Voices for the Voiceless - Association of Perinatal...

Voices for the Voiceless:A Premature Infant

Advocacy Training Guide

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Section One: A Voice for the Voiceless: Advocating for Premature Infants and Their Families• About this Toolkit

Section Two: Preterm Birth in the United States• Prematurity by the Numbers

• Burden of Disease

• Emotional Burden on the Family

• Costs of Premature Birth

Section Three: Access to Care• Need for Public Policy

• Hospital Discharge

• Educating Caregivers

• Continuity of Care

• What You Can Do

Section Four: Working with Health Insurance• Understanding Insurance Coverage - Public and Private Coverage

• Working with the Health Insurance System

• Open Communication with Healthcare Insurers

Section Five: Advocacy• Understand the Issue

• Frame Your Message

• Know Your Audience

• Propose Solutions

• Partner and Collaborate

Section Six: Public Policy• Legislation 101

• Working with Elected Officials

• Testifying at Legislative Hearings

Section Seven: Media• The Basics

• The Pitch

• Delivering Your Message

• Letters to the Editor

• Opinion Pieces

• The Interview

• Ethnic Media

• Internet Media

Section Eight: Useful Talking Points on Prematurity• An Epidemic

• Cost and Consequences of Prematurity

• Late-preterm Birth

• Access to and Continuity of Care

Section Nine: Getting Started - Advocacy Toolbox

• Communication Examples

- Sample Letter of Legislative Introduction

- Sample Issue Letter to Your Legislator and/or Local Elected Official

- Sample Letter to Legislator Regarding Specific Legislation

- Sample Legislative/Committee Testimony

- Sample Letter to Payer

- Sample Opinion/Editorial Piece

- Sample Letter to the Editor

• Additional Ways to Advocate

• Research and Advocacy Resources

Section Ten: Works Cited

Table of Contents

Voices for the Voiceless:A Premature Infant Advocacy Training Guide

Section One:A Voice for the Voiceless:

Advocating for Premature Infants and Their Families

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Premature infants are largely a forgotten

population. There is little in the way of policy that

addresses their ongoing care and support. Additionally,

education is needed to address misconceptions and

improve public awareness about the severity of preterm

birth and the struggles premature babies and their

families face. These most fragile infants cannot speak for

themselves. They are dependent on their parents,

caregivers, healthcare providers, professional advocates

and other supporters to be their voice and to give them

the best possible start in life.

By raising awareness of the issues critical to the health

and well being of premature infants and their families

and influencing public policy at the local, state and national

levels, you can take a leadership role in improving their

lives and health outcomes. You can become community

educators and advocates for positive change in your own

backyard and across your state and nation.

Section One:A Voice for the Voiceless: Advocating for Premature Infants and their Families


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About This Toolkit

This toolkit provides you with information, guidance and resources designed to help you become a

knowledgeable and skilled advocate for premature infants. It is designed to be a resource for people at all

stages of advocacy involvement – from those with a specific area of interest who have several hours per week

to research the issues and take part in activities to those who can only spare an hour or two every few months

to participate in an event, address an issue or challenge or write a letter to their local legislator.

It is intended to give you a high-level overview of the prevalence, severity and issues surrounding prematurity,

as well as tools to get you started in your advocacy efforts. You can then apply the toolkit’s broader information

and advocacy tips to those specific awareness, education, or policy efforts you engage in such as supporting

or opposing a bill or forming an advocacy network to support the families of premature infants.

Use this toolkit now to get started with your advocacy efforts and later to remind yourself of particular topics,

such as the critical components of media communications or how to best prepare for an interview. Whatever

your level of advocacy, know that every effort you make is improving the health and well-being of premature

infants and supporting their families.

Section One: A Voice for the Voiceless: Advocating for Premature Infants and Their Families (continued)


Section two:Preterm Birth in the United States

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Section two:Preterm Birth in the United States

A full-term baby is one born between 37 and 42 weeks of gestation. Prematurity or “preterm birth” is

defined by the AAP Committee on Fetus and Newborn as a birth that occurs before 37 completed weeks

of gestation.1 One preterm birth occurs for a number of reasons, and often the reason remains unknown.

Despite dramatic advancements in healthcare, preterm birth remains a serious problem in the United States

and accounts for a majority of newborn deaths.

Here is the Crisis in numbers:

• In 2006, 1 in 8 babies (12.8% of live births) was born preterm in the United States.2

• Although nearly one in eight babies is born prematurely, most U.S. adults do not consider prematurity

to be a serious public health problem.3

• Between 1996 and 2006, the rate of infants born preterm in the United States increased more than 16%.2

• The increase in premature birth rates in recent years is primarily associated with a rise in late-preterm

births (34-36 weeks gestational age), which have increased 25 percent since 1990 and account for

70 percent of all preterm births. Although multiple births have contributed to this rise, substantial

increases in preterm birth rates, and especially late-preterm rates, have occurred primarily in

singleton births since 1990.4

• In 2005, more than half (55 percent) of all infant deaths in the US occurred to the 2 percent of infants

born very preterm (less than 32 weeks gestation). In addition, infant mortality rates for late-preterm

infants (34-36 weeks gestation) were three times those for term infants (37-41 weeks gestation).5

• During 2006 in the United States, preterm birth rates were highest for black infants (18.3%), followed

by Native Americans (14.1%), Hispanics (12.1%), whites (11.6%) and Asians (10.7%).2

• In the United States (2005), prematurity/low birthweight was the second leading cause of all infant

deaths (during the first year of life) and the leading cause of infant death among black infants.2


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Burden of Disease and Long-term Consequences for Premature Infants

Although prematurity is a major factor contributing to

infant mortality6, premature infants are more likely to

survive than ever before due to advances in medical

technology and treatment.7 Nevertheless, preterm infants

are still at risk for a host of health and developmental

issues that can last into and sometimes beyond childhood.7

Even late-preterm infants, those babies born at 34

through 36 weeks gestational age, have increased

problems with breathing, feeding, temperature

instability and jaundice among several other issues.7

• Preterm babies tend to grow more slowly than term

babies. They also may have problems with their

eyes, ears, breathing, and nervous system.8

• Learning and behavioral problems are more common

in children who were preterm babies.8

• The earlier the baby is born, the greater the chance he

or she will have health problems.8

• However, late-preterm births are still at higher risk

for health and developmental problems compared to

those born full-term.1

• Babies born at 34 through 36 weeks gestational age, have increased problems with breathing,

feeding, temperature instability and jaundice among several other issues compared to full term infants.1

Section Two: Preterm Birth in the United States (continued)


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• Some serious complications of premature birth are.9

- Respiratory distress syndrome: A serious breathing problem.

- Bleeding in the brain: Bleeding in the brain is called intraventricular hemmorhage (IVH). It can cause

pressure in the brain and brain damage.

- Patent ductus arteriosus: A heart problem that is common in premature babies. Untreated, it can

lead to heart failure.

- Necrotizing enterocolitis (NEC): A potentially dangerous intestinal problem.

- Retinopathy of prematurity (ROP): An eye problem that, in severe cases, requires treatment to help

prevent vision loss.

• While some complications of prematurity can be resolved in the days, weeks or months following

birth, many premature infants have medical problems that continue into childhood or permanently.

Premature births may lead to lasting disabilities such as:10

- Blindness

- Cerebral Palsy

- Mental retardation

- Chronic lung disease

- Learning difficulties



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Emotional Burden on the Family

The birth of a healthy baby is a usually a happy and exciting

event for a family. However, a preterm birth places enormous

emotional strain on parents and the entire family.

It can be difficult for parents to bond with their preterm

baby, who may be isolated and hooked up to life support

equipment that limits physical contact. Their baby may have

to stay for weeks or even months in a neonatal facility that

is located many miles away from their home. Complex

healthcare and hospital systems can be intimidating and

daunting for parents to figure out.11

And, even when the baby is discharged and able to come

home, parents may face additional challenges in securing

continued medical care, therapies, and other types

of services their child may need over the course of months

or years to help them develop optimally.11



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Costs of Premature Birth

On top of these emotional stresses, families (even those

with health insurance coverage ) may also face a financial

burden with co-pays, deductibles, and other out-of-pocket

expenses. In addition, there is a significantly higher cost to

the healthcare system and employers for preterm infants.

• In 2005, preterm birth cost the United States at least $26.2 billion, or $51,600 for every infant

born preterm.12

• In 2007, the average medical costs for a preterm baby were more than 10 times as high as they were

for a healthy full-term baby. The costs for a healthy baby from birth to first birthday were $4,551.

For a preterm baby, the costs were $49,033. 13

• Based on data from late-preterm and term infants born in 2004, late-preterm infants have greater

morbidity and total healthcare costs than term infants. The average cost for late-preterm infants in

their first year of life was $38,301 versus $6,156 for full term infants. Late-preterm infants had higher

costs across every type of medical service category compared to full-term infants, including inpatient

hospitalizations, well baby physician office visits, outpatient hospital services, home healthcare

services and prescription drug use.14

• The costs of prematurity also financially impact the family. According to a 2008 analysis by Thomson

Reuters, based on data for infants born in 2005, while health plans paid the majority of total allowed

costs, out-of-pocket expenses were substantial and significantly higher for premature / low birth

weight newborns compared with uncomplicated newborns.13



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Section three:Access to Care

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Section three:Access to Care

Currently, state and federal policy provides

and places more emphasis on care given at the end of life

than the beginning of life. Giving all newborns the best

possible start may help to prevent and address health

complications that impact quality of life and drive up costs

in the healthcare system.

The need for quality care at the beginning of life is even

more critical with premature infants who often require additional, and sometimes long-term, care. Preterm

birth puts infants and their families at risk for poor developmental outcomes and creates an increasing

burden on the health system. Healthcare professionals, family advocates and early interventionists have an

opportunity to advocate for improved services to reduce the incidence and consequences of preterm birth.

Public policymakers – through legislation and regulatory directives – can play an important role in supporting

families as they strive toward improved health and development of their premature infant. A giant step

forward was taken with the passage and signing of the PREEMIE Act, which was enacted in December 2006

and opened the door for additional research and advocacy. Subsequently, in June 2008, the Surgeon General

hosted the first conference to address this “serious, common, and costly public health problem.” At this

conference, experts from the public and private sectors developed an action plan that requires both private

and public resources for broad-based research, capacity building, data systems, creation of interventions,

quality initiatives and a comprehensive communications strategy.

However, even with this progress, providers and caregivers still face many obstacles and challenges in trying to

provide ongoing, optimum care for this fragile population. Many of these challenges, including those outlined

below, could be addressed through public policy at the national and/or state level.


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Access and Continuity of Care Starts at Hospital Discharge

• Currently, there are no standardized procedures for hospital discharge and follow-up care of infants

born prematurely. As a result, babies born prematurely may leave the hospital after birth without adequate

discharge and follow-up care plans in place to ensure they receive appropriate care to address their special

health needs once they are home.15

• Without organized discharge care plans, premature babies may experience critical gaps in healthcare.

These infants require diligent evaluation, monitoring, referral and early return appointments for both post-neonatal

evaluation and continued long-term follow-up care.15

Educating Caregivers

• Due to the significant rates of premature births and the

wide range of health issues that premature infants face, it is

essential that parents of these babies have access to clear

information to assist them in caring for and supporting

their newborns from infancy through childhood.

• Collaborative efforts with hospitals, physicians, parents,

government agencies, advocacy organizations and other

stakeholders are vital to developing and distributing

information to help parents and families understand the

unique health needs of their premature babies.

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Continuity of Care

Once discharged from the hospital, preemies often have ongoing medical needs to contend with, which bring

many additional challenges. These preemies may require special care and instruction on everything from sleep,

to feeding, to respiratory support. This requires providers and caregivers to provide additional support and

services including:

• Coordination of and travel to multiple doctors’

appointments

• Navigation of complex hospital and medical systems

• Obtaining medical care and other services the

newborn may need to continue to develop optimally

• Early intervention services

• Ongoing information and education about health

issues both at hospital discharge and as they arise

What You Can Do

As state and federal budgets tighten, the healthcare system

will become further strained. However, we cannot balance

the budgets on the backs of this fragile population. By not

providing the right care, premature babies will continue to

have higher rates of death, re-hospitalizations and ongoing

medical issues.



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We need to help optimize care instead of creating hurdles.

While each state and circumstance provides its own set

of issues, some of the significant challenges a provider

or parent may encounter include:

• Inadequate healthcare plan support. While there are

superior Preemie Programs through private payers,

many do not recognize late-premature infants as a

subset and therefore do not have the process in place

to create a more comprehensive and seamless process

to provide care.

• Lack of standards and models in place to ensure parents leave the hospital after the baby’s discharge

with all the information needed to care for their premature infants.

• Lack of seamless referrals and quick, easy access to early intervention services ensuring that there

is no gap in care or monitoring of the child’s developmental progress.

• Prior authorization policies that create obstacles to care instead of creating a seamless process. When

a prior authorization requirement usurps a healthcare provider’s prescribing authority or causes

delays in care for patients, the process needs to be reevaluated.

WHILE THERE ARE MANY ADDITIONAL HURDLES AND CHALLENGES THAT A HEALTHCARE PROVIDER

OR PARENT MAY ENCOUNTER AS THEY CARE FOR A PREEMIE, THE ISSUES MENTIONED ABOVE,

AND OTHERS ENCOUNTERED ALONG THE WAY, CAN ALL BE BROUGHT TO LIGHT AND ADDRESSED

THROUGH ADVOCACY.



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Section Four:Working with Health Insurance

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Section Four:Working with Health Insurance

Understanding a premature infant’s condition and healthcare coverage are often the first steps

in advocating for a premature infant. Whether you’re a

parent, provider or healthcare advocate, this section provides

some basics of health insurance coverage options to help

preemies achieve optimum healthcare. Treating high-risk

infants, particularly those babies who are born preterm,

is a huge priority for many health insurers. But it is also

important to advocate for this population to ensure they

have access to available care.

Understanding Insurance Coverage - Public and Private Coverage

Currently the American healthcare system relies on both public and employer-based options to cover a large

percentage of lives. Recently, individual coverage has also become popular for many individuals and families.

This has increased the number of health insurance systems a healthcare provider is likely to encounter on

a day-to-day basis.

Public Health Options

The Centers for Medicare and Medicaid Services (CMS) administers the nation’s public healthcare options

including Medicare, Medicaid and the Children’s Health Insurance Program (CHIP). Public options covering a

premature infant may include Medicaid and the Children’s Health Insurance Program. Not all individuals and

families qualify for a public health insurance option. It is likely, however, that some babies born preterm may

qualify for some form of public assistance or access to state-funded programs.


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• Medicaid: Medicaid is a state-administered program available

to low-income families and individuals who fit into an eligibility

group that is recognized by federal and state law. Each state

sets its own guidelines regarding eligibility and services.

• Children’s Health Insurance Program (CHIP): The CHIP

program helps states provide healthcare coverage to more

than 5 million of the nation’s uninsured children. Jointly

financed by the Federal and State governments, CHIP

is administered by the State with each state determining

its own eligibility requirements. The nation’s commitment

to protecting our future was demonstrated with the

Children’s Health Insurance Program Reauthorization Act

of 2009. This legislation will preserve coverage for the millions of children who rely on CHIP today

and provides the resources for states to reach million of additional uninsured children. 16

Private Health Insurance

Individuals and families often seek coverage by privately funded healthcare insurance. The majority of

enrollees enter into employer-based coverage with a smaller, but rising percentage of enrollees now opting

for individual coverage due to lack of an employer-provided option, pre-existing conditions or cost-savings.

Whether covered by employer-based or individual coverage, private insurance work under two models:

Managed care and Fee-for-service (FFS).

• Managed Care: Managed care plans are health insurance plans that contract with health care providers and

medical facilities to provide care for members at reduced costs. These providers make up the plan’s network.

How much of your care the plan will pay for depends on the network’s rules.17

• Fee-for-service (FFS): A system in which the insurer will either reimburse the group member or pay the provider

directly for each covered medical expense after the expense has been incurred. 17

Section Four: Working with Health Insurance (continued)


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Working with the Health Insurance System

As mentioned previously, a premature infant’s total cost of care is significantly higher than an infant who is

born at full term. Throughout the course of a premature infant’s care, both the family and the physician should

always know what to expect in terms of coverage from the healthcare insurer. Advocates should collaborate

with health insurance to ensure the best health possible for babies born preterm.

Understanding health benefits

Health insurers understand that premature infants are a priority and are placing increased focus within

healthcare plans to protect these fragile babies. To help ensure a successful collaboration with health

insurance, it is important to understand the preemie’s level of benefits. Whether you’re a family member or

the baby’s doctor or nurse, having a good grasp of what is and isn’t covered from the get-go will help ease the

transition from the hospital to primary care setting. To gather this information, family members should consult

with their doctor to contact the healthcare plan or work with a patient account representative to determine

coverage. Also, make sure to ask for any and all documentation and paperwork prior to the outpatient setting

to help keep both the provider and family informed and educated any procedures or treatments received.

Physicians will find that not all health plans provide access to the same treatments and services. This can

vary greatly across private and public plans. All plans do, however, offer a process to help appeal coverage

decisions and provide reimbursement assistance. If a preemie is experiencing difficulty in obtaining coverage

for recommended medications, treatments and/or services, family members should work with the primary

care provider to submit the appropriate paperwork/documentation for review on a case-by-case basis

by the health plan. Physician’s expert opinion can often be the deciding factor to help a baby receive the

recommended care. It is very important to speak up and voice any concerns that will impact the health and

general well-being of this fragile infant population.



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Awareness of available resources

In many cases, by collaborating with health insurance, a preemie will have access to the care and benefits

to which he/she is entitled. If you need to work outside a health insurer to achieve access to care, there are

a number of outside resources available for families and physicians to help ease the process to help your

preemie obtain coverage. These resources may include:

• State Insurance Commissions: provide an additional appeals process for reimbursement issues

• Patient Assistance Programs: Patient assistance programs (PAPs) are programs created by drug

companies to offer free or low-cost drugs to individuals who are unable to pay for their medication.

• High Cost Share Programs

• Non-profit organizations

• Medical societies

Healthcare insurers rely on the voices of their participating physicians and employer groups to garner

feedback on policies that are appropriate for their patient population. Your willingness to highlight the issues

this population faces can help these patients and their families.

To provide recommendations for change, contact the HR representative or professional medical society to

advise them of any issues or gaps in coverage your preemie is experiencing. By collectively voicing your

concerns, organizations can work with health plans to determine the best course of action on how to adapt

care to meet this growing population’s needs.

Opportunities for working in collective and group settings include developing and submitting joint

statements which may include recommended changes in standards of care, support of preventive options

and feedback on changes to current benefits recommendations.



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Open Communication with Healthcare Insurers

You have the power to pursue all available ways to obtain appropriate coverage through health plans for

your patients. Taking charge of the patient’s healthcare needs, being familiar with benefits packages and

communicating with health plans individually, through employers or medical societies, all provide the best

opportunity to obtain coverage of appropriate and necessary medical care for those whom you are advocating.

These tips will help you communicate effectively with health plans:

• Be confident. You have the right to obtain complete information about health benefits. Insurance plans have

customer service representatives and human resource departments there to help both families and providers

understand what services, treatments and medications are covered for each individual. Their job includes

answering questions about benefits.

• Speak clearly and calmly. Remember that your goal is to gain coverage for prescribed or recommended

healthcare options. If you feel you have been misunderstood, restate your request. If at first you don’t succeed,

move up the ladder. If you have discussed your request with the health plan’s customer service representative

and if you are not satisfied with how the issue is being handled, ask to speak to:

- a Supervisor in the Customer Service Department

- the Manager or Director of Customer Service or Member Services

• Know your patient’s benefits. Health insurance can be complex. Be sure you are informed on the policy’s

benefits. They may be explained in the policy handbook or health plan website. Family members and providers

should work together to determine benefits. If something is not clear, ask the health plan’s customer service

representative or employer’s benefits administrator.



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• Document all communications. Keep detailed, written

records of each conversation you have with a healthcare plan.

- Record the date of the conversation and the full name

of the representative.

- Make notes of all information received.

- Keep copies of all written correspondence

• Ask for help. Physicians regularly call or write health

plans to explain why the treatments are needed for a child’s

health. In many cases, employers make decisions about

what will be covered under a health plan. If you’re a family

member, work to educate employers and encourage more appropriate medical coverage decisions by having

physicians communicate directly with the company. Physicians should contact their medical society if they are

experiencing similar issues and concerns.

• Be persistent. A denial is not necessarily the last word. Each health insurance plan may have several levels

of appeal. Ask health plans to reconsider its decision and follow up with the insurance company to make sure

action occurs. It may take several attempts before your appeal reaches the people responsible for establishing

treatment policies.

Although following these suggestions does not guarantee a health plan will cover all healthcare treatments

and services, understanding coverage and benefits will allow you to know that you have done everything you

can to help secure the proper coverage for your preemie.



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Section Five:Advocacy

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Section Five:Advocacy

Getting Started

Advocacy is a way of making sure important messages are heard, and it gives citizens a tool that they can use

to bring about change and improvements. Elected officials, the media and the community itself offer a number

of opportunities to make sure your advocacy efforts hit the target. This chapter outlines the first steps.

Understand the issue - connecting the data with the context

You know the issue: One in eight babies is born preterm in

the United States.2 Between 1996 and 2006, the rate of infants

born preterm in the United States increased more than 16%.2

Many of these babies experience serious health complications

that can impact the rest of their lives. Their care comes at

an enormous cost to the healthcare system.

The challenge is to understand and address the issues behind

the crisis of prematurity in order to communicate effectively

and thus generate the behavioral, environmental, and public

policy changes necessary to reach solutions.

Connecting with state- and community-based partners who

share your interest in addressing the crisis of prematurity will

help you to better address social and public policy. Advocacy

organizations are a great resource to obtain this type of

information. They can be your first point of contact when you

are ready to start talking about your issue, and they can help

you understand current and specific advocacy and policy

Advocacy vs. Lobbying

Advocacy is NOT the same thing as lobbying.

Lobbying is a subset of advocacy that

promotes or opposes specific legislation,

political candidates or ballot initiatives.

Lobbying directly affects legislative and

electoral results. As individual citizens, anyone

can lobby. Some people also lobby as part of

their official work.

Advocacy in the broadest sense promotes

themes, ideas and values, and fosters

dialogue on social and political issues.

Advocacy endorses effective solutions.

Anyone can be an advocate in the broader

sense, and some people choose to get

involved in direct lobbying. Both activities

are crucial efforts to improve healthcare

outcomes for premature infants.


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Section Five: Advocacy (continued)

efforts underway in your community. They can also help you

to identify specific ways you can contribute your time, passion

and talents to the common cause.

The Internet can also be an excellent resource, as are

newspapers, magazines and policy reports. Several sites

on the Web can be helpful in pulling together otherwise

confusing data and policy pieces into forms that are both

understandable and usable in advocacy efforts. When

searching for information and data look for Web sites that are

credible sources of information like health-related professional

organizations (e.g. American Academy of Pediatrics), government Web sites (e.g. Centers for Disease Control)

and non-profit organizations that have a long-standing focus and credibility around the issue (e.g. March of

Dimes). Data and information from these sites should be well referenced and contain the most up-to-date

statistics available. Try to avoid information and Web sites that state simply personal experience and opinion

that may not be based on factual information. See Web site resources in the Advocacy Toolbox section for

additional suggestions.

Frame your message – breaking down the information

Knowing the data and understanding the context is essential, but it is your ability to turn that information into

a powerful message that will make you an effective advocate. Finding a way to frame your message into a few

powerful sentences will help you to articulate and deliver the information with ease. You may be called upon to

deliver your message in a short speech at a single event, in a longer presentation on a radio call-in show or in a

succinct piece of writing. It could even be just a few seconds on television.


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Ask yourself the basic journalism questions: What is the issue? Who is affected? Where is it happening? When

does it happen? What is the impact? Be able to answer those questions in two or three sentences. You should also

answer the “so what” question: why should the public care about this issue? It should be free of jargon and

as understandable as possible to a non-medical audience.

Craft your message into a one-sentence goal that meets the requirements to be a SMART goal.

that is a goal that is:

Specific – avoid leaving room for speculation about what you want

Measurable – identify how you will measure success or failure

Achievable – ensure sufficient infrastructure exists to reach the goal

realistic – define a goal that is feasible within your environment

time-based – establish a timeline for implementation

A SMART goal will help ensure that all stakeholders are communicating concise, consistent and complete information.

Support this SMART goal with drafted key messages and talking points, and try to use the same wording

whenever possible. This will also serve to make the message consistent and increase the effectiveness of your

advocacy. (See Section eight for additional information on prematurity that can be used as a starting point.)

Finally, be descriptive and use examples to support your ideas. Stories from your clinical or personal experiences

will increase your credibility as a uniquely informed and

impassioned messenger. Use pictures, images and graphic

elements to bolster your points when possible. Consider

developing a one-page advocacy tool that includes your

SMART goal, key messages and talking points, supporting

stories and visual aids for distribution to stakeholders, policy

makers and the media. Note: it is important to always have

permission of use for any visuals or other information.

“I always think of the story of the baby in

the stream. As a doctor, I often find myself

downstream, pulling babies out of the

rushing water. But often, by the time they

get to me, it’s too late. What I want to do

is go upstream to stop whoever is putting

them in the river!” - Dr. George Askew


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Know your audience – customizing your message

Are you trying to impact the way elected officials think about

preterm birth? Do you want every man, woman and child in

your community to know about the crisis of prematurity?

What is your proposed solution or specific “ask”?

Identify who is hearing your message, what their interests

are, and then customize your message to your audience. You

will be more persuasive if you know what motivates your

listeners and use the same language they do. For example:

• Elected officials have to store huge amounts of

information and use it in small amounts of time. They

often must speak in sound bites, and usually like easy to

remember facts and numbers. They also care about issues

affecting their constituents, and they respond to brevity,

power of argument and political consequences.

• Parents (including expectant parents in regards to preterm birth) want to know how something affects

their children, and why it matters. They want options for what can be done about it. They like some details

and resources to learn more about an issue, but the wording must be simple, understandable and in their

first language. Parents appreciate a positive, collaborative approach and honesty about an issue.

• The general public needs to have health issues explained in plain language, not medical jargon. When reaching

out to a broad audience, it is often helpful to point out the costs to society of the current situation and the

benefits of change.


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Propose solutions – empowering your audience

Advocacy is not about complaining, but alerting the public to an issue and helping to provide effective

solutions. You may call upon your community leaders to provide more educational information on the

consequences of prematurity, or you may propose an innovative approach to developing a comprehensive

resource tool for parents of preemies. State the problem and offer solid ideas.

Part of your data collection should include finding what was attempted or suggested in the past and determine

why they were not effective or were not adopted. Often an effective solution has already been proposed and just

needs the right advocates to champion the cause.

A solution is a critical part of your message because it empowers your audience to make a difference. Rather

than getting frustrated with one more piece of bad news, your listeners and readers will take away tangible

information to help preterm infants and their families.

Partner and Collaborate – joining efforts

One of the most efficient and effective ways for individuals to advocate for policies and practices affecting

patients is to partner with local, state or federal advocacy organizations. Such organizations provide excellent

opportunities for advocacy. These partnerships are effective because:

• Health advocacy groups know the terrain. They track local, state and federal health issues and

develop resources you can use to make your case.

• Advocacy agencies already have projects underway — you can become active immediately in the

organization’s work.

• Collaboration between many organizations increases the potential for significant impact.


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Many health advocacy organizations perform research in their specialty areas and usually formulate positions

around those issues. Some organizations lobby as part of their advocacy work, while others do not.

You might be surprised about how receptive advocacy organizations, whether they are comprised of individual

members or a coalition of groups, will be to your inquiry. It is common to find advocacy networks looking for

additional, individual advocates like you to work with them on topics of mutual interest. In many cases, your

work will be most effective when yours is not the only voice and you can build from existing efforts.

The Internet also provides opportunities to integrate traditional advocacy outreach with online vehicles.

The Web can help you build relationships with community members who will work side-by-side with you to

communicate and collaborate on your issues. By using some of the following social media tools, you can build

an army of support around prematurity issues in a cost-efficient and effective way.

• Blogs

• Microblogs (such as Twitter)

• Social networking sites (Facebook, MySpace, LinkedIn)

• Video and photo sharing

• Podcasts

• Message Boards

Be sure to understand and abide by all terms and conditions of these sites as they differ for each.

These tools can help start the conversation, expand your issue to a broader audience and personalize

and humanize the issue of prematurity. Social networking sites like Facebook and Twitter, for example,

host several groups dedicated to discussions regarding premature babies.


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Section Six:Public Policy

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Section Six:Public Policy

Legislation 101

Affecting public policy requires that you get involved in the legislative process. You do not need to be an expert

on legislation, but in order to time and direct your efforts strategically; it is helpful to gain a basic understanding

of how a bill is passed. Internet research can help you to identify and familiarize yourself with the legislative

process in your state. For federal public policy, the Library of Congress THOMAS provides an overview of the

legislative information and can help link you to current and past legislation. State specific information can be

found on your legislature’s home page or by contacting your legislator’s office.

While the exact process varies from state to state, here are some of the elements that are common in many states:

• Authoring a bill. The legislative process starts when one legislator authors a bill.

• Committee hearings. The bill is assigned to a committee for its first hearing. The appropriate committee

is determined by the subject area. This committee hearing is an opportunity to give testimony in support or

opposition of the bill.

• When, and if, passed by the committee, the bill will be considered by the house of origin (Senate or House of

Representative, for example). When the house of origin has approved the bill, the other house has to follow the

same procedure, starting with a committee assignment.

• Amendments. If amended in the second house, the bill must return to the house of origin for agreement.

• The Governor. When both houses have approved it, the bill goes to the governor who can sign the bill into

law, allow it to become law without his or her signature or veto it. A governor’s veto can often be overridden

by a defined percentage or number of votes in both legislative chambers.


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Section Six: Public Policy (continued)

Working with Elected Officials

Public officials want to hear from their constituents, but they are usually pressed for time and can be difficult

to access. However, you can accomplish a lot if you are willing to wait or talk to a staff member. There are a few

things you can do to make your representatives aware of the health issues you care most about.

Letters and emails

Letters and emails, especially from constituents, alert elected officials to important issues the public is watching.

Letters should be no longer than one page and be cordial, but firm. E-mails can be slightly shorter, but no less

formal. You want to educate, inform and prioritize. Make sure the representative knows that you are a constituent.

Phone calls

Calls can be very effective and take almost no time. You will likely speak to a staff member or even to an

answering machine. State your concern and ask for action. Write yourself a script beforehand to assure that do

not forget anything, and leave your name, address and a phone number where you can be reached. If you are

referring to a specific piece of legislation, make sure you state the bill number. Be sure to confirm that you are

a constituent and would appreciate a response.

Visits

Legislators like to spend some time with constituents and

will be happy to meet with you if possible. You will likely

find that it is very easy to make an appointment with your

elected official and/or a staff member. It is important to

know that if your meeting is with the staff member and

not the elected official, it is just as meaningful. The staffers

report directly to the officials and are relied upon for key

policy decisions.

On the day of the visit, dress professionally and be prepared

to wait or meet with a staff member. Things come up suddenly

for elected officials, and they may have to send someone in

Policy and Legislation

Policy and legislation are different things, but

often related.

Policy is the general intent of a governing body

or administration, whether governmental or

community-based.

Legislation is a bill that can be signed into binding law.

Working toward providing additional educational

information about premature infants to all parents

can be the governor’s policy.

A bill legally requiring funds to be disbursed to the

Department of Health for the purposes of educating

parents of preemies is legislation.


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Section Six: Public Policy (continued)

their place. Bring materials that you can leave behind for the legislator and the staff members to read and offer to

be their expert contact on these issues. Be upbeat, friendly and persistent in conveying your message.

Testifying at Legislative Hearings

Testifying before a state or local governmental entity is a valuable opportunity to make a compelling and

persuasive case and, ultimately, a chance to gain support for your positions before a wider audience. If you are

unable to attend a hearing in person, you can also submit written testimony that will be added to the record. By

tracking government websites as well as partnering with advocacy groups, you can find out when an issue of

interest to you is up for discussion at a hearing. Below are tips on giving public testimony

• Carefully plan what message you will deliver during your testimony. Consider using your SMART goals and key

messages as a guide. Ask experienced colleagues which messages will most resonate with those in attendance.

• Determine what rules govern the testimony process. For example: Do you have to sign up to speak? How long

will you have to speak? Are you permitted to submit written testimony?

• Be sure to sign in when you arrive so the committee is aware you are in attendance to provide testimony.

• Begin your testimony by identifying yourself, providing your name, where you live (city, county) and any

professional expertise you have relevant to the issue.

• If you are giving testimony alongside your colleague, be sure that each speaker offers unique information and

perspective rather than repeating information that has already been shared.

• Avoid verbally attacking committee members or arguing with your opposition. Instead present yourself as a

credible source of information and assure committee members that you are available to act as a resource to them

as they make decisions.

• If it is permitted by committee rules, prepare a written version of your testimony and provide copies to each

member of the committee. Add your full contact information to your written testimony in case committee

members have questions later.


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Section Seven:Media

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Section Seven:Media

Of all the tools available to you to deliver your message,

the media can be an extremely powerful one if you know

how to use it.

Identify the media outlets serving the communities and

audiences you want to reach and single out the reporters

covering the issues you care about. Then introduce yourself

and establish a relationship with them.

The Basics

A letter to reporters and editors introducing yourself as a

resource for certain health issues will open the first door.

Make yourself available for quotes and information on

deadlines, and you may be added to the reporters’ list of

experts to call. Give reporters all your contact information

and make sure to return their calls promptly – within 15

minutes. Otherwise, they will call someone else.

Many times advocates want to start with major national newspapers, but smaller editions can have a larger

impact. Local papers, weeklies and freebies are often easier to access and can have a wide readership. Look

for articles on your topic, and note the name of the reporter covering the story.


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Section Seven: Media (continued)

Watch for papers that accept guest editorials or opinion-editorials (“op-eds”). Have some of your writing on hand

for quick deadlines.

Keep track of TV stations, programs and reporters that cover health-related topics and get in contact with them

proactively. Ask them to cover your issue and suggest story angles.

Talk radio often covers topics related to health. Listen to shows covering your issue and then write or call the show.

You can also write or call the station and offer yourself as an expert. And if you’re part of a larger campaign, keep in

mind that radio stations usually have free time allotted for pre-recorded Public Service Announcements (PSAs).

Keep track of stations, programs and reporters that cover health topics and get in contact with them proactively.

Ask them to cover your issue and suggest story angles.

the Pitch

Media outlets serve critical functions as forums for debate and public dialogue, but they are also businesses

and need to attract an audience. In short:

• The media like: broadly appealing stories; controversial issues; accurate information; experts; and novel

issues and approaches (often referred to as “the hook”).

• The media dislike: old or redundant stories they have already covered or that have been covered by their

competitors; inaccuracies; persistence after a story has been rejected; jargon.

• Reporters like: timely responses to their queries; clear language; experts; sound bites; human interest stories;

courtesy.

• Reporters dislike: inaccurate data; being called repeatedly when on a deadline; slow response time to a

request; rudeness.


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Delivering Your Message

Once you are in the door, remember these three basic rules to make sure your message is accurately reflected

in the story, editorial, column or interview.

Be positive. Always inject hope and solutions and descriptions of the issue. You are advocating for ideas

designed to inspire change and help premature infants and families, not make people feel worse.

Be stats savvy. Well-used numbers can support your message.

Avoid jargon. The general public will not understand medical terminology, and a non-expert reporter may

confuse unexplained labels. Use simple language where you can and explain what you mean when you must

use technical terms. Communicate in simple statements that help people know what to do with what you

have told them.

Letters to the Editor

This is one of the quickest and most accessible ways to get your issue out to the public through the media.

Letters to the Editor should be timely, topical, succinct and in response to something in the paper. If you are

responding to an article, send your letter soon after the piece appears in the paper, preferably within 1-2 days.

Short letters are more likely to be published than longer ones. Check with your newspaper about the word

limit - if you stick to their length, you will have a better chance of being published. Be sure to keep the tone

objective and the content focused on information. Include facts, if possible, and reference them, and make

sure to include your name and degree (e.g. MD, RN, MPH, etc.) along with your contact information. Do not be

discouraged if your piece is not published. You can submit similar letters to multiple sources and future pieces

to newspapers that may not have published your piece the first time. It is likely that, with persistence, your

voice will be heard.


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Opinion Pieces

An opinion piece is one of the best ways to gain credible visibility. When writing, state your conclusion first,

make your strongest point up front, and then make your case or back-filling with the facts. Focus on one issue

or idea and write 750 double-spaced words or less (fewer is always better). You can check with your local

newspaper on the word limit. Include a brief bio, along with your phone number, email address and mailing

address at the bottom.

the Interview

Whether you schedule an informal chat over the phone or give a live interview in a TV studio, your number one

interview goal is to communicate your message. These tips will help you deliver that message and capitalize

on your credibility.

Before The Interview

• Know exactly what the interview is about. Do your homework and come prepared. You do not want to be

surprised by any questions.

• Be punctual. Reporters work on deadlines, radio shows start on time and TV spots are non-negotiable. If you

must be late, call as far ahead as possible and offer to reschedule if they cannot accommodate your schedule.

You may miss that particular opportunity, but at least you will not alienate the contact.

• Be flexible. They may also have to change times on you. You likely have a very busy schedule and should

certainly communicate that fact, but sometimes things really do come up. It will also help you stay positive in

the interview if you accept surprises calmly.

• Be confident and upbeat. Remember that you are the educated advocate! The more proactive and energetic

you sound, the more people you will win over to your cause.

• Send some background materials in advance of the interview. You can help reporters with their research

and focus them on issues you think are important to explore in the interview.


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During all interviews

• You should have one central assertion you will make before the end of the interview - Single Overriding

Communication Objective (SOCO).

• Keep your SOCO in mind and plan ahead for different ways you can get it across. Perhaps it fits in a personal story,

or you have a powerful statistic to quote. Your SOCO gives you an agenda and some control over the content of the

interview. It will also help you appear knowledgeable and organized.

• “Bridge” questions to highlight what you find important. Bridging means building smooth transitions from a

question on one topic to another topic. If you want to discuss the positive aspects of a program but a reporter asks you

about its faults, smile and point out that the program has benefits that far outweigh the faults. Discuss the benefits

briefly and stick to your SOCO.

• Don’t speculate. Reporters and interviewers often begin questions with “Hypothetically...” This is dangerous territory.

Simply state that you do not wish to speculate, and then provide facts regarding the topic mentioned in the question.

• Do not fall victim to “off the record.” There is no such thing. All interactions with interviewers and print reporters

could wind up in the newspaper or on TV. Choose your words carefully. Do not repeat negative statements or

questions asked if you disagree with them. They could easily be edited to become your quote or make you sound

defensive. Instead, simply state what you want to say, “Actually, receiving additional information and education about

caring for a preemie at hospital discharge is very helpful for parents.”

• Do not say “no comment.” It sounds like you are trying to hide something. It is perfectly acceptable to admit that you

do not know the answer. Simply say, “I’m sorry I don’t have that information with me at the moment, but I can get it to

you” (if you can).

• Avoid jargon. Most people are unfamiliar with technical medical terminology. Spell out acronyms and use common

terms for medical conditions. Speak as simply as you can to assure that your message is received.

• Pause before responding, or ask for clarification, whenever needed. It is best to understand the question. If you are

not sure, say, “I want to make sure I understand your question, could you repeat (or rephrase) that?” It buys you time

and hopefully helps to clarify the line of questioning.


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During Radio and TV Spots

• Be succinct. Remember to KISS—Keep It Short and Simple.

Responses should be 20 seconds or shorter. This sounds like no

time at all, but you can actually fit a lot of information into 20

seconds. Speak clearly and use simple language. Practice some

phrases ahead of time about your key messages, and they will

sound better. Your key messages may be picked up after the

interview to be used as sound bites, teasing the interview before

it is aired, or to give a short synopsis of what was said for replay

purposes. Make sure the key message is to-the-point and clearly

states your purpose.

• Look at the interviewer, not the camera or broadcast

equipment. You will look and feel more natural, and you will avoid looking or sounding nervous. Speak as you would

to a colleague – professional, but relaxed.

• Choose your TV wardrobe carefully. Don’t wear patterns, especially stripes. Where appropriate, wear your lab coat

– it highlights your medical credentials for viewers. Men should wear dark suits and a blue shirt; women should avoid

all-black or all-white outfits. Avoid wearing anything shiny that can catch the light. If you are unsure, ask the camera

operators or interviewer if what you are wearing will read well on video. Avoid noisy jewelry that could be picked up

on audio.

• Do not refer to notes or other papers on camera. The rustling is distracting and it will make you appear nervous.

Memorize a few figures, and just be yourself.


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Ethnic Media: Low tech, High Touch

A communications plan is not complete or effective without outreach to ethnic media outlets.

According to a 2005 study by America New Media (NAM) – the first and largest collaboration of ethnic news

organization in the nation – 45 percent of all African American, Hispanic, Asian American, Native American and Arab

American adults prefer ethnic television, radio or newspapers to their mainstream counterparts.18

While many ethnic media outlets are lower in circulation, they are high on impact with their niche population groups where

they have earned added trust. Connecting with ethnic media results in increased credibility in that particular audience.

Below are a few tips on working with ethnic media:

• Identify ethnic media news organizations in your area and build relationships with them. Find ways to partner with them.

• Consider contributing a regular column on your issue, even if it is an advertorial.

• Where possible, emphasize the specific impact the issue has on the ethnic community.

• Provide credible spokespeople and visuals from the relevant ethnic group. Smaller ethnic media outlets have limited

resources for newsgathering.

• Use ethnic-owned media distribution services - BlackPRWire, HispanicPRWire, AsianPRWire, etc.

• Get to know the key ethnic media for your target publics.

• If translating materials, be sure to test them first to ensure the messages have been translated accurately.

• Once relationships are established, communicate regularly, not just when you have news to pitch. Learn who covers

healthcare.

• Don’t rely on e-mail alone to communicate. Use the phone and fax and determine the best time to reach reporters

and editors.

• Remember that ethnic media provide a consumer guide to audiences trying to navigate different cultures, and

customize your stories to that format.

• Identify advocates and other healthcare providers or opinion leaders who share the same background or ethnicity as

the audience targeted by the media outlet.


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Internet Media

The Internet has surpassed all other media except television as the main source for national and

international news.” December 23, 2008 Pew Research Center for People and the Press.

The Internet may well be the most utilized tool in media

relations today. It allows you to research media outlets and

reporters, search online media sites for past articles and

breaking news stories, as well as visit websites and blogs

relevant to the issues you are addressing.

Blogs can be a useful tool for organizations that want to

engage the public in a debate about their issues. They provide

a forum to share your views and engage in public debate. If

you are thinking about starting a blog, pick a niche topic, like

prematurity, where you can become a credible and enthusiastic

source that responds to critical issues.

In addition, blogs are fast becoming research tools and sources

of information for traditional media. Many traditional news

outlets host blogs on their websites, allowing the public to weigh in on the topics they cover and their reporting

of the issues. Finally, blogs are also helpful as a tool to monitor what both supporters and opponents are saying

and thinking about your issue.

You may also want to consider highlighting your issue to bloggers who are well established, have a large following,

and have shown an interest in your general area of interest, such as infant health.


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Section eight:Useful Talking Points on Prematurity


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Section Eight:Useful Talking Points on Prematurity

Framing the prematurity issue, refer to the following

points as a resource for your use in communicating and

drafting talking points across your advocacy efforts.

• An Epidemic

• Cost and Consequences of Prematurity

• Late-preterm Birth

• Access to Care and Continuity of Care

An Epidemic

• Prematurity is a serious epidemic in the United States.

Education is needed at the national, state and local

levels to raise awareness for this public health problem.

• Prematurity rates have risen across the country.

In the 10-year period from 1996 to 2006, the rate of prematurity increased by more than 16%. In 2006 alone, 1 in 8

babies was born preterm.2

• The increase in premature birth rates in recent years is primarily associated with a rise in late-preterm births (34-36

weeks gestational age), which have increased 25 percent since 1990 and account for 70 percent of all preterm births.4

• Preemie issues are prevalent across the country. The March of Dimes released prematurity report cards in 2008 and

2009 that graded each individual state. The United States earned only a “D” and not one state received an “A” grade.19


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Section Eight: Useful Talking Points on Prematurity (continued)

Cost and Consequences of Prematurity

• Preterm birth is a serious health problem that costs the United States more than $26 billon every year, according to

the Institute of Medicine in a 2006 report.12

• In 2005, more than half of all infant deaths in the US occurred in babies born earlier than 32 weeks. In addition,

the infant death rate for babies born between 34 and 36 weeks was three times higher than that of babies born after

37 weeks.5

• A baby born weighing less than 3 pounds, 5 ounces has a 30 to 50 percent greater chance of being rehospitalized

during the first year of life than does a term infant of normal birthweight.20

• Medical costs for a premature baby are much greater than they are for a healthy newborn. The costs associated

with premature infants are more than 10 times higher than the average newborn.21

• Premature infants are at increased risk for mental retardation, vision and hearing impairment, chronic lung disease

and other developmental problems.10

• Premature birth touches everyone. The emotional costs for families can be devastating and life-changing.22

Late-preterm Birth

• Although there has been significant attention focused on neonatal intensive care for extremely preterm infants,

little attention has been given to the majority of preterm infants – those born at 34 through 36 weeks gestational

age (late preterm). Even though these late-preterm infants may appear larger in size, they are still more vulnerable

to complications and disabilities than full-term infants.1

• Late-preterm infants have greater morbidity and total healthcare costs than term infants, and these differences

persist throughout the first year of life.14

• Late-preterm infants have higher rates of hospital readmission during the neonatal period than do term infants.1


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Section Eight: Useful Talking Points on Prematurity (continued)

Access to and Continuity of Care

• The transition from hospital to home is marked by

moments of excitement, joy, anxiety, fear, uncertainty, and

even depression. Parents who have spent time learning

about their baby’s care before discharge tend to feel less

apprehensive about caring for their baby at home, but

they too may experience a flood of new fears and face

overwhelming responsibilities.23

• Although there is growing evidence that late-preterm

infants are at increased risk for morbidity and mortality

compared to full-term infants, late-preterm infants may not be

identified or managed any differently than full-term infants.1

• There are no standardized procedures for hospital

discharge and follow-up care of infants born premature.

As a result, babies born premature may leave the hospital

after birth without adequate discharge and follow-up care

plans in place to ensure they receive appropriate care to

address their specific health needs once they are home.15

• Preterm infants need access to preventive care. Specialized care includes screening tests, immunizations

and preventive treatments that can help protect and reduce the incidence of serious infection.


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Section nine:Getting Started - Advocacy Toolbox

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SAMPLE

Section Nine:Getting Started - Advocacy Toolbox


Policy Samples

SAMPLE LETTER OF LEGISLATIVE INTRODUCTION

The Honorable (Name of Legislator)

Member of the Senate

State Capitol, Room (room number)

City, State, Zip Code

Dear (title of legislator):

I am a (physician, patient advocate, concerned parent, etc.) in your district with (name of your public practice/hospital/

organization/coalition if you want to include this), who has (practiced/worked/lived) in our community for more than [number]

years.

According to the March of Dimes, preterm birth is a growing national epidemic that affects 1 in 8 babies born in the United

States – a 16 percent increase from a decade ago. As an elected leader, you will be faced with many health-related legislative

issues associated with preterm birth and overall infant wellness. As a (practice area, specialist, parent, patient advocate), I would

like to offer to be a resource to you on health and wellness issues related to this critical health problem. I am also a member of

(professional society name), the (leading professional association) in (the state or nation), dedicated to (mission of the group).

I would welcome the opportunity to talk with you from time to time about issues relating to preterm birth and infant health and

will contact your office with information. In addition, please feel free to contact me directly at any time when I might be of help

to you in understanding issues surrounding preterm birth in (name of state).

I hope that you will continue to make the health and wellness of babies in (state) priority. Thank you for your service to the

citizens of our community.

Sincerely,

(Your Name)

(Your contact information)

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Section Nine: Getting Started - Advocacy Toolbox (continued)


SAMPLE

SAMPLE ISSUE LETTER TO YOUR LEGISLATOR AND/OR LOCAL ELECTED OFFICIAL

The Honorable (Name of Legislator)




Dear (title of legislator):

Many (state name) families are facing a growing crisis that is impacting the health of our children and driving up healthcare

costs – preterm birth.

As a (physician, nurse, parent, advocate, etc.) I (see, understand firsthand) the devastating reality of preterm birth. In 2005, more

than half of all infant deaths in the US occurred in babies born earlier than 32 weeks.1 And the medical costs for these premature

babies are much greater than they are for a healthy newborn. The costs associated with premature infants are more than 10

times higher than the average newborn.2

Use this paragraph to frame the issue using information and statistics pertinent to the specific issue and location. View the final

section in this guide titled “Resources” to find additional content and information that may be useful here.

To successfully address preterm birth, collaboration is critical. Premature Infants have multiple health needs and deserve

the same standard of care across all hospitals throughout the United States. For babies born premature, improved hospital

discharge and follow-up care management is critical to maintaining continuity of care from the hospital and into the home.

As one of your constituents, I rank the fight against preterm birth as one of my top voting priorities. I urge you to do everything

within your power to make important resources available to communities and families to address this crisis. Together, we can

work to make a difference in the health of preterm babies. I have enclosed some educational materials for you and would be

happy to speak with you or a member of your staff concerning this issue. (Insert information on specific legislation if there is

some and you want to refer to it.)

Thank you for your continued service to our community and your efforts to improve the health and wellness of preterm babies.

Sincerely,

(Your Name, title)


1 National Vital Statistics Reports, Vol 57, Nov 2, July 30, 2008.2 About Prematurity: The Cost to Business. March of Dimes Web site. Available at: http://www.marchofdimes.com/prematurity/index_about_15349.asp.

Accessed February 11, 2010.

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SAMPLE

SAMPLE LETTER TO LEGISLATOR REGARDING SPECIFIC LEGISLATION

The Honorable (name of legislator)




Dear Senator (name of legislator),

I recently became aware of Senate Bill (number), and I am writing to voice my support/concern because (state what the bill does

and include your opinion).

(Emphasize how the bill affects people and use your own experience.)

(State what you oppose or support and particular concerns or ways the bills helps your constituents.)

(If you know the legislator’s voting record on related issues, let him/her know you approve or disapprove and why.)

Please oppose/support this legislation as it is now drafted and let me know if I can be of any assistance in this matter.

Sincerely,

(Your Name)



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SAMPLE

SAMPLE LEGISLATIVE/COMMITTEE TESTIMONY

A good testimony is measured, factual, and straightforward. It should also give the listeners action items and a

‘take-away’ message. Urge listeners to take certain steps or focus on a particular issue. The length can depend

on the meeting, and when you are invited you will likely be told how much time you’ll have. Some committees

hold work sessions, where background about an issue is presented in an educational format. More commonly,

committee hearings are about particular bills, and legislators are looking for both education on the issue, and

opinions about the proposed legislation addressing the issue.

Sample Testimony Distinguished members of the committee, thank you for the opportunity to speak with all of you today in support of (Senate /

House Bill # ____), which calls for the development and distribution of critical information for parents of premature infants. This

information will educate parents about critical issues pertaining to their babies’ health, including:

[LIST]

Premature infants are a vulnerable and costly population in [area]. One-third of all infant deaths are linked to prematurity. 1

Premature infants have higher risks for many health and developmental issues. In 2007, the average medical costs for a preterm

baby were more than 10 times as high as they were for a healthy full-term baby. The costs for a healthy baby from birth to first

birthday were $4,551. For a preterm baby, the costs were $49,033.2 (View the final section in this guide titled “Resources” to find

additional content and information that may be useful here.)

By supporting (House/Senate bill number #), you will help to provide parents with a better understanding of the unique needs

of their own premature baby and to make informed decisions about their baby’s special healthcare needs. Supporting these

parents can help to improve the quality of healthcare preterm babies receive early in life, which could lead to better long-term

outcomes and reduced costs associated with prematurity.

We need to work together to support preterm infants and their families. I encourage the Legislature to seriously consider this

issue during the coming year. You have the opportunity to make a difference in the health of preterm infants by providing their

parents with critical information. You can help them learn how to care for and protect their fragile infants and access helpful

resources in their community to support their families through the often stressful experience of a preterm birth.

I sincerely hope that you will join with us in the fight against this worsening crisis. Through this bill, we have an opportunity to

work together to create positive change for our state’s babies who are born too early.

1 National Vital Statistics Reports, Vol 57, Nov 2, July 30, 2008.2 Reuters T. The Cost of Prematurity and Complicated Deliveries to U.S. Employers. March of Dimes Web site. 2009.

Available at http://www.marchofdimes.com/prematurity/index_about_55353.asp. Accessed February 11, 2010.


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SAMPLE

SAMPLE LETTER TO HEALTH INSURER

DateFirst Name, Middle, Last, Credentials if applicableOrganizationAddressCity, State Zip

Dear Salutation, Last name:

I am writing as a [provider, parent, member of coalition, organization, provide a one to two sentence background on

organization], to address your current policy on treatment for preterm infants, and in particular late-preterm infants.

As you may know, late preterm infants are typically healthier than very preterm infants, but have elevated risks for potentially

serious health problems when compared to term infants.1 As an advocate for preemies, it is imperative that these patients, no

matter how small, receive appropriate access to medically necessary care from their providers.

In particular, I am concerned about the continuity of care for late-preterm infants. As noted in the 2007 Pediatrics Journal Article

“Late-Preterm Infants: A Population at Risk” , although there has been significant attention focused on neonatal intensive

care for extremely preterm infants, little attention has been given to the majority of late-preterm infants born at 34 through

36 weeks gestational age. Even though these late-preterm infants may appear larger in size, they are still more vulnerable to

complications and disabilities than full-term infants.2 Babies born premature, include late-preterm infants, are at risk for a host

of health and developmental issues that can last into and sometimes beyond childhood.3

These medical challenges are recognized by the sheer ongoing costs accrued by this population. The average cost for late-

preterm infants in their first year of life was $38,301 versus $6,156 for full-term infants. Late-preterm infants had higher costs

across every type of medical service category compared to full-term infants, including inpatient hospitalizations, well-baby

physician visits, outpatient hospital services, home healthcare services and prescription drug use.4

As evidenced by this research, and recognition of the medical needs of this population, I hope you will continue to evaluate and

reevaluate the care to which this population has access. By ensuring all preterm infants have access to needed care, we hope to

continue to support the best possible outcomes for this population.

I can be reached at the following to provide any additional information necessary. Phone: Email:

Thank you for your prompt attention to this matter.

Sincerely,

(Your Name)


1 Late Preterm Birth: Every Week Counts. March of Dimes Web site. 2010. Available at: http://www.marchofdimes.com/files/MP_Late_Preterm_Birth-Every_Week_Matters_3-24-06.pdf Accessed February 11, 20102 Engle WA, Tomashek KM, Wallman C and the Committee on Fetus and Newborn. “Late-Preterm Infants: A Population at Risk. Pediatrics 2007; 120; 139-14013 Institute of Medicine. Preterm Birth: Causes, Consequences, and Prevention. Washington, DC: National Academies Press; 20064 McLaurin KK, Hall CB, Jackson EA, Owens OV and Mahadevia PJ. Persistence of Morbidity and Cost Difference Between Late-Preterm and Term Infants During the

First Year of Life. Pediatrics. 2009; 123:653-659


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SAMPLE

MEDIA SAMPLES : OPINION/EDITORIAL PIECE

The birth of a baby is normally an exciting event and happy time for a family. Yet, when things go wrong and a baby is born too

early, the time following birth can be devastating, stressful and uncertain.

Prematurity – or preterm birth – is a birth that occurs before 37 weeks of gestation.1 Babies who are born preterm are at risk for

many health complications that can be both serious and permanent. The earlier the baby is born, the higher the risk and the

more serious the health consequences tend to be.

Even with the advances of modern medicine, preterm birth remains a serious problem in the United States. More than half of

all infant deaths in the United States occur in babies born earlier than 32 weeks. 2 According to the March of Dimes, in 2006, 1 in

8 babies (12.8% of live births) was born preterm in the United States. These numbers indicate a 16% growth in the number of

preterm births from a decade earlier.

As a (healthcare provider, patient advocate, parent of a preterm infant), I (see, understand first hand) the real anguish of

parents who experience a preterm birth. Parents must quickly learn how to negotiate a complicated healthcare and hospital

system, often at a facility that is far from their home. Once they finally bring their baby home, ongoing medical care and services

to address any remaining or long-term health issues often needs to be coordinated. Add in the financial stresses of copayments,

deductibles, and other out-of-pocket expenses related to their baby’s healthcare, and you can see how preterm birth places

enormous stress on a family.

These parents are looking for guidance or some sort of magical cure to make their child healthy and remove the stresses on

their family. While I would love to say that there is a silver bullet to cure the crisis of preterm birth, unfortunately, there is not.

The numbers are staggering; but, how do we combat this tragedy? How do we help to give preterm babies the best possible

start to life? We need to work together to offer help and resources for these babies and their families.

(This is the place where you insert your proposed solution from your perspective as a provider, parent, or patient advocate –

whether it’s working with your local coalition, supporting a piece of legislation, advocating for reimbursement of medicines to

help preterm babies, stronger support systems for families, etc.)

Working together, we can begin to turn this crisis around and give preterm babies the best possible beginning in life.

(Your Name)

(Your Address) *

(Your Daytime Phone Number) *

* Newspapers require an address and daytime number for anyone who submits an op-ed for verification purposes. Only your name and city will be published with the op-ed.

1 Engle WA, Tomashek KM, Wallman C, Committee on Fetus and Newborn. “Late-Preterm” Infants: A Population at Risk. Pediatrics. 2007;120:1390-1401.2 National Center for Health Statistics final natality data. March of Dimes Web site. Available at: www.marchofdimes.com/peristats. Accessed February 11, 2010


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SAMPLE

SAMPLE LETTER TO THE EDITOR

Dear (Editor’s Name):

The crisis of preterm birth in the United States is not going away. In fact, it’s gotten worse. According to the March of Dimes,

between 1996 and 2006, the rate of infants born preterm in the United States increased more than 16%. In 2006, one in 8 babies

was born preterm.

As a (provider, parent, patient advocate, etc.) I see first-hand the devastating reality of these numbers. These babies often

face very serious health complications, some of which can impact the rest of their lives. Additionally, preterm birth places an

enormous emotional burden on the families and drives up costs to the healthcare system.

(This is where you can insert information specific to your efforts to address preterm birth. For example, you may reference your

involvement with a specific organization your support of a specific bill, or mention a specific solution such as the need to ensure

that children born preterm are screened periodically for developmental delays that may emerge long after hospital discharge.

View the final section in this guide titled “Resources” to find additional content and information that may be useful here.)

We must work together to address the crisis of preterm birth.

(Your Name)

(Your Address) *

(Your Daytime Phone Number) *

* Newspapers require an address and daytime number for anyone who submits a letter to the editor for verification purposes. Only your name and city will be published with the letter.


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54

Additional Ways to Advocate

There are many alternatives to engaging in media and legislative advocacy. You can fulfill your role as an active

advocate by participating in any of the following:

• Educate others about social policy issues related

to prematurity and advocacy by attending advocacy

trainings and coordinating trainings for colleagues and

your community.

• Public Engagement – Materials and information on

prematurity can be displayed and distributed in various

locations throughout your community such as doctors’

offices, health clinics, community centers and clubs

and parents’ organizations.

• Other ways to advocate can include educating

about issues important to prematurity and

staying informed about the issues by signing-up for

e-alerts and newsletters through health advocacy

organization websites, watching the news and

attending community meetings.

• Find out about how your local hospital Neonatal Intensive Care Unit (NICU) and/or early intervention programs

support families of preterm infants.

• Contact your state child advocacy organization or state department of health to find out how your state is

currently supporting families of preterm infants, including your state’s definition of eligibility for early intervention

services under IDEA-Part C. If there are gaps in service or gaps in eligibility for services, advocate for greater

attention to these issues by proposing some of the policy recommendations listed above.


Section nine: Getting Started - Advocacy Toolbox (continued)

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RESEARCH AND ADVOCACY RESOURCES

Additional resources

American Academy of Pediatrics

www.aap.org

Professional association committed to attainment of

optimal physical, mental and social health and well-

being for all infants, children, adolescents and young

adults. Recently released policy on supporting families

after NICU discharge.

Association of Women’s Health, Obstetric and Neonatal Nurses (AWHONN)

www.awhonn.org

AWHONN provides professional resources and support

to empower nurses to provide superior evidence-based

care to newborns and to women throughout their

lifespan.

Healthy Mothers Healthy Babies Coalition (HMHB)

www.hmhb.org

A recognized leader and resource in maternal and child

health, reaching an estimated 10 million healthcare

professionals, parents, and policy makers through

its membership of over 100 local, state and national

organizations.

Healthy People 2010

www.healthypeople.gov

Provides national health goals, relevant statistics, and

background on maternal and child health issues, as well

as links to community plans and activities designed to

address the goals.

KIDS COUNT

www.aecf.org/kidscount/data.htm

Statewide and local statistics on health indicators,

including preterm birth.

Legislative search

www.thomas.gov

Library of Congress search service for federal legislation.

March of Dimes

www.marchofdimes.com

Prematurity Awareness Month is sponsored by the

March of Dimes. Local awareness events are scheduled

throughout the country. Included is information about

these events, as well as general information about

preterm birth, preventive and advocacy efforts.



http://www.aap.org/

http://www.awhonn.org/awhonn/

http://www.hmhb.org/

http://www.healthypeople.gov/

http://datacenter.kidscount.org/

http://www.thomas.gov/

http://www.marchofdimes.com/

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RESEARCH AND ADVOCACY RESOURCES

Additional Resources (continued)

Mothers of Supertwins (MOST)/Preemie Care

www.mostonline.org

MOST is a community of families, volunteers

and professionals and is the leading national

providers of support, education and research

in high-order multiple births.

PreemieCare is a non-profit organization dedicated

to supporting families of infants born preterm

through education, support and resources.

National Early Childhood TA Center - NECTAC

www.nectac.org

Technical assistance and clearinghouse on IDEA

Part C – Early Intervention programs for infants

and toddlers.

Zero to Three

www.zerotothree.org

A national nonprofit organization that informs, trains

and supports professionals, policymakers and parents in

their efforts to improve the lives of infants and toddlers.

Zero to Three Policy Network Site

capwiz.com/zerotothree/issues/bills

Track status of legislation relevant to preterm infants



http://www.mostonline.org/

http://www.nectac.org/

http://www.zerotothree.org/site/PageServer

http://capwiz.com/zerotothree/issues/bills/

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Section ten:Works Cited

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Section Ten: Works Cited

1 Engle WA, Tomashek KM, Wallman C, Committee on Fetus and Newborn. “Late-Preterm” Infants: A Population at Risk. Pediatrics. 2007;120:1390-1401.

2 National Center for Health Statistics final natality data. March of Dimes Web site. Available at: www.marchofdimes.com/peristats. Accessed February 11, 2010

3 Masset HA, Greenup M, Ryan CE, Staples DA, Green NS, Maibach EW. Public perceptions about prematurity: a national survey. American Journal of Preventive Medicine. 2003. 24.2:120-127.

4 National Vital Statistics Reports, Vol. 56, No. 6, Dec 5, 2007.

5 National Vital Statistics Reports, Vol 57, Nov 2, July 30, 2008.

6 Callaghan WA MD, MPH, MacDorman MF PhD, Rasmussen SA, MD, MS, Qin C, MD, DrPH and Lackritz EM, MD. The Contribution of Preterm Birth to Infant Mortality Rates in the United States. Pediatrics. 2006:118.4:1566-1573.

7 Premature Abandonment? Multidisciplinary Experts Consider How to Best Meet Preemies Needs at “Preterm Infants: A Collaborative Approach to Specialized Care Roundtable. Paper on file at MedImmune, Inc.

8 Preterm labor. ACOG Web site. Available at: http://www.acog.org/publications/patient_education/bp087.cfm. Accessed February 11, 2010

9 About Prematurity; Complications in the newborn. March of Dimes Web site. Available at: http://www.marchofdimes.com/prematurity/index_about_6306.asp Accessed February 11, 2010.

10 About Prematurity: Support Research. The Mystery of Premature Birth. March of Dimes Web site. Available at http://www.marchofdimes.com/prematurity/21209_11560.asp Accessed March 9, 2010

11 Nelson F. From Science to Public Policy: Premature Infants. Zero to Three Policy Center. October 30, 2006.

12 Institute of Medicine Preterm Birth: Causes, Consequences and Prevention. National Academy Press. Washington, DC; 2006.

13 Reuters T. The Cost of Prematurity and Complicated Deliveries to U.S. Employers. March of Dimes Web site. 2009. Available at http://www.marchofdimes.com/prematurity/index_about_55353.asp. Accessed February 11, 2010.

14 McLaurin KK, Hall CB, Jackson EA, Owens OV and Mahadevia PJ. Persistence of Morbidity and Cost Difference Between Late-Preterm and Term Infants During the First Year of Life. Pediatrics. 2009;123:653-659.


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Section ten: Works Cited (continued)

15 Raju TN, Higgins RD, Stark AR, Leveno KJ. Optimizing care and outcome for late-preterm (near-term) gestations and for late-preterm infants: a summary of the workshop sponsored by the National Institutes of Health and Human Development. Pediatrics. 2006;118:1207–1214. 16 Overview National CHIP Policy. Centers for Medicare and Medicaid Services. Available at: http://www.cms.hhs.gov/NationalCHIPPolicy/01_Overview.asp#TopOfPage. Accessed: February 11, 2010.

17 MedlinePlus Medical Dictionary. Available from: http://www.nlm.nih.gov/medlineplus/mplusdictionary.html Accessed February 23, 2010.

18 Ethnic Media in America: The Giant Hidden in Plain Sight. NCM Poll, June 7, 2005.

19 March of Dimes Premature Birth Report Card. http://www.marchofdimes.com/peristats/whatsnew.aspx?id=38. Accessed on February 11, 2010.

20 Zaichkin J, RNC, MN. Newborn Intensive Care: What Every Parent Needs to Know. 2nd ed. NUCU Ink Book Publishers; 2002:359.

21 About Prematurity: The Cost to Business. March of Dimes Web site. Available at:http://www.marchofdimes.com/prematurity/index_about_15349.asp. Accessed February 11, 2010.

22 About Prematurity: The Emotional Toll. March of Dimes Web site. Available at: http://www.marchofdimes.com/prematurity/index_about_15350.asp. Accessed February 11, 2010.

23 Zaichkin J RNC, MN. Newborn Intensive Care: What Every Parent Needs to Know. 2nd ed. NICU Ink Book Publishers; 2002:308.


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