. VYLH-Philippines National President Christian Emmanuel Enriquez RN discussed the Role of the Youth in Health Issues while National Secretary Zapphire Zamudio talked on social media and the Filipino youth volunteer. After the lectures, Visayas Cluster Coordinator John Paul Oira facilitated the seminar-workshop on action plan construction and youth mobilization.

    The series of lectures was followed by the regional planning session and the plenary presentation of provincial plans. During the regional planning session, the participants were divided into two large groups namely Negros Occidental and Panay Island to come up with different activities for each specific province.   

    Day 2 Speakers and the Regional Planning Session
    The camp ended with the showcasing of cultural presentations of the facilitators and the new volunteer youth leaders. The facilitators opened the VYLH-Philippines Social’s and Talent Expo segment of the camp as they danced to the tune of "Ang Sarap Maging Pilipino". Volunteers from Negros and Panay proudly exhibited their culture through the colorful festivals in their respective places. Definitely, VYLs are not only excellent in terms of volunteerism. We are also equally talented!


    To new batch of youth volunteers, Batch Kabilin, we warmly welcome you all to the Volunteer Youth Leaders for Health-Philippines! Thank you for accepting the challenge to be part of this growing family. Soar high and keep on pushing! Aton ini! (Atin ito, This is ours!)

    ***

    CALL FOR APPLICATIONS: After the success of the Western Visayas leg last April, we're now heading east! Calling all youth leaders of Central Visayas (Cebu, Bohol, Negros Oriental, Siquijor) and Eastern Visayas (Biliran, E. Samar, N. Samar, Samar, Leyte, S. Leyte).The camps are scheduled to be held on August and September 2016, respectively.



    _______________
    Lera Almendral @liralew is a BS Medical Technology graduate from Silliman University and currently works at the Silliman University Institute of Clinical Laboratory Sciences. She is one of the camp facilitators and member of the Social Media committee during the camp.

    Editor: RJPascual


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    Written by Tricia Carmona (Kabilin)

    Welcoming Batch Kabilin. VYLH-Philippines held its first camp in Western Visayas last April 9-10, 2016 with youth participants from Negros Occidental and Panay Island provinces. In photo: the new volunteer youth leaders in  their cultural attire.

    Picture this: We are living in a nation where young people can thrive and pursue their passions. They are well-educated and are taking charge of their lives. They empower themselves and the people around them, making them great leaders and parents in the future. 

    This is the change our country badly needs right now.


    Hence, an organization named, Volunteer Youth Leaders for Health - Philippines (VYLH-Philippines) conducted its first regional camp in Western Visayas with the theme, "Revolutionizing health promotion through youth participation", held on April 9-10, 2016 at Bacolod Pavillon Hotel. The event hosted 39 delegates, majority of which are college students from different universities and colleges in Negros Occidental and Iloilo.

    VYLH - Philippines is a network of pro-active, service oriented, empowering, and visionary leaders equipped with knowledge and skills in mobilizing the youth towards a healthy Philippines. It was formally established in 2009, through the collaboration of the Institute of Human Genetics of the National Institutes Health-University of the Philippines Manila, the Department of Health (Republic of the Philippines) and The UPLB Genetics Society, a student organization of the University of the Philippines Los Baños. Since then, the network has trained more than 600 volunteer youth leaders coming from almost 200 youth organizations from various parts of the country. 

    This organization aims to promote awareness about the ongoing health issues in the Philippines and to encourage the youth and public to take necessary actions to prevent debilitating conditions such as preventable birth defects, as well as infant death and mental retardation from congenital metabolic disorders detected through newborn screening. The network also enjoins the youth and the public in promoting awareness and supporting Filipinos with rare or orphan disorders.

    During the Western Visayas Camp, the lectures from senior volunteer youth leaders, and team building activities facilitated by the network gave significant takeaways which could be applied in daily life. Here are a few:

    • Health should be the right and responsibility of everybody. The cliché statement, “Health is wealth.” is best felt when someone becomes seriously ill. Therefore, people should be given access to quality and affordable healthcare. Aside from these they should be made aware of necessary pro-active and preventive interventions. For example, a couple planning to start to family should ask for preconception health consultation and take folic acid as part of their supplements in order to lessen the risk of neural tube defects. On the other hand, a pregnant mother has to save up and avail of PhilHealth, so she could suffice her child’s needs such as newborn screening. This is an important preparation for the out-of-pocket costs of expanded newborn screening. 
    • Do things out of passion. When people do things out of love and passion, the formidable tasks become lighter and fulfilling. It also creates a ripple effect on other people that it inspires them to pay it forward.
    • Be stubborn about your goals and flexible with your means. This thought-provoking statement basically summed up the camp’s message to its delegates. Young people have a long way ahead and they have all the time in the world to set goals, commit mistakes and take detours when needed. After all, we learn best from our mistakes and not from our accomplishments.

    In the end, regardless of one’s age and socio-economic status, everyone must find their passion and work towards achieving it. It is never too late for anyone to be someone they want to be.

    ____________________
    Tricia Carmona is one of the successful applicants and newest volunteer youth leaders from Batch Kabilin. The Western Visayas Regional Camp accepted interested applicants through a standard online application procedure facilitated by the cluster secretariat and approved by the cluster coordinator and adviser. Tricia is a nurse by profession. She works in Bacolod.

    Editor: RJPascual

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    K4 Health Community Youth Training Program completers.
    Photo: The UPLB Genetics Society
    Compiled by Ryan Pascual (Pioneer)

    Standing firm on its commitment to promoting health-related advocacies, The UPLB Genetics Society (GeneSoc) spearheaded the engagement of Volunteer Youth Leaders for Health (VYLH)-Philippines with the community youth in a pilot project called K4Health Community Youth Training Program last June 7-9 in Nampicuan, Nueva Ecija.

    Rooted to the meaning of K4, "Kabataan Kabalikat ng Komunidad para sa Kalusugan,” the said training program led to the organization and establishment of a community-based VYLH core group in the host local government unit under the direct supervision of the Local Government Unit's (LGU) Health Officer.


    GeneSoc, along with its activity partners, hopes that the first VYLH – LGU partnership of this kind will be replicated in other locations in the country.

    The K4Health Community Youth Training Program was made possible through the support given by the Department of Health - Central Luzon Regional Office, Newborn Screening Center - Central Luzon, Institute of Human Genetics - NIH UP Manila, and the Municipality of Nampicuan, Nueva Ecija. The UPLB Ugnayan ng Pahinungod is also one of this program's preparatory training partners.

    To learn more, visit GENEWS, bit.ly/k4healthpilot and the GeneSoc K4Health page, http://bit.ly/1tbevEo


    ___________________
    Ryan Pascual (@rypascual) is a BS Biology major in Plant Biology graduate from the University of the Philippines Los Baños (2010) and an MS student at UP Diliman. He is a proud member of The UPLB Genetics Society where he served as Education Committee Head (2008-09) and Folic Acid Campaign Committee Head (2009-10). He is also the first National President of VYLH-Philippines (2011-12). 

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    Resource persons, speakers and guests of the SLF on Folic Acid. (Photo: NAST-PHL @NASTPHL)

    MANILA, Philippines – The National Academy of Science and Technology Philippines (NAST-PHL) held a Science Legislative Forum (SLF) on Folic Acid last June 28, 2016 at Hotel Jen Manila. The forum organized by the Health Sciences Division of NAST-PHL was attended by delegates from concerned government agencies, congressional health committees, local and international non-government organizations (NGOs), and the academe. 

    Studies have shown that the intake of folic acid or vitamin B9 from supplements and fortified food can significantly reduce the risk of neural tube defects (NTDs) or problems on the development of the baby’s brain and spine. NTDs comprise the second most common group of serious birth defects and these may result in immediate infant death, deformity or disability. Although there are efforts directed  towards increasing awareness, knowledge and consumption of folic acid, the full potential of folic acid to reduce the risk of NTDs has not yet realized in most countries, including the Philippines.

    According to Dr. Carmencita Padilla, activity focal person and NAST Academician, the SLF represents “an important day for women”.  UP Manila Chancellor Padilla also noted that women in the reproductive age needs to take the vitamin not only for good health but also for saving babies from NTDs. In the latter, women planning to get pregnant should take the vitamin at periconception or the period before becoming pregnant and during the early months of pregnancy. 


    The SLF on Folic acid aims to review the global and Philippine burden of neural tube defects, review experiences in increasing folic acid intake globally and in the Philippines, and orient various stakeholders on the proposed legislation on folic acid supplementation, fortification and public education.

    Local and international experts served as resource persons for the SLF. The Philippine General Hospital head of Pediatric Neurology Dr. Marissa Lukban discussed the burden of neural tube defects in the Philippines while PGH Director Dr. Gerardo Legazpi talked on surgical management of patients with NTDs. Both Lukban and Legazpi noted that surgical procedures and life-long co-morbidities of disabling NTDs are costly. Long-term management of NTD patients may require frequent hospitalization and affect the family's productivity.

    On the other hand, Dr. Robert John Berry of the US Centers for Disease Control and Prevention – National Center on Birth Defects and Developmental Disabilities discussed folate deficiency and insufficiency, as well as the role of folic acid in the reduction of NTDs as supported by scientific studies. Berry pointed that aside from deficiency, folate insufficiency is a new category of folate status that requires the same attention as deficiency since both folate deficiency and insufficiency present a risk for NTDs. He also presented other recently reported benefits of folic acid and reviews on its safety. 

    Food fortification was also discussed in the SLF. Dr. Helena Pachon, a senior nutrition scientist of the Food Fotification Initiative (FFI) discussed global experiences in increasing folic acid intake through fortification of staples while Ms. Maria Lourdes Vega of the Nutrition Policy and Planning Division of the National Nutrition Council focused on the successes and challenges of food fortification efforts in the Philippines. Pachon emphasized key messages on folic acid fortification of staples such its beneficial effect of reducing the risk of NTDs and its greater effectivity compared to supplementation. She also noted that the Philippines is one of the five countries mandating wheat flour fortification, unfortunately the existing fortification law does not include folic acid. Vega, on the other hand, disclosed that the local flour industry has expressed openness to the idea of mandatory folic acid fortification.

    The last talk of the SLF centered on the highlights of the proposed legislation on folic acid. Dr. Padilla noted that the proposed bill presents a comprehensive approach on folic acid awareness promotion and increasing the folic acid consumption through fortification and supplementation. Padilla is the chief proponent of the Newborn Screening Act (RA9288) and the Rare Diseases Act of the Philippines (RA10747). 

    Reactions on the proposed legislation were given by Incoming Health Secretary Dr. Paulyn Rosell-Ubial andthe Committee Secretary of the House of Representatives Committee on Health Ms. Maria Lourdes Sanchez. Secretary Ubial, through a video message, indicated her support to the proposed legislation and emphasized the Duterte administration’s concern to the health needs of the poor. 

    Meanwhile, Sanchez  gave an overview on the prioritization of bills in the House Health Committee and mentioned that a bill on folic acid education authored by Congressman Rufus Rodriguez was first filed in the House of Representatives during the 14th Congress. The said bill, House Bill 2651, was able to pass third and final reading in 2008. However, it was not acted upon in the Senate. Other folic acid bills in succeeding Congresses also did not prosper. According to Sanchez, the previous approval of the folic acid bill in final reading may help in the approval of a new bill in the House Committee, along with its inclusion to the legislative agenda of the DOH.

    Sanchez also suggested other legislative strategies aside from filing a unique and independent bill. She recommended the possibility of expanding the Food Fortification Act (RA8976) through an amendment, or the inclusion of interventions for folic acid promotion and consumption in the proposed First 1000 days bill. 

    The SLF concluded with the synthesis of the discussions presented by UP Manila Vice Chancellor for Research and National Institutes of Health (NIH) Executive Director Dr. Eva Maria Cutiongco-de La Paz.#RPascual






    VYLH-Philippines is again grateful to NAST-Philippines for considering the youth network as one of the participants and the representative of the youth to the Science Legislative Forum.
    __________________



    Ryan Pascual (@rypascual) is a BS Biology major in Plant Biology graduate from the University of the Philippines Los Baños (2010) and an MS student at UP Diliman. He is a proud member of The UPLB Genetics Society where he served as Education Committee Head (2008-09) and Folic Acid Campaign Committee Head (2009-10). He is also the first National President of VYLH-Philippines (2011-12).

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    MEDIA RELEASE

    This July 18, Volunteer Youth Leaders for Health (VYLH) – Philippines, a national collaboration of youth leaders of youth organizations in universities and communities in the Philippines, will be launching the first National Social Media day for Folic Acid Awareness, #FolicAcidPH. The social media activity which coincides with the observance of National Nutrition Month and National Disability Prevention and Rehabilitation Week aims to increase public awareness on the folic acid, its sources, and its role in good health and the prevention of neural tube defects (NTDs).   

    Studies have shown that the intake of folic acid or vitamin B9 through supplementation and food fortification can significantly reduce the risk of neural tube defects (NTDs) or problems on the development of the baby’s brain and spine. NTDs comprise one of the most common group of serious birth defects and these may result in immediate infant death, deformity or disability. Although there are efforts directed towards increasing awareness, knowledge and consumption of folic acid, the full potential of folic acid to reduce the risk of NTDs has not yet realized in most countries, including the Philippines.

    In the Philippines, awareness on the significance of folic acid supplementation among Filipino women in reproductive age is presumed to be low. Furthermore, folate deficiency has been determined to exist. According to the 7th National Nutrition Survey by the Food and Nutrition Research Institute-DOST, 1 in every 5 pinays of childbearing age is folate deficient. Hence, there is a need for increasing public awareness on this matter, especially in the absence of a legislation on folic acid fortification, supplementation and public education.

    In order to promote public awareness, #FolicAcidPH will utilize Facebook, Twitter and Thunderclap as its major online platforms. Suggested tweets, status messages and infographics will also be provided by the youth network. Aside from these, interested youth groups, government agencies, and non-government organizations are invited to join the cause and become a partner of the social media campaign.

    Aside from the social media campaign, VYLH-Philippines will also be celebrating its 7th Founding Anniversary. It was on the night of July 18, 2009 when its pioneer batch composed of 78 volunteer youth leaders accepted the challenge of promoting folic acid awareness as one of the flagship health advocacies of the network.

    For more details about #FolicAcidPH, please visit bit.ly/folicacidph or the official campaign Facebook page (fb.com/folicacidph). 



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    PRESS RELEASE
    NAST-DOST*

    The National Academy of Science and Technology, Philippines (NAST PHL) gathered stakeholders from the health and nutrition sector, representatives from the legislative body and other concerned government agencies, the academe, the private sector, and the pharmaceutical industry on June 28 at Hotel Jen Manila for a Science Legislative Forum (SLF) on Folic Acid. 


    Resource persons, speakers and guests of the SLF on Folic Acid. (Photo: NAST-PHL @NASTPHL)

    The objectives of the SLF were to review the global and Philippine burden of neural tube defects; review the burden of folic acid deficiency and insufficiency in the Philippines; review evidence for, impacts of, and safety of increasing folic acid intake; review experiences in increasing folic acid intake globally and in the Philippines; to orient the various stakeholders on the proposed legislations on folic acid supplementation and fortification; and discuss the role of government agencies, the academe, and the private sector.

    The participants of the legislative forum were welcomed by Academician (Acd.) Fabian M. Dayrit, acting president of NAST PHL. One of the mandates of NAST PHL is to serve as an adviser to the government and the scientific community on policy formulation. Through the initiatives of Acd. Carmencita D. Padilla, member of the Health Sciences Division (HSD) of NAST PHL and focal person of the SLF on Folic Acid, the Rare Disease Act or the Republic Act No. 10747 was signed into law by President Benigno Aquino III. Its stakeholders can be traced from a successful legislative forum that captured cohesive inputs for the advocacy of the said act.

    As there no are existing folic acid fortification efforts in the Philippines and supplementation efforts have achieved low coverage, there is a need to put a comprehensive policy in place not only to increase the awareness and knowledge on how folic acid can prevent NTDs but also to improve the maternal health of every Filipino mother and woman of child-bearing age; hence the conduct of a legislative forum for folic acid fortification and supplementation, Acd. Dayrit stressed.

    Folate is a B-vitamin that plays a significant role in preventing birth defects particularly of the baby’s brain and spine, which are collectively known as neural tube defects (NTDs). Folic acid is the synthetic form of folate that occurs in fortification and supplementation.

    Dr. Marissa B. Lukban, head of Section of Pediatric Neurology, Departments of Pediatrics and Neurosciences at the Philippine General Hospital (PGH), Manila, discussed the burden of neural tube defects in the Philippines. According to the data she presented, the occurrence of NTDs in the Philippines General Hospital is 23 per 10,000 live births; there is no available national data. She emphasized on the underreporting of cases in the Institute of Human Genetics Birth Defects Registry and the discrepancy among the regions, primarily because of varied reporting by the hospitals. 

    Dr. Robert John Berry, medical epidemiologist of Prevention Research Branch, National Center on Birth Defects and Developmental Disabilities, US Centers for Disease Control, discussed the evidence for reduction of NTDs, other benefits, and safety of increasing folic acid intake. He clarified that there is a difference between folate deficiency and insufficiency – that folate deficiency commonly results to clinical anemia and homocysteine deficiency while folate insufficiency is attributed to the occurrence of NTDs. According to the data derived from numerous studies, as red-blood cell folate concentration increases, the NTD risk decreases. Despite the positive result of clinical studies on folic acid and folate, it is important to consider and identify potential adverse effects of folate because science, as Dr. Berry emphasized, is incapable of proving safety. He demonstrated however that reviews of high quality data show no adverse effects of folic acid and hence the evidence of the benefits of folic acid currently far outweigh any evidence of risk.

    Dr. Helena Pachon, senior nutrition scientist of Food Fortification Initiative, discussed the global experience in increasing folic acid intake. Her presentation can be summarized into the following main statements: 1) fortification with folic acid reduces the risk of NTDs, 2) fortification with folic acid is more effective than supplementation or dietary diversification for reducing the risk of NTDs, 3) mandatory fortification with folic acid is more effective than voluntary fortification, and 4) fortification with folic acid can also reduce folate deficiency and folate-deficiency anemia. She mentioned that the Philippines is one of the only five countries that mandates the fortification of wheat flour but does not require folic acid and this is an opportunity for reducing the occurrence of NTDs in the Philippines. Based on estimates of NTDs in the Philippines, and impacts that have been achieved by other countries, fortification with folic acid could prevent between 3,000 and 3,500 babies from being born with a neural tube defect per year. She also presented data from the 2008 National Nutrition Survey of the Food and Nutrition Research Institute which suggests that 40-60% of reproductive age women in the Philippines are folate deficient; a substantially larger proportion are therefore folate insufficient and at risk of NTDs.

    Ms. Maria Lourdes A. Vega, chief of Nutrition Policy and Planning Division, National Nutrition Council, discussed fortification efforts in the Philippines: its successes and challenges. She emphasized on the importance of food fortification as a global strategy for preventing micronutrient deficiencies and a cost-effective means to address malnutrition. The Philippines, as she stated,  has already legislated fortification of salt, wheat flour, cooking oil, rice and sugar but implementation, especially of salt, rice and sugar is not optimal. One of the major constraints is non-compliance to standards. The National Nutrition Council is therefore considering changes to the legislation, including the inclusion of folic acid fortification of flour.

    Dr. Gerardo D. Legaspi, director and neurosurgeon of PGH, Manila, discussed the surgical management of patients with neural tube defects (NTDs). He discussed the epidemiology, pathophysiology, and treatment of several types of NTDs such as encephalocele, spina bifida, myelomeningocele, and anencephaly. He shared information on the extremely high costs of surgery for NTDs in private hospitals and impacts to quality of life to patients and their families.

    Acd Padilla, chancellor of the University of the Philippines (UP) Manila, presented the highlights of the proposed legislation on folic acid. Is there a need for legislation? Asked Dr. Padilla. She gave an overview of the journey of the Newborn Screening Act of 2004 or the Republic Act 9288; highlighting the importance and impact of a legislation in implementing a healthcare program. 

    Among the highlights of the proposed bill are: to ensure that every woman of reproductive age has access to food and food products containing folate and folic acid and folic acid supplements to reduce the risk of miscarriage and having babies with neural tube defects and other birth defects; to ensure that there is adequate supply of folic acid-fortified food and food products and folic acid tablets at an affordable price; to ensure that there is sufficient and correct information on the role of folate and folic acid for women of reproductive age and their children; to ensure the creation of a sustained inter-agency collaboration for the aggressive implementation and monitoring of this Act; and to foster collaborative undertakings in continuous research on folic acid food fortification and supplementation. 

    Dr. Paulyn Jean B. Rosell-Ubial, incoming Secretary and Assistant Secretary of Health, Office for Health Regulations, Department of Health, expressed her support for the bill to be included as one of the priorities of the incoming Duterte administration. 

    Ms. Maria Lourdes M. Sanchez, Committee Secretary, Committee on Health, House of Representatives is optimistic that the legislation of folic acid will be one of the banner programs of the 17th congress, alongside with education. She mentioned that a relatively significant bill has been submitted for enactment since the 12th congress up to the 16th congress, through the efforts of Representative Rufus Rodriguez.

    Dr. Eva Maria Cutiongco-De La Paz, Outstanding Young Scientist 2002, vice chancellor for research of UP Manila, and executive director of UP National Institutes of Health gave a synthesis of the discussions. She reminded the audience-turned-folic acid advocates of their responsibility as stakeholders and frontrunners of the proposed legislation on folic acid fortification and supplementation, which is to watch the State of the Nation Address that will be delivered by President-elect Rodrigo Duterte and to promote the public health significance of folic acid especially for child-bearing women.


    _________________
    *The National Academy of Science and Technology, Philippines (NAST PHL) is an attached agency of the Department of Science and Technology (DOST) and the country’s highest recognition and advisory body to the government and science community on issues concerning science and technology.


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    Public and private colleges and universities in Pangasinan participated in the orientation and seminar on newborn screening (NBS) conducted by the Volunteer Youth Leaders for Health (VYLH)-Philippines at the Nenas Garden Bed and Breakfast, Bonuan, Pangasinan, on March 18, 2016.

    Dr. Florencio Dizon, Newborn Screening Center–Central Luzon (NSC-CL) Unit Head, welcomed the some 45 students and department heads from University of Luzon, Lyceum Northwestern University, University of Pangasinan, Pangasinan State University, Colegio de Dagupan, and Virgen Milagrosa University Foundation.

    VYLH North and Central Luzon Cluster Representatives, Regional NBS Coordinators, and NBS Continuity Clinic staff facilitated the programs, which included orientation on VYLH, folic acid
    supplementation, NBS panel of disorders , Rare Disease Act of the Philippines, and the Expanded
    Newborn Screening. ADoctolero



    Originally published on the March-April 2016 Issue
    Newborn Screening, the Official Newsletter of the
    Newborn Screening Reference Center



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    Global Genes, one of the leading rare disease patient advocacy organizations in the world has selected Dr. Carmencita Padilla as one of the 2016 Rare Champions of Hope. Dr. Padilla will receive a “Rare Champion of Hope” recognition under the Medical care and Treatment -International category. 

    As published on their website, Dr. Carmencita Padilla, the current Chancellor of the University of the Philippines Manila was recognized for her “remarkable contribution to the rare disease community [which] has made her a beacon of hope for many in the Philippines. She is instrumental in creating genetic services at the Philippine General Hospital, which later became the Institute of Human Genetics of the National Institutes of Health-UP Manila. She introduced newborn screening for optimal health in the Philippines and is responsible for the Newborn Screening Act of 2004. Dr. Padilla is also Founding Chairman of the Philippine Society for Orphan Disorder and is again instrumental in the passage of the Rare Disease Act of the Philippines enacted March 2016, after 7 years of deliberating with 3 congresses. Her innovations are influential in providing all aspects of support and awareness about rare disease in the country and beyond." [1] 


    The Rare Champions of Hope award recognizes the notable efforts of individuals and organizations in rare disease advocacy, science, collaborative work, and medical care and treatment. According to Global Genes, over 350 individuals and organizations worldwide were nominated for the award this year. The awardees were selected by the Global Genes Board of Directors, Medical and Science Advisory Board and other key partners. 

    Dr. Padilla will be joining Gina Szanuk (Advocacy), Emily Kramer-Golinkoff (Advocacy), Elisabeth Linton (Advocacy - International), Peter Dankelson (Teen Advocacy), Dr. Elif Oral (Medical Care and Treatment), Dr. Ann Calof and Dr. Arthur Lander (Science), Dr. Illana Gozes (Science – International), Kelly Ranallo (Collaborations in Advocacy) and SOAR-NPC/Support of Accelerated Research for Niemann-Pick C (Collaborations in Science and Technology). 2016 Rare Champion of Hope awards will also be given to Dr. Philip Reilly, Sam Kimura and Alex Kimura. Reilly will also be receiving the Henri Termeer Lifetime Achievement Award, an award named after the former Genzyme President and CEO.

    This year’s honorees are scheduled to be recognized at a special award ceremony, the 5th Annual Tribute to Champions of Hope on September 23 at the Hyatt Regency Huntington Beach Resort and Spa, California, USA. Proceeds from the evening will benefit Global Genes’ education programs and the RARE Patient Impact Grant Program. 

    Global Genes is a non-profit organization which promotes the needs of the rare diseases community. The organization has led the creation and promotion of the unifying symbol of hope of the community – the Blue Denim Genes Ribbon. According to their site, the organization has evolved from a grassroots movement of rare disease parent advocates and foundations in 2009 to a network of over 500 organizations, worldwide [2].

    Dr. Padilla is the National Program Adviser of Volunteer Youth Leaders for Health (VYLH)-Philippines. # RPascual 


    Related Links:


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    NAMPICUAN, NUEVA ECIJA – The Local Government Unit (LGU) of the Municipality of Nampicuan through its Municipal Health Officer (MHO), Dr. Ron Allan Quimado in cooperation with The UPLB Genetics Society (GeneSoc) and Volunteer Youth Leaders for Health (VYLH) – Philippines established a community-based youth organization in a three-day training camp held last June 7-9, 2016.

    A total of 16 youth participants joined the K4Health training program sponsored by the Department of Health –Central Luzon Regional Office (DOH Regional Office III), Newborn Screening Center – Central Luzon (NSC-CL), Institute of Human Genetics (IHG) – NIH, UP Manila, and alumni members of GeneSoc. Preparatory training activities for facilitators were also made possible through UPLB Ugnayan ng Pahinungod and VYLH-Philippines.

    Barangay Service Point Ofiicers (BSPO), GeneSoc facilitators, and youth volunteers of Nampicuan assemble for a photo opportunity after the special portion of the training program intended for BSPOs (Photo: GeneSoc)

    The program title, K4Health (Kabataan for Health), strongly underscores the role of the youth in nation-building and their mobilization towards health promotion. The four “Ks” also mean “Kabataang Kabalikat ng Komunidad para sa Kalusugan”highlighting the need for the youth to effect change in their community.

    The training program, which is actually a pioneering joint project of VYLH-Philippines and GeneSoc in establishing a community-based VYLH Chapter, aimed to organize and mobilize the youth of Nampicuan towards birth defects prevention and newborn screening promotion.


    Lectures on community youth training, volunteerism and the present local health situation in the municipality were delivered by GeneSoc facilitators and the Municipal Health Officer, Dr. Quimado during the first day of the program conducted at Senior Citizen Hall. The outgoing municipal mayor, Hon. Cora Villanueva was also in attendance to support the program.

    Representatives from the event sponsors, DOH Region III and NSC-CL, also took part in delivering lectures and testimonials during the second day held at La Romana Countryside Haven, Anao, Tarlac.


    Dr. Janet Miclat of DOH Region III giving a talk on
    newborn screening and the initiatives of the Regional Office.
    Dr. Janet Miclat of DOH Region III emphasized in her lecture the importance of newborn screening (NBS) in saving babies from mental retardation and death by noting that “a simple drop of blood saves lives.” She also introduced the expanded NBS, capable of identifying 28 inborn errors as highly recommended to parents.

    She also reported that the NBS coverage in the region is already 72.14% as of 2015. However a call to assist the rural health unit in reaching out to pregnant women through the help of youth volunteers is highly necessary to achieve 100% coverage.

    Aside from youth participants, the event was also attended by Barangay Service Point Officers (BSPO) in the third day of the training program. Nampicuan BSPOs were given an orientation on preconception health for birth defects prevention. It is expected that the BSPO’s participation will be essential in complementing the planned activities of community volunteer youth leaders.

    Hands-on activities and teaching demonstration tasks were assigned to the participants to integrate the advocacies presented by VYLH-Philippines and evaluate their awareness about birth defects and other health-related issues.

    Problem tree analysis and commitment setting rites were also conducted in order to strengthen the Nampicuan youth as community volunteers. Induction of new members to VYLH-Philippines and the officers of VYLH – Nampicuan Chapter culminated the three-day training program.

    Moreover, the MHO Dr. Quimado agreed to act as the adviser of the community-based VYLH chapter.

    Meanwhile, the facilitators from UPLB GeneSoc vowed to conduct scheduled site visits in order to monitor the chapter’s performance and provide sustainable support in keeping the youth of Nampicuan active and innovative in attending to the needs of their community.

    VYLH-Philippines and UPLB GeneSoc hope that this type of partnership will be replicated soon in other locations in the country.

    Originally Published in GENEWS
    The UPLB Genetics Society


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    by John Romeo Dominick Diño (Kabilin)

    In the spirit of leadership, youth empowerment and promotion of maternal and child health, I embarked my journey on being an advocate for health in the Philippines.

    The Volunteer Youth Leaders for Health (VYLH) - Philippines conducted its Western Visayas regional camp last April 9-10, 2016 at Bacolod Pavilion Hotel in Bacolod City, Negros Occidental. Along with 39 other participants from different civic organizations, I was chosen to represent the Order of Asclepius in this annual event sponsored by the Department of Health and the Newborn Screening Center- Visayas.

    PASSION AND PURPOSE. Youth leaders gather as thet pledge their commitment in doing voluntary services
    on promoting public awareness and mobilizing the Filipino youth for health. 



    The two-day camp, facilitated by senior members of the VYLH-Philippines coming from different parts of Visayas, aimed to empower the youth in advocating health through all sectors, specifically in the promotion of maternal and child health. This included plenary sessions on important topics such as Updates on Newborn Screening and other DOH Programs by Dr. Renilyn Reyes, Youth, Volunteerism and National Youth Commission Programs by Mr. Val Peter Billones, Essentials of Newborn Screening by Ms. Yugie Caroline Demegillo and Preconception Health and Birth Defect Surveillance by Ms. Aster Lynn Sur. 

    VYLH-Philippines Pioneer member and fellow Asclepian Dr. Camilie Potato (Batch 34) presented the importance of folic acid in the prevention of neural tube defects. She also introduced the rare disease advocacy of the network by discussing the rights and needs of Filipinos with orphan disorders.

    The camp also included team-building activities, a commitment ritual and a planning session for the implementation of future projects and advocacies of the VYLH in Western Visayas.

    The Order of Asclepius has been affiliated with the VYLH since its establishment in 2009. Other Asclepians who became part of the advocacy were Dr. Rachel Anne Catague and Dr. Angeli Nicole Portigo, both from Batch 36.

    The organization’s efforts did not stop there, as the VYLH-Iloilo Chapter has been handing out informational materials such as brochures, as well as organizing awareness campaigns regarding the Maternal and Child Advocacy of the VYLH.

    Last May 7, 2016, I was invited to speak about our advocacies during a Newborn Screening and Folic Acid Supplementation Seminar at King's Kids Student Center in Brgy. Aganan Pavia, Iloilo. VYLH-Iloilo Chapter also actively handed out brochures on Newborn Screening and Folic Acid Supplementation in selected barangays within Iloilo City. Currently, the group is promoting its advocacies via social media in an effort to effectively target the Filipino youth.

    HEALTH PROMOTION. The residents of Brgy. Aganan in Pavia, Iloilo were informed of the benefits of newborn screening and the importance of folic acid supplementation by VYLH-Philippines Batch Kabilin - Iloilo (Jeff Hontoria, Dominick Diño, Jenn Bordon, Gladys Palmon, Jc Anasario,Karmela Samoro, Pia Duran and Luis Salvador)

    Being an Asclepian with the heart for service, my journey in advocating for a healthier Philippines has just begun.
    The Official Publication of the Order of Asclepius WVSU-CM
    Photos: JRDDiño


    ________________
    John Romeo Dominick Diño is a Nursing graduate of West Visayas State University. Currently, he is a Medicine student of the same university and a member of the Order of Asclepius.

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    Volunteer Youth Leaders for Health (VYLH) - Philippines was selected as one of the Top Model Youth Leadership Programs of 2016 by the global youth leadership program search, YouthLeadGlobal. 

    YouthLeadGlobal is a collaborative engagement of Leadership, Management & Governance (LMG) Project, United States Agency for International Development (USAID), International Youth Alliance for Family Planning and Youth Health and Rights Coalition. 

    The global review aims to identify and examine effective youth leadership programs, models and strategies from around the world that aim to improve health outcomes for the youth through leadership. Qualified programs give focus on the youth’s health, as well as nurturing their leadership and knowledge skills. Such programs must have demonstrated positive outcomes for the youth in general, including the development of health services of youth-oriented organisations and communities. Furthermore, these programs should provide opportunities for the youth to practice leadership.

    Since 2015, the global search has identified 11 remarkable youth leadership programs all over the world. Featured programs alongside VYLH (Philippines) are Global Changemakers (Switzerland), African Youth and Adolescent Network on Population and Development - Eastern and Southern Africa Region (South Africa), Project Jeune Leader (Madagascar), Uganda Youth Alliance for Family Planning and Adolescent Health (Uganda), Family Health Options Kenya (Kenya) and Hacey (Nigeria).

    Meanwhile, four organizations were recognized as Top Youth Leadership Programs in 2015: Women Deliver’s Young Leaders Program (USA), Center for Creative Leadership’s Leadership and Debate Program (Ethiopia), Emerging Leaders Foundation (Kenya), and GOJoven International (USA).

    About VYLH-Philippines 

    Volunteers Youth Leaders for Health – Philippines (VYLH-Philippines) is a national collaboration of youth leaders representing various organizations from universities and communities in the Philippines. VYLH is part of an international effort to establish the March of Dimes - Global Network for Maternal and Infant Health (GNMIH). The network event was participated by youth counterparts in China and Lebanon who are linked by the common interest of volunteerism and public service to improve birth outcomes worldwide through advocacy initiatives. Since its formation in 2009, VYLH has led the Filipino youth in promoting public awareness on folic acid and its role in the prevention of neural tube defects, newborn screening, prematurity awareness, preconception health, as well as the rights and needs of Filipinos with rare diseases.

    VYLH-Philippines is honored to be the first Asian and the first Filipino youth organization to be recognized in this global search. This commendation will certainly serve as an inspiration to the network in fulfilling its goal of empowering the Filipino youth for a healthier Philippines, as well as to continuously innovate the network’s initiatives in sharing health advocacies.

    Profiles of the identified youth leadership programs for 2015 and 2016 are posted online at http://youthleadglobal.org.#RPascual




    ___________________
    Ryan Pascual (@rypascual) is a BS Biology major in Plant Biology graduate from the University of the Philippines Los Baños (2010) and an MS student at UP Diliman. He is a proud member of The UPLB Genetics Society where he served as Education Committee Head (2008-09) and Folic Acid Campaign Committee Head (2009-10). He is also the first National President of VYLH-Philippines (2011-12). 

    Editor JABarredo




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    Does disability prevention begin in the womb? or earlier?“Prevention is better than cure” has always been a common and undoubtedly true saying. However, there is still a gap on how Filipinos carry this saying in preparing to have kids and start a family.

    Last July 23, 2016, VYLH-Philippines together with #HealthXPH conducted a TweetChat on Preconception Health (PreCon) for Birth Defects and Disability Prevention. According to the TweetChat statistics compiled using Symplur, the one hour tweetchat which started at exactly 9:00 in the evening peaked with 560 tweets on the topic coming from 37 participants composed of doctors, medicine students and health advocates.

    Moderated by Former VYLH-Philippines National President Ryan Pascual (@rypascual) with guidance from HealthXPh core collaborator Dr. Gia Sison (@giasison), the TweetChat session explored the possible reasons why preconception health consultation and awareness is not popular and the reforms or possible activities that can be done to improve PreCon awareness. The utilization of social media in improving PreCon awareness was also discussed. 

    The tweetchat is part of the 7th Founding Anniversary Week of VYLH-Philippines and the network's observance of National Disability Prevention and Rehabilitation Week. 


    Make a PACT for prevention is a campaign
    in improving birth outcomes and preventing
    birth defects Photo: US CDC

    What is Preconception Health? 

    Preconception health refers to the health of women and men during their reproductive years or the years they can have a child. It focuses on taking steps that are important in protecting the health of a baby that they might have in the future. Hence, preconception health is important in the improvement of birth outcomes, particularly in the prevention of preterm birth, birth defects and disability.

    There are a number of birth defects which are known to be preventable. These include neural tube defects or problems in the development of the brain and spine which are prevented through folic acid supplementation before pregnancy; and fetal alcohol syndrome by avoiding alcohol consumption during pregnancy and breastfeeding. 

    The US CDC further expounded the importance of preconception health by emphasizing that everyone, both men and women and whether or not they plan to have a child, can benefit from preconception health. Accordingly, preconception health (PreCon) is about people getting healthy throughout their lives.
    • For women of reproductive age: PreCon means taking control and choosing healthy habits and feeling good about life, whether or not they plan to have a baby someday.
    • As a partner: PreCon means encouraging and supporting the health of your partner and your family.
    • For the babies: Getting PreCon means giving them the best chance for a healthy start in life. Taking care of your health will help reduce the risk of your baby being born preterm or with a low birth weight, and will increase its chances of being born without a birth defect or other disabling condition.



    About #HealthXPH

    In December 2013, online "conversations" between healthcare social media advocates in the Philippines led to the genesis of #HealthXPh. According to its website (http://healthxph.net/), #HealthXPh is a collaborative platform by healthcare stakeholders such as healthcare professionals, healthcare institutions, academe, policy makers and patients to discuss and use, emerging technologies and social media to positively impact the Philippine health landscape. 

    Five doctors namely Drs. Iris Isip-Tan (@endocrine_witch), Remo Aguilar (@bonedoc), Gia Sison (@giasison), Narciso Tapia (@cebumd) and Helen Madamba (@helenvmadamba) comprise the core collaborators of #HealthXPh. 

    Since January 2014, the group has been hosting a regular TweetChat every Saturday from 9:00 to 10:00 in the evening. During the tweetchat, the group encourages stakeholders to participate in the discussion using the chat hashtag #HealthXPh. 

    Participants of the 2nd Healthcare and Social Media (#hcmsPH) held
    at the Philippine International Convention Center last
    April 21, 2016 (Photo: HealthXPh)

    The group has also organized the country’s Healthcare and Social Media (HCSMPH) Summit in 2015 and 2016. These events which covered major themes of HCSM such as ethics, policy, research, education, and advocacy have led to the creation of the manifesto on social media and medical professionalism, a social media research agenda, and the patient’s manifesto for social media.#




    For the analytics and transcript of the tweetchat, please visit the following links:
    Tweetchat Analytics | Transcript 

    ___________________
    Ryan Pascual (@rypascual) is a BS Biology major in Plant Biology graduate from the University of the Philippines Los Baños (2010) and an MS student at UP Diliman. He is a proud member of The UPLB Genetics Society where he served as Education Committee Head (2008-09) and Folic Acid Campaign Committee Head (2009-10). He is also the first National President of VYLH-Philippines (2011-12). 

    Cover Photo Modified from Mashable


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