SCHUMER: RESEARCH & REPORTING PROTOCOLS ON ‘SUDDEN DEATH IN THE YOUNG’ ARE COMPLETELY INADEQUATE, LEAVING GRIEVING LONG ISLAND PARENTS WITHOUT ANSWERS & NO LESSONS LEARNED TO PREVENT FUTURE TRAGEDY-– SENATOR & LONG ISLAND PARENTS OF CHILD VICTIMS URGE SENATE TO ACT ON HOUSE-PASSED BIPARTISAN BILL IN UPCOMING LAME-DUCK SESSION

Schumer Calls For Senate to Pass Legislation in Upcoming Lame- Duck Session—Legislation Has Already Passed the House of Representatives & Will Fill Gaps in Federal Reporting of Young Deaths, Improve Data Collection & Scene Investigations, Enhance Training, Plus Improve Research

Schumer Stood With Father of Ethan Spina & Other Long Island Parents to Highlight That Stricter Protocols & More Accurate Data Could Decrease The Number of Tragic Deaths in Children & Infants – Would Also Provide Quicker Answers to Parents Who Lack Information About Cause of Death For Months - Even Years

U.S. Senator Charles E. Schumer today urged the Senate to pass bipartisan legislation in the lame-duck session of Congress that would require significant improvements to research, investigation techniques and reporting protocols used to determine the cause of sudden unexplained death among infants and children. Schumer stood with impacted parents from Long Island to say that current protocols for doctors, medical examiners and law enforcement are inadequate and inconsistent from state to state, which leaves grieving parents without answers and closure and prevents lessons from being learned to prevent future deaths. According to the Sudden Unexplained Death in Childhood Program, there are more than 4,600 sudden unexpected infant deaths (SUID) each year, more than 25,000 stillbirths nationwide, and an additional 200 children between 1 to 4 years old who die without a clear cause for their death. In the most recent available annual data, New York experienced 46 sudden infant deaths, 61 deaths of unspecified cause, and 17 due to accidental suffocation in bed.

Schumer highlighted the dire need for this legislation, which will fill the gaps in federal reporting of infant and childhood deaths, improve data collection and scene investigations surrounding a child’s death, enhance training of those law enforcement, medical examiners and doctors that work on these cases, and improve research. Schumer and these parents said that improved data collection and research is the first step in understanding the cause of these deaths and will hopefully help decrease the number of tragic deaths in children and infants, and ensure parents have accurate information, sooner.

“Simply put, the United States lacks national guidelines, protocols and training on how to report, investigate and research the cause of death in the thousands of cases of sudden unexpected infant and child deaths each year, including those here on Long Island. Inconsistent practices in investigation and cause-of-death determinations hamper our ability to monitor trends, determine the cause of death, pick out risk-factors or warning signs, and design programs that could help prevent future deaths. That is unacceptable to the parents that have lost their children, and should be unacceptable to all future parents,” said Senator Schumer.

Schumer continued, “When a parent loses a child, the least that they deserve are answers. And they deserve to know that their child’s death was not in vain. Fortunately, there is a bipartisan bill that will overhaul this system by creating standardized procedures to handle these tragedies and improving data collection to bolster research. I am calling on my Senate colleagues to pass this House-passed bill in the lame-duck session and get this done.”

“As a Dad who lost the most important person imaginable, this bill is of utmost importance, not only to those of us who have suffered, but also to everyone who has a child or is planning to have one,” said Greg Spina the father of Ethan Spina, who passed away in February 2013. “The only way that we can find answers is if we have the right data and find patterns within it, and the only way that we'll have the right data is if there are standards, protocols and procedures in place to collect that data when these atrocities occur. My hope is that the details of Ethan's death will help contribute somehow to the search, and that ultimately he may help save another child's life.”

“Our country is in dire need of standardized protocols for death scene investigations and comprehensive autopsies. This will ensure that our public health and research efforts are driven by data that is complete and consistent. Each individual family expects and deserves this. The Sudden Unexpected Death Data Enhancement and Awareness Act addresses the critical limitations that exist in states across our country and will help provide answers to families and our nation overall,” said Laura Crandall, SUDC Director and SUDC Parent.

 The Sudden Unexpected Death Data Enhancement and Awareness Act, sponsored by Senator Sherrod Brown of Ohio, aims to fill gaps in federal reporting of infant and childhood deaths, enhance training and improve research. The legislation will promote awareness about unexpected sudden death in early life, and provide for continued development and updating of standard protocols and data collection related to stillbirths and sudden, unexpected deaths in infants and young children. The bill gives the Department of Health and Human Services (HHS), under the direction of the Centers for Disease Control and Prevention (CDC), the authority to carry out activities related to stillbirth, SUID and SUDC, and requires updates to protocols every five years.

First, the legislation will improve reporting protocols for stillbirths and Sudden Unexpected Death among Infants and Children, leading to reliable data collection surrounding a child’s death. Currently, reporting protocols vary from state to state. Specifically, this legislation calls for the CDC to create a national standard protocol of data reporting that state health departments would follow. Schumer said that this is crucial for several reasons. Improved reporting provides experts with data that better represents the scope of these occurrences, which is the first step to identifying their cause. Schumer said this will help ensure that parents who lose a child will have answers and information surrounding that death sooner than under the current system. More accurate reporting would also help identify certain patterns within sudden unexpected death, such as sleeping positions or other tendencies of a child, which could prevent future deaths.

Second, the bill ensures that the CDC creates and disseminates a standard death scene investigation protocol, and requires the development of guidelines for a standard autopsy protocol for both sudden unexpected deaths in infants in children. This would include specific surveillance efforts to gather sociodemographic information, death scene investigation, clinical history and autopsy information through existing surveillance systems. Schumer highlighted again that states and localities around the country all do this work differently, due to lack of national protocols. Schumer said that research on the cause of these deaths is extremely difficult until it is assured that each case is handled in a standardized way, and that the information obtained in these investigations and autopsies is consistent.

Third, this legislation would enhance the training of law enforcement, medical examiners and doctors that work on these sudden infant and childhood death cases by increasing training activities for professionals, which would be updated no less than every five years. Schumer said that medical professionals and the law enforcement that handle these cases are doing a good work, but they need the support, resources and proper training in standardized procedures and regarding which information must be gathered.

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