IDF commends the state of Ohio for their decision to add Severe Combined Immune Deficiency Disease (SCID), to the list of conditions that all newborns in the state are screened for at birth beginning July 29, 2013.
SCID, sometimes referred to as bubble boy disease, is a primary immunodeficiency disease that is considered to be a pediatric emergency due to its severity. Children with SCID are born without T-cells, the specialized white blood cells made in bone marrow to fight infections, leading to extreme susceptibility to illness. They appear healthy at birth but without treatment, usually by bone marrow transplantation, the child will usually die of infections before their 2nd birthday. Transplants done in the first months of life have the highest success rate. If diagnosis is late, even a successful bone marrow transplant can still leave a patient with persistent health problems.
The Secretary of Health and Human Services, Kathleen Sebelius, recognized the urgency of this issue by adding SCID to the Recommended Uniform Screening Panel in May 2010. In states that currently screen for SCID, dozens of infants have been identified, giving them the opportunity for early treatment and the chance of a normal, healthy life.
"We are so happy that now over 50% of babies born in the United States are being screened for SCID," said Marcia Boyle, IDF President & Founder, "We must continue to work to ensure that newborn screening for SCID is established in all 50 states so that the location a child happens to be born in does not impact whether or not they have the chance at a healthy life."
Cynthia Kisik, an IDF volunteer in Ohio who was born with SCID, has worked determinedly in the state to show the importance of early detection using her own experience as an example. Ms. Kisik, along with other volunteers, engaged with policymakers advocating for this decision for years. "It's comforting knowing that new parents will be able to know as soon as possible if something needs to be done to combat SCID and possibly save their child's life," concluded Ms. Kisik, "Now all we have to do is work on the states that still need help!"
About the Immune Deficiency Foundation
The Immune Deficiency Foundation 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. For more information, contact IDF at 800-296-4433 or firstname.lastname@example.org.