SIDS Related Legislation

Baby Will

SIDS Related Legislation

Senator Shannon Jones' efforts in Ohio


Senator Shannon Jones has been an outspoken advocate for Safe Sleep and reducing Ohio's Infant Mortality rate for years.

Jones, who Chairs the Senate Standing Committee on Medicaid, Health, and Human Services, was joined by Senator Charleta Tavares and other committee members on a statewide tour in 2013 to better understand the infant mortality problem and the needs associated with it and to learn more about local efforts to combat the issue. Senators Jones and Tavares also jointly sponsored Senate Bill 198, which designates each October as “Sudden Infant Death Syndrome Awareness Month.”

The Senators jointly introduced 5 separate pieces of legislation, each intended to combat a particular portion of the issue. Those bills include:

Senate Bill 276: Improving Safe Sleep Education
This bill will provide an update to “Claire’s Law,” which currently requires Shaken Baby Syndrome education be given to all parents, by also requiring safe sleep education materials to be distributed to new parents.

Senate Bill 277: The Infant Mortality Commission
Establishes a commission to inventory state services, resources, and their funding streams available to address Ohio’s high rate of infant deaths. The commission will also:

• Determine potential connections between statewide programs and local or community-based programs.

• Include four legislators (two House, two Senate), a Public Health Commissioner, a coroner or someone who conducts death scene investigations, two representatives from community-based programs, the Director (or his or her designee) of the Ohio Department of Medicaid, the Director (or his or her designee) of the Ohio Department of Health, the Director (or his or her designee) of the Office of Health Transformation, the Director (or his or her designee) of the Ohio Commission on Minority Health, and the Attorney General (or his or her designee).

Senate Bill 278: Understanding SIDS
The legislation will require use of the Sudden Unexplained Infant Death Incident (SUIDI) Reporting Form whenever a child one year of age or younger dies suddenly when thought to be in good health. This will help the state better understand the causes behind SIDS and devise new strategies for preventing those deaths.

Senate Bill 279: Health Center Pilot Project
This bill would establish a three-year pilot program using the model of Centering Pregnancy to improve birth outcomes at four Federally Qualified Health Centers.

Senate Bill 280: Postpartum Care & Reimbursement for Non-Medical Services
The legislation would require case management services for postpartum care be included in the Medicaid managed care system. It would also set aside $25 million from Medicaid savings that will be granted by the Ohio Department of Health for community-based services that are not covered by Medicaid and are intended to reduce infant mortality.

Thanks to the expansive efforts from Senator Shannon Jones and Senator Charleta Tavares, along with the rest of Ohio's 130th Legislature, Senate Bill 278 was officially signed into law on June 17, 2014.  This was a huge step towards understanding the root causes of SIDS and bettering the Infant Mortality rate of Ohio.

 

Andy Ginther and the Greater Columbus Infant Mortality Task Force

In January 2014, Columbus City Council President Andy Ginther led the first Greater Columbus Infant Mortality Task Force meeting in a series of efforts to lower the infant mortality rate in Columbus.  The task force is comprised of 26 highly respected community leaders across many fields, including health care, business, social services, government, education, nonprofit and faith-based sectors.  Baby Will's very own Nathan Hurd also serves on the board.  The goal of the Greater Columbus Infant Mortality Task Force is to lower our community's infant mortality rate and increase the health of expectant mothers, while tackling many challenging aspects that feed into infant mortality, such as poverty and other socioeconomic factors.

Council President Andy Ginther later announced that he is making it his mission to pursue reducing the overall infant mortality rate by 40% and to cut the disparity between black and white babies by half in ten years—a phenomenal feat that would impact our community tremendously.

One of the conclusions that task force came to was that many solutions would need to be put in place in order to make the impact they are hoping for.  One of these solutions is to target the 8 "hot spot" neighborhoods that their studies have shown to have infant mortality rates that are three times higher than the community overall.  These neighborhoods were also accompanied by higher rates of poverty, unemployment, housing instability, and transportation barriers.  This research has been very impactful towards the recommendations the task force made to reduce collective infant mortality rate.

Since then, Columbus City Council has approved funding for a consultant to develop the plans initiated by the Greater Columbus Infant Mortality Task Force-- a total of $225,000.  The efforts of the Greater Columbus Infant Mortality Task Force, led by City Council President Andy Ginther, are obviously kicking in!

You can see the efforts and details of the Greater Columbus Infant Mortality Task Force here.

What the US is doing about SIDS

When we learned how many other families lose children each year to SIDS we remember feeling like our government has let us all down.  We remember feeling this kind of thing should not happen in a developed country, especially at this scale, and for as long as it has been a problem.  

To be clear, we think there is a lot more that needs to be done.  But after studying the SIDS problem, it actually became apparent that the US government has done a lot, and that there are numerous leaders painfully aware and passionately devoted to eliminating SIDS.

In 1974 Congress passed the Sudden Infant Death Syndrome (SIDS) Act, directing the National Institute of Child Health and Human Development (NICHD) to take the lead in SIDS research.1  Since then the NICHD has plowed hundreds of millions of dollars into medical research, and sponsored important public awareness campaigns that have saved thousands of lives. 2  

In addition to the NICHD, we are aware of six other government organizations working to combat SIDS.  We provide more information on these efforts on the government organization page on our website.  

We have also found dozens of members of congress who have proposed or cosponsored legislation related to SIDS.  We highlight the latest proposed congressional bills below, and also share a tool that can be used to find SIDS related legislation that has been proposed since 1989.

How to Find SIDS Legislation
In 1995 Congress directed the Library of Congress to make federal legislative information freely available to the public.  The result was developing a database named “THOMAS.”  3

This powerful research tool is free and surprisingly easy to use.  Users can do a word search for SIDS, SUID, or whatever term might be of interest to find any Bills containing such language that were proposed in either the House of Representatives or the Senate.  The database goes back to the 1989 session of congress, and even gives information on who sponsored or cosponsored the Bill.  It also provides the current status of the Bill.  

Click here to go to the THOMAS search screen.

Current SIDS Related Legislation
We are aware of two current Bills being proposed in Congress that in our view if passed could help combat SIDS.

Sudden Unexpected Death Data Enhancement and Awareness Act
This Bill is directly related to SIDS.  From what we can tell, Senator Frank Lautenberg from New Jersey has been trying to get a version of this bill passed since 2009.  We were first made aware of this proposed legislation years ago by the CJSIDS Foundation and believe they are owed a debt of gratitude for helping to get the Bill to this point.

Last year it was known as Senate Bill 1862.  This year it has been reincarnated and improved as Senate Bill 314 the Sudden Unexpected Death Data Enhancement and Awareness Act.

Based on what we have learned about SIDS, this Bill represents the most urgent action needed to solve SIDS.  In our opinion, as long as there is inconsistency in how SIDS/SUID deaths are investigated, it will impede research and public health efforts needed to solve the problem.

This Bill will fix the data problem that has plagued SIDS for decades.  Among other things, the bill also calls for putting $27 million in to a public awareness campaign, and $10 million into training for medical examiners, coroners, and forensic pathologists over the next 5 years.

In our opinion, this appears to be a very well written Bill that is based on a solid and informed strategy for what it will take to solve SIDS.  What is not clear to us is how this bill will interface with the pilot projects currently being conducted by the CDC, but the Bill implies they have thought this through.  The only concern we have with the bill is that they are not asking for enough money to support the public awareness campaign, and that it does not request any additional funding for medical research.


National Pediatric Research Network Act
From what we can tell in reading through THOMAS, it appears a version of this Bill was first introduced in 2008 by Senator Sherrod Brown of Ohio as the “S.2773 Pediatric Research Consortia Establishment Act.” Since then the Bill was introduced each year in some form until its current iteration introduced by Representative Lois Capps from California as the “H.R. 225 National Pediatric Research Network Act.”  

It appears this Bill has now passed the House and is referred to the Senate.  As we understand it, this bill will put more money into Pediatric medical research.  What is not clear to us at this point is if any of this added funding will be specifically put into SIDS research, but it seems likely given Senator Brown’s comments on the Bill.

According to press releases on January 28, 2013 and February 15, 2013 Brown said “Although Children compose 20 percent of the U.S. Population but only about 5-10 percent of Federal Research Dollars are directed to pediatrics.”  Brown went on to say “This bipartisan legislation will use a proven national network model to strengthen the effectiveness of pediatric medical research that is vital to improving the health of our nation’s children.”




 

Footnotes

1 Source:  http://www.nichd.nih.gov/about/overview/timeline/Pages/1970-1979.aspx
2 Source:  http://www.firstcandle.org/new-expectant-parents/about-sids-suid/sudden-unexpected-infant-deaths-suid-facts/
3 Source:  http://thomas.loc.gov/home/abt_thom.html