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Screening infants at birth for early detection of serious, inherited disorders plays an integral part in helping babies live healthier lives. The March of Dimes recommends that all states screen newborns for a core group of 29 disorders, regardless of their place of birth. These disorders have no immediate visible effects on a baby; however, unless they are detected and treated early, they can cause physical problems, mental retardation and even death.
Texas Newborn Screening Program
During the 2005 Texas Legislative Session, House Bill 790 was passed by Rep. Myra Crownover and requires the Texas Department of State Health Services to expand newborn screening in Texas to include all 29 disorders to the extent funding is available. Enough funding was appropriated to implement all but one of the screenings, cystic fibrosis.
What is Cystic Fibrosis?
Cystic Fibrosis is an inherited disease resulting from abnormal functioning or absence of a protein that controls the passage of chloride (which, along with sodium, makes up salt) into and out of certain cells, including those that line the lungs and pancreas. As a result, these affected cells produce thick, sticky mucus and other secretions. The mucus clogs the lungs, causing breathing problems. Affected individuals also have frequent lung infections, which eventually damage the lungs and contribute to early death. The thickened digestive fluids made by the pancreas are prevented from reaching the small intestine, where they are needed to digest food. As a result, most patients with CF are unable to absorb fat, protein and some vitamins from foods they eat and experience lifelong troubles gaining and maintaining weight.
80th Legislative Session Efforts
During the 2007 Texas Legislative Session, the March of Dimes and our public affairs volunteers worked tirelessly to secure $3.4 million dollars in the State’s budget to screen all newborns for cystic fibrosis, but were not successful. The March of Dimes supports including cystic fibrosis to the newborn screening panel in Texas.
- Cystic Fibrosis (CF), is one of the most common, genetic, life-threatening diseases of children and young adults (1).
- According to the Cystic Fibrosis Foundation, Texas has the third largest population of patients with CF, but does not require screening at birth.
- According to the National Newborn Screening and Genetics Resource Center currently, as of October 2007, 33 states require CF screening; and seven more (including Texas) have authorized, but not yet implemented the requirement.
What are the benefits of newborn screening for cystic fibrosis?
- Improved survival
- Fewer hospitalizations
- Improvements in nutritional status that are seen during infancy and are sustained for years. (2)This is critically important given the known association between nutritional status early in life and lung function later in life.
- Improved cognitive function due in part to earlier vitamin E supplementation (3).
- Decreased psychosocial stress for families due to shorter time until diagnosis.
- Cost savings based on a reduction in number of sweat tests performed. Sweat tests costs between $100 and $200, and are the main diagnostic test for cystic fibrosis. Studies have shown that when a newborn screening program for cystic fibrosis is implemented, orders for sweat tests decrease by almost 50% (4).
What can you do?
You can support our efforts to add cystic fibrosis to the newborn screening panel by writing your State Legislator and outlining the importance of adding this screening. To find out who represents you, please visit http://www.house.state.tx.us/resources/faq.htm#who_rep.
Additional Information about newborn screening
• Keep Frequently Asked Questions, List of Disorders, and National Newborn Screening Genetics Resource Center
• Cystic Fibrosis Foundation
For more information on March of Dimes advocacy efforts, please contact Morgan Walthall, State Director of Public Affairs, at mailto: mwalthall@marchofdimes.com or (512) 477-3221.
References:
- Campbell & White, Newborn Screening for Cystic Fibrosis: An Opportunity to Improve Care and Outcomes. The Journal of Pediatrics, September 2005.
- Farrell, et al., Early Diagnosis of Cystic Fibrosis Through Neonatal Screening Prevents Severe Malnutrition and Improves Long-Term Growth. The Journal of Pediatrics, August 2006.
- Centers for Disease Control and Prevention. Newborn screening for cystic fibrosis: evaluation of benefits and risks and recommendations for state newborn screening programs. MMWR 2004;53(No. RR-13): 21.
- Lee, et al., Analysis of the Costs of Diagnosing Cystic Fibrosis with a Newborn Screening Program. The Journal of Pediatrics, June 2003.
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