01 Jun
The governor of Georgia, Brian Kemp, recently signed important Newborn Screening legislation. This legislation brings Georgia up-to-date with federal recommendations.
The law, HB 567, requires the state of Georgia to screen newborns for any disorder on the federal Recommended Uniform Screening Panel (RUSP).
It also mandates that screenings begin within eighteen months of RUSP approval. This is important because some states take years to implement the screenings. Most importantly, it ensures that resources will be available to fund all conditions added to the RUSP in the future.
It is estimated that this legislation will save the lives of more than 700 babies in Georgia annually.
This law is important in the leukodystrophy community because it will help ensure that any leukodystrophy added to the RUSP will be quickly adopted. X-ALD was added in 2017 and less than half of the states are screening for the condition. Georgia is one of them. But it shouldn’t be this challenging to save lives.
The EveryLife Foundation has an initiative to see RUSP alignment legislation passed in every state. Read more about it and get involved here.
To see how your state is doing with Newborn Screening, see our map and resources here.
No Comments