Day 1

1. Day 1 • You receive 2 reports on your desk • The first shows an increased incidence of spina bifida among births in the last 5 years in Virginia. • The second report shows decreasing use of multivitamins among young adults.

2. Neural Tube DefectsWhat do you need to know? In VA, ~175 babies are born each year with an NTD Certain regions have a higher rate Problems include some degree of paralysis or muscle weakness below area of opening, bladder and bowel control issues and hydrocephalus. NTD’s are preventable birth defects and could be reduced by up to 70% if women consumed enough folic acid before and during pregnancy.

3. Types of Neural Tube Defects From missinglink.ucsf.edu • The spinal cord begins as a flat region, which rolls into a tube (the neural tube) 28 days after the baby is conceived. • When the neural tube doesn’t close completely, an NTD develops. • NTDs develop before most women know they are even pregnant.

4. Causes of NTDs • Complex disorder caused by multiple genetic and environmental factors • Known environmental factors include decreased folic acid, maternal insulin dependent diabetes, maternal use of anti-seizure meds • NTDs are also a feature of known genetic syndromes like Trisomy 13 and Trisomy 18

5. Folic Acid Recommendations 1991: The CDC recommended that high risk women plan pregnancies and consume 4,000 micrograms (4 mg) of folic acid daily from the time they begin trying to get pregnant through the first trimester of pregnancy. 1992: The U.S. Public Health Service recommended that all women of childbearing age consume 400 micrograms (0.4 mg) of folic acid daily. 2008: US Preventive Services Task Force recommends women of childbearing age consume 400-800 micrograms (0.4-0.8mg) folic acid daily

6. From Preventing Neural Tube Birth Defects: A Prevention Model and Resource Guide Produced by the Centers for Disease Control, 2002.

7. Sources of Folic Acid Improved dietary habits: Dark leafy green vegetables : 120-160 micrograms/100g Other vegetables: 40-100 micrograms/100g Fruits (particularly citrus): 50-100 micrograms/100g Beans (legumes): 50-300 micrograms/100g Whole grains: 60-120 micrograms/100g Breakfast cereals: 100 - 400 micrograms/100g Fortification of the U.S. food supply FDA mandated enriched cereal-grain products be fortified with 140 micrograms of folic acid per 100g of flour in 1998 (voluntary from 1996-1998). Daily use of folic acid supplements

8. Folic Acid Awareness In 1995, 52% of reproductive women were aware of the term folic acid 25% took a vitamin supplement containing folic acid daily. In 2002, 80% of reproductive women aware of the term folic acid. 20% knew that folic acid could prevent birth defects 31% took a vitamin supplement containing folic acid daily. 40% in 2009. *From March of Dimes Birth Defects Foundation. Folic Acid and the prevention of birth defects: A national survey of pre-pregnancy awareness and behavior among women of childbearing age,1995-2002. May 2002. Publication #31-1677-02.

9. Healthy People 2020 To improve the health and wellbeing of women, infants, children and families Objective MCH-14. Increase the proportion of women of childbearing potential with intake of at least 400 micrograms of folic acid from fortified foods or dietary supplements. Baseline: 23.8 % of non-pregnant females aged 15 to 44 years reported a usual daily total intake of at least 400 μg of folic acid from fortified foods or dietary supplements in 2003–06 Target: 26.2 %  Target-Setting Method: 10 % improvement

10. Healthy People 2020 Objective MCH-15. Reduce the proportion of women of childbearing potential who have low red blood cell folate. Baseline: 24.5 % of non-pregnant females aged 15 to 44 years did have low red blood cell folate concentrations in 2003–06 Target: 22.1 %  Target-Setting Method:10 % improvement

11. Barriers to Folic Acid Consumption Psychosocial Socioeconomic Cultural Financial Familial behaviors and attitudes Individual beliefs and attitudes Before pregnancy

12. VA Health Districts with Highest NTD Rates 2005-2007 Frederick Winchester City THOMAS JEFFERSON Clarke Loudoun Warren Fairfax CENTRAL SHENANDOAH Shenandoah Manassas City Fauquier Rappahannock Prince William Page Rockingham Culpeper Stafford Harrisonburg City Madison CHICKAHOM Highland Fredericksburg City King George Augusta Greene Orange Spotsylvania Staunton City THREE RIVERS Albemarle Westmoreland Caroline Bath Waynesboro City Louisa Richmond Charlottesville City Rockbridge Northumberland Fluvanna Essex Lexington City Nelson King And Queen Alleghany Hanover Lancaster Goochland Buena Vista City King William Accomack Middlesex Amherst Henrico Buckingham Powhatan Botetourt Richmond City New Kent Craig Mathews Cumberland Chesterfield Amelia Lynchburg City James City Roanoke Charles City Gloucester Northampton Appomattox Colonial Heights Buchanan Giles York Roanoke City Hopewell Prince Edward Bedford Williamsburg Petersburg City Campbell Montgomery Nottoway Bland Prince George Dickenson Tazewell Surry Newport News Charlotte Dinwiddie Pulaski Wise Franklin Hampton Isle Of Wight Lunenburg Russell Wythe Norfolk Norton City Floyd Smyth Sussex Pittsylvania Portsmouth Brunswick Washington Henry Carroll Southampton Chesapeake Patrick Danville City South Boston City Greensville Mecklenburg Suffolk City Bristol City Lee Galax City Virginia Beach Scott Franklin City Martinsville City SOUTHSIDE PITTSYLVANIA-DANVILLE Use of Data from VaCARES for Neural Tube Defect Prevention and Education T Causey, MS, J Bodurtha, MD, MPH, H Creswick, MS, Department of Human and Molecular Genetics Discussion The finding that 75% of surveyed women do not consume a daily multivitamin highlights the ongoing need for continued folic acid awareness education in Virginia In 2008, through funding provided by the CDC, plans for a large-scale PSA multivitamin campaign were initiated. VaCARES data was again used to identify the regions in Virginia with the highest rates of NTD from 2005-2007. Health districts with the highest incidence of Latino residents were also identified. Selected areas are highlighted below. A media campaign involving television and radio, in English and Spanish, will be designed. These PSA will encourage daily use of a multivitamin for all women, with emphasis on women ages 18-34. These PSA will focus on a multivitamin with folic acid as part of a healthy lifestyle, rather than as a preconceptional tool. • Introduction • In 1985, Virginia enacted legislation mandating a state birth defects registry • Virginia Congenital Anomalies Reporting and Education System (VaCARES) became a functional registry in 1987 • Seventy eligible hospitals in Virginia now report discharges of children under the age of 2 with a birth defect through the online database VISITS (Virginia Infant Screening and Infant Tracking System), managed by Virginia Department of Health (VDH) • The goal of VaCARES is to gather information on the incidence of birth defects to aid with prevention, improvement of treatment and referrals, and supply of family resource information. • According to recent data from VaCARES, every year in Virginia: • More than 4600 babies are born with a birth defect • Approximately 175 babies are born • with a neural tube defect (NTD), giving • a rate of NTD of 16.4/10,000 livebirths • Certain regions in Virginia have a much • higher rate of NTD Methods In 2005, through funding provided by the CDC, a Folic Acid Supplements Distribution Program was designed to provide a nine month supply of 0.4mg folic acid supplements to women attending designated family planning clinics at health districts across the state. Using data collected from VaCARES, health districts were chosen based upon NTD rates. Additional data regarding proportion of Latino residents was also included. Surveys were distributed to women, in English or Spanish, prior to receiving supplements and after taking the supplements. Surveys gathered information on prior folic acid intake, prior pregnancies with NTD, compliance with daily use of folic acid, and occurrence of NTD in subsequent pregnancies. • Results: • Over 100,000 bottles of folic acid supplements were distributed. A stratified random sample was performed on over 20,000 pre-and post surveys to obtain the final unmatched sample number of 3,057 surveys (1,511 new patient surveys, 1,491 returning patient surveys). While analysis is ongoing, preliminary survey analysis shows: • There was a statistically significant increase in the number of returning patients who reported taking folic acid/ multivitamin versus the number of new patients taking folic acid/multivitamin (22.9% vs. 17.2%, p<0.01). • 71.6% of women surveyed accepted folic acid supplements or multivitamins when offered. • Black women were statistically less likely to report taking folic acid or multivitamins. • Hispanic women were less likely than expected to not receive folic acid supplementation from the family planning clinic (i.e. health department staff were successful in distribution to Hispanic patients). • 75% of women surveyed still are not consuming a multivitamin or folic acid daily. • Folic acid supplementation may also aid in prevention of other birth defects, as well as possibly reducing the risk for prematurity. As birth defects and prematurity are the two leading risk factors for infant mortality in Virginia, it is hoped that folic acid campaigns will have a positive impact on future reduction of fetal and infant mortality rates in Virginia. • Conclusion • Folic acid preventable birth defects still occur in Virginia. • Folic acid messages should promote a healthy lifestyle. • Key References: • Centers for Disease Control and Prevention. Recommendations for the use of folic acid to reduce the number of cases of spina bifida and other neural tube defects. MMWR 1992:RR-14. • March of Dimes Foundation. Improving Preconception Health: Women’s Knowledge and Use of Folic Acid. Survey by The Gallup Organization. 2007 December. • Acknowledgements • We gratefully acknowledge the dedication and partnership of the Virginia Department of Health and the funding opportunity provided by the Centers for Disease Control and Prevention Cooperative agreementNo. U50/CCU321127-04 . Based upon research from the March of Dimes, only 40% of women consume folic acid daily, and only 18% of women know that folic acid can prevent certain birth defects.

13. Pregnancy Risk Assessment Monitoring System Survey

14. Recall your task Address 1. The increased incidence of spina bifida among births in the last 5 years in Virginia. 2. The decreasing use of multivitamins among young adults.

15. Which Public Health Genomic Competencies Apply? • Apply the basic public health sciences to genomic issues and studies and genetic testing, using the genomic vocabulary to attain the goal of disease prevention. • Collaborate with existing and emerging health agencies and organizations, academic, research, private and commercial enterprises, including genomic-related businesses, agencies and organizations and community partnerships to identify and solve genomic-related problems. • Maintain up-to-date knowledge on the development of genetic advances and technologies relevant to his/her specialty or field of expertise and learn the uses of genomics as a tool for achieving public health goals related to his/her field or area of practice.

16. Which essential public health services would you recommend?(See Framework on Next Slide for Ideas)

18. A Potential Action Plan • Public Health Service • Inform, educate and empower people about health issues • Mobilize community partnerships and action to identify and solve health problems You decide to launch a TV and radio campaign about the benefits of multivitamin use among young adults. You also partner with local health departments to give out multivitamins.