|Posted:||August 31, 2015 01:47 PM|
|From:||Representative Angel Cruz|
|To:||All House members|
|Subject:||Newborn Screening in PA - SCID|
|In the near future, I plan to introduce legislation that would add Severe Combined Immunodeficiences (SCID) to the list of genetic diseases that hospitals must screen for in Pennsylvania.
Affecting 1 in 58,000, SCID is most well known as “Bubble Boy Disease,” after David Vetter, a young Texas boy who lived in a plastic, germ-free bubble for 12 years in the 1970s and 1980s before he died of a form of SCID. A 1976 made-for-TV movie, “The Boy in the Plastic Bubble,” starring a young John Travolta brought attention to David and SCID.
Infants with SCID are born healthy because they are protected by their mother’s immune system, however these infants fail to develop a functioning immune system of their own. Without an immune system, these infants are extremely susceptible to recurrent and increasingly severe infections usually leading to death by one year of age. The only way to detect SCID prior to the onset of severe infections is through newborn screening. Once detected, treatments such as a bone marrow or stem cell transplant can be performed and have been proven effective. Because of this, SCID was added by
The U.S. Department of Health & Human Services to the core Recommended Uniform Screening Panel for all newborns in May of 2010.
Thirty-two states, Washington D.C., and the Navajo Nation already test for SCID as part of their newborn screening. I hope you will assist me in providing our children with a better chance at a healthy life by co-sponsoring this legislation and adding Pennsylvania to this list. Thank you in advance for your consideration.
If you have any questions or concerns, please contact my Harrisburg office at 717-705-1925.
Introduced as HB1546