A Progress Report from the CDC on the SUID Case Registry Pilot Program February 28th, 2011

Thank you for your support of continued funding for this critically needed project. We provide this report as testament that your voices really can make a difference!

Highlights of the Sudden Unexpected Infant Death Case Registry Progress Report from the Centers for Disease Control and Prevent (CDC)

• Each year in the United States, approximately 4,500 infants die suddenly of no immediately obvious cause.  Sudden Infant Death Syndrome (SIDS) is the leading cause of infant deaths that occur after one month of age.

• Death certificates have been the primary source for surveillance activities to assess trends and characteristics of SIDS and other SUID; however information from death certificates is very limited.

• The SUID Case Registry addresses this limitation by establishing a surveillance system that supplements death certificate data with child death review findings, medical records and death scene investigation and pathology reports.

• The SUID Case Registry is intended to improve SUID surveillance, support the CDC in analyzing trends and characteristics of SUID cases and widely disseminate these findings to policy makers, researchers, health care providers and ultimately parents in 2011.

• The state grantees are Colorado, Georgia, Michigan, New Jersey and New Mexico; in 2010 the CDC announced additional funding to Minnesota and New Hampshire.

• In its first year of the pilot program, state grantees successfully identified over 500 SUID cases, developed and implemented a robust continuous quality improvement system and invigorated the Child Death Review system, improving data collection and review for all childhood deaths.

• With one year of data collection completed, there is evidence that pilot program states have enhanced capacity to bring infant death investigation and autopsy information to case reviews.

• The state grantees are concentrating efforts to examine not only what was discovered during their investigations, but also how these investigations were accomplished.  This represents a shift in how these teams function and offers a local opportunity to improve infant death investigation.

• Funding from the CDC and HRSA’s MCHB/Child Death Review program is improving the data quality not only for SIDS deaths but for all child death reviews.

• The SUID Case Registry pilot program anticipates launching an improved version of the SUID Case Report in March 2011.

Advocacy Alert – We need your help AGAIN! February 18th, 2011

Your voices have been heard! Last week, leaders in the U.S. House of Representatives reduced the proposed cut from $210 million to $50 for the Title V Maternal and Child Health Services Block Grant.

But the debate in the House is continuing and we need your help again NOW!

If enacted, these proposed funding cuts could terminate lifesaving research and essential services including prenatal and well-child care, immunizations and access to specialty services for children with birth defects or chronic conditions. For example,

• The Maternal and Child Health Block Grant that supports state-based prenatal care programs and services for children with special needs is facing a funding cut of $50 million. The important work of First Candle’s education and research programs, including staff, is also funded under the MCH Block grant, and is also at risk.
• The National Institutes of Health that supports lifesaving biomedical research aimed at finding the causes and developing strategies for preventing preterm birth is facing a $1 billion cut in funding.
• The Centers for Disease Control and Prevention is targeted for over $1 billion in cuts to its preventive health programs including teen pregnancy, safe motherhood initiatives, folic acid education, birth defects surveillance and research, and preterm birth studies.

Please contact your congressional representatives in the House of Representatives by phone or email TODAY! To locate names, phone numbers and emails, go to: www.house.gov.

Urge them to oppose these drastic federal agency cuts to MCHB, HRSA, NIH and CDC that would directly affect the survival and health of mothers and babies.

On behalf of the millions of women, children and families served by Title V MCH Programs nationwide, we offer our sincere thanks for your efforts to protect these vital programs and services.

The Board and Staff at First Candle

Advocacy Alert – Your Help is Needed TODAY! February 10th, 2011

Potential $210 million (32%) cut to the Title V Maternal & Child Health Block Grant
Call your congressional leaders TODAY!

Dear Friends:

First Candle is pleased to partner with the Association of Maternal and Child Health Programs (AMCHP) to distribute important information regarding funding cuts that would impact maternal and child health and children with special health care needs programs in your state.

Today, House Appropriations Committee Chairman Harold Rogers (R-KY) released initial details of a House proposal (available here) to revise the current continuing resolution (CR) that would fund federal government through the rest of the fiscal year.

The proposal includes a $210 million cut to the Title V Maternal & Child Health Block Grant and is expected to be voted on in the House early next week.

It is absolutely imperative that your Members of Congress hear from you today about how devastating this cut would be to the maternal and child health and children with special health care needs programs in your state.

We urge you to call your elected officials today with the following message. It will only take a minute of your time, but can have a major impact on this critically needed funding.

• I am calling in strong opposition to the proposed $210 million cut to the Title V MCH Block Grant included in the revised House continuing resolution. $210 million is a 32% cut to an effective, important and vital program in our state.
• Cuts this deep will devastate state and local programs serving women, babies, children, and children with special health care needs in our state.
• This cut is counter-productive because health issues that we don’t prevent or detect early through this program now will ultimately cost us all more later.  For example, the average cost of a premature baby is $58,000; it makes no sense to cut programs that work to prevent maternal and child health issues like prematurity that will save us money in the future.
• Please tell (your Representative’s/Senator’s name) that we should not balance the budget on the backs of babies and our nation’s most vulnerable.

Members of Congress need to hear from you today.  They listen to constituents and it is imperative they know how these cuts will impact mothers and children in their jurisdictions.

Follow these links to identify your representatives’ names and phone numbers.

• www.house.gov (by zip)
• www.senate.gov (by state)

While the urgency of the situation requires immediate phone calls, you may want to follow-up with an email or fax to reiterate your point. We hope you will also share this email with everyone you know and urge them to contact their Members of Congress as well!

Please share any feedback you receive with AMCHP staff about your contacts as this will be helpful as they continue their advocacy efforts on behalf of our nation’s babies and families.

For more information, or to share feedback, please contact Joshua Brown (jrbown@amchp.org) or Brent Ewig (bewig@amchp.org) via email or at (202) 775-0436.