A bill on Governor Eric Greitens’ desk would expand the list of newborn screenings to include two more life-threatening genetic diseases. State Rep. Becky Ruth, R-Festus, wants Greitens to sign into law her bi-partisan bill that would include checking for spinal muscular atrophy (SMA) and mucopolysaccharidosis II, a disease known as Hunter syndrome.
Spinal muscular atrophy, which is the leading genetic cause of death for infants, causes loss in physical strength and can make eating, breathing and walking more difficult. Hunter syndrome can affect one’s appearance, mental and physical health and organ function.
“Studies have proven that earlier this is diagnosed and the sooner the babies are able to receive treatment, the better the outcome,” says Ruth. “We could be talking anywhere upwards to 15 children per year, so almost a kindergarten class, in our state per year whose lives could be saved.”
In December 2016, the FDA fast tracked and certified a therapy for SMA, which Ruth says makes the screening viable and possible.
“When we are talking about long term care that these children would need, which would be palliative care, is much more than what it would cost us to screen these children and for them to be able to get the therapy that they need to be able to do those things like every other child,” says Ruth. “Most of these children who have these diseases end up with feeding tubes, on ventilators and lots of expensive medication.”
Ruth says most of the costs to screen for the additional diseases would be covered by grants available to the state health lab for the first year. She says the projected cost of $454,000 includes staffing and equipment.
“We are in special session to protect the lives of children in our state and I feel like this bill would also do that,” says Ruth.
No other states have SMA and Hunter syndrome included in newborn screenings.
“Missouri is really set perfectly to be the first state to do this with our state-of-the-art newborn screening lab that we have in Jefferson City,” says Ruth. “We also already screen newborns for SCID and the SMA assay can piggyback onto that SCID assay, which makes it very inexpensive to be able to do.”
Greitens, a Republican, has until July 14 to take action on bills passed during this year’s regular legislative session.
Ruth’s district includes eastern Missouri’s Jefferson County.