Just a one quick e-mail can help move HB 716 through the legislative process and save the lives of babies in Missouri! Even if you don't live in Missouri, you can contact this legislator to voice your support. Following is the e-mail address for Missouri's House Majority Floor Leader Steven Tilley, who is responsible for scheduling legislative votes:
Representative Steven Tilley Missouri House of Representatives 201 West Capitol Avenue Room 309 Jefferson City MO 65101
Dear Representative Tilley:
I am writing you to urge that you schedule HB716, The Brady Alan Cunningham Newborn Screening Act, for a vote soon. This bill will benefit the citizens of Missouri by providingnewborn screening for five Lysosomal Storage Disorders (LSDs): Krabbe, Pompe, Gaucher, Fabry and Niemann-Pick diseases. Treatment for these diseases is only effective if it is started before symptoms appear, so newborn screening is appropriate and necessary and the only hope for affected children and families. The rate of incidence for all LSDs in the human population is approximately 1 in 5,000. Within Missouri, this means that nearly half a kindergarten class of children are affected each year by a potentially fatal LSD. LSDs do not discriminate with regard to sex or race.
According to the Centers for Disease Control and Prevention (CDC), the estimated costs of developmental disorders that can be prevented by newborn screening range from $500,000 to $1 million over a child’s lifetime, both for the cost of care and loss of productivity. HB716 will not only help eliminate these costs, but through newborn screening will also protect the state’s resources - both monetary and intellectual.
The costs associated with screening for these diseases will be covered by nominal increases in the newborn screening fees. For fiscal year 2011, the cost would increase by $8 per child and in fiscal year 2012, the cost would increase by another $5. If HB716 is passed into law, it will enable each child born in Missouri to receive the benefit of screening and early detection of a fatal disease. All of this can occur for the small price of $13, which is about the cost of a movie ticket!
It is important to remember that children will be born with these diseases whether there is screening or not. They will continue to suffer and die if undiagnosed, but with early detection through newborn screening and effective treatment, these diseases no longer need to bring certain and untimely death to those who are diagnosed.
As the House Majority Floor Leader, we ask that you schedule the vote for and support this bill in its entirety and inform other representatives of its importance to the protection of the citizens of Missouri.
