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Stillbirth Legislation Needs Your Help
Dear Friends,
We have exciting news!
Representative Peter King from New York has introduced a bill to raise awareness about stillbirth that seeks to standardize the definition of stillbirth, and the method in which stillbirth data is collected, so there can be a national repository for stillbirth data with which to conduct comprehensive research efforts. The bill also authorizes a campaign to increase public awareness of good prenatal care practices that may decrease the risk of stillbirth, including monitoring movements during the last trimester. The proposed bill and supporting documents are attached.
Now we need your help! We are asking that you write a letter to your Representative asking them to co-sponsor this bill. The more co-sponsors the bill has, the more likely it is to pass. Please note, this is for the House of Representatives only. Do not contact your Senators at this time.
If you could do this within the next couple days to one week, we will be able to maximize the momentum Representative King has initiated!
Members of Congress receive hundreds of messages from their constituents every day. This communication is important to them because it helps them better understand what issues are important to those they serve. Through your requests, congressional leaders will support legislation, add their names as co-sponsors or even introduce legislation to assist constituents in their districts.
The compelling testimony provided by parents at First Candle’s 2007 Advocacy Day-on-the Hill is what prompted Representative King to introduce this important bill!
- The first step is to identify the Representative for the District you live in. If you already know that, or have had direct contact with him/her, you are one step ahead of the game!
- If you do not know who your Representative is, or if you do not have contact information, you can find that information at https://forms.house.gov by putting in your 9-digit zip code (if you do not know your 4 digit extension, you can get it at http://zip4.usps.com/zip4/welcome.jsp.) You will then be able link directly to your Representative’s website. There you will find all the information you need, as well as the ability to email directly to their office.
- Once you have the contact information, write your letter. We have provided a sample letter below, but encourage you to add your personal story where indicated. Personal stories always have a greater impact and are taken more seriously than form letters! Of course, you can write your own letter if you have the time or desire. Just remember to keep the statistics and information about the bill consistent with that of the sample letter.
- Sending a hard copy or email letter are both equally effective. If you are mailing a hard copy, feel free to send along the documents attached to this email. It is not a good idea to attach documents to email letters, as they will most likely be rejected. Do not let this discourage you from using email though, as the vast majority of constituent letters do not include supporting documentation. Your email letters can be sent directly through your Representative’s website.
- First Candle would very much appreciate knowing who you have sent a letter to. This way we can conduct follow-up if and when that becomes necessary. Simply send an email to jennifer.johnson@firstcandle.org with your name and the name of the representative or staffer you sent the letter to. Hard or email copies of your letters are also welcome!
- And finally . . . please share this email with anyone that you think would be interested in supporting this effort, including family, friends, your favorite support organizations, groups, websites, etc.
- If you have any questions regarding the bill or this process, feel free to contact Marianne Adezio at 703-741-7053 or madezio@golinharris.org.
We thank you in advance for your prompt attention to this important matter! By working together, we stand to gain the most in our quest to spare families the devastation of stillbirth . . . in the belief that every baby should live.
Sincerely,
The Board and Staff of First Candle
Sample Letter
Dear Representative ________________:
I am writing to ask you to co-sponsor legislation that would help the CDC and researchers better determine the risk factors associated with stillbirth and convey those risk factors to expectant parents.
House of Representative Bill 5979, the Stillbirth Awareness and Research Act of 2008, was introduced by Representative Peter King of New York in an effort to address the lack of standardized data collection nationally with regard to stillbirth.
Each year more than 25,000 babies in the United States are stillborn. More than 50 percent of these deaths occur in the last trimester of pregnancy and 15 percent occur during labor and delivery. Due to a lack of autopsy/investigation and inconsistencies in diagnosing these, more than 50 percent of all stillbirths remain unexplained.
With standardized investigation and reporting of these deaths, researchers would be better able to determine the risk factors. H.R. 5979 would both standardize the definition of stillbirth and the method in which data is collected, in order to create a national repository of stillbirth data to assist researchers in conducting comprehensive studies in to the causes of, and possible preventive strategies for, stillbirth. The bill also authorizes a public awareness campaign promoting good prenatal practices, including monitoring movements during the last trimester of pregnancy, to reduce the risk of stillbirth.
This legislation is important to me because (insert your personal story here.)
Thank you so much for your consideration of my request.
(insert name and contact information here)
URGENT LEGISLATIVE ALERT
WRITE, CALL, AND VISIT YOUR LEGISLATORS TO
SECURE FUNDING FOR THE
SIDS FIVE-YEAR RESEARCH PLAN,
INCREASES IN FUNDING FOR STILLBIRTH RESEARCH,
SUDDEN INFANT DEATH SCENE DEMONSTRATION GRANTS, AND
NATIONAL SIDS AND INFANT DEATH PROGRAM SUPPORT CENTER
Dear First Candle/SIDS Alliance Advocate:
Once again, your active participation is needed to secure full
funding for Sudden Infant Death Syndrome (SIDS) and Stillbirth
priorities at the National Institute of Child Health and Human
Development (NICHD) at the National Institutes of Health (NIH),
the Centers for Disease Control and Prevention (CDC), and the
Health Resources and Services Administration (HRSA). Over the
next several months, the United States Congress will be
considering the legislation that provides Fiscal year 2004
funding for the NIH, CDC, and HRSA. Your letters, calls, and
visits are critical to convince legislators about the
importance of increased funding for federal SIDS and
stillbirth initiatives.
WHAT
YOU CAN DO TO HELP
Historically, Congress has been extremely supportive of
SIDS efforts, thanks to you and the concerns that you have
expressed as constituents. Although progress has been made,
there is still a great deal more to do in the fight against
SIDS. It would truly be a tragedy if research and service
programs were halted or delayed at the point when so much
progress is being made. First Candle/SIDS Alliance
has recently expanded our efforts to include stillbirth
deaths. Each year in the United
States, more than 26,000 babies are born still. Stillbirth
is far from a rare occurrence, and for more than half of these deaths, no
answer can be found as to why these otherwise normal babies
were delivered dead.
Your
personal story and plea for support makes an enormous
difference with Congress! Please write your two Senators and your
Representative urging them to do the
following:
· Include
an overall 10% increase for NIH and NICHD for FY 2004.
· Encourage
NICHD to continue to fund the third five-year SIDS research
plan. This plan looks at the continuum of sudden death in early
life that encompasses the last weeks of gestation
(stillbirths) and the first year of life (SIDS).
· Ask NICHD
to expand funding for Stillbirth research. Continue to fund
the National SIDS and Other Infant Death Program Support
Center at the Maternal and Child Health Bureau (MCHB),
within HRSA.
· Provide
funding for demonstration projects for the CDC Sudden Infant
Death Scene Protocol in rural, urban, and suburban settings
to provide a nation-wide protocol for dealing with infant
death scenes.
· Support
the $300,000 included under Chronic Disease Prevention and
Health Promotion in the Senate FY 2004 Labor, Health and
Human Services, and Education Appropriations bill.
We have
provided a list of the Members
of the House and Senate Appropriations Subcommittees on Labor, Health and Human Services, Education, and Related
Agencies, who are responsible for appropriating funds to NIH,
NICHD, CDC, and HRSA. Please write the members from your
state as well as the chairmen of this committee in addition
to your state Senators and Representative. Please send
copies to First Candle/SIDS Alliance at 1314 Bedford Avenue,
Suite 210, Baltimore, MD 21208. A sample letter, as well as
links to Web based resources,
are provided for your use.
Furthermore, telephone calls and personal visits to your
local or Washington, DC Congressional offices are also
important and have tremendous impact on legislators.
Legislators are always interested in responding to
constituent concerns. Let them know that you are concerned
about SIDS and Stillbirth deaths and want to secure their
commitment. To learn more about the next First Candle/SIDS
Alliance Day on the Hill or for further assistance, please call Sara Arnold at the
First Candle/SIDS Alliance Washington, DC office at
202-544-7499 or Arnold@hmcw.org.
Following
is a summary of the federal SIDS and Stillbirth efforts:
THE FEDERAL SIDS/STILLBIRTH RESEARCH PROGRAM
In 1974,
specific legislation - the Sudden Infant Death Syndrome Act
(P.L. 93-270)- gave NICHD the statutory responsibility to
conduct SIDS research. In 1989 and 1995, at the request of
the United States Congress, the NICHD produced reports that
summarized advances in SIDS and recommendations for research
over the next five years.
During
this time, great progress has been made. Less than 10 years
ago, almost twice as many infants were dying of SIDS.
Stomach sleep position was identified as a significant risk
factor for SIDS in the early 1990s. The subsequent efforts
of the national “Back to Sleep” campaign led to a
significant decrease in the number of infants being placed
to sleep on their stomachs and a 50% reduction in SIDS rates
between 1992 and 2000. Despite these efforts, SIDS remains
the leading cause of death between one month and one year of
age in the United States.
To date,
we cannot guarantee that a given infant will not die, and
there is a significant and growing disparity in the SIDS
rate among certain racial and ethnic groups.
Influenced by the progress achieved, in 1999, the Congress
recommended that a third five-year plan be developed so that
research could continue. NICHD is currently in this third
five-year research plan. The purpose of the new SIDS
five-year research plan is to outline a research and public
health agenda that builds on the successes of the past and
forges new paths of discovery. The recommendations include
strategies to improve maternal health as well as infant
health. This plan spans basic infant care practices and the
latest molecular genetic technologies, as well as providing
for the knowledge and resources needed to illuminate the
cause(s) of SIDS, and eliminate deaths.
Immediate
attention is required as well to address the issue of
stillbirth deaths in our country. First Candle/SIDS
Alliance encourages NICHD to go beyond SIDS and examine all
sudden infant deaths occurring from late fetal life through
infancy and early childhood. Your help is needed to push
Congress to provide adequate funding and support for all
public health related programs, with particular emphasis on
funding for SIDS and Stillbirth research at NICHD. NICHD
needs the support of Congress to continue funding the third
SIDS five-year research plan. Preferably this support would
come in the form of a Congressional recommendation to
NICHD for a 10% funding increase over FY 2003 for SIDS
research and Stillbirth research, similar to the 10%
increase requested for all of NIH. We need you to
encourage Congress to include legislative language with this
recommendation in the Fiscal Year 2004 appropriations bill.
NATIONAL SIDS AND INFANT DEATH PROGRAM SUPPORT CENTER
The
Health Resources and Services Administration (HRSA) Maternal
and Child Health Program provides funding on an annual basis
for the National SIDS and Other Infant Death Program Support
Center, which is administered by First Candle/SIDS
Alliance.
The
National SIDS and Other Infant Death Program Support Center
was designed to provide coordination, technical assistance,
and materials for SIDS and other infant death programs
across the country. As more and more groups expand their
missions to encompass other infant deaths, this technical
assistance becomes vital to help identify potential
partners, create new resources, and ensure quality control.
Targeted materials for grandparents and childcare providers
have been developed by the Center. The Program Support
Center has already been instrumental in establishing links
with other efforts devoted to infant health, particularly in
attracting interest and commitment from those working in
minority communities. Collaborative initiatives promoting
risk reduction strategies and new culturally sensitive
materials have been developed to further outreach efforts
and address closing the gap of racial and ethnic disparities
in infant mortality.
Each year
we count on Congress to emphasize the importance of this
program; their support is imperative once again this year. Please include information about the value of the National
SIDS and Other Infant Death Program Support Center in your
letter.
DEATH
SCENE INVESTIGATION PROTOCOLS
Another
critical area that requires congressional encouragement and
support is the implementation of standardized death scene
investigation protocols created by the Centers for Disease
Control and Prevention (CDC). Although Congress has already
made recommendations to the CDC to allocate funding to
implement demonstration projects of the Sudden Unexplained
Infant Death Investigation Protocols, CDC has failed to make
any tangible progress in this area. The demonstration
projects will help prove the value of the protocols and
encourage their adoption by communities across the country.
A primary
reason for the protocols is to help differentiate cases of
SIDS from cases of child abuse. As you know, the media has
often focused its attention on isolated incidents of abuse
that are misdiagnosed as SIDS, though it is far more common
that families or care givers of SIDS infants are unjustly
suspected of being responsible for the death. Quite often,
they are arrested and subjected to an unfair and insensitive
investigation that can have devastating effects on them,
their families, and their communities. Implementation of a
death scene protocol for unexplained infant deaths would
decrease the incidence of unjust accusations of grieving
parents, as well as uncover any cases of suspicious infant
deaths. Furthermore, these protocols will also increase the
epidemiological information available about SIDS deaths and
assist in our overall knowledge about SIDS.
In the
fiscal year 2004 Labor, Health and Human Services, and
Education Appropriations bill approved on June 26 by the
Senate Appropriations Committee, there is $300,000 included
under Chronic Disease Prevention and Health Promotion
specifically for death scene protocol demonstration projects
in the infant mortality program. We need to demonstrate
our support for this funding so that the final Labor, Health
and Human Services, and Education Appropriations bill
includes these specific funds.
YOUR
EFFORTS MAKE A DIFFERENCE
Federal
legislators face the formidable task of allocating scarce
resources among a variety of competing initiatives
annually. A unified effort by the SIDS and Stillbirth
communities is vital if we are to realize our goal of
receiving adequate funding for SIDS and Stillbirth research
and services. Your personal letters, calls, and visits have
had an enormous impact on the Congress and secured the
commitment to fund SIDS research and other programs in the
past. Please help make a difference again this year.
SAMPLE LETTER TO SENATORS AND
REPRESENTATIVES
Honorable ___________
U.S. Senate
Washington, DC 20510
Honorable
__________
U.S. House of
Representatives
Washington, DC 20515
Dear Senator/Representative__________:
I am writing to ask your support for three federal
initiatives crucial to infant health research, education,
and family support. I urge you to continue providing
funding for the third five-year research plan for Sudden
Infant Death Syndrome (SIDS), through the National Institute
of Child Health and Human Development (NICHD) at the
National Institutes of Health (NIH) by providing a 10%
increase for FY 2004. Please encourage NICHD to similarly
increase support for SIDS research by 10% over FY 2003.
Without this funding, critical research efforts will not be
completed and there will be no solution to the number one
cause of death among infants age one month to one year.
With this funding NICHD can continue its progress to
determine the cause(s) of SIDS, and continue the “Back to
Sleep” public health campaign which has already reduced the
number of babies that die of SIDS by more than 50 percent.
Also, I encourage you to ask NICHD to evaluate the viability
of expanding research planning and funding for stillbirth
deaths as components of the third five-year SIDS research
plan. Each year, more than 26,000 babies are stillborn in
the United
States.
Additionally, I urge you to support implementation of
demonstration projects for the Sudden Infant Death Scene
protocol at the Centers for Disease Control and Prevention
(CDC)As you most likely know, in 1992, the U.S. Congress
recommended the creation of a standard scene investigation
protocol for sudden infant deaths. The new Sudden
Unexplained Infant Death Investigation Protocols were issued
in 1996; however, to date their adaptation has been
limited. Demonstration projects are necessary to help prove
the usefulness of the protocol. There are many benefits to
widespread implementation of the scene investigation
protocol. For example, this protocol will help
differentiate legitimate cases of SIDS from cases of child
abuse. The fiscal year 2004 Senate Labor, Health and Human
Services, and Education appropriations bill includes
$300,000 for implementation of these projects under Chronic
Disease Prevention and Health Promotion at the CDC. Please
support this funding in the final Labor, Health and Human
Services, and Education 2004 appropriations bill.
Finally, I hope you will continue to encourage the funding
of the National SIDS and Other Infant Death Program Support
Center at the Health Resources and Services Administration (HRSA).
The Program
Support Center provides technical assistance and resources
to local professionals and agencies working to encourage
healthy maternal and infant care practices, provide
education and outreach, and help families cope with the
death of a baby.
(In this
paragraph, please relate your personal experience with SIDS
or Stillbirth.)
Thank you in advance for support of SIDS and
Stillbirth research and public health efforts. Please
advise me of your actions to address these important issues.
Sincerely,
Name
Address
Web Based
Resources
To locate your Senators and Representative:
www.house.gov
www.senate.gov
Tips on writing letters to Congress:
http://Congress.org
http://usgovinfo.about.com/library/weekly/aa020199.htm
Letter
Writing Tips
-
Relate your personal experience with SIDS or stillbirth in your own
words. Individual constituents telling their personal
stories about a tragedy that happened in the community
strikes a genuine chord with House and Senate members.
-
Be sure to ask for a reply in your letter.
-
Include your full name and address on the letter,
not just the envelope.
-
Please send a copy of your letter to First
Candle/SIDS Alliance at 1314 Bedford Avenue, Suite 210,
Baltimore, MD 21208 so that we can follow-up with Congress.
MEMBERS OF THE HOUSE AND SENATE APPROPRIATIONS SUBCOMMITTEES
ON LABOR, HEALTH AND HUMAN SERVICES, EDUCATION, AND RELATED
AGENCIES
House
Ralph Regula (R-OH), Chairman
David Obey (D-WI), Ranking
Member
Ernest Istook (R-OK)
Steny Hoyer (D-MD)
Roger Wicker (R-MS)
Nita Lowey (D-NY)
Anne Northup (R-KY)
Rosa DeLauro (D-CT)
Randy “Duke” Cunningham (R-CA)
Jesse Jackson, Jr. (D-IL)
Kay Granger (R-TX)
Patrick Kennedy (D-RI)
John Peterson (R-PA)
Lucille Roybal-Allard (D-CA)
Don Sherwood (R-PA)
Dave Weldon (R-FL)
Mike Simpson (R-ID)
Senate
Arlen Specter (R-PA), Chairman
Tom Harkin (D-IA), Ranking
Member
Thad Cochran
(R-MS)
Ernest Hollings (D-SC)
Judd Gregg (R-NH)
Daniel Inouye (D-HI)
Larry Craig
(R-ID)
Harry Reid (D-NV)
Kay Bailey Hutchison (R-TX)
Herb Kohl (D-WI)
Ted Stevens (R-AL)
Patty Murray (D-WA)
Mike DeWine (R-OH)
Mary Landrieu
(D-LA)
Robert Byrd (D-WV)
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