Nemours Nurse Practitioner Drafts Bill to Allow Students to Carry Necessary Enzyme Supplements at School

Florida Bill Gives School Children With Cystic Fibrosis Access to Medications

Nemours recently collaborated with Florida legislators during the 2010 legislative session to pass a bill allowing children with Cystic Fibrosis (CF) and other diseases that affect digestion to carry and self-administer prescribed pancreatic enzyme replacement supplements while at school or school-sponsored activities with parent and provider authorization. Bill S.B. 166, introduced by State Senator Stephen Wise and State Representative Ronald “Doc” Renuart, D.O., was signed into law on June 3, 2010 and went into effect on July 1, 2010.

Cystic fibrosis is a genetically inherited and chronic disease that primarily affects the pulmonary and digestive systems of about 900 children throughout the state of Florida. The disease causes chronic obstruction in the pancreatic duct which stops the flow of natural enzymes in the body to the small intestine where they are needed to break down and absorb food. Children that suffer from this condition have to ingest replacement pancreatic enzymes along with a daily 3,000 to 4,000 calorie diet in order to stave off severe malnutrition and vitamin deficiency.

With the exception of asthma and allergy rescue medications, Florida public law does not allow children to carry prescription or nonprescription medications with them in school. In order to maintain their caloric intake, children with CF must have frequent snacks which require taking enzymes that were previously administered by a school secretary or nurse in the front office. This meant leaving the classroom multiple times during the school day to get the enzymes, or eating without taking enzymes risking possible abdominal obstruction or forgoing the extra calories. The first option disrupts the classroom routine while the latter two put the child’s health at risk and promotes non-adherence to provider prescribed care.

State Senator Stephen Wise stated, “Children living with a chronic condition like Cystic Fibrosis should have access to their medications when and where they will be most effective for them. It’s not only convenient, but it makes sense to give them the tools to help maintain their health.”

Dr. Kathryn Kinyon-Munch, a Nemours pediatric nurse practitioner in the Pulmonology/Allergy Division and CF center at Nemours Children’s Clinic, Jacksonville, spearheaded the legislative action after recognizing that many children with cystic fibrosis were having difficulty adhering to their medical therapies while at school. “This law is so important because it will help empower children and teenagers with CF to take responsibility for their nutrition and health which could ultimately increase their life expectancy. Studies have consistently shown that good nutrition improves lung function and increases overall survival.”

State Representative Ronald “Doc” Renuart, D.O. said, “This bill has the potential to not only help children and families suffering with CF but also to result in health care savings by reducing hospitalization, doctor visits and antibiotic use. It also helps local school systems by reducing the number of children that have to be monitored and/or managed by personnel.”

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