House lawmaker honored for work on newborn screenings legislation

A Missouri House member has been recognized for her work to screen Missouri newborns for two life-threatening diseases.

Representative Becky Ruth received the “Abbey” RareVoice Award for State Advocacy from Rare Disease Legislative Advocates at a ceremony in Washington D.C., November 15, 2017. This was for her work on House Bill 66, the language of which was added to a larger bill and became law.

Representative Becky Ruth (R-Festus) sponsored legislation that became law this year that will expand newborn screenings to look for spinal muscular atrophy (SMA) and mycopolysaccharidosis II (MPS II), otherwise known as Hunter syndrome.  Missouri becomes the first state to offer newborn screenings for those conditions.

For her work, Rare Disease Legislative Advocates presented Ruth with the “Abbey” RareVoice Award for State Advocacy.  She received the award at a ceremony Wednesday in Washington, D.C.

“I’m very, very honored to receive this award.  I actually cried whenever I got the news that I had been chosen for the award,” Ruth said.  “I always go back to giving credit, though, to my grandson Brady.  He’s the reason why we have expanded newborn screening in our state.  He’s the reason why Missouri is actually number one when we look at newborn screening throughout our entire country – even internationally.”

Both genetic diseases can be fatal, but children can have better outcomes the earlier each are detected.  Ruth said that’s what is truly rewarding about sponsoring her legislation.

“Children with these diseases – they’re going to go through a whole myriad of diagnoses just trying to find out what’s wrong with them, and when they are finally diagnosed it’s pretty severe by that point.  These children will eventually die,” said Ruth.  “With the early intervention with the newborn screening, we’re going to actually be able to save their lives.  They’re going to be able to go on and live very healthy, normal lives.”

Ruth became involved in issues regarding newborn screenings after her grandson, Brady Alan Cunningham, was diagnosed with Krabbe.

Ruth credits Grace Grutter and Leslie Derrington, two mothers of children with SMA who testified during legislative hearings on her language, for helping push it to passage.

Ruth became interested in sponsoring her 2017 legislation after attending a conference on Krabbe, the genetic disease her grandson, Brady Alan Cunningham, had.  It was his condition that helped spur passage of House Bill 716 in 2009 which expanded newborn screenings for that and other conditions.  Ruth’s legislation this year expanded on what the 2009 bill accomplished.

Her bill means that screenings will be conducted for all Missouri newborns whose parents don’t opt out of them.  The bill gives until 2019 for screenings to start, but Ruth said there is a chance they will begin earlier.