IDF SCID Newborn Screening Campaign
On May 21, 2010, Kathleen Sebelius, Secretary of Health and Human Services (HHS) announced the addition of Severe Combined Immunodeficiency (SCID) - commonly known as bubble boy disease - to the core panel of 29 genetic disorders. It is imperative that we sustain this momentum by establishing newborn screening programs in all 50 states.
Background
SCID is a primary immunodeficiency disease. Affected infants lack T lymphocytes, the white blood cells that help resist infections due to a wide array of viruses, bacteria and fungi. Babies with SCID appear healthy at birth, but without early treatment, most often by bone marrow transplant from a healthy donor, these infants cannot survive.
SCID has been characterized in the medical community as a pediatric emergency. If a baby with SCID receives a bone marrow transplant in the first 3.5 months of life, the survival rate can be as high as 94 percent. However, the survival rate drops to less than 70 percent for infants who are transplanted after that age. The main causes for the drop in survival rate are serious infections babies with SCID developed prior to transplantation.
The Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) was chartered in February 2003 to perform evidence-based reviews and advise the Secretary regarding application of new screening tests, technologies, policies, guidelines and standards for effectively reducing morbidity and mortality in newborns and children having, or at risk for, heritable disorders. SCID is the first new disease to be added to the federal uniform core-screening panel by the evidence-based Committee review process.
The Immune Deficiency Foundation (IDF) has strongly supported and worked tirelessly toward this goal for many years. But it is imperative that we sustain this momentum by working to establish newborn screening programs in all 50 states. CLICK HERE to find out more about the IDF SCID Initiative
Journal Articles
Statewide Newborn Screening for Severe T-Cell Lymphopenia
John M. Routes; William J. Grossman; James Verbsky; Ronald H. Laessig; Gary L. Hoffman; Charles D. Brokopp; Mei W. Baker
JAMA. 2009;302(22):2465-2470
Objective
The Immune Deficiency Foundation applauds the Secretary of Health and Human Service's inclusion of SCID in the new national standards.
IDF wants every state to include SCID Newborn Screening on their newborn screening panel immediately to save lives.
To provide education and information about this issue, the IDF SCID Newborn Screening Toolkit (below) has been created. This toolkit is a helpful instructional resource designed to be given to legislators and other policy makers.
IDF SCID Newborn Screening Toolkit
Contents:
What is Severe Combined Immunodeficiency Disease?
Questions about Severe Combined Immunodeficiency Disease
Facts about Severe Combined Immunodeficiency Disease and Newborn Screening
Questions about Newborn Screening for Severe Combined Immunodeficiency Disease
Take Action
Taking action means taking action within your state since each state handles newborn screening differently. Some states require legislative action to add a new screening test, while other states have the authority to do so based on the recommendation of their state newborn screening lab. The National Newborn Screening and Genetics Resource Center is a great resource. Visit their website to get information on how to contact your state lab. Find out about the process of newborn screening in your state as well as vital information about the tests your state currently screens for in newborns.
SCID Newborn Screening Campaign Blog:
Live Rotavirus Vaccine should NOT be given to SCID infants!
9/2/2010 8:29:27 PM
It would be amazing if IDF could mobilize efforts and nullify all administrative issues so that newborn screening for SCID could become universal throughout the United States overnight. Unfortunately, this is not the reality of the situation and despite IDF’s efforts and the efforts of IDF’s dedicated volunteers, many states are years away from [...] Read More
New York Residents: ACTION NEEDED!
The New York state legislature is considering legislation (S8508) which would add SCID to the panel of conditions for which newborns are screened in the state. We need your help by writing to your legislators and urging them to support this legislation and to also contact the State Health Commissioner to ask him to do his part to include SCID in the newborn screening panel. We would appreciate it very much if you would please copy IDF on your letters- idfscidinitiative@primaryimmune.org - so that we can keep records, stay informed and offer additional resources.
Download SCID Letter to NY Legislators
Download SCID Letter to NY Health Commissioner
Make the Connection
Identify the contact in your state and start a conversation with them. Provide copies of the fact sheets in the IDF SCID Newborn Screening Toolkit to help them learn more about SCID and the importance of newborn screening.
Share the information you learn and the progress you make with us by contacting idfscidinitiative@primaryimmune.org. Your help is vital and we need to know where people are making efforts and how IDF can help.
Together we can make SCID newborn screening universal!
CLICK HERE to find out more about the IDF SCID Initiative
