Follow the progress of H. R. 669 & S. 669

Please, help us get this bill (H.R. 669 & S. 669 Sudden Unexpected Death Data Enhancement and Awareness Act) passed at the federal level (USA). It provides for data gathering and data storage, and it provides death scene protocol. If we are unable to gather and store this data, we will never understand why these children are dying. Diego’s autopsy report gave the cause of death as “undetermined”. It’s not so much that I want to know how or why Diego had to die before he turned 3. I want to know why he died, so, maybe, we can prevent this from happening to other children.

The death scene protocol part is important for two reasons. First, there is the data gathering for research, but there is also the manner in which the family is treated. Diego died in Alameda, and the Alameda police officers allowed Diego’s grandparents, his parents, and his sister to remain in the house while they conducted the initial interviews and scene investigation. They also allowed me to enter the house. When the Sheriff’s office arrived to take Diego’s body away, they allowed Diego’s parents & grandparents to hold him one last time. It was awful to watch, and I was the one who pried Diego out of their arms. But I am very grateful to the Sheriff’s office and the Alameda police for allowing us to say good-bye like that.

A couple of years after Diego died, a girl in Livermore died from SUDC. That family was not treated with similar compassion. They were locked out of their house which was surrounded by crime scene tape. They were not allowed to hold the girl’s body one last time before she was taken away for autopsy. The death scene protocol addresses this issue and provides guidance that fits with my experience in Alameda.

We need a Republican senator to sponsor this bill if we have any hope of it passing. This is not a partisan issue, and I’m not pointing fingers at Republicans. I believe that we have not been able to raise this issue to a high enough issue to get a Republican senator’s attention. We really need people who have a Republican senator or two to contact their senators and tell them to sponsor this bill.

Your senator works for you. Laura Crandall, a co-founder of SUDC, made this handout on communicating with your senators and representatives. But due to the short time on this, she suggests a call to the local or DC office and ask to speak with the health legislative aide. Each office has one person who just deals with health issues. You can tell them you want to speak to them about S669 that was just approved by the House’s Energy and Commerce committee. When you get them, and may take a few calls of being pleasantly persistent. Tell them why the bill is important to you and you would like your Senator (the aide’s boss) to sponsor it. If they have any questions, you can refer them to Congressman Pallone’s office or to Laura Crandall, Assistant Executive Director for Advocacy Program Director and Co-founder of The Sudden Unexplained Death in Childhood (SUDC) Program
The CJ Foundation
Office 800.620.SUDC (or direct @ 973.783.2592)
Fax 973.559.6191

Bill Title: To amend the Public Health Service Act to improve the health of children and help better understand and enhance awareness about unexpected sudden death in early life.

House of Representatives Info:

Senate Info: