Nbs vylh volunteers copy (july 13.2010)
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This document discusses newborn screening and its importance in the Philippines. It describes how newborn screening tests for various disorders can detect issues early before symptoms appear, allowing for treatment that prevents intellectual and physical disabilities. The document outlines the expansion of newborn screening across the Philippines over time through increased testing sites and an advocacy campaign that led to creating a national newborn screening program and law in 2004.
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Nbs vylh volunteers copy (july 13.2010)
- 1. Newborn Screening: Saving Babies of the Future Aple Dowannie B. Tadlas VYLH-Mindanao Mindanao State University
- 3. Newborn Screening is An essential public health program that prevents catastrophic health consequences through early detection, diagnosis and treatment.
- 4. What disorders are screened? • Congenital Adrenal Hyperplasia CAH) • Congenital Hypothyroidism (CH) • Phenylketonuria (PKU) • Galactosemia (Gal) • Glucose-6-Phosphate Dehydrogenase Deficiency (G6PD def)
- 5. Why are these disorders included in the NBS Panel of Disorders? •Local Prevalence •Reversible if treated on time •Treatment is available
- 6. 33,000 babies can be saved every year *Assuming a cohort of 2.M newborns
- 7. Alarm Signal •Babies look normal at birth. • Waiting for the onset of the signs and symptoms would lead to irreversible effects to the body meaning its too late.
- 8. Effects if Not screened Disorder Screened Effect if NOT SCREENED Effect if SCREENED and Treated CH (Congenital Hypothyroidism) Severe Growth and Mental Retardation Normal CAH (Congenital Adrenal Hyperplasia) Death Alive and normal GAL (Galactosemia) Death or Cataracts Alive and normal PKU (Phenylketonuria) Severe Mental Retardation Normal G6PD Deficiency Severe Anemia Kernicterus Normal
- 9. When is newborn screening done? • Newborn screening is ideally at least 24 hours from birth.
- 10. Prick here How is newborn screening done?
- 11. Newborn SSccrreeeenniinngg iiss aavvaaiillaabbllee iinn tthhee PPhhiilliippppiinneess •Hospitals •Birthing/lying in centers •Health Centers/Rural Health Center
- 12. Giving up 1.5 sticks every day for 1 year Giving up 2 bottles every month for 9 months Newborn screening Fee P550 Giving up 1 bottle of coke Every week for 1 year Giving up 2 cells cards in 9 months Missing 55 days of daily lotto bet
- 13. Highlights of the Phil Program 1996 MMEETTRROO MMAANNIILLAA Capitol Medical Center Cardinal Santos Medical Center Children’s Medical Center Chinese General Hospital De Los Santos Medical Center Dr. Jesus Delgado Memorial Hospital Dr. Victor R. Potenciano Medical Center FEU-NRMF Hospital of the Infant Jesus Jose Reyes Medical Center Las Pinas Integrated District Hospital Makati Medical Center Manila Doctors Hospital Manila Sanitarium and Hospital Mary Chiles General Hospital Mary Johnston Hospital, Inc. MCU-FDTMF Medical Center Manila Metropolitan Hospital MPI-Medical Center Muntinlupa National Children’s Hospital Olivares General Hospital Ospital ng Maynila Our Lady of Lourdes Hospital Perpetual Help Medical Center Philippine Children’s Medical Center Philippine General Hospital Quezon City General Hospital Quezon City Medical Center Quirino Memorial Medical Center Rizal Medical Center San Juan Medical Center Santo Tomas University Hospital St. Luke’s Medical Center St. Martin de Porres Hospital The Medical City UERMMMC United Doctors Medical Center Started in 18 private and 6 govt hospitals in 1996 The group of doctors comprised the Newborn Screening Study Group The pilot project was named the Philippine Newborn Screening Project, a multi-center trial. 24 hosp
- 14. NEWBORN SCREENING IN THE PHILIPPINES Wao District Hospital Wel-Family Midwife Clinic - Pakong Wel-Family Midwife Clinic - Macabantog Wel-Family Midwife Clinic - Sabpa Wel-Family Midwife Clinic - Tabao Wel-Family Midwife Clinic - Monib Wel-Family Midwife Clinic - Lastimoso Wel-Family Midwife Clinic - Womb Wel-Family Midwife Clinic - Ahalul Wel-Family Midwife Clinic - Acoon Center for Health Development - ARMM Amai Pakpak Medical Center Dr. Serapio B. Montañer Jr. Al-haj Memorial Hospital Tamparan District Hospital Buluan District Hospital Tamontaka Barangay Health Center D.O.S. Maguindanao Wel Family Midwife Clinic - Bulalo, Maguindanao Unayan Municipal Hospital Dr. Jose Maria Torres Memorial Foundation Hospital Inc. 2515 NSF as of December 31, 2009
- 16. Neonatologist Nurse Nursery Team Community Health Workers A Hospital Coordinator giving a lecture on newborn screening
- 17. Door to door Campaign
- 18. PPRREESSIIDDEENNTT’’SS HHOOUURR,, SSHHOOWWNN IINN PPHHIILLIIPPPPIINNEE TTVV CCHHAANNNNEELLSS 44,, 99 AANNDD 1133 Getting Support of political Leaders
- 21. Website dedicated to Newborn Screening www.nsrc-nih.org.ph
- 22. BILLBOARDS in STRATEGIC SPOTS
- 23. Celebrity endorser In posters and billboards
- 24. TV Commercial
- 27. Enactment of the Newborn Screening Act of 2004 (April 6, 2004) Signing of the Implementing Rules and Regulation of RA 9288 (October 5, 2004)
- 28. Newborn Screening Law Republic Act 9288 • Integration in the health delivery system • Includes newborn screening the licensure requirement of hospitals • Includes newborn screening as a benefit of the national health insurance
- 29. OCTOBER 2006, REUNION OOFF SSAAVVEEDD BBAABBIIEESS
- 30. A simple drop of blood saves lives.
- 31. What can we do?
Editor's Notes
- Let us start with this picture of Benjie and Rina. Please try to look at them and make a guess of their age. Benji was 14 years old when this picture was taked, he could not walk, talk and even sit alone. His mental age was placed at 1 month old. He was 12 years when the doctor at PGH diagnosed him of his disorders. At the age of 12,Benjie’s fontanels were still open. Today, Benjie is 19 years old. The Girl standing beside him is Rina. Rina was 8 years old when this picture was taken. Today, Rina is 13 years and is now in her 2nd year in high school. She lives a normal life and on top of her class. Both children had problems which were not manifested physically during birth. Both have congenital hypothyroidism. Rina had newborn screening at the age of 2 days old and was treated on time, while Benjie was not screened and was not diagnosed early enough and was only treated at the age of 12. Today, Benjie, is completely mentally retarded and is still dependent on the care the his family while Rina is enjoying a normal life like you and me in this room. Newborn screening is about saving babies from mental retardation and possibly death. It is about helping society prevent more mentally retarded children, helping mothers to contribute more of the economic status of the family rather becoming a care giver of a mentally retarded family member. Newborn screening is also helping government in the long run to reduce cost for the welfare services for retarded children.
- So what is newborn screening? Newborn screening for the early identification of disorders that can cause mental retardation , growth problems and death. There are many conditions that can cause developmental and growth problems, and death, but today we are talking about conditions that can be reversed or treated.
- Currently, the National Comprehensive Newborn Screening System (NCNBS) is screening for five disorders namely. Congenital Adrenal Hyperplasia CAH), Congenital Hypothyroidism (CH),Phenylketonuria (PKU), Galactosemia (Gal) Glucose-6-Phosphate Dehydrogenase Deficiency (G6PD def) For further information of these disorders please refer to the Pink brochure.
- These disorders were included in the NBS panel because of their prevalence among Filipinos, their characteristics to be reversed if screened and treated on time and because there is available treatment of these disorders.
- In this particular slide, please take a look at how many children were screened and found positive in the five disorders. Please take note that in G6PD alone, (point the arrow to G6PD) a total of 34,373 cases were confirmed for 2009. For CH or the cases like that of Benji, there were 522 cases confirmed. If all babies are screened, this number will still increase for sure.
- We are actually screening for 5 conditions right now. and as you can see in the third column if the baby is treated, alive and normal. For each of these conditions, the effects are retardation, death and cataracts. Since these conditions are included in the newborn screening panel, these conditions are reversible and can be treated. Congenital hypothyroidism is a problem with the thyroid gland, treatment is to give thyroid hormone. With congenital adrenal hyperplasia, the problem is with the adrenal gland, within 7 to 10 days, if not detected and treated the child may die. By the time the child die, useless to detect it because the baby is already dead. Another baby from the same parent may suffer from CAH because the parents are carriers. These are genetic unlike CH that is sporadic, so most likely to recur. Galactosemia, from the word galactose – its milk, a need to change milk to soy, soy is available in the supermarket. Phenylketenuria, the baby may suffer from severe mental retardation if you do not change the milk and the child may even die. With G6PD deficiency, the patient can be normal, and may suffer from severe anemia. Our babies Janelle and JR are born with congenital hypothyroidism.
- So when is newborn screening done? It says here, on the 48th hour or at least 24 hours from birth except of course for some sick and premature babies which must be screened by the 7th day of life regardless of weight and age of gestation.
- Newborn Screening sample is taken from the heel of the newborn utilizing the heel prick method.
- We are lucky because its now available in the Philippines…and we can avail of this in hospitals, birthing/lying center, and rural and health center.
- The cost of Newborn Screening is the cost of giving up 1.5 cigarette sticks every month for 9 months or the cost of giving up 1 bottle of coke every week for 1 year or the cost of giving up 2 cell cards in 9 months or the cost of missing 55 days of daily lotto. It’s P550. The P550 cost includes the kit and the courier charges. It is a flat rate throughout the country. A maximum allowance of P50 as collection fee can be added.
- Newborn screening started when 24 hospitals in Metro Manila joined a research work that established the local incidence of some common NBS conditions. The project was later known as the Philippine Newborn Screening Project. This core group of hospitals continued advocacy for the implementation of NBS in other hospitals while waiting for the DOH to take over.
- From 24 hospitals in 1996, the number of health facilities enrolled as an NBS facility, a.k.a. NSF grew to about 2.500 at present.
- Since many are still unaware of the benefits of newborn screening, there is a need for a collaborative effort of all sectors to do advocacy and promotional work.
- Door to door campaign during NBS Awareness week every 1st week of October.
- The NBS Pink brochure contains all the information needed to know about the benefit of NBS.
- If you want more information about NBS, you may visit the website of the Newborn Screening Reference Center
- VYLH members doing advocacy and promotional work among fellow students and community members
- VYLH –Philippines pioneers started advocating NBS among students and school staff in the schools and universities, helping rural health units educating the community about the significance of NBS among newborns.
- The NBS Law was enacted in April 6, 2004 and was finally implemented in October of the same year. The law was passed