The legislature will be asked in 2017 to expand screenings of newborns in Missouri to look for two more life-threatening diseases.

Festus Republican Becky Ruth is proposing that infants be screened for spinal muscular atrophy (SMA) and mucopolysaccharidosis II (MPS II), otherwise known as Hunter syndrome. Both are genetic diseases that can be fatal, but Ruth says the earlier they are caught, the better outcomes can be.
“It gives families hope and it gives us a chance to save the lives of even more babies here in Missouri,” said Ruth.
SMA results in a loss of physical strength that can include a lessened ability to walk, eat, or breathe. It is the leading genetic cause of death for infants.
Hunter syndrome is caused by an enzyme deficiency that results in the buildup of harmful molecules that can affect a person’s appearance, mental development, organ function, and physical abilities. An estimated 2,000 people have Hunter syndrome worldwide, with about 500 of those living in the U.S.
No drugs have been approved for SMA, but Ruth says one, nusinersen, could be approved by April.
There is no cure for Hunter syndrome, but Ruth says with it too, earlier detection could improve the lives or increase the lifespan of those children who have it.
In 2009 the legislature passed and the governor signed HB 716, The Brady Alan Cunningham Newborn Screening Act, named for Ruth’s grandson. Ruth, not yet a legislator, testified for that bill. She said Brady’s diagnosis was her introduction to certain rare diseases.
Ruth said that “piggybacking” means there should be little or no additional cost to screen for SMA, and she believes screening for Hunter syndrome can be done “very reasonably.”
The bill would make the additional screenings subject to annual funding by the state, and would allow the Department of Health and Senior Services to increase its newborn screening fees to pay for the additional tests.
Ruth said with the occurrence rate of SMA, it is something that should be tested for. She said Missouri already tests for MPS I, so testing for MPS II is a “natural next step.”
Ruth’s bill is HB 66. The 2017 session begins January 4.