Youth for Health

On February 22-28, the Philippines will be celebrating the 10th National Rare Disease Week. Together with the rest of the world, the country will also observe World Rare Disease Day on February 28 with the theme “Bridging Health and Social Care”. The theme highlights the need to bridge the gaps in coordinating medical, social and support services in order to tackle the challenges that people living with a rare disease and their families around the world face every day.

There are over 6,000 rare diseases that affect over 300 million people worldwide. Each disease has an impact on everyday life, including the need for a daily care routine. For most people living with a rare disease, as well as their family members or carers, the reality of daily life can include any combination of the following: collecting and taking medicines, attending appointments, participating in physical therapy, using specialist equipment and accessing various social and community support services and respite care. Managing these care-related tasks alongside their usual daily activities such as work, school and leisure time can be challenging.

Most rare disease patients have difficulties in completing basic daily tasks. As a result, the majority of care is usually coordinated by people living with a rare disease and their family members who spend a significant amount of time organizing care. Organizing care can involve researching local services, making phone calls, accessing treatments and rehabilitation, handling administrative procedures and adapting the home or work space. It becomes a complex and frustrating process, especially when a lack of coordination across services means having to repeat the same information over and over again. Communication between different services needs to improve so that services are delivered efficiently to meet the patients’ best interests.

This year also marks the third year since the enactment of the Rare Diseases Act of the Philippines (RA 10747)– a key legislation for the care and welfare of the Filipino rare disease patient by institutionalizing a comprehensive, integrative, and sustainable system that will facilitate the collaboration of government and non-government agencies, private sector, professional health organization, and academic institutions. Together with the recent enactment of the Universal Health Care Act (RA 11223), it is hoped that the delivery of services and government support for rare disease patients will improve as this law takes full effect in the coming years.

The annual observance of Rare Disease Day culminates National Rare Disease Week. Now on its 12th year, celebrating Rare Disease Day provides an opportunity to be part of a global call on policy makers, healthcare professionals, and care services to better coordinate all aspects of care for people living with a rare disease. #

To learn more about this year's social media campaign, visit www.psod.org.ph or the National Rare Disease Week - Philippines Facebook page bit.ly/NRDWnote2019

Philippine Society for Orphan Disorders, Inc.

www.psod.org.ph

Photo: Care For Rare Dumaguete

We’ve seen it in posters in maternity clinics and hospitals. Our government has been actively campaigning to detect some of it through expanded newborn screening, but some mothers never understood the purpose of such a process.

Rare diseases can be a silent, deadly killer because only few understood how it attacks. There are over 6,000 rare diseases that affect over 300 million people worldwide. Each condition has an impact on everyday life, including the need for a daily care routine. Managing these care-related tasks alongside their usual daily activities such as work, school and leisure time can be challenging.

Despite all of these, rare diseases are also rarely talked about in the media. The issue has been neglected by significant media here and abroad. Organizations that lobby for more support and resources for the cause have been having a hard time for the past few years.

We asked some Cebuano members of Volunteer Youth Leaders for Health - Philippines, a collaboration of youth leaders and organizations in universities and communities throughout the Philippines, on why it is essential to talk about rare diseases.

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Kayzel J. Maata, 19

BS Biology student

University of the Philippines Cebu

Building awareness about rare diseases is so important because this can truly help those who are affected. Rare diseases affect just a few individuals and pharmaceutical companies don't give much attention to developing treatments because they know that not so many people would need and buy them. Certainly, this is an unfair thing for patients with rare diseases. Thus, awareness should be raised to address their needs and so that care and treatments would be made available for them.

Lance Beniga, 19

BS Biology student

University of the Philippines Cebu

It is important to talk about rare diseases because these kinds of diseases are only known by few people. By that, pharmaceutical companies do not give that much attention about the cure because of its lesser reach. As members [of VYLH-Philippines], we believe that it is important to advocate for the care and needs of rare disease patients. It is hoped that through an information drive, the public will be aware of such diseases. And by that, pharmaceutical companies will be obliged to find such cure.

Gale Rizarri Enad, 20

BS Nursing student

University of Cebu

It is important to talk about rare diseases so that people will know that rare diseases exist. They should also have health care treatment and receive budget allocation for research similar to other more known diseases.

Marius Eldrid A. Bohol, 19

BS Nursing student

University of Cebu

We should talk about rare disease because it may significantly affect a person's well-being. The percentage may be very tiny, as it is rare, but we still need to talk about this because our future children might have this. This can affect anyone including the person reading this or their loved ones. Through talking about this concern in the society, we can inform, educate, and communicate the possible ways of providing care and lessening the burden of the disease among patient families in the community. With the simple act of talking about the rare disease, one may change a person's future.

Ma. Angelica Haictin, 19

BS Biology student

University of the Philippines Cebu

We should talk about these because our indifference is just as deadly, if not worse, than the actual rare diseases themselves. It's not a solution, but talking about rare diseases means acknowledging that there is a problem, and we need to do something about it.

Atthea Jane Lepiten, 19

BS Radiologic Technology student

Cebu Doctors University

Rare diseases only happen to one in thousands of children. Ironically speaking, it is rare but it should be tackled and talked by more people. The disease can kill a child on a whim without them even knowing.

Roda Gayle Rañada, 20

BS Chemical Engineering student

Cebu Institute of Technology - University

Rare diseases should be talked about because it is not much known especially to the common folk. People should know that they exist and be aware of the journey of the people that are affected by these. We should support and be there for them because their struggle is also our struggle, as well. I believe that we should not be ignorant of matters like these because we are part of a growing society that nurtures and cares for one another.

Claire Angelie Z. Sadicon, 20

BS Pharmacy student

University of San Carlos

Only a few people know about rare diseases. Often, people misunderstood and mislabeled them as "abnormal." Even with just this reason, it shows how important it is to talk about rare diseases or the people who have these diseases.

Patients with rare diseases also get neglected most of the time, and this is unfair because they deserve the same quality of care as any other patient. It is essential that these should be talked about because these things matter. As Dr. Tolar said, “It is easy to dismiss rare diseases as something that can never happen to you, to your family. But to the family impacted, it doesn’t matter that it’s a rare disease. It’s the disease that changes their life." (University of Minnesota, 2017)

Niño Jan Vergara Miole, 21

BS Nursing student

University of Cebu

As a nursing student, it is my advocacy to bring health-related matters to the forefront of societal endeavors to bring its awareness in the limelight. After all, health is a fundamental right, not a privilege. I believe that we can create a healthier Philippines if everyone has the desire to become active participants of their health.

Talking about rare disorders isn't for show. It transcends superficial discussions and elevates the bar of competency of mothers in improving their care to their children. It transformed them to become empowered individuals to take action, and that is the cornerstone of having a healthy life. Rare disorders are not taboo. Be open to sharing your rare, and show that you care.

Klein Rowen N. Cantiveros, 25

Nurse

Department of Health Region VII

It is relevant to talk about rare diseases to increase awareness. Aside from that, people need to know that these cases are present and are left untreated due to poor financial support. Also to give hope to families that they are not alone in this battle and that there are people willing to help them.

Neil Christian General, 24

Faculty Member

University of Cebu

It is very important for us to talk about rare diseases because these are the diseases that no one, or only a few, cares about. We need to raise everyone's awareness on these conditions as the treatment and medicines for these conditions are normally very expensive. And, on a business standpoint, pharmaceutical companies cannot earn much from formulating drugs for these diseases as there is no enough demand. As such, there is a need for us to support the families of those affected and in a way, by being their voice.

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The youth have produced significant contributions throughout the years, but they are often neglected because of their age. The youth may be judged inexperienced and naive, but if society will listen to their suggestions, everyone can learn a lot from them.

As cliche as it may sound, but the youth indeed is the hope of the nation. The people of yesterday should listen to the people of today because the future does not only rely on their actions. Future generations will also carry the burden of the mistakes being done today.

Perhaps, it is time to listen to them again!

Written and compiled by Maurice Jitty Villaester

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Maurice is a Master of Development Communication student via distance learning from the University of the Philippines Open University. A native of Baril, Cebu, he joined VYLH in 2018 as part of Batch Hayaw.

Ed RPascual

MANILA – The Institute of Human Genetics (IHG), National Institutes of Health – UP Manila, Volunteer Youth Leaders for Health (VYLH) – Philippines, and the Philippine Pediatric Society (PPS) – Section of Genetics held a webinar on birth defects on March 4, 2019. Clinical geneticist and Metabolic specialist Dr. Mary Ann R. Abacan of the UP College of Medicine – Philippine General Hospital presented a talk entitled “Birth Defects: Why it Matters”. The webinar on birth defects is the first webinar organized by VYLH-Philippines together with its partners. The activity was held in observance of the 5th World Birth Defects Day.

In her talk, Dr. Abacan gave an introduction on birth defects particularly its definition, etiology and types of birth defects. She also focused on the stages of fetal development. Dr. Abacan noted that by the time a woman finds out that she is pregnant, most of the vital organs of the fetus has already been formed. Moving towards the prevention of birth defects, examples of teratogens or disruptors of fetal development were also discussed. Dr. Abacan also discussed modifiable risk factors which are important in the prevention of preventable birth defects.

The full video of the webinar is available online in the VYLH-Philippines Facebook Page.

World Birth Defects Day or #WorldBDday in social media, is held every March 3. The campaign aims to promote birth defects awareness and expand birth defects research, prevention, surveillance and care worldwide. In 2019, the global campaign used another hashtag, #ManyBirthDefects1Voice, to highlight the diversity of birth defects, their global occurrence and the need for global awareness and action. It is known that every year, about 8 million babies worldwide are born with a serious birth defect, and about 3 million of them will die before their fifth birthday.

On the other hand, a one hour international webinar is scheduled to be organized by the World Health Organization and the March of Dimes on March 22 (15:00 CET/22:00 or 10:00 PM Philippine Time). Dr. Allisyn Moran of WHO, and Dr. Salimah Wallani of MOD will serve as the meeting moderators.

Dr. Abacan is the Cluster Adviser of VYLH-Philippines NCR-South Luzon Cluster.#

A series of educational discussions were conducted at Barangay San Enrique, San Lorenzo, Guimaras at the barangay session hall last April 25.

In line with their Project TAMA, TeamMATE members Melvie Repospolo and Joser Barcelona discussed topics on Nutrition in Ages and Nutrition in Disaster Feeding. With a special talk on Folic acid supplementation and Nutrition for Pregnant Mothers by TeamMATE member and Volunteer Youth Leaders for Health (VYLH) advocate Ulah Lynn Arancillo.

“I was amazed that one needs to eat 200 apples in order to complete the daily 400 µg folic acid requirement”- said Jimmy Lobaton, Brgy. Kagawad. The attendees were enlightened on the importance of folic acid supplementation for pregnant women as it can reduce the risk of neural tube birth defects.

The talk was attended by our core group, Nutristars, which composed of barangay officials and BHWs. The barangay health center, specifically the BHWs were then given brochures on folic acid supplementation for them to hand it out to mothers during their prenatal check-up.

With this we are thanking our health partner, Volunteer Youth Leaders for Health - Philippines (VYLH), for providing us lecture materials and brochures on Folic acid Supplementation and Preconception Health.

Project TeamMATE

Brgy. San Enrique, San Lorenzo
Province of Guimaras

On July 18, 2019, Volunteer Youth Leaders for Health-Philippines together with 70 partner organizations will unite for #folicacidPH and use its youth force in promoting the importance of folic acid supplementation. Launched in 2016, the event dubbed as the "National Social media Day for Folic acid Awareness" is annually held in line with the observance of Nutrition Month and National Disability Prevention and Rehabilitation Week.

Why promote folic acid?

Everyone needs folic acid. Folic acid is a B vitamin, specifically Vitamin B9. Our bodies use it to make new cells. Folic acid is also very important because it can help prevent some major birth defects of the baby's brain and spine which are collectively known as neural tube defects.

In the Philippines, awareness on the significance of folic acid supplementation among Filipino women in reproductive age is presumed to be low, as 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.

What are Neural Tube Defects?

Neural tube defects (NTDs) comprise one of the most common group of serious birth defects and these may result in immediate infant death, deformity, or disability. Examples of this kind of birth defects include anencephaly or severe underdevelopment of the brain; encephalocele or protrusion of brain tissue from an abnormal opening in the skull; and spina bifida or the incomplete closure of the spinal cord and spinal column.

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. In case of supplementation, proper dosage and intake schedule can lessen the risk of NTDs by up to 70%.

What to expect in #folicacidPH?

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 the Philippines.

In order to promote public awareness, #folicacidPH will utilize Facebook and Twitter as its major online platforms. Suggested tweets, status messages and infographics will also be provided by the youth network. Aside from the social media component, partner organizations are encouraged to bring the campaign “on the ground” as part of their activities in their schools and communities. #

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For questions or clarifications to the campaign, kindly send an email to folicacidph@gmail.com or a direct message to the folicacidPH Facebook Page (facebook.com/folicacidph)

By Kristofer Ralph Supil (Hiraya)

VYLH recently turned 10 this year. I have been with the network for four years now, but weirdly, it feels like I’ve been with them since 2009. It’s really amazing how I saw myself on Day 1 and seeing myself now with the organization reaching its 10th year in full technicolor. I’m looking forward to many more years, to 20, to 30, and so on… with VYLH. But in this span of time I’ve been with them, I have at least learned 10 things - things I kept and will keep with me thanks to VYLH.

One

Passion and hard work are not mutually exclusive. I’ve learned over the years working with different volunteers that these two co-exist with each other. Until now, I have always been reminded to use these two consistently, one never without the other. Passion is a matchstick. Without hard work, without effort, sparks will never fly.

Two

Courage is the secret ingredient to do everything consistently. Having courage is a virtue one must practice in order to practice other virtues consistently. Most times, it’s always scary to start advocating for something people might never understand. But I’ve learned never to let yourself be ruled by these fears. Always remind yourself that there is always something good that’ll come out of your endeavors. Have faith in humanity.

Three

Talent is like DNA — not one is exactly alike. Being with different individuals every year can be very overwhelming. Being with them and seeing their set of talents can even make anxiety worse. You start to think about what you’re good at and what you can offer to the table. However, always think that talent is like DNA. You will never be as good as him or her but so will he or she. You will always be unique. You will always be you. And that’s what makes VYLH so amazing. It’s just several talents bursting with so much energy into one pot. What’s so nice about VYLH is that not once have I ever felt insecure. They’ve only pushed me to become a better version of myself.

Four

Friendship is a flexible concept. It has been said that maintaining friendship in the adult years is difficult. I’m turning 30 this year, and I’m slowly exiting the age bracket of “youth,” but I’ve come to understand that friendship is a flexible concept. And that’s okay. I might have been very close with someone the first day we met, and then we experienced a fall-out but it doesn’t mean our friendship ended there. I tell you, the moment you see each other again, you will be reminded of the several years that you had with them and it will feel as if it was just yesterday. You don’t have to be tagged in every photo. You don’t have to necessarily be in the same chatbox. You don’t have to be in the same region. You just need to understand that you have a friend wherever you may be, and whenever you will need it.

Five

Advocacy is a product of the heart. I always thought that advocacies were things honor roll students did. Young people who excel in the academics and extracurricular. I went into the organization as an average student not even familiar with the word “advocacy.” All VYLH needed was my heart and passion. Everything else followed. I grew. My heart grew. It became smarter. And I will always be indebted to VYLH for what it did to me. I will always wear my heart on my sleeve.

Six

The organization mirrors back who you truly are. Authenticity is key. It wasn’t really hard bringing out who I truly was in this organization. I was just a bit surprised meeting who I really was. Never thought I was capable in becoming who I am today. From the pessimistic, cynical person before to a hopeful, unrelenting Taylor that I am. I’ve also seen the network mold and change people. It is truly breathtaking.

Seven

You learn to be kind. Most importantly, to yourself. We can be really hard on ourselves. Setting standards. Unaccepting of our flaws and shortcomings. Always giving in to doubt. I’m grateful though that VYLH taught me, not only to be kind to others, but to be kind to myself. I’ve gone through so much with the people that they’ve given me the chance to become who I am today. Just last year, I volunteered to facilitate at the last regional camp before this year’s upcoming congress. I was surprised with the ceremony they prepared for us. I remember telling everyone that VYLH was the only group of people who told me that I was still working perfectly even when I knew I was already broken.

Eight

You learn and appreciate the value of memories. Thank God for a big phone storage capacity. I get to look back at photos and videos and unlock all the memories I need to motivate me to make more new ones with the volunteers and the organization. The value I have placed with memories is that these are actually the ones that keep us holding on.

Nine

Love is not what you think it is. I’ve fallen in love with so many people. I’ve fallen in love with their cuteness, their ambitions. But that was me before. Always associating love with the feeling of falling in love with the beautiful aspects of a person. But I’ve learned that love can come in so many forms. I have learned to love someone when they show up late for our meetings and dates. I have learned to love someone by not being bitter when they have finally decided to move on and love someone or something else. I have learned to love someone when they never give back what I give to them, and that’s more than okay. The organization has proven me that I am CAPABLE of love. That I am CAPABLE of loving even after being heartbroken.

Ten

VYLH can be any kind of home - a mansion, a duplex, a village, a small room, or a hostel. In VYLH, you will never experience being homeless. Time and time again, I have always felt lost. Even with the organization, feeling lost is not something you don’t experience especially when you’re navigating the 20s. But one thing I have never felt was feel homeless. I may have been lost and distant several times but VYLH always continued and consistently called itself my home. It would be a mansion filled with so many characters when I wanted life to look brighter. A duplex when I wanted a quaint and intimate meet-up just to talk about how I felt. A village when I needed help raising a newV (new VYLH volunteer) and teaching them the ropes of how to advocate for our advocacies. A small room if I needed to be left alone without them wanting to force themselves in. A hostel if I wanted to meet new people. VYLH was every kind of home. And it will always continue to be, I guess. I guess, I will never be homeless.#

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Kristofer Ralph Supil @TaylorKristof13 is an Intensive Care Unit nurse at Holy Child Hospital, Dumaguete City. A graduate of Silliman University, Ralph became affiliated to VYLH in 2015. He is also a former Health Leadership and Governance Program Nurse of the Department of Health Region VII.

Department of Health (DOH) Secretary Francisco Duque III on Tuesday called on the participants of the 17th Annual Newborn Screening Convention at the Philippine International Convention Center to more effectively disseminate and communicate the impact and contributions of newborn screening as a health intervention.

Before the 1,700 delegates composed of health practitioners, newborn screening advocates, and academicians, Duque emphasized the goal of promoting the Newborn Screening Program in his keynote speech for the convention with the theme, “Enhancing Coverage, Communication, and Collaborations towards Successful Expanded Newborn Screening Program.”

“Many remain uninformed or may even doubt the efficacy of scientifically-proven health innovations and technologies. In the 21st century, technology is so advanced that [testing] a drop of blood can save a life and it has been proven that effective screening and managing these diseases drastically increases the chances of our children for a long, healthy normal life,” the health secretary stated.

Duque pointed out that the first 24 hours of life is crucial for the newborn child. Newborn screening during this period gives every child an opportunity for a healthier outcome. He reminded everyone that by providing informed health choices for parents and through the empowerment of health workers to be leaders in health promotion, the best possible future for the Filipino children — a big leap to pave the way for a healthy Filipino nation — may be secured.

Moreover, Duque rallied for the expertise and support of delegates to help attain the goal of screening all Filipino newborns by 2030. He encouraged implementers to be both innovative and courageous in responding to the difficulties and challenges that will arise. He highlighted that the principles being carried out by the newborn screening program of universality, inclusivity, and person centeredness are the same principles that DOH ushers in through Universal Health Care (UHC). He acknowledged all allies in helping build a healthier future for Filipinos and expressed hopes that the NBS program will be instrumental in engaging parents and health workers to proactively choose health.

Duque is a staunch supporter of newborn screening. During his term as Philippine Health Insurance Corporation (PhilHealth) president and CEO from 2001 to 2005 and his first stint as Secretary of Health in 2005 to 2010, newborn screening reached significant milestones, including its inclusion into PhilHealth’s Newborn Care Package. In 2018, as chair of PhilHealth, Duque supported the funding of the expanded newborn screening, which increased coverage to 29 disorders. PhilHealth Circular No. 2018-0021, which took effect on Jan. 6, 2019, introduced the enhanced Newborn Care Package, increasing the amount of newborn screening availment from P550 to P1,750.

In the same day of the convention, DOH OIC-Director for Bureau of International Health Cooperation Dr. Mar Wynn Bello presented the impact of the recent enactment of Republic Act 11223 or the UHC Act on the newborn screening program. With the movement towards UHC and the promotion of primary care, every Filipino will be granted automatic PhilHealth coverage. Health access will, thus, be made closer and more accessible to the people. UHC will significantly reduce the high out-of-pocket (OOP) expenditures for health.

UHC, also referred to as Kalusugang Pangkalahatan (KP), is the “provision to every Filipino of the highest possible quality of health care that is accessible, efficient, equitably distributed, adequately funded, fairly financed, and appropriately used by an informed and empowered public.”

The law ensures that all Filipinos will be granted immediate access to the full spectrum of health care, which includes preventive, promotive, curative, rehabilitative, and palliative care while ensuring that the availment of these services does not subject the users to financial hardship. Bello discussed the complementary reforms in health financing, service delivery, regulation, and governance that the DOH has been working on. Under UHC, further efforts and additional resources will be applied to reduce maternal and child mortality, and morbidity. Now that PhilHealth covers the expanded newborn screening in full and UHC automatically enrolls all Filipinos in the government’s health insurance program, these developments will encourage everyone especially the poor, vulnerable, and marginalized segments of the population, to seek and obtain the needed newborn care services.

Currently, DOH, PhilHealth, along with experts and concerned agencies, are finalizing the UHC’s Implementing Rules and Regulations (IRR). The full effects of the law would be realized over the years as the lead implementers transition to the universal health care system.#

MEDIA RELEASE

Newborn Screening Reference Center @newbornscreenph
https://www.newbornscreening.ph/
17th National Newborn Screening Convention

Philippine Star. 06 October 2019

info@newbornscreening.ph

CCHD Screening for Filipino Neonates

The Philippine Multicenter Pulse Oximetry Screening (POS) for Critical Congenital Heart Disease (CCHD) was part of this year’s National Newborn Screening Convention. Presenting the preliminary results of the project in the plenary paved the way for the project team to share their vision for having every Filipino baby screened for a possible CCHD and for the affected newborns to undergo timely surgery or catheter intervention.

Of the 16,183 newborns who underwent CCHD screening so far, seven newborns were found to have various critical congenital heart diseases, i.e., transposition of great arteries, pulmonary valve atresia, and double outlet right ventricle. Non-CCHD cases were also picked up by the project like persistent pulmonary hypertension, pneumonia and sepsis.

The Project Team from the Department of Pediatrics, UP College of Medicine, consists of Dr. Jose Jonas Del Rosario (lead), Dr. Maria Melanie Liberty Alcausin and Dr. Carmencita Padilla. The project aims to determine the utilization of POS in detecting neonates at risk of having critical congenital heart diseases in the Philippines. The two-year study aims to determine the prevalence of CCHD as confirmed by 2-D echocardiography. The project currently has seven participating hospitals, namely: Baguio General Hospital and Medical Center, Dr. Jose Fabella Memorial Hospital, East Avenue Medical Center, Pasay City General Hospital, Philippine General Hospital, Quirino Memorial Medical Center and Zamboanga City Medical Center. The project is sponsored by the Newborn Screening Reference Center, National Institutes of Health, UP Manila in cooperation with Annamarie Saarinen from the US-based Newborn Foundation, who donated the Masimo pulse oximeters.

The first baby who was saved by the project was born at the Quirino Memorial Medical Center. He was screened at the 25th hour of life with oxygen saturation of 54 percent on the right hand and 63 percent on the foot [Note: a normal baby must have readings of more than 94 percent]. A 2D echocardiogram done at the 48th hour of life showed Transposition of Great Arteries. The baby was transferred to the Philippine General Hospital where pediatric cardiologist Dr. Del Rosario performed the lifesaving procedure, Balloon Atrial Septostomy followed by Arterial Switch Operation within the baby’s first month of life. The baby was discharged from the hospital one month after the operation. The baby is doing well.

Critical Congenital Heart Disease, by definition, requires surgery or catheter intervention in the first year of life. Babies with CCHD look normal at birth but are at a significant risk for disability or death if their condition is not diagnosed immediately. Approximately 50 percent of infants who have CCHD are asymptomatic in the first few days of life. Early recognition and accurate anatomic diagnosis are needed to provide appropriate life-saving interventions and referral to a well-equipped health-care

cardiac facility.

A pulse oximeter is, indeed, a simple device that can detect the risk of having a critical congenital heart disease. The project hopes to provide the evidence to support CCHD screening as part of routine procedures for the newborns. The ultimate goal is its inclusion in the Newborn Care Package.

Preventing blindness in children through early screening

In a study conducted by the Philippine Eye Research Institute (PERI), retinopathy of prematurity (ROP) is identified as the major cause of blindness among students enrolled in blind schools in Metro Manila. Retinopathy of prematurity is a blinding condition affecting premature newborns. It is recommended that newborns who meet the following criteria should undergo screening for ROP: less than or equal to 32 weeks of age; or less than or equal to 1500 grams; or preterm (>32 weeks) with risk factors as determined by a pediatrician/neonatologist. The timing of the initial exam should occur at least 20 days after birth or before discharge, whichever is earlier.

Another common condition that can cause blindness if left untreated, is amblyopia or lazy eye. Treatment may involve corrective lenses and patching before the child reaches the age of 7. Nationwide, four (4) out of 40 pupils in a kindergarten class have vision problems. Out of the four pupils, three may have errors of refraction and one may have amblyopia or lazy eye.

The National Vision Screening Program (NVSP), spearheaded by PERI led by its director, Dr. Leo Cubillan, in collaboration with the Department of Health (DOH) and the Department of Education (DepED), aims to screen all kindergarten pupils entering the Filipino school system at age 5 or 6 to detect errors of refraction and amblyopia. A PERI Vision Screening module was developed using evidence-based approach. This is a pass-fail system that will be conducted by teachers. Students who fail in the test will be asked to sit in the front rows of the class as an immediate intervention to improve learning, and are subsequently referred to eye care practitioners for evaluation and treatment.

On July 31, 2019, President Rodrigo Duterte signed into law, Republic Act 11358 or the National Vision Screening Act mandating the vision screening of kindergarten pupils in the Philippines. If fully implemented, it is estimated to benefit two (2) million kindergarten pupils yearly all over the country.

MEDIA RELEASE

Newborn Screening Reference Center @newbornscreenph

https://www.newbornscreening.ph/

17th National Newborn Screening Convention

Philippine Star. 06 October 2019

info@newbornscreening.ph

On its 4^th National Leadership Congress, the Volunteer Youth Leaders for Health (VYLH) Philippines fittingly highlighted the launching of its 4^th advocacy. Joining Expanded Newborn Screening (eNBS), Folic Acid supplementation and Rare Disease in the roster of the network’s advocacies is the Preconception Health. Dr. Salimah Walani, Vice President for Global Programs of the March of Dimes, graced the congress as the keynote speaker in the discussion of Preconception Health’s importance in the prevention of birth defects and preterm births. She emphasized that intervening only after a woman is pregnant is already too late and it is high time that we put forward preconception health in improving the lives of mothers and children in the country.

Dr. Salimah Walani (center) receives a plaque of appreciation from the VYLH-Philippines. Also in the photo are (left to right) Dr. Conchita Abarquez, Emmanuel Enriquez, Dr. Carmencita Padilla and Dr. Barbara Cavan.

With the theme “Padayon:Empowering the Next Generation of Volunteer Youth Leaders for Health in the Era of Genomics”, the 3-day event centered on these advocacies and the youth’s role in promoting health internationally. In the said congress, held last November 9-11, 2019 at the Makati Shangri-la Hotel, nearly 100 proactive volunteers from all over the country gathered in celebration of the VYLH-Philippines’ 10^thfounding anniversary. The event kicked off with the team building activities following the talk on Volunteerism and Transformational Leadership by Dr. Grace Aguiling-Dalisay.

The second day of the congress was packed with health talks from experts and key personalities in the field of birth defects. Lectures included the Genetics of Birth Defects and Preterm Births, Expanded Newborn Screening in the Philippines and Understanding the ABC’s of Rare Disease and the Law from no less than Dr. Eva Cutiongco-de la Paz, Dr. Mary Ann Abacan and Dr. Carmencita Padilla, respectively.

One of the goals of the congress was to facilitate exchange of learning and experiences in the promotional work of the network. Discussions on the best practices in advocating eNBS were facilitated by Engr. John Paul Oira and Floyd Edrea. An award-winning program initiated by Ruth Basas, Kabilin Kalusugan for LB Nanays, opened new doors and enriched thinking for more innovative and better-quality advocacy programs. VYLH-Philippines also did not go short-handed in terms of utilizing technology to impact community mobilization as the successes of the social media campaigns, like #FolicAcidPh and #WorldBDDay, done by the network were appreciated in Ryan John Pascual’s report in the congress.

Receiving the Outstanding Volunteer Awards are (left to
right) Ram Nuique, Edbert Jasper Jover, Emmanuel Enriquez,
Katrina Dee Guro, John Paul Oira and Anthony Toralba.

The Cultural Night, like in the past three congresses, was the highlight of the event. It was not only a night of fellowship among volunteer youth leaders nationwide, but a showcase of talents and unity amidst diversity among the four clusters representing the different island groups: Luzon, Visayas and Mindanao. The night also paid tribute to the significant contributions of Professor David Sillence in the field of Genetics. This year, the night was also even brighter because of the radiance shining off of the stars of the night – the recipients of the Outstanding and Exemplary Volunteer Awards in the last 10 years. Awarded as outstanding volunteers were Katrina Dee Guro, Anthony Toralba, John Paul Oira, Edbert Jasper Jover, Ramonito Nuique and Christian Emmanuel Enriquez. While Ryan John Pascual and Floyd Edrea were awarded as exemplary volunteers of the decade.

Dr Carmencita Padilla hands over Exemplary Volunteer
awards to Floyd Edrea (left) and Ryan John Pascual (right).

The congress was concluded with the proclamation of the fresh roll of national officers led by the new national president Rufus Thomas Adducul. The four vice presidents elected for North Luzon, NCR and South Luzon, Visayas and Mindanao were Ameel Bartolazo, Jean Ruth Basas, Marielle Buscato and Shane Paul Baula. Other newly elected national officers were: Charity Hope Ponce, Ram Nuique, Melboy Bulan, Trisha Isabel Guioguio, Stephanie Kate Pepino, Ram Cossid, Ariel Estigoy, Leandro Salazar, and Marcelino Bernados.

With another set of empowered national officers and younger batch of new volunteer youth leaders, the VYLH-Philippines will continue to lead the youth in its role in nation-building with renewed courage and burning desire to effect change in our country. Emmanuel Enriquez, the network’s immediate past president, challenged the new breed of leaders to end the congress, saying “If you are called to be there, make sure your presence has an impact.”

Written by: Trisha Isabel F. Guioguio, RN, MAN (K4, PIO)

DOH’s Eversley Childs Sanitarium and General Hospital (ECSGH) in Jagobiao, Mandaue City, Cebu, hosts the country’s 7th Newborn Screening Center (NSC), which started its operations on February 10, 2020.

MANDAUE CITY - Built in 1982, Eversley Childs Sanitarium and General Hospital (ECSGH) in Jagobiao, Mandaue City, Cebu is a 500-bed government-mandated hospital that originally operated exclusively as a leprosarium. With the decline of leprosy in 1981, the hospital expanded its role and offered additional non-leprosy services like surgery, family medicine, pediatrics, obstetrics and gynecology. It also became a referral center for the management of complications, patient and family counseling and community education in the area. Recently, ECSGH opened the country’s 7th Newborn Screening Center (NSC), which started its operations on February 10, 2020.

Now with its new role as host of the 7th Newborn Screening Center (NSC), ECSGH joins the six other hosts and NSCs in providing accessible expanded newborn screening tests to the public. It will provide the required laboratory tests and recall/follow-up programs for newborns with heritable conditions included in the newborn screening panel as stated Republic Act 9288 or the Newborn Screening Act of 2004.

Finally, as the newest newborn screening center, NSC-Central Visayas (NSC-CV) will receive blood samples for expanded newborn screening from the 426 health facilities from provinces of Cebu, Bohol, Negros Oriental, and Siquijor. More than 110,000 newborns annually from the region are expected to be tested in expanded newborn screening by NSC-CV.

The NSC-CV setup was initiated in June 2019 by the then Chief of Hospital Dr. Lope Carabaña. It is now headed by its OIC - Medical Center Chief Dr. Pythagoras Zerna. The center is housed at the outpatient building of ECSGH and are manned by 15 personnel consisting of analysts, managers, follow-up nurses, administrative staff, and its unit head, Dr. Liwayway Reyes.#

MEDIA RELEASE

Newborn Screening Reference Center @newbornscreenph
National Institutes of Health - UP Manila
https://newbornscreening.ph
info@newbornscreening.ph

DUMAGUETE CITY - For more than ten years, our Dumagueteño volunteers have been active members of the VYLH-Philippines. A University town, and the City of Gentle People, Dumaguete has been the home of youth leaders spearheading activities that have advanced the services of the network. In particular, our volunteers from the city have spearheaded two remarkable RARE projects in the past two years that aimed to promote public awareness and support to the rare disease community.

Run for Rare Disease

A brainchild of VYLH-Philippines Dumaguete Chapter, the run for rare disease is a step to a more aware community toward unfamiliar causes such as rare disease support. The rarity of this support in the community seems par to the definition of rare disease, which afflicts 1 in every 20,000 individuals in the Philippines. As health advocates, we hope to fill this gap.

Dumaguete has successfully organized its very first advocacy run on rare disease on October 28, 2018, with 300 runners from all over Negros Oriental. On its second year this October 2019, a whopping 500 joined in to form part of this worthy cause—a cause that we hope would engage the community to care more for children with rare disease and patients with disabilities.

The event does not only foster community responsiveness toward the advocacy but a call, bit by bit, to advance support for patients with rare conditions, specifically to aid in treatment, therapy, or procurement of essential supplies, in our little way. The Philippine Society for Orphan Disorders is one of the beneficiaries of the event.

This initiative was made possible through the help of the Department of Health, Central Visayas Center for Health Development; Newborn Screening Center Visayas; Philippine Red Cross, Negros Oriental Chapter; Negros Oriental Integrated Provincial Health Office; Dumaguete City Health Office; Dumaguete City Sports and Development Office; and private partners.

Rare Disease Symposium

With this year’s theme, “Bridging Health and Social Care,” VYLH-Philippines Dumaguete commemorated rare disease week through a special talk on rare disease which was slated on February 1, 2019, at the Audio-Visual Theater of Silliman University, Dumaguete City.

Health professionals, medical students, and members of the youth comprised the participants of the event. The objective of the symposium was to raise awareness on rare diseases among the youth and health workers, enabling them to become better advocates for these patients who are afflicted with such conditions. Moreover, it also sees to motivate budding and current health workers engaged in community work to assist and campaign for these patients in the community.

VYLH Visayas cluster adviser, Dr. Barbra Charina Cavan, served as the guest speaker. Dr. Cavan, an expert on orphan disorders, is the first clinical geneticist and one of only two geneticists currently working in the Visayas. She also co-founded the Cebu chapter of the Philippine Society for Orphan Disorders, a support group for children with rare disease.

The Philippine Nurses Association Negros Oriental Chapter, Silliman University College of Nursing, and Foundation University College of Nursing all took part in making this event a success.

The involvement of various sectors is undeniably a gain for the network and its causes. These small ripples of kindness, together, create big waves of change. Through our joint efforts, we will be able to reach more lives and positively change them for the better.

Rare Acts, Rewarding Experience—RARE!

Written by Floyd Edrea, RN (Pioneer)
__________________
Visit the Care for Rare Dumaguete Facebook Page for additional photos and project updates.

The 9th International Conference on Birth Defects and Disabilities in the Developing World (ICBD) was held at the
Cinnamon Grand Hotel, Colombo Sri Lanka from February 23-26, 2020 (Photo @SLMAonline)

COLOMBO, SRI LANKA – With the theme, “Health for All: Accelerate Efforts for Birth Defects Prevention and Care”, the 9th International Conference for Birth Defects and Disabilities in the Developing World (ICBD) aligned with the third Sustainable Development Goal which aims to ensure health for all. The four-day conference-workshop held at the Cinnamon Grand Hotel, Colombo, Sri Lanka last February 23-26, 2020 gathered 400 experts, health professionals and advocates from 36 countries.

Organized by the March of Dimes, the Sri Lanka Medical Association, the Ministry of Health of Sri Lanka, and US Centers for Disease Control and Prevention (US CDC), the 9th ICBD featured two pre-conference workshops, nine plenary sessions, and fifteen simultaneous sessions of oral presentations. A total of 59 poster presentations were also included in the conference which covered the surveillance of birth defects, public health policy, health care systems and strategies to ensure prevention, and improving care for persons with birth defects. The two pre-conference workshops that were held prior to the ceremonial opening of the conference centered on birth defects surveillance data and advocacy, and the development of targeted genomic education.

Participants of the Birth Defects Surveillance Workshop were guided on preparing a communication plan on advocating for birth defects awareness and surveillance (Photos: @SLMAonline @WorldBDdayPHL)

On the night of February 23, the conference formally opened with the ceremonial procession and lighting of the oil lamp, as part of Sri Lankan tradition. Welcome remarks were given by the conference chairs, World Health Organization (WHO) - South East Asia Regional Office (SEARO) Senior Adviser Dr. Neena Raina and the president of the Sri Lanka Medical Association Dr. Indika Karunathilake. The Sri Lankan Minister of Health and Indigenous Medical Services, Women and Child Affairs, and Social Security Mrs. Pavithra Wanniarachchi graced the event as the guest of honor. On the other hand, Prof. Arnold Christianson gave the keynote address wherein he presented a historical account and the continuing need for services for people with congenital disorders in low and middle income nations. Various traditional dances of the host country entertained guests throughout the opening program.

Ceremonial lighting of the oil lamp marks the opening of the 9th ICBD (Photo @SLMAonline)

From February 24 to 26, various plenary and simultaneous sessions became the avenue for the sharing of research outputs, programs and strategies in birth defects surveillance, prevention and care. Specific plenary sessions were also dedicated to human rights and inclusion of people with birth defects, premature birth, digital health standards and interventions, and the role of community and parent organizations.

March of Dimes Vice President for Global Programs
Dr. Salimah Walani on the podium for the SDG talk

One of the plenary sessions focused on linking birth defects with the Sustainable Development Goals. In the session, Dr. Nathalie Roos (WHO), Dr. Salimah Wallani (March of Dimes, USA), and Dr. Vijaya Kancherla (USA) conducted a live online poll among the conference participants on their perception about birth defects and its relation to the SDGs, and discussed the results of their literature search on the topic.

Local and international participants were entertained in a night of music and dance at the conference dinner and beach party held on February 25 at Mount Lavenia Hotel, Sri Lanka.

Philippines participates to ICBD 2020

UP Manila Chancellor Dr. Carmencita Padilla
(Photo @SLMAonline)

The Philippine delegation to ICBD2020 was headed by University of the Philippines Manila Chancellor Dr. Carmencita Padilla who was invited to give a plenary presentation on advocating for neonatal newborn screening programs. In her talk, Dr. Padilla highlighted some of the challenges that are needed to be addressed in the establishment of neonatal screening in a developing healthcare system. She concluded with the lessons she learned from the father of newborn screening, Dr. Robert Guthrie. Dr. Padilla noted that developing countries should learn from other countries with established programs, thus avoiding the same mistakes. Lastly, newborn screening program planners and proponents should never give up despite the obstacles that they will encounter.

In addition, there were also two oral presentations from the Philippines that were included in the symposium on engaging civil society in preconception care. Dr. Padilla, as the National Program and Founding Adviser of Volunteer Youth Leaders for Health-Philippines, presented the various strategies in engaging the youth in preconception care that were implemented by the youth network. These strategies included national social media campaigns, community youth formations, and the conduct of a youth-led community-based preconception health campaign. The community-based campaign was also presented in a poster presentation by NCR-South Luzon Coordinator Jeanne Ruth Basas on behalf of Team Proactive Kabilin. The poster highlighted the pioneering work done by VYLH-Philippines and its partners on implementing a youth-led community-based preconception health awareness campaign in Los Baños, Laguna.

Speakers and moderators of the Simultaneous Session on Engaging Civil Society in Preconception Care

In a separate talk on the same simultaneous session, VYLH-Philippines National President Mr. Rufus Thomas Adducul shared some lessons and challenges encountered in a youth volunteer program for health. Adducul noted that youth-led volunteer programs have an advantage as they know the needs of the youth. Volunteer programs should also use diversity among its members to its advantage. Likewise, volunteer groups should strive in building their brand and identity. In terms of addressing challenges, Adducul mentioned the use of social media in connecting youth leaders across the archipelago, sustaining the commitment and participation of youth leaders, as well as addressing the financial needs of the network through partnership building. Beyond their passion and commitment, he also stressed that the “youth cannot do it alone”, as support from public and private sector are necessary in enabling youth leaders in fulfilling their role in nation building.

On the other hand, the second poster of the delegation focused on the integration of rare diseases in the Philippine public health delivery system through legislation. Although it spanned for years, the efforts for a rare disease legislation succeeded with the enactment of RA 10747 or the Rare Diseases Act of the Philippines on March 2016.

Colombo Declaration

The conference concluded with the plenary session on the voice of the community and patient organizations, and the presentation of the Colombo Declaration on Birth Defects Care and Prevention. The declaration primarily requests the World Health Organization (WHO) to revisit the implementation of the 63rd World Health Assembly Resolution on Birth Defects, as well as to reinvigorate global efforts to prioritize birth defects prevention and care in the global health agenda. It further calls upon governments, international development partners, funders, as well as the WHO to dedicate support and resources to 14 measures that can help in accelerating efforts towards birth defects care and prevention in order to achieve “Health for All”.

Presentation of the Colombo Declaration on Birth Defects Care and Prevention at ICBD 2020

The activities recommended by the declaration supported by 20 local and international organizations include establishing systems for the collection of quality data on birth defects, developing national policies and programs for birth defects care and prevention, ensuring health care policy and practice is based on current scientific evidence, ensuring the continuation of services from pediatric to adult life for individuals among birth defects, and providing training to health care workers including genetic and genomic education. The declaration also endorses educating the public on improving birth outcomes through traditional and social media modalities, engaging civil society and patient organizations, as well as implementing programs to eliminate stigma and discrimination against persons with birth defects and disabilities.

During the closing program, a copy of the declaration was presented by the ICBD conference chairs to Mrs. Shiranti Rajapaksa, the wife of Sri Lanka’s Prime Minister. In an update from the Sri Lanka Medical Association (@SLMAonline), the conference organizers also presented the declaration to the Sri Lankan Health Minister, Director General of Health Services, and the WHO Country Representative in Sri Lanka as part of their observance of World Birth Defects Day.

In the closing ceremonies of the 9th ICBD, children with birth defects and disabilities performed on stage. Afterwards, international participants of ICBD 2020 were invited for a tour to “Ayati”, the National Center for Children with Disabilities in the University of Kelaniya as a post-conference event.

The ICBD is a biennial conference which aims to provide a platform in building the capacity of lower-income countries for the prevention of birth defects and preterm births, and care of people living with birth defects. Previous editions of the ICBD were held in South Africa (2001), China (2005), Brazil (2007), India (2009), Poland (2011), Philippines (2013), Tanzania (2015) and Colombia (2017).#

Download the Colombo Declaration on Birth Defects Care and Prevention

________________

Written by RPascual (Pioneer, Cavite)
Edited by TGuioguio (K4, Davao City)

Rare diseases refer to life-threatening or chronically debilitating diseases which are of such low prevalence that require special combined efforts are needed to address them. In the Philippines, the last week of February is dedicated to people living with a rare disease. This tradition began with Presidential Proclamation 1989 signed by then-President Gloria Macapagal Arroyo in February 2010.

On February 22-28, 2020, the Philippines will be observing the 11th National Rare Disease Week (NRDW). After this, the country will join the rest of the world for Rare Disease Day on the rarest day of all—February 29. Rare Disease Day is a global act of solidarity directed towards raising awareness and highlighting the challenges that people living with a rare disease and their families face every day.

With the theme, “Rare is Many. Rare is Strong. Rare is Proud”, this year’s observance of NRDW and Rare Disease Day marks the shift of the global campaign towards increasing equity for the rare disease community. This year’s message also reframes perceptions of what it means to be ‘rare’. Being rare does not mean being scarce. Being rare does not mean being voiceless. We need society to understand that millions of people living with a rare disease around the world face inequitable access to diagnosis, treatment and care.

NRDW 2020 is an opportunity to show your support for people living with a rare disease by showing that rare is many, rare is strong and rare is proud!

Rare is many. Rare is over 300 million people around the globe. Collectively, they are comparable the third largest country in the world.

Rare is strong. Across borders and diseases, the Rare Disease Community works together to raise awareness and advocate for equity.

Rare is proud. Being neglected by society should be a thing of the past for rare disease patients. Beyond their family, friends and carers, everyone can be part of this hope-giving advocacy. Everyone can show their support for the rare disease community with pride.

This year also marks the fourth year since the enactment of Republic Act 10747 or the Rare Diseases Act of the Philippines which aims to institutionalize the care and welfare of Filipinos with rare disease and facilitate the collaboration of the government, the private sector, and health organizations.

On the international stage, the United Nations’ historical Political Declaration on Universal Health Care included a commitment to strengthen efforts to address rare diseases, marking the first time that rare diseases have been included within a UN declaration adopted by all 193 Member States, including the Philippines.

Along with the enactment of the Universal Health Care Act in the country, it is hoped that the delivery of services and government support for rare disease patients will improve as these laws take full effect in the coming years.

***

About the Philippine Society for Orphan Disorders

The Philippine Society for Orphan Disorders (PSOD) is a non-profit organization whose mission is to uphold the primary concerns and welfare of individuals with rare disorders in the Philippines by directly addressing, supporting and protecting their health and general well-being. PSOD is dedicated to be the central network for the advocacy and effective coordination of all viable efforts to sustain a better quality of life for individuals with orphan or rare disorders.

For more information about National Rare Disease Week 2020, visit www.psod.org.ph or contact info@psod.org.ph

PARA SA MGA FRONTLINER

Tulang Papugay

katha ni Junaif Ampatua

Kulang ang salitang "salamat"

bilang papugay sa lahat ng inyong hirap.

Itong sakunang nangyari'y di inaasahan

ngunit sa inyo kami ngayon ay nakapasan.

Ilang buhay man ang nanganib,

ilang buhay din ang inyong nasagip,

Ilang buhay man ang sa inyo'y nasawi,

Sa amin kayo'y mananatiting bayani!

Alam naming di ito ang dapat --

na hantungan at katapusan nating lahat,

kaya naman lubos ang paghanga

at paggalang namin sa inyo --

aming mga makabagong mandirigma!

Inyong baunin sa laban, aming mga panalangin,

pati na ang pag-asang, lahat ay aayos din.

Sinubok na tayo, noon at dati pa,

ngunit walang makakatinag

sa pusong Maharlika.

Dugo ng mga bayani sa ugat nati'y nanalaytay,

likas na sa atin ang pagiging matibay!

Para sa mga taong nasa unahan,

Padayon! Kasama kami sa inyong laban!

Batid namin lahat ang inyong sakripisyo,

Mabuhay ang dugong Filipino --

Aming Frontliners,
Mabuhay kayo!

________________

Junaif Ampatua LPT (Batch Kalilintad, 2017) is an ALS Mobile Teacher at Schools Division of Calapan City. He took up BSEd-English at St. Anthony College Calapan City Inc.. At present, he is studying MAEd major in English Literature at Divine Word College of Calapan. In 2019, Junaif became part of a team that pioneered a health facility project for the IP Community of Baras, Oriental Mindoro. Their project Project K4Baras (Kalinga, Karunungan, Kalinisan, at Kaligtasan para sa Baras) became the recipient of Bayanihan para sa Kalusugan Award and recognized as the YSEALI Most Innovative Project during the culmination of Ideas Positive Run 9.

Featured Image: "The Frontliners"

Original digital artwork by Daje Pinpiño

MANILA - "Kalusugan ay Karapatan"(Health is a Right), an online program produced and broadcasted by TVUP, is currently airing a series on COVID-19. The online program hosted by VYLH-Philippines National Adviser and University of the Philippines Manila Chancellor Dr. Carmencita Padilla tackles various health and wellness topics as she interviews leading health experts in the country. It also aims to make the public more informed and more active with preventive health measures which are important especially in this time of a pandemic.

The coronavirus disease (COVID-19) is an infectious disease caused by a new strain of coronavirus, SARS-COV2. This new virus and disease were unknown before the outbreak began in Wuhan, China, in December 2019. On March 11, 2020, the World Health Organization (WHO) declared the infectious disease outbreak as a global pandemic. A few days later community quarantine and outbreak prevention measures were implemented throughout the Philippines. Aside from fighting the infection, misinformation has also been recognized as a problem.

As of May 30, the Department of Health has reported and confirmed more than 16,000 cases and 900+ deaths in the country, while more than 5.9 million cases and 360,000+ deaths have been reported worldwide.

Series Episode 1: COVID-19 Overview (May 15, 2020)

The first episode of the series provided an overview of COVID-19 with Dr. Marissa Alejandria, Director of the UP Manila National Institutes of Health (NIH) Institute of Clinical Epidemiology and President of the Society for Microbiology and Infectious Diseases, as resource person. The following are excerpts from the interview.

What is COVID-19 and what are its symptoms?

COVID-19 is caused by SARS COV2 virus. It usually starts as a mild illness which can progress to moderate (mild and moderate~80%), severe (15%), or critical stage(5%). Symptoms are variable and may include fever, cough, sore throat, headache, muscle pain, diarrhea, or loss of smell and taste. In moderate cases, there will be additional shortness of breath and pneumonia that can be seen on X-ray. In severe cases, difficulty in breathing worsens and may need ventilatory support in an ICU. When patients deteriorate, like needing dialysis, they are in critical stage.

How does the virus spread from one person to another?

It mostly spreads from person to person among close contacts through infected respiratory droplets that come out during coughing, sneezing, or talking/singing. Some of the virus settle on surfaces and can be introduced to the mouth, nose, or eyes by hands that touched those surfaces. These are the reasons why it is very important to maintain physical distancing, wear mask, properly cover cough and sneeze, and wash hands frequently.

What is the presymptomatic period in this infection?

The virus starts being shed two days before there are any symptoms and can already infect others; but transmission is high when symptoms are manifest. Physical distancing and mask wearing are therefore important to protect contacts during this presymptomatic period when there are no or just mild symptoms. Washing of hands is also very important at this time to prevent contamination. When exposed to an infected person, the contact may develop symptoms 2 to 14 days after, average of 5-6 days.

The last pandemic was the Spanish flu of 1918. What can we learn from it?

The Spanish flu of 1918 and the COVID-19 are both pandemics, able to spread across continents; and both have no treatment or vaccine (so far for COVID-19) which led to lives lost, 50-100 million for the Spanish flu. To control that pandemic, quarantine and isolation measures were also implemented. It lasted till 1920 because there was a second wave after the quarantine measures were lifted. We have to learn from this. We have to calibrate our responses in terms of the quarantine measures or the non-pharmaceutical interventions that we are implementing now to contain and mitigate this pandemic.

As an infectious disease specialist, what are your messages for the general public?

For the general public, we need to lead a healthy lifestyle; and for us to control this pandemic, discipline and cooperation in implementing personal protective measures are paramount. These are physical distancing, hand hygiene, proper cough etiquette, and not stressing ourselves with misinformation. We need to be responsible, listen to credible sources, and not be tempted to spread fake news.

Series Episode 2: Protecting Oneself (May 24, 2020)

Episode 2 in the COVID-19 series tackled the topic Protecting One’s Self with Dr. Regina Berba, chair of the PGH Infection Control Unit as resource person. The following are some of the myths on COVID-19 being perpetrated on social media that Dr. Berba emphatically disproved.

(UP Manila Healthscape COVID-19 Special Issue No. 6)

TVUP (TVUP.ph) is an Internet television (webcast) network operated by the University of the Philippines which delivers free content for information and educational purposes. TVUP also airs the #stopCOVIDdeaths webinars organized by UP in partnership with the National Telehealth Center-NIH, UP Manila and PhilHealth. Videos of TVUP programs are available in Youtube. (RPascual)

______________________

This article was prepared using excerpts from the UP Manila newsletter, "Healthscape"

Download Healthscape (Special Issue on COVID19) No. 5

Download Healthscape (Special Issue on COVID19) No. 6

The Dr. Salvacion R. Gatchalian Memorial Webinar Series was launched last July 14, 2020 with no less than UP Manila Chancellor Carmencita Padilla as the inaugural webinar speaker on the topic: Congenital Childhood Diseases: Role of Newborn Screening.

An engaging lecture attended by more than 700 physicians, nurses, students, and lay persons, Dr. Padilla imparted three important key points:

1. Congenital disease, also called a birth defect, is a major cause of infant morbidity and mortality;

2. The goal of newborn screening is to screen all Filipino newborns for common and rare congenital diseases to reduce preventable deaths; and

3. The COVID-19 pandemic greatly affected the newborn screening performance in the country but efforts were made to continue the service for the newborns.

This webinar was sponsored by the Newborn Screening Society of the Philippines, Inc. Dr. Ma-Am Joy Tumulak, genetic counselor at the UP Manila National Institutes of Health, moderated the interactive question and answer portion. A testimonial video featured a patient with congenital hypothyroidism who was screened at birth and went on to get a college degree.

Watch the webinar at the MU Sigma Phi Ageing and Longevity
Medical Webinars Facebook Page

The year-long pediatric webinar series aims to honor the memory of Dr. Salvacion R. Gatchalian, a renowned pediatric infectious disease specialist, President of the Philippine Pediatric Society, alumna of the UP College of Medicine, and member of the Mu Sigma Phi Sorority, whose untimely passing shook UP Manila and the medical community. The series tackles relevant and timely medical topics on the care of children – immunization, diabetes, hearing loss, nutrition, developmental growth, pneumonia, red eye, among others. Through interactive lectures, prominent specialists in the forefront of their respective medical fields, here and abroad, discuss salient points to provide evidence-based guidelines for timely and appropriate medical care and improve the quality of life of the pediatric population.

Registration to the webinars is free through bit.ly/muwebinars2020. The target participants include physicians (general practitioners, occupational and industrial physicians, family and community medicine physicians, school physicians, preventive and wellness medicine practitioners, doctors to the barrios), other healthcare professionals (nurses, pharmacists), and medical and paramedical students,here and abroad. The webinars will be held on selected Tuesdays (12:00-1:00pm Manila time) from July 2020 to June 2021, through livestream.upm.edu.ph, and Facebook @AgeingWebinars.

This webinar series is organized by the Mu Sigma Phi Sorority of the UP College of Medicine in cooperation with the Postgraduate Institute of Medicine and the Mu Sigma Phi Foundation, Inc, to raise funds for the PGH Department of Pediatrics. For more inquiries, please contact muwebinars2020@gmail.com (DR. ROWENA F. GENUINO for UP Healthscape/UP Manila)#

Read the full issue of UP Manila Healthscape No. 13.

The weekly UP Manila Healthscape is published by the Information, Publication, and Public Affairs Office (IPPAO) of UP Manila.

The Philippines, through the University of the Philippines Manila (UP Manila), successfully hosted this year’s Asia-Pacific Conference on Human Genetics (APCHG) at the Makati Shangri-la Manila on November 7-9, 2019. This is the second time the country has hosted the event; the first was in 2008.

Led by the Institute of Human Genetics (IHG) of the National Institutes of Health (NIH), the conference carried the theme “Advancing Translational Medicine and Collaborations in Genomics” and provided an excellent venue for a community of faculty, scientists, researchers, and students from the Asia-Pacific region and different parts of the world to discuss the use of new knowledge in genomics into clinical practice and the generation of further research in the field of genetics and genomics.

Plenary sessions included the following topics: Two Tales of Translational Genomics: Pediatric Genetics and Inherited Breast and Ovarian Cancer; Precision Medicine: Making Sense of DNA Variants; Oncogenomics: Closing the Cancer Gap; A Paradigm for Precision Public Health: Right Intervention at the Right Time; Organs on Chip: Microphysiological Systems to Advance Therapies for Rare Diseases and for Precision Medicine; Rare Are Common: How Rare Diseases Reveal Molecular Pathways for Common Disorders; Craniofacial Phenotyping in Diverse Populations: Insights from the Asian Populace; and Gearing Up for the Phenomics Era.

Scientists and experts also shared knowledge and insights on these areas: Genetic Risk Assessment and Counseling in the Era of Genomics; Revolutionizing Newborn Screening: New Developments and New Dilemmas; Prenatal Genetics: How Genetic Technologies are Shaping Reproductive Decision-Making; Hemoglobinopathies: Advances in Diagnosis and Innovative Therapeutics; Advances in the Diagnosis and Therapy of Inherited Metabolic Diseases; Discerning the Phenotypes of Genetic Disorders Through Next Generation Sequencing; Population Genetics: Genetic migration in Asia: From Patterns to Predictions; Elucidating the Genetics of Complex Diseases: Where Are We Now; Understanding Future Trends of Metagenomics, Proteomics and Metabolomics; Solving the Brain Enigma: The Value of Genomics in Neuropsychiatric Disorders; Lysosomal Storage Diseases: Towards an End to Diagnostic Odyssey and Improvement in Care; and Disorders of Sexual Development: Integrating Clinical and Genetic Approaches.

Pre-conferences providing learning opportunities were also conducted on November 4-7, 2020:

• Hemoglobinopathies for NBS Program Implementers – aimed at addressing the needs of the newborn screening program in light with the drastic increase in the number of patients who confirmed positive for Hemoglobinopathies

• Wellcome Genome Campus: NGS Analysis for Genetic Diseases – aimed at equipping beginners with a working toolset to analyze and interpret data generated from NGS for identifying candidate causal variants.

• 3rd Genetic Counseling Pre-conference Workshop – promoted ongoing collaboration for genetic counselor professional development and enhanced genetic counseling training, as well as an opportunity to increase awareness and effectiveness on the provision of clinical genetic counseling services in Asia.

• 4th ASEAN Congress on Medical Biotechnology and Molecular Biosciences: Emerging Issues on

Hemoglobinopathies in the Asia Pacific Region – discussed a relevant group of hemoglobin disorders that affect millions of people worldwide.

Philippine cultural dances, including “pandanggo sa ilaw,” “tinikling,” and other regional dances, organized by the Tourism Promotions Board of the Philippines, were showcased during the closing ceremony.

A post conference featuring the Fourth Volunteer Youth Leaders for Health-Philippines National Leadership Congress was held on November 10-11.

The APCHG is a non-profit organization founded in 2006 and comprised of persons involved or interested in the study of human genetics in Asia Pacific. The membership, which includes scientists, clinical geneticists, genetic counselors, and students, has steadily increased over the past years. It welcomes members from all the countries in the Asia-Pacific region.#

_________________
Article originally published in the November-December 2019 issue of Newborn Screening, the official newsletter of the Newborn Screening Reference Center

Newborn Screening Reference Center @newbornscreenph

https://www.newbornscreening.ph/

info@newbornscreening.ph

MANILA – With almost six months of quarantine restrictions in the country, the Philippines continues its fight against the pandemic caused by a novel virus described in December 2019. SARS-COV2, then known as the novel Coronavirus 2019, was determined as the causative agent of a new type of infectious respiratory syndrome, the Coronavirus Disease 2019 or COVID-19.

Based on the latest statistics released by the Department of Health on August 25, there are 197, 164 confirmed cases of COVID-19 in the country while more than 3,000 deaths have been recorded [1]. Metro Manila which has been subjected to varying levels of quarantine accounts to more than half of the total cases in the country. CALABARZON, Central Visayas, Central Luzon, and Western Visayas are the other regions in the country with high number of confirmed. Early this month, health workers have requested the government to tighten restrictions to provide a breather of the congested health system and provide a reprieve for our frontliners due to the continuous influx of COVID-19 cases [2].

DOH COVID19 Tracker. (Accessed 25 August 2020)

In this edition of #YouthForHealth, Volunteer Youth Leaders (VYLs) have shared their experiences, insights on the role of the youth, and recommendations in protecting ourselves and our families during this pandemic.

On the challenges they experienced due to the pandemic

On the COVID-19 prevention strategies that they have done

On what VYLs recommend on how we can protect ourselves

On the role of the youth during this pandemic

A Change in Behavior

Various government and non-government organizations are promoting a “healthier” change in behavior for Filipinos as a response to the pandemic. Two of the campaigns focusing on COVID-19 prevention that are found in social media are “BIDA Solusyon” and “Bagong Gawi”.

The Department of Health together with other government agencies is currently leading the campaign “BIDA Solusyon sa COVID-19.” The campaign is envisioned as a “strong and cohesive information campaign” which will encourage the Filipino people to take an active role in the fight against the “COntraVIDa’ that is COVID-19. Four behaviors are promoted by the campaign which are simplified in the BIDA acronym – namely B for “Bawal ang walang mask” (masks are necessary); I for “I-sanitize ang mga kamay, iwas-hawak sa mga bagay (clean your hands for 20 seconds)”; D for “Dumistansiya ng isang metro (keep your distance at 1 meter)” ; and A for “Alamin ang totoong impormasyon (know factual information).” The multi-media campaign implemented by the Health Department also featured celebrity-endorser and “BIDA Champion” Alden Richards as its ambassador. On the other hand, the BIDA Solusyon Facebook page is currently supported by more than 19,000 followers.

In Facebook, another campaign that is supported by a growing number of organizations is “Bagong Gawi” (New Habits). According to its Facebook Page, Bagong gawi aims to guide Filipinos on the journey of learning the basics and instill habits needed to lead safe and healthy lives in the midst of the pandemic [4]. Since its launch in July, the campaign has already produced online guides covering various topics of “new normal” life that were published in English, Filipino, Ilocano, Cebuano, and Hiligaynon. Among the topics that were covered in the campaign include proper handwashing, use and disposal of face masks, habits outside the home and at the workplace. One of the recent posts of the campaign emphasized that COVID-19 is not the only infectious disease that a person can contract during this pandemic.Several basic precautions such as proper handwashing, vaccination, proper food handling, maintaining the cleanliness of our surroundings, and habits during essential travel were recommended [5].

For VYLH-Philippines, practices that are related to infection prevention are included in the four strategies in achieving preconception health. The strategies that are promoted by the network are popularized as “L.I.N.C” which stands for “Healthy Lifestyle, Infection Prevention, Good Nutrition, and Contraception and Planning the Family.”

Basically, preconception health is the health of women and men during their reproductive years. Preconception health focuses on taking healthy steps prior to pregnancy in order to protect the health of the baby that they may have in the future. Thus, aside from reducing the risk of adverse birth outcomes such as birth defects and preterm birth, preconception health can also improve the health status of women and men at any stage of their life, regardless of their plan to become parents.

This August, VYLH-Philippines highlights preconception health as its most recent core advocacy through the first #PH4PH Preconception Health Awareness Week. In addition to promoting the concepts under preconception health, the #YouthForPH, a network of organizations coordinated by VYLH-Philippines that are united in the promotion of preconception health, is also being formed [6]. Despite the current pandemic situation, one of the main considerations for the network on pursuing the launch of the campaign is the need for increasing health awareness and instilling health seeking behavior among Filipinos, particularly the Filipino youth.#

For updates on the first Preconception Health Awareness Week, follow @YouthForPH in Facebook, Twitter and Instagram.

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[1] DOH COVID19 Tracker. https://www.doh.gov.ph/covid19tracker Accessed 25 August 2020

[2] PRRD heeds front-liners’ call; reverts NCR, other areas to MECQ https://www.pna.gov.ph/articles/1110889

[3] DOH BIDA Solusyon sa COVID19. https://www.doh.gov.ph/bidasolusyon

[4] Vision and Mission of Bagong Gawi. https://facebook.com/bagonggawiph/posts/116390803450089

[5] Protection against other Communicable Diseases. https://facebook.com/bagonggawiph/posts/137727654649737

[6] VYLH-Philippines #PH4PH Preconception Health Awareness Campaign Guide. https://sites.google.com/site/vylhphilippines/our-activities/social-media-campaigns/ph4ph

Compiled by RPascual (Pioneer - Cavite)

"BANYUHAY: VYLH-Philippines' Metamorphosis to the New Normal."

Around this theme, the Volunteer Youth Leaders for Health-Philippines (VYLH-Philippines) celebrated its 11th Founding Anniversary amidst the pandemic.

Since on-the-ground advocacy works are yet to be encouraged, VYLH-Philippines deliberately thought of activities that would mobilize its members through the different social media platforms. This year, to continuously showcase the volunteers' creative juices in the "new normal", social media platforms such as Facebook, Instagram, and Twitter were used to increase public awareness on the network's advocacy.

Having said that, an 11-day online festivity from July 8 to 18, 2020, was conceptualized in celebration of the network's advocacy and the more than a decade work of volunteer youth leaders throughout the country in promoting the network's four advocacies: newborn screening, folic acid supplementation, rare disorder support, and the latest addition, preconception health.

This year's roster of activities is a fusion of traditional VYLH-Philippines activities and several social media trends, such as TikTok.

On its culminating day, VYLH-Philippines had its annual online "Kamustahan" get-together dinner via Zoom, which was well-attended by its members. It was a blissful night as everyone got to enjoy the short program and participate with the online games. The highlight of the night was the premiere of the the VYLH's song "Be One, VY."The song, composed by Ms. Beau Tinio (Hiraya)of Bohol, was first played during the network's 4th National Leadership Congress.

Video by June Abellar (Hayaw, Negros Occidental)

Despite the situation we are facing, everyone enjoyed celebrating the success of the network. Another highlight on that night was the message given by the network's founding adviser, Dr. Carmencita D. Padilla, or Tita Menchit, as what we volunteers are used to calling her. It only goes to show that the pandemic can't stop the volunteers from performing what they love doing even in this very challenging time when most activities are interdicted.

Additionally, in observance of this year's Nutrition Month and National Disability Prevention and Rehabilitation Week, the Volunteer Youth Leaders for Health-Philippines, together with the Institute of Human Genetics, National Institutes of Health-UP Manila, organized the 5th #FolicacidPH National Social media Day for Folic acid Awareness. The event spearheaded by VYLH-Philippines North and Central Luzon Cluster and supported by Newborn Screening Central Luzon and partner youth organizations, was held under the theme,"Folic Acid Supplementation: Key to Better Health of our Future Generation". Various social media activities and a webinar on folic acid were also organized by the network in support of the observance of the social media day.

For this year's anniversary, the VYLH-Philippines Mindanao Cluster was tasked to spearhead the activities and be the overall-in-charge of the celebration. The Newborn Screening Center - Mindanao, through the generosity of the Unit Head and VYLH-Philippines Mindanao Cluster Adviser, Dr. Conchita Abarquez, or "Tita Conch," sponsored tumblers. The tumblers were sent out to the active members, especially those who have completed the 11-day challenge.#

Words by Shane Paul Baula, RN (K4, Davao City), VP Mindanao

Edited by: RPascual, Trisha Guioguio

PAMPANGA - Once again, the Volunteer Youth Leaders for Health (VYLH)-Philippines, together with more than 40 organizations who accepted the challenge to become partners in the campaign, utilized its youth force last July 18, 2020 in the promotion of the significance of folic acid supplementation to the health of everyone, especially those who are planning to conceive.

The National Social media Day for Folic acid Awareness, also known as #FolicacidPH, was conceptualized by VYLH-Philippines Pioneer and Former National President Ryan John Pascual in 2016. Since then, the event is annually held in conjunction with the observance of the Nutrition Month and National Disability Prevention and Rehabilitation Week. This year, the non-profit health promotion activity was coordinated by VYLH-Philippines North and Central Luzon Cluster.

About the theme

Our future generation deserves the best start in life. An insufficient amount of folic acid in the body of a woman before and during each pregnancy can mean the difference between a normal life for the baby and a life challenged by congenital anomalies or one cut short by untimely death. Thus, taking folic acid supplements can be the first best gift we can give to our future kids.

On its 5th year, the theme of the social media campaign, “Folic acid supplementation: Key to better health of our future generation” emphasizes the importance of taking folic acid before and during each pregnancy, as well as its role in ensuring the health of our next generation. Knowing this, the vitamin can contribute largely to the quality of their lives and their future contributions to the society at large.

Folic acid is a key component in preventing some major birth defects of the baby's brain and spine, collectively known as neural tube defects (NTD). Studies shows that the intake of folic acid through supplementation and food fortification can significantly reduce the risk of NTDs. In case of supplementation, proper dosage and intake schedule can lessen the risk of NTDs by up to 70% [1].

Folic acid is very important for the health of babies during conception. However, this doesn’t mean that only pregnant women and those that are in the reproductive age need folic acid. Everyone needs folic acid. Folic acid, also known as Vitamin B9 or folate, is used by our bodies to make new cells. Since it is water-soluble, it is excreted regularly from the body and it should be replenished everyday.

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 [2]. This may be associated to the low awareness on the significance of Vitamin B9 among Filipino women belonging in the reproductive age and the absence of a legislation on Folic acid fortification, supplementation and public education. With these in mind, VYLH-Philippines conducts awareness campaigns such as #folicacidPH and engages its campaign partners to reach more people and inform them of the impact of folic acid for them as an individual, their families and for the whole community.

#folicacidPH 2020

Modifications were made for this year’s campaign were made to adapt to the present situation brought about by restrictions due to the COVID-19 pandemic. This health crisis posed a great challenge to the campaign but the members of VYLH-Philippines made sure that, despite the hurdles they faced, the goal of increasing public awareness about the importance of Folic acid supplementation was met.

Because everyone’s safety is of highest priority, “on-the-ground” and group activities, that were conducted during the previous years by the members of VYLH-Philippines and its partners, were discouraged. Hence, #folicacidPH 2020 was composed purely of online activities.

The campaign focused on sharing posts about folic acid and its benefits to everyone’s health. The official profile photo frame and profile banner for #folicacidPH 2020 were also launched during the campaign’s kickoff at the start of the month of July. Partner organizations were also encouraged to craft their own infographics and conduct online discussions about the campaign.

A statement chain was shared through social media where advocates stated the reason why they support #folicacidPH and a bingo card with pictures of different foods tickled the minds of the advocates as they identify which of those are good sources of folate.

To take advantage of the popularity of TikTok among the youth, VYLH-Philippines also launched #FASayaw, a dance challenge for Folic acid awareness. #folicacidPH also took the Twitter-verse by storm as facts about Folic acid were tweeted and retweeted by the advocates during the Tweet Barrage. Another Tiktok challenge that was done by VYLH-Philippines volunteers for the 11th Founding Anniversary of the network and national social media day was the "e-numan" challenge wherein volunteers took the vitamin in the tune of Oops by Little Mix.

To cap off the campaign, over 300 advocates attended the Folic acid Webinar hosted by the VYLH-Philippines conducted on July 19, 2020 (6:00 P.M. Manila Time) via WebinarJam. The webinar featured three lectures. Ms. Jeanne Ruth Basas, RND, Nutritionist-Dietitian of the UP NIH-Institute of Human Genetics, discussed about folic acid in the diet. Dr. Mary Ann Abacan, Geneticist-Metabolic Specialist in UP-Philippine General Hospital and VYLH-Philippines NCR-South Luzon Cluster Adviser, gave updates about folic acid while UP Manila Chancellor and VYLH-Philippines Founding Adviser Dr. Carmencita D. Padilla explained the importance of having a comprehensive legislation for folic acid fortification and supplementation. The presentations were followed by an open forum facilitated by the webinar moderator, VYLH-Philippines National President Rufus Thomas Adducul.#

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[1] Blencowe et al.2010
[2] DOST CALABARZON

Words by Nikki Dela Cruz, RN (Kabilin, Pampanga)
Edited by RPascual/Trisha Guioguio

MANILA - Last August 29, Volunteer Youth Leaders for Health (VYLH) – Philippines together with the Institute of Human Genetics, NIH-UP Manila, March of Dimes, Department of Health (DOH) and the Commission on Population and Development (POPCOM) organized a webinar on preconception health which marked the culmination of the first youth-led Preconception Health Awareness Week. The webinar and week-long event held with the theme“Preconception Health para sa Malusog na Pangangatawan at Planadong Kinabukasan” aimed to increase public awareness on the importance of preconception health in attaining good health and well-being among women and men of reproductive age, as well as the importance of preconception care in the prevention of birth defects and premature births.

Honorable speakers, namely, POPCOM Commissioner Dexter Galban, March of Dimes Vice President of Global Health Programs Dr. Salimah Walani, and UP Manila Chancellor and VYLH-Philippines National Program Adviser Dr. Carmencita Padilla, were invited to talk about the current teenage pregnancy and family planning situation in the Philippines, Preconception health and its global promotion, and Preconception health in the Philippines as a multi-sectoral challenge respectively. The webinar was moderated by VYLH-Philippines Vice President for NCR-South Luzon Ms. Jeanne Ruth Basas, RND.

Moreover, Dr. Mary Ann Abacan and Dr. Beverly Lorraine Ho also graced the webinar by giving their messages to the participants. Dr. Abacan, VYLH-Philippines NCR & South Luzon Cluster Adviser, welcomed all the participants and mentioned that “[i]t can’t be denied that the voice of the youth is what matters because it is your voice that will drive the future”. This was followed by Dr. Ho, Director on Health Promotion and Communication Service of the Department of Health, who greeted everyone and expressed her appreciation for the invitation to this webinar. Furthermore, Dr. Ho mentioned the importance of promoting health in realizing “Ambisyon 2040” or the Philippines’ blueprint in the next 20 years. By the end of 2040, it is hoped that the country will have a "very low poverty rate, and also the young will become successful, accomplished, healthy, and achieve their full potential."

Comm. Galban noted that, although the national fertility rate went down significantly from 4.1 to 2.1 pregnancies per women from 1993 to 2017, consolidated data of POPCOM also showed a 63% increase in the number of pregnancies of women ages 10-14 years old from 2011 to 2018. According to him, this sector is “more vulnerable to challenges because they are not aware of the difficulties, particularly of the part of being a mother or the ramifications of being pregnant early on” which sometimes means that they have to stop school or not going back to school at all. Furthermore, he tackled the different Philippine population management programs challenging the youth especially those who are involved in health engagement, health policies, and health programs to look and see how they can collaborate and work together along with POPCOM. Relevant to the current pandemic situation, he mentioned that among the programs, Adolescent Health and Development, particularly on the issue of mental health is given much attention as this certain group lost their typical support system which they usually get from schools, religious groups, communities, and the like has been disrupted. Comm. Galban then left a challenging yet inspiring statement saying “The youth are done waiting for the world to change and the world is now waiting for the youth to change it.”

Dr. Walani discussed preconception health which she defined as optimizing a woman’s health to promote a future healthy pregnancy regardless of pregnancy plans. She also emphasized the fact that a mother mostly intervenes once she knows that she is pregnant weeks or months later the child was actually conceived; realizing that this is actually too late since the development of most vital parts happened on its first few days and weeks. Dr. Walani also advised couples to communicate with their partners by saying “talk to your partner, talk about health, don’t shy away from the idea of planning for the pregnancy. Don’t shy away from the idea of being healthy.”

Dr. Padilla stressed that preconception health involves not only the women in their reproductive age but also the men since it’s a partnership and a life-course approach that is not only limited during pregnancy. She gave the participants a challenge to reflect on: “Why is it despite the programs we have in the government, despite the programs we have at the local health center, why is it that we’re still getting women who get pregnant at the wrong time and they’re not ready for the pregnancy and of course their problems with the babies; adding, “Be responsible. Start with yourself”. Dr. Padilla also emphasized that people are still part of the solution to the problems related to preconception health since the government alone can’t do it. There may be laws and programs available yet these are not clear and “packaged” programs that emphasize the value of preconception health in the country.

Furthermore, she presented three collaborative strategies for promoting preconception health in the country. First is the academic strategy which involves the training of Genetic Counselors. Next is engaging the Youth through VYLH-Philippines where she acknowledged the efforts of the youth network as one of her major arms in reaching out to the community outside the university. The third is community research and engagement which the Institute of Humana Genetics-NIH, UP Manila has spearheaded. She also commended the Community Youth Project conducted by volunteer youth leaders and their partners which has received funding from a national grant competition.

In the said webinar, majority of the participants (56%) came from the age of 15-20 years old, followed by the 21-25 years old (30%), 26-30 years old (6%), and the remaining were from ages 31-35 and 35-up (6%). Majority of these participants also came from different partner organizations through #YouthForPH.

These demographics show that different age groups, especially the youth, are interested in learning about preconception health. The challenge now is on how to jumpstart and keep the momentum rolling in our advocacy for Preconception Health given the current pandemic. This is where we believe the youth can intervene, especially the social and technological savvy ones, in making the advocacy for Preconception Health digital and far reaching.#

Words by Shane Paul Baula, RN
Edited by Jasper Jover and RPascual

"The pandemic has disrupted our usual protocols and systems, but the poorest and most vulnerable feel the inequalities more so than others. These are mothers who have no access to quality healthcare; babies who are born in less desirable environments:' said Vice-President Maria Leonor Gerona Robredo in her keynote address during the opening of the first ever virtual National Newborn Screening Convention on October 14.

Robredo cited data from UNICEF stating that an estimated 116 million babies will be born under the shadow of the pandemic and this should not stop the new families from getting support and access to primary care.

She then challenged the participants to keep protocols and systems in place to protect not only mothers and their babies but also frontliners who are their primary caregivers; to continue expanding services that can cover indigent families; and to ensure that patients and their families are properly informed and supported when their test comes back positive. She believes that the tasks are daunting and encouraged everyone to continue to find ways to extend service and build together a better future for the next generation.

Held on October 14-15, 2020, the 18th National Newborn Screening Convention attracted over 6,000 registrants composed of health professionals, program implementers, partners, and advocates of the newborn screening program. 1his year's theme, "Navigating the Path Towards a Successful Expanded Newborn Screening Amidst Challenges" was inspired by the exemplary response of the program stakeholders to the COVID-19 pandemic. The two-day event was organized by the Newborn Screening Society of the Philippines (NSSPI) and the University of the Philippines (UP) Manila through the Newborn Screening Reference Center (NSRC).

This was the first time that the convention was held online since it started in 2001. Notwithstanding the COVID pandemic, NSSPI still aimed to provide education, technical updates, and share best practices on newborn screening operations. 1his year's convention was also in honor of the life and strong leadership of NSSPI President Dr. Ephraim Neal Orteza, who passed away last April 8 due to COVID-19. Orteza had served as president from 2015 until his death.

Overall Program Chair and NSRC Director Dr. Noel Juban welcomed the participants and presented the status of the program after the implementation of expansion in the number of disorders being screened from 6 to 29 [expanded newborn screening], its continuing challenges, and the efforts to address them. "With the present national and global situation related to the Covid-19 pandemic, we, [the] newborn screening advocates, have continued giving our services towards our goal of saving every Filipino child from mental retardation and death;' he said.

UP Manila Chancellor Dr. Carmencita Padilla, one of the conveners of the newborn screening program in the Philippines, presented the strategic framework for the implementation of the Expanded Newborn Screening (ENBS) in the country, the strategies to be undertaken to attain the targets set in the framework, and the significant roles of the different program stakeholders.

Meanwhile, the plenary sessions featured the following topics: endocrinology, metabolic, hematology, genetic counseling, nutrition, and the resilience and solidarity of the various levels of newborn screening implementers as they responded to the challenges brought about by the pandemic.

In the plenary session on endocrinology, Dr. Lorna Abad, Chair of the UP-Philippine General Hospital Department of Pediatrics, presented the basic facts on Congenital Hypothyroidism (CH). She also differentiated between transient and permanent congenital hypothyroidism. Dr. Sylvia Estrada, Chair of the Newborn Screening Expert Committee on Endocrine Disorders, shared the prevalence and importance of early detection and treatment of Congenital Adrenal Hyperplasia (CAH). She also shared the hindrances in CAH care and current efforts to lessen these such as holding regional newborn screening clinics in collaboration with the Philippine Society of Pediatric Metabolism and Endocrinology (PSPME).

With the metabolic medicine in focus, two clinical geneticists, Dr. Leniza de Castro-Hamoy and Dr. Mary Ann Abacan, presented Tyrosinemia Type I and Glutaric aciduria Type I, respectively. Both are autosomal recessive disorders of amino acid metabolism which result in primarily hepatic, but also renal, skeletal, and neurologic manifestations. They also talked about the importance of early detection, proper management to prevent life-long complications, and the need to continue advocating for patients with rare diseases to make sure that treatment and medications become more accessible to the patients.

Day 1 ended with a plenary session focusing on Hemoglobinopathies. Drs. Maria Beatriz Gepte and Reynaldo de Castro, both hematologists from the Philippine Children's Medical Center (PCMC), correspondingly presented the prevalence in areas endemic to malaria of Alpha Thalassemia where the more severe forms are present, and the challenges of blood transfusion in Beta Thalassemia. Gepte highlighted the importance of physician, community education, and genetic counseling to prevent long term complications, development of more severe disease, and further perpetuation of alpha thalassemia in the population. De Castro on the other hand, emphasized significant health concerns as well as the economic impact of beta thalassemia.

Day 2 of the convention started with a plenary session that focused on the importance of evaluating and understanding a family's risk of an inherited medical condition through genetic counseling. Genetic counselors Dr. Ma-Am Joy Tumulak, Angela Pascua, and Peter James Abad emphasized the value of information and support to families affected by or at risk of a genetic disorder. Tumulak stressed the importance of a multidisciplinary team of doctors, nurses, social workers, therapists, and genetic counselors in the holistic management of the patients. She mentioned the role of genetic counselors in providing a unique opportunity for the family to receive continuous support, information, and continuity of care. Pascua cited that genetic counseling will help replace misconceptions about the causes of genetic diseases and promote psychological wellbeing and adaptation to the genetic condition or risk, specifically in hemoglobinopathies. Abad, on the other hand, focused on the crucial phase of disclosing the bad news and how primary care providers can best approach the relaying of information to families in a sensitive, respectful, and empathic manner.

The plenary session on nutrition featured practitioners of metabolic dietetics and developmental pediatrics. Aster Lynn Sur, dietician and metabolic nurse, discussed the history of metabolic dietetics and the critical role of dietitians in the management of patients with inborn error of metabolism (IEM). She mentioned the challenges faced by metabolic dietetics, including professional standards, development of outcome-based treatment guidelines and protocols, research and development, and local and international collaboration, among others. Jeanne Ruth Basas, metabolic dietician, tackled the challenge of IEM dietary management during the time of the pandemic. She specified difficulties in securing adherence to patients' nutritional management, transition from face to face consultation to telemedicine, and procurement of food and medicines for patients. Dr. Kaye Napalinga, developmental and behavioral pediatrician, discussed the techniques in improving the feeding experience of the child. She emphasized that feeding infants and young children not only ensures physical growth but shapes their emotional and social development.

In the last plenary session, four program implementers presented how they provided the newborn screening services amidst the challenges brought about by COVID-19. They shared what drove them to continue implementing newborn screening and how they responded to the challenge from collection to transmission, to testing and management of positive patients. It also featured how the DOH Center for Health Development responded to lessen the operational gap in the provision of newborn screening services in the region. Dr. Conchita Abarquez, Head of lhe Newborn Screening Center-Mindanao, Dr. Ma. Rita Anne Salve Boligao, Follow-up Head of the Newborn Screening (NBS) Continuity Clinic in Vicente Sotto Memorial Medical Center (Cebu), Dr. Monrey Isaiah Mancilla, Newborn Screening Program Manager of Bicol Center for Health Development, DOH, and Dr. Maria Alejandra Narcelles, NBS Coordinator of Pira General Hospital, Cabugao, Ilocos Sur, shared how the significant disruption of the operations of newborn screening required each of them lo adapt lo adversity and maintain resiliency during the pandemic.

The National Newborn Screening Convention, held every year in October, convenes participants from different health professions to learn from local and international experts, program consultants, and program implementers. The theme constantly follows the theme of the Newborn Screening Awareness Week Celebration every first week of October in accordance with Presidential Proclamation No. 540 issued by then President Gloria Macapagal on January 20, 2004.

First published on Philippine Star, October 18, 2020

MEDIA RELEASE

Newborn Screening Reference Center @newbornscreenph
National Institutes of Health - UP Manila
https://newbornscreening.ph
info@newbornscreening.ph

Newborn screening is an essential preventive public health program for the early detection of congenital disorders in newborns that may lead to mental retardation or even death if left untreated. It is performed shortly after 24 hours of the birth of the baby in hospitals, lying-ins, rural health units, health centers, and private clinics.

If screened positive in one of the disorders, the baby undergoes a confirmatory test and is subsequently followed up for management. Administration of the necessary treatment and management is the reason why newborns need to be screened immediately. Hence, the COVID-19 pandemic is a huge challenge in the provisions of newborn screening services. The lockdowns in many areas of the country, suspension of transportation services including air travels, non-operation of major couriers, and closure of borders in some provinces have posed challenges to the newborn screening program. Program implementers were faced with delays in the transmittal of newborn screening samples, significant decrease in the newborn screening sample receipt, overwhelming number of late samples, delay or cancellation of confirmatory testing, and suspended follow up visits of patients. Managing the operations at different levels was and continues to be a tough task.

To weather the storm, newborn screening program leaders quickly stepped up to respond and coordinated mitigation plans effectively and efficiently. Throughout the pandemic, all newborn screening centers (NSCs), regional newborn screening teams at the Department of Health - Centers for Health Development (CHDs), newborn screening continuity clinics (NBSCCs), and newborn screening facilities (NSFs) in the country remained operational and employed various strategies while observing standard protocols in continuously giving quality newborn screening services.

The recently concluded newborn screening virtual convention featured the best practices of some program implementers during the crisis. The Newborn Screening Reference Center keeps several stories of innovations - from the Newborn Screening Bayanihan Strategy in Northern Luzon, the active social media campaigns of Central Luzon, release of certifications for checkpoints in Southern Luzon, and extension of credit line in the Visayas, among others.

Newborn Screening Center - Mindanao

The NSC Mindanao and the CHD teams organized a system to help bridge the gaps and establish alternative plans to keep the program afloat in Mindanao.

The CHD Zamboanga formed a special task force on newborn screening. It also coordinated with the Office of City Mayor Isabelle Climaco-Salazar for the weekly transport of samples to the NSC. The Edwin Andrews Air Base and the Philippine Airforce Western Command made possible the airlifting of samples, medical milk supplies, and pertinent documents to and from Region 9 via military aircrafts.

Meanwhile, the CHD Northern Mindanao, together with city health offices and selected facilities, served as drop-off and pickup locations within the region. With lockdown protocols in place, the CHD and NSC Mindanao teams met at the border checkpoints of Davao City to turn over specimens and documents once a week. In three months’ time, Region 10 was able to deliver a total of 12,417 samples.

In Davao, many health facilities within Davao City hand carried samples to the NSC. The CHD 11 NBS team assisted these facilities using its service vehicles. A temporary delivery system was also established through the assistance of the different provincial DOH Offices. The Sta Rita Maternity Clinic, Isaac Robillo Memorial Hospital, Dr Lorenzo Principe Clinic and Malita District Hospital also volunteered as drop-off facilities.

Since vehicles were not allowed to enter Davao City, the NSC Mindanao requested the Viacrucis Medical Hospital to serve as drop-off points for Sultan Kudarat Provincial Hospital's samples. The assigned staff from both facilities met at the border of Davao del Sur and North Cotabato Province.

DOH vehicles and provincial ambulances were used to enter the border from the south. Along with provincial hospitals in Sultan Kudarat, and North and South Cotabato, they formed the backbone of the ENBS task force in the SOCCKSARGEN region.

The DOH CHD Caraga used the provincial DOH offices as drop-off and pickup locations. The NBS team of CHD Caraga and NSC Mindanao met at the northern border checkpoints of Davao City once a week.

The Maguindanao and Lanao del Sur areas of the Bangsamoro Autonomous Region in Muslim Mindanao were serviced by the CHD 9 and 12, respectively. The DOH-CHD 9 also transported samples of health facilities from Basilan and Tawi-tawi provinces. With the help of the Integrated Provincial Health Office Sulu, samples from Sulu were transported directly to Davao City courtesy of the Philippine Airforce Tactical Squadron Operations of Jolo, Sulu.

DOH Center for Health Development - Bicol

A series of consultations was held with several stakeholders, i.e. provincial health offices, city coordinators, health facilities, external partners, COVID team, and other internal stakeholders to discuss strategies to ensure the Business Continuity Plan (BCP) for the ENBS.

The CHD 5 immediately transitioned from conventional in-person activities to online orientations, meetings, trainings, advocacy activities, webinars, and other forms of technical assistance.

On the logistics side, the CHD 5 created and operationalized the timely receipt and sending of ENBS and confirmatory samples from health facilities to the NSC National Institutes of Health in Quezon City. It facilitated the delivery of kits from the NSC to the health facilities, and the delivery of essential medical supplies, foods, supplements to patients, among others.

Pira Hospital Cabugao, llocos Sur

Difficulties emerged regarding the transport of specimens and obtaining of filter kits on time from the NSC Northern Luzon in Mariano Marcos Memorial Hospital and Medical Center, Batac, llocos Norte, which is situated in another province.

Bless Macugay, chief medical technologist of Pira Hospital, goes to the border and hands over properly sealed specimens to the one manning the border from NSC. In turn, that personnel bring the specimens for testing at the NSC.

The Pira Hospital also used the acronym COVID to characterize the goals of the program - C for communication, O for obedience, V for vigilance, I for innovation and creativity, and D for diligence in performing timely screening.

Newborn Screening Continuity Clinic - Cebu

The Newborn Screening Continuity Clinic (NBSCC) is an ambulatory clinic based in a tertiary hospital identified by the DOH to be part of the National Comprehensive Newborn Screening System Treatment Network. One of the NBSCCs is located in Cebu, hosted by the Vicente Sotto Memorial Medical Center (VSMMC) serving 497 patients including those in Bohol, Dumaguete, Siquijor, and the entire Cebu Province.

Faced with challenges during the COVID pandemic, such as difficulty in recall of patients; non- compliance with follow up, treatment, and laboratory monitoring; travel restrictions; and low supply of medicines and medical food, the NBSCC in Cebu immediately transitioned to telemedicine and activated networks of referral in the region for patient monitoring. It currently uses text messaging, phone calls, and video calls through different online applications for remote patient monitoring and clinical validation together with sub-specialists (pediatric endocrinologists and metabolic specialists), and dietitian-nutritionists. It also refers patients to the DOH-CHD, RHUs, or satellite clinics in some provinces either for follow ups or home visits.

Supply and logistics for medicines and medical food for patients were coordinated with the Institute of Human Genetics (IHG)- UP Manila, DOH-CHD 7, Office of the Civil Defense, Philippine National Police, and Philippine Air Force.

There are valuable lessons emerging from the current crisis. It has been proven time and again that collaborations among program partners, supporters, and those who lend their hand especially during the time of crisis can make a positive difference. COVID-1 9 is a threat but, at the same time, an opportunity for having efficient and effective continuity plans and creative strategies that allowed the newborn screening implementers to continue fulfilling their essential roles in ensuring the health and well-being of the most vulnerable in the populace - the newborns.#

First published on Philippine Star, October 18, 2020

MEDIA RELEASE

Newborn Screening Reference Center @newbornscreenph

National Institutes of Health - UP Manila

https://newbornscreening.ph

info@newbornscreening.ph

In observance of the 12th National Rare Disease Week, the Institute of Human Genetics together with the Philippine Society of Orphan Disorders and the Volunteer Youth Leaders for Health – Philippines (VYLH) launched their first webinar on rare diseases entitled “Puhon: Progress and Perspectives in Caring for the Filipino Rare” last 25 February 2021 via the Zoom webinar platform.

The event was opened by the Director of the Institute of Human Genetics Dr. Maria Melanie Liberty Alcausin followed by an inspirational message from the Philippine Undersecretary of Health for Public Health Services, Dr. Maria Rosario Vergeire. She emphasized that all individuals including those with rare disease should have access to quality healthcare. While this is a seemingly arduous task, she believes that it is attainable but “necessitates a whole of government, a whole of system and a whole of society approach”. She ended her message with a commitment statement that “the Department of Health will continue to provide the necessary assistance in order to further the advocacy for rare diseases as it is an integral part of the overall objective of the universal healthcare to provide health services to all Filipinos.”

Dr. Mary Ann Abacan, a clinical geneticist – metabolic specialist and one of the advisers of VYLHPhilippines, went on to discuss the basics of rare diseases. She stated that rare diseases are also called orphan disorders because they have been neglected, especially in terms of treatment, for many years. At the same time, rare disease patients suffer from social abandonment because of the lack of an existing network of support to aid them. She reiterated that treatment is available for some of the rare diseases and that everyone can take their part in advocating for public awareness.

UP Manila Chancellor Dr. Carmencita Padilla, main proponent of the Rare Disease Act of the Philippines, discussed the existing landscape of rare diseases locally and internationally. She underscored that even with the enactment of the law, big challenges are still being faced due to the huge cost of individual care and the lack of a national program and sustainable funding. The full implementation of the law as well as the inclusion of rare disease in the Universal Health Care Law are of utmost importance in providing the needs of these patients.

Dr. Ann Ysabelle-Andres of DOH’s Disease Prevention and Control Bureau laid out the DOH’s initiative to develop a national strategic plan on integrated rare diseases management for the period 2022-2027. This includes identification, referral, management, registration, and resource generation thereby ensuring that these patients are guaranteed equitable access to quality health care goods and services.

The event was also graced by Mr. Rizalino Sanchez of the National Council on Disability Affairs and two parents who shared their experiences in caring for their child with a rare disease. The webinar was closed by Mrs. Cynthia Magdaraog, President of the Philippines Society for Orphan Disorders, who expressed her hope for progress with the strong partnership and renewed commitment of the government and the academe.#

Published in the UP Manila Newsletter HealthScape
Special COVID-19 Issue No. 24 (February 2021)
Published by the UP Manila - Information, Publication, and
Public Affairs Office (IPPAO)

MANILA - In celebration of the 5th World Birth Defects Day, the March of Dimes (MOD) together with World Health Organization (WHO) and the US Centers for Disease Control and Prevention (US CDC) organized a webinar entitled: “Saving Lives of Babies with Birth Defects and Improving their Quality of Life” last March 03, 2021 (CET).

This webinar aimed to promote quality of care and universal health coverage for children with birth defects and to bring to light different perspectives and the need for this advocacy. Among the panelists was Dr. Carmencita D. Padilla, Professor of Pediatrics, Chancellor of the University of the Philippines Manila, where she shared the success story of the newborn screening program of the country.

After the webinar, MOD hosted a twitter chat that fostered important virtual discussions with various organizations from all over the world. The Volunteer Youth Leaders for Health – Philippines whose advocacy includes the promotion of folic acid in the prevention of birth defects, participated actively in this unique event.

Dr. Padilla also attended the Rare Disease Day Policy event, a Call for a UN Resolution on Persons Living with a Rare Disease, "Why a UN Resolution and Why Now" on March 3, 2021 (CET). The overarching goal of the event is to position persons living with a rare disease (PLWRD) as a priority population in need of global and national policies that address their needs and contribute to achieving the UN 2030 Agenda, the Sustainable Development Goals and their pledge to ‘leave no one behind’. At this event, the proposal from the rare disease civil society community, with the support of a number of UN Member States, is to adopt a UN General Assembly Resolution that can act as a catalyst towards this goal.#

WATCH: Rare Disease Day Policy Event, a Call for a UN Resolution

Published in the UP Manila Newsletter HealthScape
Special COVID-19 Issue No. 25 (15 March 2021)
Published by the UP Manila - Information, Publication, and
Public Affairs Office (IPPAO)

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