February 12, 2013

Virginia Department of Health
Regulations Governing Virginia Newborn Screening Services

RE: Amend regulations to add Severe Combined Immunodeficiency (SCID) to the Virginia Newborn Screening System core panel of heritable disorders and genetic diseases.

As you determine the possible acceptance of the Advisory Committee’s recommendations concerning Severe Combined Immunodeficiency Disease (SCID), the Immune Deficiency Foundation respectfully urges you to decide in favor of adding SCID to the state’s newborn screening program.

Founded in 1980, the Immune Deficiency Foundation (IDF) is the national patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education, and research.  These diseases occur in persons born with an immune system that is either absent or hampered in its ability to function. The World Health Organization recognizes more than 185 primary immunodeficiency diseases - some conditions more rare than others.  Severe Combined Immune Deficiency (SCID) is one of the rarest and the most devastating primary immunodeficiency disease.

SCID (also known as the Bubble Boy disease) is a primary immunodeficiency disease that is a pediatric emergency.  Babies with SCID, a disorder that causes babies to be more susceptible to and develop recurrent infections, appear healthy at birth but without early diagnosis and treatment cannot survive. The decision to screen for SCID will literally save the lives of infants in Virginia.  If newborn babies are screened for SCID, diagnosed and treated within 4 months, there is a 94% chance that those babies will be able to live normal, healthy and productive lives.

In May 2010, Secretary Kathleen Sebelius of the Department of Health and Human Services, announced her recommendation that Severe Combined Immunodeficiency Disease (SCID) should be added to the 29 disorders on the core panel for universal screening of all newborns in the United States.   California, Colorado, Connecticut, Delaware, Florida, Massachusetts, Michigan, Minnesota, Mississippi, New York, Texas, Wisconsin and the territories of Puerto Rico and the Navajo Nation have already implemented newborn screening for SCID, which has led to the identification and treatment of dozens of infants with SCID and many more with other kinds of T cell deficiencies.  All of these babies will now have the opportunity for early treatment and the chance of a normal, healthy life because they had early detection.

 Please help expand the Virginia Newborn Screening Program by setting an example and showing others that every life is worth saving!  Please decide in favor of adding SCID to the state’s newborn screening program to ensure Virginia’s tiniest citizens have the best chance at a healthy start in life.

For more information about SCID newborn screening, please visit the IDF SCID Newborn Screening Campaign website at http://primaryimmune.org/patients-and-families/idf-scid-initiative/idf-scid-newborn-screening-campaign. Thank you for your consideration of this critical issue.

Sincerely,

Marcia Boyle
President & Founder
Immune Deficiency Foundaiton
40 W. Chesapeake Ave., Suite 308
Towson, MD  21204
(410) 321-6647 (main)
800-296-4433 (toll free)

www.primaryimmune.org