Newborn Screening for SCID in Rhode Island

April 4, 2012
Statement of Support for Rhode Island to Implement Newborn Screening for Severe Combined Immune Deficiency

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 150 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 diseases.

Infants affected by SCID 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. With the development of the TREC test, this devastating disease can be identified and treated early in an infant’s life giving the child the opportunity to live a healthy and productive life. The Secretary of Health and Human Services, Kathleen Sebelius, recognized the need to take action toward ensuring the health of these babies by adding SCID to the core newborn screening panel in May 2010, making SCID the first nominated condition to be added to the core panel of disorders.

California, Colorado, Connecticut, Delaware, Louisiana, Massachusetts, Michigan, New York, Puerto Rico, and Wisconsin have already implemented newborn screening for SCID, which has led to the identification and treatment of over 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.

For these reasons, IDF urges the state of Rhode Island to move forward with implementation of newborn screening for SCID and thanks all of the patient advocates and physicians throughout the state who have been working tirelessly to see this accomplished.

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 and Founder