The ASAP Coalition watches legislation and advocacy that may have an influence or impact on stillbirth awareness, research, or risk reduction.
Click on the link below for a list of past and current stillbirth legislative efforts.
The ASAP Coalition currently has over 1,000 individuals, health professionals, organizations, groups, and publication members, and the list continues to grow! By completing the brief registration you help us expand our reach to raise stillbirth awareness and prevention efforts! Together, we can work to help decrease the number of babies who die during pregnancy.
The bipartian Stillbirth Health Improvement and Education (SHINE) for Autumn Act, (S.3972 / H.R. 5487) will make critical steps to invest in research and data collection required to better understand stillbirth in the United States. Additionally, the bill will provide critical resources to state health departments, the Centers for Disease Control and Prevention (CDC), and other related federal agencies to improve data collection and increase education and awareness of stillbirth in our country.
The SHINE for Autumn Act (S.3972) spurred by Debbie Haine Vijavergiya’s (ASAP co-founder) advocacy, was recently introduced in the Senate by Senators Cory Booker (D-NJ) and Marco Rubio (R-FL). The bill will authorize funding for research and improved data collection, building for the first time, a true federal-state partnership dedicated to stillbirth prevention in the U.S. Companion legislation (H.R. 5487) led by Representatives Jaime Herrera Beutler (WA-03), Lucille Roybal-Allard (CA-40), Markwayne Mullin (OK-02), and Kathy Castor (FL-14) was passed by the House of Representatives with overwhelming bipartisan and majority support in December 8, 2021.
The SHINE for Autumn Act is the beginning of a longer-term solution towards the prevention of U.S. stillbirths. This bill will create a greater sense of urgency around the unmet needs in stillbirth research to raise our social conscience on the topic. It will finally address the negative impact stillbirth has on society and reduce the shame associated with stillbirth that forces families to suffer in silence. The SHINE for Autumn Act will provide for critical resources necessary for working together to overcome the stigma, identify the hidden causes of stillbirth, and provide more support for families that have experienced a stillbirth. The bill was named after Autumn Joy, Debbie’s daughter.
The Maternal and Child Health Stillbirth Prevention Act of 2022 was introduced into Congress in March 2022. Rep. Alma Adams (D-North Carolina) who is also the Founder of the Black Maternal Health Caucus, is leading the charge, along with Rep. Ashley Hinson (R-Iowa). Senator Jeff Merkley (D-Oregon) and Senator Bill Cassidy (R-Louisiana) are co-leading the bill in the Senate. The House and Senate companion legislation would add stillbirth and stillbirth prevention to Title V of the Social Security Act — something that has been lacking since the introduction of Title V back in 1935. The legislation recognizes that stillbirth (defined as the loss of a baby at 20 weeks or greater during pregnancy), and the disparity in those impacted by stillbirth, requires further research, support, and prevention programming. It also calls for evidence-based programs and activities and outcome research to reduce the incidence of stillbirth including tracking and awareness of fetal movements (Count the Kicks), improvement of birth timing for pregnant people with risk factors, initiatives that encourage safe sleeping positions for pregnant people, screening and surveillance for fetal growth restriction, efforts to achieve smoking cessation amongst pregnant people, community-based programs that provide home visits or other types of support, and any other research or evidence-based programming to prevent stillbirths. You can read the full bill text here.
Evermore is building a grassroots movement to advocate for changes to bereavement care policies in the USA. In a training session, updates will be provided on the national movement in bereavement care systems and federal legislation pending in Congress. It must be made clear that paid bereavement leave must stay, and five days are required — and ALL deserve equal access to leave benefits. Lawmakers will make this decision for everyone in the USA, based on what they think YOU, the constituent, wants. To learn more go to Bereavement Care Systems Advocacy.
Currently, there is no standard federal definition of stillbirth, nor is there a standard protocol for the collection of stillbirth data. This makes any comprehensive research effort into the causes and prevention of stillbirth nearly impossible. These parents and their babies deserve more. In 201, this bill was introduced by Congressman Peter King (R-NY) and addresses all of the problems with current stillbirth data collection methods and a lack of public awareness. Representative Michael McCaul (R-TX) has signed on as a lead co-sponsor. Read the full text of H.R.2365 (Inactive) One of our founders, Dr. Pat Flynn, served as a national media liaison for Representative King's office.
The Washington DC City Council passed the Family Bereavement Leave Emergency Amendment Act of 2021 which will grant all DC employees 10 days for bereavement, without loss of pay leave, for stillbirth or loss of a child under 21 years of age. While this act was effective March 2021, it is retroactive to 12/1/2020.
In February 2014, the Autumn Joy Stillbirth Research & Dignity Act unanimously passed through both houses. This law required the New Jersey (NJ) Department of Health (DOH) to establish policies and protocols for the dignified care of families experiencing stillbirths and to establish a stillbirth research database.
The state is also required to establish protocols for evaluating fetal death to ensure doctors and hospitals report accurate and complete data to the state. With that information, state health officials can create a database to increase knowledge of stillbirth. Ultimately, it will help find a way to prevent and reduce the incidence of stillbirth.
Debbie Haine Vijayvergiya, one of ASAPs Founders, worked tirelessly to push this New Jersey legislation through in memory of her daughter Autumn Joy. This legislation was UNANIMOUSLY approved in record time and will go to the Assembly before crossing the Governor’s desk for signature. We believe this legislation could be replicated in other states! If you are interested in pursuing such an endeavor. Read the full text of The Autumn Joy Stillbirth Research and Dignity Act here.
Sadly, Senator Frank Lautenberg (D-NJ) passed away in 2013. As the lead sponsor of this bill in multiple legislative sessions, Lautenberg was a true advocate for our nation’s most precious resource – our children. In his memory, let’s continue the fight to get bills pertaining to Stillbirth awareness and research signed into law!
This is federal legislation that combined the efforts of The Stillbirth Awareness and Research Act (Peter King (R-NY) and SIDS legislation originated by then IL Senator Barack Obama's S3142. It holds promise of collecting comprehensive and consistent data on thousands of babies who die each year inexplicably to stillbirth and sudden unexpected death in infancy and childhood (SIDS/SUID/SUDC).
Stillbirth Awareness and Research Act of 2013 - was to amend the Public Health Service Act to direct the Secretary of Health and Human Services (HHS), acting through the Director of the Centers for Disease Control and Prevention (CDC), to establish and maintain a scientific registry of stillbirths in the United States, which shall include for each stillbirth information on the stillborn fetus and the mother's health and pregnancy as collected and submitted by states on the U.S. Standard Report of Fetal Death.
The Farley-Kluger Initiative began in January, 2011 as a grass-roots advocacy effort to petition change. Inspired by these efforts, Senator Jon Tester (MT) has introduced S. 226 – The Parental Bereavement Act of 2013 in the U.S. Senate and Congressman Steve Israel (NY) has introduced H.R. 515 – The Parental Bereavement Act of 2013 (aka Sarah Grace-Farley-Kluger Act) in the U.S. House of Representatives in the new 113th Congress. Support needs to be given to this issue in both the House and the Senate.
The issue with the current FMLA is that it does not extend benefits to employees that have experienced the death of a child. Initiated by Kelly Farley, founder of the Grieving Dads Project (www.grievingdads.com) and Barry Kluger, author and grieving father, the goal is to modify the existing FMLA to expand coverage and existing benefits to employees experiencing the death of a child, regardless of the age of the child. Currently, most employers offer 2-3 days of bereavement leave. The Parental Bereavement Act would mandate up to 12-weeks unpaid leave.
*Check with your individual states for:
Stillborn Child Tax Credit
Certificate of Birth Resulting in a Stillbirth
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