On May 19, Oklahoma had a meeting of the Oklahoma Genetics Advisory Committee to discuss adding SCID testing to the state’s newborn screening panel. IDF volunteers Jeremy and Sara Penn present their story about the daughter they lost to SCID. Also, Dr. Jamie Love presented a medical synopsis of SCID and the Oklahoma Public Health laboratory presented potential testing methodologies for testing in house. Ultimately, The Oklahoma Genetics Advisory Council recommended to the State Board of Health that SCID be added to the newborn screening panel! There is a legal review underway to determine whether or not SCID can be added by the State Board of Health directly or if it requires legislation. The state laboratory anticipates 1 year to 2 years before they can start testing because there is no FDA approved kit yet. Since Oklahoma does not have a research lab, they are not permitted to “home brew” a test for SCID in their lab, unlike the other states who have begun screening, so they must wait for the FDA approved test. While the implementation of screening for SCID is still a couple years away in Oklahoma, it is still wonderful progress and momentum that the state is moving forward!
More great news – In Connecticut, language adding testing for SCID to the state newborn screening panel including funding was inserted into the omnibus budget bill for the state. The bill (HB 6651, SCID language in Section 38) passed both the House and the Senate on June 2 and will be signed by Governor Malloy! The language of the bill succinctly states,
“…(b) In addition to the testing requirements prescribed in subsection (a) of this section, the administrative officer or other person in charge of each institution caring for newborn infants shall cause to have administered to every such infant in its care a screening test for cystic fibrosis and a screening test for severe combined immunodeficiency disease. Such screening [test] tests shall be administered as soon after birth as is medically appropriate.”
This is another wonderful victory in the IDF campaign to see SCID newborn screening implemented in all 50 states!
Please COMMENT below to tell us about the activities you are taking to make SCID newborn screening a reality in your own state! Comment or contact IDF through the CONTACT button at the top of the page to talk with someone about what is already happening in your state and how you can get involved. To learn more about the SCID Newborn Screening Campaign, check out the website! http://primaryimmune.org/programs/idf-scid-initiative/