Insights from the Central Visayas Regional Camp

Written by Melorens Dumas1 and Gilbert Domingo2
1University of Cebu, Batch E4, 2Silliman University, Batch E4
Updated 29 May 2014

Melorens Dumas

Joining the VYLH two-day camp held last May 10-11, 2014 at Intosan Resort, Danao,Cebu made a great impact in my life as a teenager. I met new people not only from Cebu but from different parts of Central Visayas (Region 7) and the whole Philippines. 

It’s rare for a student to have an advocacy but the network, VYLH-Philippines, never failed to persuade us. I found out that it’s not only for students who are in the medical or scientific field but it’s for everyone, every individual, who is after for a healthier society. I am really into joining different leadership seminars, both  local or national, but the VYLH-Philippines' Camp is one of the best leadership conferences that I’ve ever joined in. This one’s unusual, it’s really new! My heart was overwhelmed in knowing the fact that I’m of of the luckiest youth who was able to be a part of the network’s advocacy. 

The First day was of course the so called “Awkward Day”, although the other groups of delegates were already intact. Still, it was productive! The lecture of the advocacies filled our interested minds with more awareness about what’s happening around us. How in that very moment, a teenaage mother is giving birth. And how in that very minute, a dreadful defects can destroy a newborn’s life - if not prevented or detected.

We were blessed enough to have the chance of listening from very excellent speakers. Later that evening, the Team Building Activity tested our values and attitudes towards dealing with different people and situations. The activity strengthened our relationship and opened our minds to the reality that we are a part of this because we are instruments for change. 

The second and last day of the camp is the happiest yet the saddest part. Seeing the National Program Adviser, Dr. Carmencita "Tita Menchit" Padilla, in person really increased our motivation. I believe she was able to inspire everyone. The Talent Presentation and the Kalog Awards made the most impact on that day's activity. It was full of surprises and laughter. Indeed, it was remarkable. 

 

Words can’t express on how thankful I am to be a part of the VYLH-Philippines family. They only made me believe in one thing: in order for us to successfully fulfill our life on Earth, we should be a part of history, and the best way to make history is to help others and make them happy. 

Thank you, VYLH-Philippines! Let’s do this!

***

Gilbert Domingo

The VYLH-Philippines Central Visayas Camp was very memorable. I think it is a rare opportunity to attend an interesting, challenging and exciting youth leaders’ camp.

On our way to Danao, I thought about the many things that could happen in the camp – the new people I would meet, new knowledge that I would obtain, new family that I would value, and all the new things that would make my life different from what I am having right now. At first, I felt a bit awkward even with my co-delegates from Negros Oriental. I feared then that I would be out of place during the camp. But as the camp began, I met different kinds of people from various parts of the region. And as I got to know a bit of their personalities, I figured out how we shared similar characteristics – the traits of being a leader.  That idea made me change my mind about being a fish out of the water.  It made me feel that I am in the right group of people, and that I belong here.

Looking at the perspective of the participants, I could say that the Central Visayas Camp was very successful because all of my fellow youth leaders enjoyed the event. After seeing smiles on their faces on our way home, I am pretty sure that they learned a lot from the camp. Other than the details of the network’s advocacies, our professional lecturers showed us that the field you chose in life doesn’t matter in the advocacy. This made me realize that for as long as anyone has the heart of a volunteer, anyone can make a difference in our country.

To sum it up, I just want to say that I enjoyed the camp so much and I'm looking forward to the next. Thank you, VYLH-Philippines.

_______________________

Melorens Dumas is the President of the Nursing Student Body Organization (NSBO) of the University of Cebu-Banilad Campus. Gilbert Domingo is an incoming Third Year BS Accountancy student at Silliman University. He was the President of the Duscian Sillimanites for AY 2013-2014. At present, he is the College Representative to the SU University Student Council.

Both of them belong to the latest batch of VYLH-Philippines volunteers. Batch E4 stands for Educate, Empower, Engage, and Experience. 

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Message from the National President (12 May 2014)

Passion is defined as a very strong feeling about a person or thing. Passion is an intense emotion compelling, enthusiasm, or desire for anything. The youth certainly possess a lot of energy and passion. It is amazing how a spark can glare as the sun when ignited with passion and commitment. The youth's energy must be utilized properly and purposefully for them to fully grow and achieve their dreams and ambitions.

As we are given the chance to spread our wings and continue to expand the network, it is my sincerest hope that we, the members of VYLH Philippines, will allow others to be educated, empowered, engaged and to experience the things that we had that allowed us to fully grow and reach our goals and ambitions.

May we realize that the true meaning of passion is in the word itself already, that is, to drop "I" that represents one's self and leaving PASS_ON. As we move in the fulfillment of our networks goal, may our diversity and richness in culture and practices bring us to the peak of our success as one family.

My sincerest gratitude and appreciation for all the hard work, efforts, and unending dedication to the organizers of the CAR, NCR-South Luzon Youth Leaders' Orientation and Central Visayas Regional Camp. Our encouragement, hope and support continues for the rest of the regions and their promotion, expansion and growth.


To our new VYLH Batch E4 members, it is an honor and privilege to welcome you all to our growing family. May you be filled with passion and enthusiasm and continue to touch and positively change as many lives as you can.

For everything said and done. Daghang Salamat!

Let’s keep the fire burning.

Christian Emmanuel "Kuya Emman" P. Enriquez RN
VYLH-Philippines National President
2012 - present 

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A leap forward: VYLH-Philippines ventures in CAR

Written by Jonah Chaangan

Baguio City, Batch E4

Baguio and Benguet universities sent their delegates for the Baguio City leg of the VYLH-Philippines
North Luzon Cluster Orientation CARavan.

Ready to champion awareness and empowerment, the Volunteer Youth Leader for Health (VYLH)-Philippines North Luzon Cluster recently launched its Youth Leaders’ Orientation Caravan in the Cordillera Administrative Region. After visiting Abra, Benguet, and Apayao early this year, the group still looks forward to continuing the trail to the rest of the region.  

Youth Leaders' Orientation held in Luna, Apayao

The orientation caravan organized by CAR's Center for Health Development (DOH CHD-CAR) aims to increase the participation of the region in VYLH Philippines’s proactive campaign for maternal and child health. A total of 118 youth leaders representing Abra, Benguet, and Apayao joined hands to look into issues concerning Folic Acid Awareness, Newborn Screening, and Orphan Disorders and pledged to be part of the VYLH-Philippines family. Other than being a milestone in creating discourse on VYLH’s core advocacies, the orientation served as an avenue to encourage youth participants to channel their effort in worthwhile causes.

Patterned from previous experiences, the orientation comprised a series of discussions on volunteerism and VYLH membership, child and maternal health campaigns, and action planning. Lectures were coupled with interactive activities ensuring interactions among the participants. Necessary information and insights regarding VYLH-Philippines and its advocacies were provided by the invited speakers namely Aster Lynn Sur, RN of the Institute of Human Genetics-National Institutes of Health (IHG-NIH), UP Manila; Francia Bartolata, Ryan Pascual, Rufus Adducul, and Edbert Jasper Jover, RN of VYLH-Philippines NCR-South Luzon; and VYLH-Philippines North Luzon Cluster Secretariat Roland Alcantara, RN of Newborn Screening Center – Central Luzon (NSC-CL). Baguio City youth leaders Crissa Sikki (Saint Louis University), Safrone Dicam (Benguet State University), Jonah Chaangan (UP Baguio), Keith Dakimas, and Sheema (University of Baguio) assisted the group.

Youth Leaders Orientation held in Bangued, Abra

Youth leaders were also asked to develop their own action plans for their respective schools and communities.  This planning session addresses the question “what can I do to advocate as a youth?” Thorough review and consolidation of these plans are still ongoing, as these plans can contribute to the overall health campaign in the region, and the country.

The advocacy trail started in Abra last March 31, 2014, followed by a recent visit in Baguio City and Apayao on April 14 and 22 respectively. Over 46 youth participants were oriented in Abra, 26 in Baguio, and 46 in Apayao. They will be listed as affiliated volunteer youth leaders (VYLs) along with 19 Baguio City student leaders who joined VYLH-Philippines in October 2013.

The recent success of the caravan was made possible through the collaboration of the DOH CHD-CAR, IHG-NIH, NSC-Central Luzon, VYLH-Philippines NCR-South Luzon volunteers, and Baguio City Youth leaders. Regional NBS Program Manager Dr. Virginia Narcisio and NBS Nurse Coordinator Joyce Rillorta represented CHD-CAR.

Acknowledgements VYLH-Philippines would like to thank the Center for Health Development - CAR, the Provincial Capitol of Abra, and the Municipality of Luna, Apayao for hosting the orientation of new volunteer youth leaders. Agyamanak unay! 

_________________

Mr. Jonah Chaangan is a senior BA Communication student at the University of the Philippines Baguio. He joined the network in April 2014 and was listed as member of the batch E4 (Educate, Empower, Engage, Experience). 

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VYLH-Philippines joins Buntis Day 2014

Written by Ryan John Pascual

UP Los Banos/UP Diliman, Pioneer  

MANILA - Volunteer Youth Leaders for Health-Philippines NCR-South Luzon Cluster joined the Bayside Council in Obstetrics and Gynecology (BAYCOG) in celebrating the 11th National Day for Pregnant Women (Araw ng mga Buntis or Buntis Day) last March 10, 2014 at the San Andres Sports Complex, Manila. Lectures on maternal health and nutrition, free pre-natal check-up, ultrasound and hemoglobin tests were provided by the organizers to the almost 200 participants of the event. VYLH-Philippines volunteers had the opportunity to give some freebies and informational materials on the importance of folic acid supplementation and newborn screening  to the participants. The event concluded with the "Search for Mrs. Buntis 2014" and a raffle. 

As mandated by Presidential Proclamation 569, the National Day for Pregnant Women aims to promote the needs of pregnant women in order to have a healthier pregnancies. This objective is also reflected to this year's theme, "Buntis ay kapit-bisig na alagaan, para kumplikasyon ay maiwasan". The annual event also aims to recognize all pregnant women who are considered heroes in their own rights as they bring another life into the world. 

This year marks the third year of VYLH-Philippines' participation to the Buntis Day. The network first participated in this annual celebration in 2012 which coincided with the successful attempt of the Philippines, led by the Philippine Obstetrics and Gynecological Society (POGS), to obtain the Guinness World Record on the Largest Pre-natal Class held in multiple locations. 

BAYCOG is a non-profit consortium of obstetricians and gynecologists from 11 member hospitals along the Manila Bay area. The group is also a member of POGS- the convenor of the National Buntis Day. VYLH-Philippines NCR-South Luzon would like to thank Dr. Amelita Jover of San Jose de Dios Hospital for the invitation and the opportunity to introduce the network to the incoming President of POGS, Dr. Ditas Decena. 

Aside from NCR, VYLH-Philippines CARAGA also reported their participation in a Buntis Day event in Butuan City.


Photo Credit Ms. Marian Teresa Cuenca, RN (Birth Defects Surveillance Nurse for Luzon and University Research Associate at the Institute of Human Genetics-NIH, UP Manila) Particpating VYLs Ramonito Nuquie, Ryan Pascual, Marian Teresa Cuenca

_______________

Ryan John Pascual (ryanjohnpascual@gmail.com) is an alumnus, former Folic Acid Campaign Committee Head (now VYLH-Philippines Committee) and Education Committee Head of The UPLB Genetics Society. He graduated with a BS Biology (major in Plant Biology) degree in UP Los Baños. Ryan is currently a graduate student and DOST-ASTHRD scholar at the Institute of Biology, University of the Philippines-Diliman. He is also the first National President of VYLH-Philippines (2011-2012.).

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VYLH-Philippines joins Buntis Day 2014

PHOTO NEWS

BUTUAN CITY - VYLH-Philippines joins the Buntis Day celebration at Barangay Ampayon, Butuan City last March 11, 2014. With permission from Dr. Leonardo Pedrosa and the assistance of the City Health Office of Butuan City, VYLH-Philippines CARAGA represented by volunteer Julius Guilde was able to distribute brochures on folic acid supplementation and newborn screening.

Photo: Julius Guilde

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Moving towards a Rare Disease Act: Understanding SB 2098

Health Promotion Update No. 1 - Series 2014
Health Promotion and Advocacy Working Group

News Release from the Office of Senator Pia S. Cayetano

Medical care for persons with rare disease sought

Senator Pia Cayetano
(https://www.fb.com/officialpiacayetano)

Under Sen. Pia’s bill, persons with rare disease to get better access to medical care

Senator Pia S. Cayetano is pushing for the passage of a bill that will mandate the government to assist persons with rare disease by increasing their access to medical treatment and drugs, and including them in the coverage of the Universal Health Care program.

Cayetano is urging support for her measure as the country marks National Rare Disease Week, which is commemorated every fourth week of Februatry, ahead of International Rare Disease Day on February 28.

Under Senate Bill No. 2098, or the ‘Rare Disease Act of 2014,’ the Department of Health (DOH) will be tasked to establish a National Rare Disease Registry which will include an inventory of rare diseases in the country, information on diagnosed patients, and a list of certified medicines and medical devices.

SB 2098 - An act promulgating a comprehensive policy in
addressing the needs of persons with rare disease
(Read the Full Text, pdf)

A ‘rare disease’ affects less than one in every 20,000 individuals, according to Cayetano, adding that most cases manifest during childhood and are genetic in origin.

“The patients, mostly children, are chronically ill and suffer from pain and isolation throughout their life. Their families also have a hard time coping because treatment is very costly and not readily available in most medical facilities,” she explained.

She cited examples of rare disorders as follows: Gaucher Disease, Maple Syrup Urine Disease, Pompe Disease, Galactosemia, Phenylketonuria, Methylmalonic Acidemia, Urea Cycle Defects, Hurler Syndrome, Hunter Syndrome, Prader-Willi Syndrome, Edward Syndrome and Patau Syndrome.

In 2001, Cayetano lost her youngest child Gabriel from complications of a rare congenital disease called trisomy 13, also known as Patau Syndrome.

“The pain of seeing the suffering of one’s own child is so incomparable that parents would be willing to do anything to save their child’s life. Poor families caring for a family member with a rare disease would have no fighting chance, however, since they do not have access to quality and affordable medical care.”

She noted that the Institute of Human Genetics based in the University of the Philippines in Manila identified 41 rare diseases affecting 300 diagnosed patients in the country. But it is possible that many more patients remain undiagnosed due to lack of research and facilities for these rare ailments.

She added that the number of diagnosed patients could rise with the upcoming expansion of the government’s newborn screening program beginning this year, which would cover 28 rare disorders.

Under SBN 2098, patients suspected or diagnosed with rare disease will be referred to Regional Newborn Screening Centers, which will then coordinate with the DOH and concerned medical facilities for the ‘co-management’ of the patient with a specialist.

The bill likewise recommends the inclusion of rare disease treatment in the health benefit package of the Philippine Health Insurance Corporation (PhilHealth). Additionally, medical drugs and devices used for treating rare diseases will be certified by the Food and Drugs Administration (FDA) to facilitate the public’s access to these products.

Cayetano added that awareness about rare disorders remains very low, thus her bill also seeks to enhance public education and information campaigns on rare diseases through the DOH. 

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VYLH-Philippines celebrates Rare Disease Week 2014: Join Together for Better Care

WHAT IS A RARE DISEASE?

A rare disease, otherwise called an orphan disorder is any health condition resulting from genetic defects that afflicts no more than 1 of every 20,000 individuals in the country. Rare disorders afflict babies in all socioeconomic levels. Besides the little information available about their nature, what makes dealing with rare disorders even harder is that they are long-standing, progressive, disabling and life threatening.

WHY A RARE DISEASE DAY?

We constantly need to raise awareness on rare diseases among decision makers, health professionals and the general public.

Information is key to improving living conditions for rare disease patients; raising awareness is therefore one of our primary goals.

Read  more: VYLH-Philippines Primer to the Annual Rare Disease Week Celebration

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Philippines wow International Communities for ICBD 2013

Written by Stanley Gajete
VYLH-UP Los Baños Alumnus (Batch I3)

Volunteer Youth Leaders for Health - Philippines volunteers conquered the ICBD stage during the opening ceremonies.

Albeit the fact that Super Typhoon Yolanda (Haiyan) hurtled the central part of the Philippines, particularly the Visayan Region, the international community visited the country to attend 6th International Conference on Birth Defects and Disabilities in the developing world, Shangri-La Mactan, Cebu, November 10-13.

Filipinos warmly welcomed foreign participants despite the cold waters dotted brought by the super typhoon especially in Tacloban City, and the rest of Samar and strong winds throttled, which created huge woes among fellow bisayans, since it made its first landfall on November 8.

The opening ceremony of 6^th ICBD at Marquee Ballroom,
Shangrila-Mactan, Cebu, Philippines, November 10-13, 2013
attended by international health experts to communicate
best practices on birth defects and medical genetics
(Stanley Gajete)

This year’s conference theme was “Embedding Birth Defects in the Continuum of Care,” attended by at most 80 guests from 50 different countries. Across continents, experts from the medical field proudly laid their national costumes as part of the opening ceremony to represent their respective countries.

Dr. Carmencita Padilla messaged the fellows that despite the effects of the super typhoon Yolanda to swept areas, moving forward is an essential tool to replenish the wounds brought by the disaster. Dr. Padilla is this year’s overall ICBD 2013 chair, and the current director of the Newborn Screening Reference Center of the National Institutes of Health, UP-Manila.

With the sound of cultural-centric music reverberated inside the hall, Dr. Padilla, along with Mr. Christopher Howson, the Vice-President for Global Programs of March of Dimes Foundation, and co-chair of ICBD 2014 gonged the instrument, to formally open the said convention. The VYLH-Philippines members performed on stage with colorful linen folk dance performance showing majestic Filipino culture that brought smiles to all due to its stunning routines.

The evening program burned with first medical speech from Joe Leigh Simpson of USA as he explained the importance of Genomics as a tool for medical genetics and birth defects.

Speaks for the change

The second day of the said international convention focused on the special topics and projects proposed and/or implemented related to genomes, genetics, and health issues especially on infant birth defects, its opportunities and challenges.

Senator Pia Cayetano served as one of the main guest speakers for the morning program, as she explained the importance of rare disease awareness, and infant-health advocacy, remembering as one of the main advocates of women’s rights and reproductive health law in the country.

Dr. Carmencita Padilla of the Philippines also shared some of the best practices in promoting good health especially in detecting birth defects in the country, alongside with the efforts being done by the Department of Health and the University of the-Philippines Manila.

Birth defects surveillance in the Asia Pacific was the main highlight of the morning session, as different countries in the Asian continent laid down the efforts being practiced by health agencies in their respective countries.

Posters presenting some of the great research findings in the context of social and scientific issues in genetics and biological presence on research development were also presented in the exhibit.

Parallel sessions

 Following days were used on parallel sessions due to overwhelming research trends of different science experts around the world, specifically in birth defects surveillance and registration, cause and prevention of birth defects, prenatal and maternal care, role of parents in planning and delivering services, and networks and issues, challenges, and strategies of different countries towards better health, as programs claimed.

VYLH-Philippines former President Ryan John Pascual was also acknowledged because of the presentation of the efforts of youth to communicate advocacies in different communities around the country, and its successful exercise to continuously campaign its advocacies for different sectors.

VYLH-Philippines is known for its three main advocacies; folic acid campaign, newborn screening, and rare diseases awareness which create huge impacts in the country because of the efforts of the members, following its advocacies of serving the nation towards better health care, with its Filipino youth members.

Endless smile happened due to Fellowship night after serious talks of the whole day, November 12, where Filipino fiesta was the core of the event.

The message

ICBD 2014 colored the message not only to explain the practices of the medical field in communicating the relevance of infant health on all sectors but also to encourage and embrace the youth to make successive efforts to communicate effectively.

The event ended with technical and scientific ideas in the pack, gained from days of serious talks and plenary sessions on engaging into more trends to save million of babies with defects, following the target of UN Millennium Development Goals, and sharing the best practices of different countries.

Vietnam was announced as the next host of ICBD.

VYLH-Philippines volunteers together with the network's secretariat and
VYLH co-founding adviser, Dr. Merlyn Mendioro (IBS-UPLB).

________________
Stanley Gajete is a BS Development Communication (major in Community Broadcasting) graduate from the University of the Philippines Los Baños. He is also a proud alumnus of The UP Community Broadcaster's Society. At present, he currently works at the News and Current Affairs Division of ABS-CBN.

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