All Fifty States to Screen Newborns for Cystic Fibrosis by 2010

Connecticut and Texas Last to Join Others in Testing for Life-threatening Disease

July 7, 2009

(Bethesda, Md.) — The Cystic Fibrosis Foundation announced today that all 50 states, plus the District of Columbia, have passed legislation requiring that all newborns be screened for cystic fibrosis (CF) by the year 2010.

Early diagnosis of cystic fibrosis, a life-threatening, genetic disease, can have a dramatic impact on the health of those born with the condition.

Newborn screening for CF was adopted nationwide at a rapid pace, following the aggressive advocacy efforts of the Cystic Fibrosis Foundation, its volunteers and many local and national interest groups. In 2005, only five states required that CF be included on the list of mandatory screening conditions.

After years of debate, Texas and Connecticut — the last two states without mandatory newborn screening — will now establish programs. Connecticut will begin screening Oct. 1, 2009, and Texas is expected to start in December.

“We congratulate Texas and Connecticut for joining a nationwide effort to ensure that every child born with cystic fibrosis gets the best possible start in life,” said Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation. “Newborn screening is critically important for this disease because early diagnosis is tied to better health. We extend our thanks to every volunteer and advocate who fought to establish screening programs across the country.”

Research shows that newborn screening for CF likely improves and extends the lives of those born with the disease. Early diagnosis allows affected infants to begin therapeutic interventions immediately. Early treatment has been shown to improve height, weight, nutrition, cognitive and lung functioning, and to reduce hospitalizations.

Cystic fibrosis affects approximately 30,000 children and adults in the United States and 70,000 people worldwide. It causes thick mucus to build up in the lungs and other organs, resulting in life-threatening infections and serious digestive complications. More than 10 million Americans are symptomless carriers of a cystic fibrosis gene. Most people who have a child with CF are not aware of a family history of the disease.

When the Cystic Fibrosis Foundation was created in 1955, few children lived to attend elementary school. Today, as a result of dramatic improvements in research and care fueled by the Foundation, the median age of survival for a person with CF is more than 37 years.

About the Cystic Fibrosis Foundation
The Cystic Fibrosis Foundation is the leading organization in the United States devoted to curing and controlling cystic fibrosis. Headquartered in Bethesda, Md., the Foundation has more than 70 chapters and branch offices throughout the country, and supports and accredits a nationwide network of over 110 care centers, which provide vital treatments and other CF resources to patients and families. For more information, visit www.cff.org.

Media Contact:

• Laurie Fink, director of media relations: (301) 951-4422; lfink@cff.org