March of Dimes Models of Policy & Advocacy

1. March of DimesModels of Policy & Advocacy Promoting Healthy Birth Outcomes October 27, 2009 Amy Mullenix, MSPH, MSW

2. Acknowledgments Thank you to… Anna Bess Brown, MPH Director of Program Services and Public Affairs March of Dimes, North Carolina Chapter Robert Meyer, PhD Director North Carolina Birth Defects Monitoring Program

3. Objectives 1. Identify factors that contribute to birth defects 2. Identify factors that contribute to a reduction in birth defects 3. Understand the importance of full-term pregnancies 4. Learn skills needed to advocate for healthy women and positive birth outcomes 5. Identify collaborative ways to integrate services to promote preconception health 6. Identify important components of a collaborative community action plan to improve birth outcomes

4. Why it matters • 1,066 babies died in 2008 in North Carolina • Prematurity & other birth-related conditions (528) • Birth Defects (232) • Sudden Infant Death Syndrome (136) 39% increase • Unintentional Injuries: motor vehicle, drowning, suffocation, Shaken Baby, falls, poisoning, others • Intentional Injuries: abandonment, homicide • Infant mortality accounts for 67% of child fatality in NC

5. Background & overview • Reducing birth defects and prematurity are central to the missions of March of Dimes and the North Carolina Folic Acid Council • Advocacy efforts and policies have played an important role in impacting health outcomes in these areas • Will give overview of these topics, then discuss advocacy’s role

6. Birth defects • Definition: a structural, functional or chemical abnormality that is present at birth • Second leading cause of infant death and childhood disability • 1 in 33 babies is born with serious birth defects (3%) • In NC, each year more than 3,500 infants are born with major birth defects • Cardiovascular defects are most common (36% of all birth defects) – 1 in 70 infants affected • Central nervous system defects – 1 in 280 affected North Carolina Birth Defects Monitoring Program, 2003

7. Causes of birth defects • The causes of most birth defects are unknown • Some linked to: genetic factors, maternal illnesses, certain medications, environmental influences • Some are entirely preventable: fetal alcohol syndrome, congenital rubella syndrome • Some are preventable in certain cases: neural tube defects

8. Neural tube defects • Conclusive evidence demonstrates that if taken daily before pregnancy, folic acid can prevent up to 70% of NTD cases from occurring • The neural tube is fully formed by the 28th day of pregnancy, before most women know that they are pregnant

9. Neural tube defects • 50% of all pregnancies are unplanned • US Public Health Service recommends that every woman of childbearing age consume 400 mcg of folic acid daily

10. Congenital heart defects • Most common type of birth defect • Studies have found that use of MV containing folic acid is associated with a 60% reduction in risk for congenital heart defects (Hungarian study) and a 25% reduction (Atlanta study) • Czeizel, AE., Eur J Obstet Gynecol Reprod Biol, Vol. 78, 1998. • Botto, LD et al., Am J Epidemiol, Vol. 151, 2000. • Scanlon, KS et al., Epidemiology, Vol. 9, 1998. • American Heart Association recommends that “...[those] that wish to become pregnant should take a multivitamin with folic acid daily.” • Recommendation is endorsed by the American Academy of Pediatrics • Jenkins, KJ et al., Circulation, Vol. 115, 2007.

11. Cleft lip with or without cleft palate • Folic acid deficiency is known to result in facial clefts in rodents; association in humans is unclear and research findings have been inconsistent • Recent Norwegian study found that folic acid intake of > 400mcg/day around conception and during early pregnancy resulted in a 33% reduction in cleft lip with or without cleft palate in humans • Wilcox, AJ et al., British Medical Journal, Vol. 334, 2007.

12. Pre-eclampsia • 1,835 pregnant women who took a daily MV at least once per week prior to conception through 1st trimester • 45% reduction in risk of preeclampsia among MV users, after controlling for confounding factors • If BMI < 25, prepregnancy MV use was associated with a 71% decreased risk of preeclampsia after controlling for confounding factors • No relation between MV use and preeclampsia in overweight women thus suggesting no protective effect • “If our findings are confirmed by others, they highlight a modifiable risk factor for preeclampsia for which there is a relatively inexpensive, safe, and straightforward intervention available.” • Bodnar, LM et al., Am J Epidemiol, 164(5), 2006.

13. Preterm birth • Recent study published in PLoS Medicine (5/09) • Observational study • 38,033 participants in an NIH trial • Singleton pregnancies w/ no complications • Findings: • Folate supplementation for at least one year prior to conception was linked to a 70% decrease in very early preterm deliveries (20 to 28 weeks gestation) and as much as a 50% reduction in early preterm deliveries (28 to 32 weeks) • No effect was found for pregnancy duration of more than 32 weeks or for supplementation lasting less than 1 year prior to conception • Effect was found for patients with and without a history of preterm birth

14. Preterm birth overview • Almost 13% of all births in North Carolina were premature in 2008 • North Carolina ranks in bottom 10 in U.S. • Significant racial disparity

15. Risk factors for preterm birth • Maternal age • Multiples – 5 times more likely to have early birth • Previous preterm birth • Genitourinary infections • Smoking, drug use • Obesity, diabetes, hypertension • Uterine/cervical abnormalities • Stress

16. Maternal race/ethnicity and preterm birth • Mothers who are African American are 2.5 times more likely to have an early birth than other women • Preterm birth/low birthweight is the leading cause of death for African American infants • 18.7% of infants born to non-Hispanic black mothers in 2005 were preterm (versus 12.1% to non-Hispanic white mothers and 12.1% Hispanic) 2004-2006 data, March of Dimes, Peristats

17. Maternal race/ethnicity and preterm birth • Mothers who are African American are 2.5 times more likely to have an early birth than other women • Preterm birth/low birthweight is the leading cause of death for African American infants • 18.7% of infants born to non-Hispanic black mothers in 2005 were preterm (versus 12.1% to non-Hispanic white mothers and 12.1% Hispanic) 2004-2006 data, March of Dimes, Peristats

18. Preterm birth: No easy answers • Complex problem with multiple causes and interactions at play • A syndrome in which different disorders contribute to the initiation and progression of labor • Interactions among biological, genomic and social factors have not been well evaluated • There will be no silver bullet • The most effective interventions may well be BEFORE a woman becomes pregnant UNC Center for Maternal & Infant Health, 2009

19. Prevention of preterm birth • Folic acid supplementation • Smoking cessation • Alcohol/drug use cessation • Weight management • Progesterone therapy • Early and adequate prenatal care

20. Number of Infants Average Cost Infant Condition Total Cost Late Preterm 4,546 $ 8,032 $ 36,515,327 Preterm 6,686 $19,781 $132,255,522 Very Preterm 1,332 $59,320 $ 79,013,727 Very Low Birthweight 1,217 $63,877 $ 77,738,693 Birth Defect 1,622 $34,713 $ 56,304,736 Infant Death 485 $35,327 $17,133,818 Neonatal Death (< 28 days of life) 263 $16,581 $ 4,360,854 At Risk Birth 3,523 $36,976 $130,268,583 Cost of healthy birth = $3,640Medicaid data, North Carolina Division of Medical Assistance, 2009

21. Policy & advocacy • What does policy have to do with health? • What does advocacy have to do with policy? • How can they be used promote healthy birth outcomes?

22. Role of policy

23. Policy 101 • Policy-making is not a rational process. • Policy-making is not always based on data. • If policy-making were rational, we would not need advocacy …lawmakers would objectively survey needs of citizens and act accordingly. • Example: legislative funding for Folic Acid Campaign

24. Advocacy Advocate: a person who speaks or writes in support or defense of a person, cause, etc. (usually followed by of): an advocate of peace. Advocates attempt to change or influence policy by: • Protest and demonstration • Letters and phone calls • Lobbying • Personal relationships

25. Advocacy • What is needed to advocate for healthy birth outcomes? • Information, including financial cost data • Articulate expression • Coordinated efforts • Active voters

26. Advocacy strategies Be Informed & thoroughly prepared  • Most legislators respond to the power of informed opinion, particularly when the opinion is shared by a significant number of his/her constituents • Study the issue and its history – pros and cons • Know your legislator's views and voting record on the issue or similar issues, if possible • Know how it will affect the legislator's district if such information is possible to discern • Know the status of your legislation or issue

27. Advocacy strategies Express your views • Be positive • Be sympathetic to their position or opinion • Remember, public officials are elected to represent the interest of all the public Use meetings, phone calls, and written correspondence

28. Meetings • Arrange a meeting in advance, if possible • During the meeting, be specific, concise and polite. Always thank the legislator for his or her time • Follow up your visit with a thank you note • Invite legislators to visit your program; get them on the agenda as speakers for special events and ask them to give you a legislative update

29. Phone calls • Make a list of the points you wish to convey and tell the legislative assistant why you are calling • When talking with the legislator, be specific, concise and polite • Always thank the legislator for his or her time

30. Written correspondence • Discuss one issue per letter or e-message. Avoid form letters • State your position on the bill by reasons and facts • Request the legislator’s position on the issue • Again, be specific, concise and polite • If referring to a specific bill, use the bill number and the short title in your letter or e-message • Always thank the individual for his/her consideration • Be judicious in the use of e-mail messages

31. Coordinated efforts • No elected official can afford to ignore the weight of public opinion; there is power in numbers • Get others in your community who share your views to contact the public official as well • Join with other advocacy organizations to determine strategies, common language & priorities • Develop clear advocacy agenda for each year/session so that all partners are on the same page

33. Examples of advocacy

34. Examples of advocacy

36. Examples of advocacy in NC • March of Dimes has ongoing advocacy efforts through Public Affairs Advocacy Network (please join!) and an Advocacy Day held each year in the spring • Partners: • Action for Children-North Carolina • North Carolina Alliance for Health • North Carolina Justice Center • Covenant with North Carolina’s Children

37. March of Dimes advocacy 2007 • Increase funding for NC Birth Defects Monitoring Program by $200,000 • Make state buildings smoke-free 2008 • Add cystic fibrosis to newborn screening panel • Make state vehicles & perimeter of state buildings smoke-free • Continue funding statewide folic acid campaign

38. March of Dimes advocacy 2009 • Study a Medicaid waiver to cover interconception care for high-risk women • Fund multivitamin distribution program • Prohibit smoking in public and workplaces • Passed Healthy Youth Act to provide comprehensive sexuality education in public schools

39. Results of advocacy • Multivitamin distribution program • Used data about what worked in western North Carolina • Used advocacy network to make visits, calls, letters • Coordinated effort with broad support and a champion • Resulted in statewide program to start November 1 • Program is example of a collaborative way to integrate services to promote preconception health • All health departments and safety net clinics eligible; can use any clinical setting to distribute free multivitamins to women of childbearing age

40. Community Action Plans • Don’t re-invent the wheel • Local Infant Mortality coalitions • Healthy Carolinians • NC Preconception health strategic plan • Local health departments • Community organizations • Work with existing partners

41. Community Action Plans • Use data to drive decisions • NC State Center for Health Statistics – PRAMS, BRFSS • NC Birth Defects Monitoring Program • Develop a strategic plan and timeline

42. Thanks! Questions… Thoughts… Ideas… Amy Mullenix amullenix@marchofdimes.com 919-424-2158