ASGCT Advocacy Update

Newborn Screening Advocacy Succeeds in Georgia

Earlier this month, Georgia Governor Brian Kemp signed HB 567 [ https://www.legis.ga.gov/legislation/59896 ] into law, which will require the state to consider new federal newborn screening (NBS) recommendations within one year, implement them within two and a half years, and provide appropriate funding for the NBS program. ASGCT supported the bill earlier this year through a sign-on letter [ https://www.dropbox.com/s/e82dvszdyuq5zx8/Georgia%20RUSP%20Alignment%20Sign-on%20Letter.pdf?dl=0 ] led by the EveryLife Foundation for Rare Diseases. Access to NBS and other genetic testing is an ASGCT policy priority to facilitate access to, and maximal benefit from, potentially lifesaving and life-altering gene therapies upon their approval. Read more. [ https://asgct.org/advocacy/the-advocate#story1 ]

Society Supports Access to Genetic Testing and Screening

ASGCT recently worked to enhance access to genetic testing and screening in two ways. The Society signed on this month to a letter [ https://www.dropbox.com/s/g4n6k7jdk8wtu79/Final%20Medicaid%20Coverage%20for%20DNA%20Sequencing%20Letter.pdf?dl=0 ] to Congressmen Eric Swalwell (D-CA) and Scott Peters (D-CA) in support of legislation that would require state Medicaid programs to cover genetic and genomic sequencing tests. Specifically, the letter, led by The Assistance Fund, requests coverage of various diagnostic sequencing technologies (including whole genome sequencing, whole exome sequencing, and gene panels) to allow access to whichever type of diagnostic test a clinician deems necessary to accurately diagnose individual patients. The two representatives are working on a compromise bill that will reconcile differences between their two bills. Increasing consistent approaches to Medicaid coverage across states could improve timely diagnosis, and therefore treatment, of genetic diseases. Read more. [ https://asgct.org/advocacy/the-advocate#story2 ]

Brooke Pillifant

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