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1. March of Dimes
Models 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. Cost of healthy birth = $3,640
Medicaid data, North Carolina
Infant
Condition
Number of
Infants
Average
Cost Total Cost
Late Preterm 4,546 $ 8,032 $
36,515,327
Preterm 6,686 $19,781 $132,255,52
2
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 $17,133,81
8
Neonatal Death
(< 28 days of
life)
263 $16,581 $
4,360,854
At Risk Birth 3,523 $36,976 $130,268,58
3
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