Burke A Fishburn, MPP Carter Consulting, Inc.

1. Global Initiative to Eliminate Folic Acid-Preventable Neural Tube Defects: A comprehensive approach to reach MDG-4 (reducing under-5 mortality) in South-East Asia Burke A Fishburn, MPP Carter Consulting, Inc. 39th Annual International Clearinghouse on Birth Defects Surveillance & Research (ICBDSR) and 10th Canadian Congenital Anomalies Surveillance Network (CCASN) Joint Annual Scientific Meeting October 2012 National Center on Birth Defects and Developmental Disabilities Division of Birth Defects and Developmental Disabilities Disclaimer: The findings and conclusions in this presentation have not been formally disseminated by the Centers for Disease Control and Prevention and should not be construed to represent any agency determination or policy.

2. Presentation Objectives • Provide an overview of WHO Regional Office for South-East Asia and CDC collaboration to develop a South-East Asia regional strategic framework for prevention of birth defects to reduce newborn mortality and morbidity • Identify and discuss key components of the strategic framework • Identify and discuss platforms for capacity building and integration of birth defect surveillance in the region

3. CDC’s Global Initiative to Eliminate Folic Acid-Preventable Neural Tube Defects CDC is working to advance neural tube defect prevention globally • Build the science base (surveillance, epidemiology, laboratory and prevention capacity) • Educate and inform on the benefits of fortification policies • Establish programs and strategic partnerships

4. CDC’s Global NTD Elimination Efforts:South-East Asia • Advances in infectious diseases resulting in declines in under-5 mortality (MDG4) • MDG4 achievement declining because stagnating neonatal mortality • Mortality from birth defects (BD) has remained constant • BD assuming greater proportional cause of neonatal mortality • Lack of country-specific BD data available • No registries; little surveillance • Little has been done in the Region around BD surveillance • Opportunity to prevent BDs and reduce disability

5. Developing a Strategic Framework for the Prevention and Control of Birth Defects in the South-East Asia Region WHO-SEARO and CDC collaboration • Conducted a Situational Analysis of birth defects in the South-East Asia region • Convened a Regional Expert Group Meeting (Dec 2011) • Convened a Regional ProgrammeManagers’ Meeting (Mar 2012) • Conducted a Regional Workshop on Birth Defects Surveillance (Apr 2012)

6. Strategic Framework for Prevention and Control of Birth Defects in the South-East Asia Region (2012-2016) • CONTENTS • Executive summary • Introduction • Rationale • South-East Asia Region present situation, challenges and needs • Principles • Goal and targets • Strategic directions • Implementation steps • SEARO and partner roles • Monitoring progress: Indicators • Annexes

7. Strategic Framework for Prevention and Control of Birth Defects in the South-East Asia Region (2012-2016) Goal is to reduce the prevalence of birth defects in the South-East Asia Region in the next five years with four specific targets:

8. Implementation of the Framework

9. Platforms for Capacity Building and Integration of Birth Defect Surveillance • Need to strengthen national capacity for surveillance • Workshops and trainings • Healthcare workforce • Field Epidemiology Training Programs • Epidemiologists • Strengthen the existing vital registration systems and other health information systems and develop surveillance mechanisms for birth defects • Pilot surveillance projects • HIV, Immunization and maternal, newborn, child and adolescent health activities • Surveillance networks • Potential for synergy and connections

10. Summary Comments • Countries in South-East Asia are poised to further reduce morbidity and mortality among newborns and children in the region, through the development and implementation of birth defect prevention and surveillance efforts. • Efforts in the region can serve as a model of a comprehensive approach to reduce under-5 mortality in support of the MDG 4 and the WHA 63.17. • Some needs in the Region: • Address neonatal mortality • Establish national strategies to address birth defects prevention • Strengthen surveillance to support policy and program efforts

11. Acknowledgements • World Health Organization/Regional Office for South-East Asia • Neena Raina, PhD • Rajesh Mehta, MD • Health Pragmatics, Ltd. • Burke Fishburn, MPP • Carter Consulting, Inc. • International Clearinghouse for Birth Defects Surveillance and Research • Lorenzo Botto, MD • Centers for Disease Control and Prevention (CDC), National Center on Birth Defects and Developmental Disabilities • Joe Sniezek, MD, MPH • Aliki Pappas Weakland, MPH, MSW • Alina L. Flores, MPH, CHES

12. Questions/Discussion

13. Thank you! For more information please contact Centers for Disease Control and Prevention 1600 Clifton Road NE, Atlanta, GA 30333 Telephone: 1-800-CDC-INFO (232-4636)/TTY: 1-888-232-6348 E-mail: cdcinfo@cdc.gov Web: http://www.cdc.gov The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention. National Center on Birth Defects and Developmental Disabilities Division of Birth Defects and Developmental Disabilities