More than a test: Interesting facts about Newborn Screening

Health Promotion Update No. 3 - Series 2013
Health Promotion and Advocacy Working Group
Updated 28 September

In celebration of the 2013 Newborn Screening Week, VYLH-Philippines will be posting interesting facts and trivias about Newborn Screening in our Official Facebook Account. These updates will also be compiled in this blog post. 

---

Photo credits: Baby's First Test 

2013 marks 50 years of saving lives through newborn screening. (Posted 28 September 2013)

In 1963, Dr. Guthrie’s method of testing was finally published in the journal Pediatrics. The Guthrie test is a microbiological assay for the presence of phenylalanine, phenylpyruvate, and phenyllactate in blood or urine. In the same year, the field trial was completed and this pushed the USA Children's Bureau to adopt the slogan, "Test Every Newborn For PKU."

This discovery marked the beginning of NBS - a simple test that has changed and saved lives.

Did you know that...

Newborn bloodspot screening (NBS) was only introduced in the Philippines in 1996?

Read More

NBS Week 2013: Facing the Challenges of Expanded Newborn Screening

Read More

VYLH-Philippines pilots a Hospital-based organization: The VSH experience

Written by Robin Charles Ramos

It has been the mission of the Volunteer Youth Leaders for Health-Philippines to expand its network all over the country. Likewise, it has been the desire of every volunteer to help in involving additional youth leaders and organizations to the advocacy. In the past, the network has focused on reaching to school and community-based organizations.

With these, I sought the opportunity to orient and train the nurses of Valencia Sanitarium and Hospital Foundation, Inc. (VSH) and  to create an NBS Team in the hospital. Through their active participation, the plan to pilot a hospital-based organization, a VYLH-Philippines Hospital Chapter, materialized. This type of local network of volunteers and health providers aims to empower its members in influencing the whole community of Valencia and its neighboring municipalities in Bukidnon. This will be possible in the participation of volunteers in the medical outreach and strategic programs conducted by the hospital. Through these ride-on activities, volunteers can easily promote not only newborn screening but also other advocacies of the Network, such as folic acid supplementation and support to Filipinos with rare disorders.
(Read more on VYLH-Philippines Advocacies).

Read More

Promoting NBS Awareness through Hospital-based Strategies

Written by Robin Charles Ramos 

Saving the future of our babies lies in our hands.

Undergoing newborns to the newborn screening test (NBS) partially fulfills what has been agreed in the Fourth Millenium Development Goal (MDG) – Reduce Child Mortality. Through the program, we can save lives of our children through early detection of metabolic disorders. Congenital metabolic disorders are genetic diseases which do not physically manifest at birth but can lead to detrimental effects to the child such as mental retardation or death. These effects can only be averted with early detection and therapy. 

As a VYLH-Philippines volunteer, my active involvement in the advocacy, since I was trained to educate people especially the youth about the program, has allowed me to find my niche. Though I am not a medical or health professional, I see the importance of participation by playing an important role in educating the community about the program and its importance. I believe that relevant and basic information is the key towards successfully reaching zero-rate newborn fatality and a hundred percent newborn screening coverage.

Valencia Sanitarium and Hospital Foundation in Valencia City, Bukidnon
(Photo Credits: VSH Facebook Page)

Read More

Valencia Sanitarium and Hospital spearheads G6PD Forum

Written by Robin Charles Ramos
Originally Published in VSH's Lifeline Weekly Vo. 1 No. 15

Sixty-five parents and their children participated in the 1st G6PD Forum spearheaded by VSH on August 29, 2013 at the VSH Conference Room. Out of the 80 VSH G6PD deficiency cases confirmed through newborn screening, 30 were being represented by either a parent or a close relative. The rest of the 65 participants came from other health facilities within Valencia City.

“We felt a great need to promote newborn screening and at the same time answer the many questions lingering in the minds of parents with G6PD deficient children. And we felt that organizing this forum will be a big help", Mrs. Lylibeth Halasan, the VSH Chief Medtech and one of the main organizers of the program explained". As such, we invited Dr. Conchita G. Abarquez, a pediatrician and the only geneticist in Mindanao to be our guest speaker", she added. Dr. Abarquez currently heads the Newborn Screening Center – Mindanao based in Davao City.

Read More

VYLH expands network in UP Diliman

Written by Gina Valera

The Volunteer Youth Leaders for Health (VYLH) UP Diliman Chapter conducted an orientation for invited university organizations last August 16 at the Institute of Biology Pav 4. The event was attended by 32 students from UP Diliman belonging to six different organizations namely: UP Psychology Society, UP Buklod-Isip, UP Red Cross Youth, UP Zoological Society, UP Pre-Medical Honor Society, and Philippine Association of Nutrition – Alpha.

Read More

Med Mission 2013: Lingkod-Alay ng GeneSoc

Written by Gessa Ramos

Last July 28, one of the pioneer organizations of VYLH-Philippines and the coordinating group of the UP Los Banos (UPLB) Chapter, The UPLB Genetics Society (GeneSoc), conducted its annual medical mission at Barangay Bagong Silang, Los Banos, Laguna - a community located within the Mt. Makiling Forest Reserve which can only be reached through a horse backride or a hike. GeneSoc's Medical Mission was held in connection with the organization’s outreach program and advocacies. 

Read More

All set for Expanded Screening Program

Health Promotion Update No. 2 – Series 2013
Health Promotion and Advocacy Working Group

Newborn Screening Newsletter (March-April 2013 Issue)

Photo credits: Newborn Screening Reference Center

To save more babies, the Department of Health (DOH) Advisory Committee on Newborn Screening (ACNBS) has approved the implementation of the expanded newborn screening. Starting January 2014, the expanded panel will include hemoglobinopathies and additional metabolic disorders, namely, organic acid, fatty acid oxidation, and amino acid disorders. All these conditions can be treated at birth, avoiding complications of no treatment.

Data of Filipino newborns screened in the California newborn screening program from 2005 to 2009 have prompted the formal recommendation of expanded newborn screening program in the Philippines to the ACNBS on January 16, 2012. The data revealed that of the 111,127 Filipino newborns screened, more than 20 disorders were identified to be present—a mix of endocrinologic and metabolic conditions as well as hemoglobinopathies. The necessary confirmatory centers and network for referral, management, and treatment of patients are now being set up in strategic areas in the country. The DOH already has a list of nominated hospitals to house the Newborn Screening Follow-up Clinics (NFCs) . The establishment of NFCs will ensure capable management of identified positive cases.

Initially, one NFC will be setup per region. The NFCs will coordinate with a team of specialists and subspecialists. Due to the shortage of some of the subspecialists, teleconsultations will be one of the features of this clinic.A more intensive advocacy to reach the general public will be launched on October 2013, targeting provincial and marginalized urban communities with a high rate of homebirth needs. A new set of campaign materials will be released, emphasizing the value of responsible parenthood.

Expanded newborn screening will be optional and will be offered to parents in all participating facilities with the following options:

Option 1: Six (6) disorders (CH, CAH, GAL, PKU, G6PD, and MSUD) at P 550.
Option 2: The full complement of the disorders at P 1,500

The cost of newborn screening, which is now at P 550, is presently included in the newborn care package for members of PhilHealth. There are ongoing discussions with PhilHealth management to increase the subsidy for the expanded newborn screening. VMendoza

_________________
Ms. Vina Mendoza is the Managing Editor of Newborn Screening, the official newsletter and bimonthly publication of the Newborn Screening Reference Center - National Institutes of Health, UP Manila.

Visit newbornscreening.ph, the Official Website of the Newborn Screening Reference Center to get the latest copy of Newborn Screening.

Read More