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

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

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

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

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

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

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

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

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

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

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

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

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WHO, UNICEF-PHL release advocacy videos on #WorldPrematurityDay

Health Promotion and Advocacy Update

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

WHO's Recommendations to improve Premature Birth Outcomes

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

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

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

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UNICEF Philippines advocates for Kangaroo Mother Care

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

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

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

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

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

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

Content Adapted from March of Dimes

Visuals prepared by VYLH-Philippines

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

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VYLH welcomes PSNbM as prematurity awareness campaign partner

Health Promotion and Advocacy Update

Prematurity Awareness Month and 

World Prematurity Day Primer

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

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

#WorldPrematurityDay (Nov. 17)

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

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

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

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Rare Disease bill moves closer to passage

The House of Representatives 

Health Promotion and Advocacy Update

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

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

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

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

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

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Take a break and watch these #FightForPreemiesPH videos

Health Promotion and Advocacy Update
Prepared for World Prematurity Day 2015

Photo: World Prematurity Day Facebook Page

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

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

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

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

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