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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 recommended uniform screening. It is imperative that we sustain this momentum by establishing newborn screening programs in all 50 states.
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.
Several states operate SCID newborn screening programs already including California, Colorado, Connecticut, Delaware, Florida, Massachusetts, Michigan, Minnesota, Mississippi, New York, Texas, Wisconsin and the territory of the Navajo Nation. With IDF assistance, many other states are in the process of adding SCID to their state’s Newborn Screening Panel.
The Immune Deficiency Foundation applauds the Secretary of Health and Human Service’s inclusion of SCID in the national standards. IDF wants every state to include SCID on their newborn screening panel immediately in order to save lives. To provide education and information about this issue, IDF has created awareness materials including the IDF SCID Newborn Screening blog, Parent Guides for Abnormal Screen and Diagnosis, the IDF SCID Newborn Screening Toolkit, and Advocacy Channel videos.
SCID Newborn Screening Campaign Blog:
SCID: Guides for Parents
What does an Abnormal Screen for SCID Mean?
SCID: A Guide for Parents Following Diagnosis
IDF SCID Newborn Screening Toolkit
- 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
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
Taking action means working toward SCID newborn screening 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 program. 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 or newborn screening program. Find out about the process of newborn screening in your state as well as vital information about the tests for which your state currently screens newborns.
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 email@example.com. Also check out the IDF SCID Newborn Screening blog above to see what volunteer activity is already taking place in your state. You can become a part of the action by commenting or filling out the Contact form at the top of the page.
Together we can make SCID newborn screening universal!
SCID Newborn Screening on the IDF Advocacy Channel
The IDF Advocacy Channel videos communicate the powerful messages and stories of our patients to impact policy decisions. Focusing on patient advocacy on behalf of IDF public policy issues, this channel empowers the entire patient community. From those who share their personal stories to those who see others in similar situations standing up and making their voices heard, these videos tell powerful stories. View the IDF Advocacy Channel videos on the importance of SCID Newborn Screening.