March of Dimes

Models of Policy & AdvocacyPromoting Healthy Birth Outcomes

October 27, 2009

Amy Mullenix, MSPH, MSW

AcknowledgmentsThank you to…

Anna Bess Brown, MPHDirector of Program Services and Public AffairsMarch of Dimes, North Carolina Chapter

Robert Meyer, PhDDirectorNorth Carolina Birth Defects Monitoring

Program

Objectives1. Identify factors that contribute to birth defects2. Identify factors that contribute to a reduction in

birth defects3. Understand the importance of full-term

pregnancies4. Learn skills needed to advocate for healthy women

and positive birth outcomes5. Identify collaborative ways to integrate services to

promote preconception health6. Identify important components of a collaborative

community action plan to improve birth outcomes

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

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

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

affectedNorth Carolina Birth Defects Monitoring Program, 2003

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

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

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

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.

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.

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.

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

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

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

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

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

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 pregnantUNC Center for Maternal & Infant Health, 2009

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

Cost of healthy birth = $3,640Medicaid 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 $132,255,522

Very Preterm

1,332 $59,320 $

79,013,727 Very Low

Birthweight1,217 $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

 Division of Medical Assistance, 2009

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?

Role of policy

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

AdvocacyAdvocate: 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

Advocacy• What is needed to

advocate for healthy birth outcomes?– Information,

including financial cost data

– Articulate expression

– Coordinated efforts– Active voters

Advocacy strategiesBe 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

Advocacy strategiesExpress 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

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

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

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

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

Examples of advocacy

Examples of advocacy

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

March of Dimes advocacy2007• Increase funding for NC Birth Defects

Monitoring Program by $200,000• Make state buildings smoke-free2008• Add cystic fibrosis to newborn screening panel• Make state vehicles & perimeter of state

buildings smoke-free • Continue funding statewide folic acid

campaign

March of Dimes advocacy2009• 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

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

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

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

Thanks!Questions…Thoughts…Ideas…

Amy Mullenixamullenix@marchofdimes.com 919-424-2158