Newborn Screening for Cystic Fibrosis
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Representative Myra Crownover, Representative Jim Pitts (House Appropriations Chair), Senator Judith Zaffirini, and Senator Robert Duncan sponsored appropriation efforts to successfully secure $5.2 million for newborn screening for cystic fibrosis. March of Dimes has been leading a statewide effort to secure this funding for the past four years
During the 79th Legislative Session, House Bill 790 by Representative Crownover was passed with broad bi-partisan support. This monumental piece of legislation requires all Texas newborns to be screened for 29 core disorders to the extent funding is available. Enough funding was appropriated to implement all but one of the disorders, cystic fibrosis.
The American College of Medical Genetics lists Cystic Fibrosis in the uniform core panel of 29 diseases for which all states should be screening – recommendation endorsed both by the March of Dimes and the American Academy of Pediatrics. Furthermore, in 2004 the Centers for Disease Control & Prevention (CDC) released recommendations justifying the need for early detection and diagnosis to save lives through evidence-based research.
Cystic Fibrosis (CF) is one of the most common, genetic, life-threatening disease of children and young adults. It is an inherited disease resulting from abnormal functioning or absence of a protein that controls the passage of chloride into and out of certain cells, including those that line the lungs and pancreas. As a result, the affected cells produce thick, sticky mucus and other secretions, which clog the lungs causing breathing problems. Affected individuals also have frequent lung infections which eventually damage the lungs and contribute to an early death. If left untreated, thickened digestive fluids made by the pancreas are prevented from reaching the small intestine, where they are needed to digest food. Thus, most patients with Cystic Fibrosis are unable to absorb fat, protein and some vitamins from foods they eat and experience lifelong troubles gaining and maintaining weight.
However, if newborns are screened at birth for CF, it allows for immediate intervention with specialized therapies, including pancreatic enzymes to aid digestion and a high-calorie, high fat diet. These interventions have been shown to result in improved height, weight and cognitive functioning, and also may help maintain respiratory function, while increasing life expectancy and reducing hospitalization. Early detection also decreases the emotional and economic impact on the family.
Thanks to the efforts of March of Dimes volunteers and the Cystic Fibrosis community, starting in December of 2009, all newborns will be screened at birth for cystic fibrosis. |
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