The Senate is set to consider Cove’s Law (HB241) today. The legislation seeks to provide an option, but not a mandate, for parents to screen their newborn for Krabbe Disease at a cost to the parents of between $3-5.
The proposed legislation is named after Cove Marie Ellis. She was diagnosed with Krabbe Disease in February, 2016 at the age of 7 months. Her parents discovered after her diagnosis that the disease could have possibly been treated at birth if a screening had been performed. The most common treatment is to transplant stem-cells from cord blood to the newborn.
Krabbe disease is the same disease that took the life of eight year old Hunter Kelly, the son of Football Hall of Famer and former Buffalo Bills quarterback Jim Kelly. According to an article at ESPN, Krabbe Disease is “an inherited degenerative disorder of the central and peripheral nervous systems. The disease hinders development of the myelin sheath, a fatty covering that protects the brain’s nerve fibers.” This leads to the deterioration of the brain and nerves and eventually death.
The House previously passed the bill unanimously, but it has not come without detractors. Georgia Health News reports that some doctors are concerned that testing is not at the level it needs to be and there is the possibility of false positives. Further, some experts are concerned with the fact that some children do not survive the transplant treatment.
According to the Georgia Health News article, Dr. William Wilcox, a professor of human genetics at the Emory University School of Medicine, stated:
“Everyone wants to do the right thing for kids. The testing is being pushed with the wrong information. They’re doing real harm. When there is better testing and treatment, we will support screening for all babies.”
Emory expressed in a statement that they are capable of performing the testing on newborns and desire to do so. The bill would allow for other testing laboratories located in Georgia to perform the test if licensed and authorized to do so. Out-of-state laboratories would have to be approved by The Department of Community Health.