We started babywill.org after losing our Baby Will in 2009. It was clear to us early on the gravity of the SIDS problem required heavy government support. As we began studying the issues, we were pleasantly surprised to discover there were a number of government organizations already involved in trying to combat SIDS and related SUID.
We are by no means experts, but want to share what we understand thus far of how the government is trying to help. Our intent is to not only help others understand, but to also deepen our own understanding. Please let us know if there are other organizations or governmental activities we have missed (email@example.com).
Based on what we have seen we would say Congress has been active in trying to solve SIDS. In particular, in 1974 Congress passes 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 This was critical legislation that really got things moving for SIDS. Since then there have been other congressional leaders who have introduced legislation and called for more support. We discuss Congressional involvement with SIDS more in the SIDS Legislation page of our website.
Not counting Congress, we found seven groups or subgroups at the Federal level actively involved in combating SIDS. All but one of these groups is part of the massive US Department of Health and Human Services, which is the principal agency for protecting the health of all Americans.2 Below you can learn more about the parts of the Government working to fight SIDS.
Federally Funded Efforts
From what we can tell the Federal government is spending about $23 million per year in SIDS related projects. This is down from $29.8 million in 2008. This funding comes from three groups:
1.) National Institute of Child Health and Human Development (NICHD) – The NICHD is part of the National Institute of Health (NIH). The NIH is made up of 27 Institutes and Centers, each with a specific research agenda, often focusing on particular diseases or body systems.3 This is the main group responsible for funding medical research directly and indirectly aimed at solving SIDS. We have a SIDS Research page on our website for those who would like to learn more information specifically about SIDS related research.
2.) Maternal and Child Health Bureau (MCHB) – The MCHB is part of the Health Resources and Services Administration (HRSA) which is the primary Federal agency for improving access to health care services for people who are uninsured, isolated or medically vulnerable. Comprising six bureaus and ten offices, HRSA provides leadership and financial support to health care providers in every state and U.S. territory across a wide variety of activities.4 The MCHB aims to improve the health of all mothers, children and their families. The Bureau's programs reduce infant mortality; ensure access to comprehensive prenatal and postnatal care, improves health care for all children, and provide special programs for children with special health care needs.5
3.) Centers for Disease Control and Prevention (CDC) – Like the NIH and HRSA, the CDC is one of the 11 main divisions of the US Department of Health and Human Services. The CDC has 27 Centers, Institutes, and Offices of its own. According to the CDC website the mission of the CDC is to collaborate to create the expertise, information, and tools that people and communities need to protect their health – through health promotion, prevention of disease, injury and disability, and preparedness for new health threats. The CDC is currently funding the SUID Case Registry pilot programs that we highlight below under Who is Funding What.
Who is Funding What
As the graph shows, the NICHD is responsible for most of the Federal funding going toward SIDS. The NICHD funding is for medical research. We share more about medical research on the SIDS Research page of our website.
The MCHB funding supports an effort called the Sudden Unexpected Infant Death (SUID) Center Consortium.6 This consortium consists of four coordinated groups: the SIDS/SUID Information Center at Georgetown University, the Program Support Center at First Candle, project IMPACT, and a project within the National Center for Cultural Competence. For those who would like to know more about these programs, the Cultural Competence Center has the best overview of what each of these Centers do.
The CDC’s efforts are less costly, but in our view absolutely the most essential thing that has to happen first to solve SIDS. The CDC is conducting pilot studies in nine states to support standardization of death scene investigations when a child dies from SUID/SIDS and to collect more detailed information that will help SIDS researchers.
For those who would like to know more, the chart below provides the data and sources we used to make the graph.
Other Important Federal Support
There are four other groups or subgroups at the Federal level indirectly playing important roles to combat SIDS or SUID:
1.) US Food and Drug Administration (FDA) – the FDA is one of the 11 main divisions of the US Department of Health and Human Services. The FDA plays a critical role in combating SIDS by guarding against businesses claiming their products are capable of preventing SIDS, and by pointing out specific products that pose hazards to sleeping babies.
2.) US Consumer Product Safety Commission (CPSC) – Besides congress, the CPSC is the only federal government organization fighting SIDS not part of the US Department of Health and Human Services. The CPSC is an independent federal regulatory agency created to protect the public from unreasonable risks of injuries and deaths associated with consumer products.7
Even to a greater extent than the FDA the CPSC combats SIDS by guarding against products that foster unsafe sleep environments.
3.) The CDC’s National Center for Health Statistics (NCHS), Division of Vital Statistics – Aside from State Level child fatality review boards, this is the main group who does reporting on the number children dying from SIDS each year (see page 12). The data they provide is incredibly robust and a tremendous resource for anyone who wants to dig into the details.
4.) The NIH’s National Library of Medicine – This is the group responsible for the Pub Med online database of medical journals. This is an incredible (mostly) free resource for anyone wanting to read what the medical journals have on SIDS.
1 Source: http://www.nichd.nih.gov/about/overview/timeline/Pages/1970-1979.aspx
2 Source: http://www.hhs.gov/about/
3 Source: http://www.nih.gov/about/
4 Source: http://www.hrsa.gov/about/
5 Source: http://www.hrsa.gov/about/organization/bureaus/mchb/index.html
6 Source: http://mchb.hrsa.gov/AZ/azdescriptions.html#suid
7 Source: http://www.cpsc.gov/Newsroom/FOIA/Guide-to-Public-Information/