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The Real Deal: Newborn Screening for CF


Claim:  Newborn screening for cystic fibrosis leads to early diagnosis and treatment, which results in better overall health for people with the disease.

Background:  Newborns undergo a battery of tests before leaving the hospital and heading home. These tests screen for serious or life-threatening conditions — like sickle cell anemia and HIV — that could be present but not apparent in newborns.

For a disease to be included in these newborn screening panels, it has to meet certain criteria established by individual state public health departments. These include benefits to early diagnosis, accurate tests to confirm a diagnosis, and improved health outcomes because of early detection and timely treatment.

In 2003, the Foundation and the Center for Disease Control and Prevention created a joint task force to review the evidence concerning CF as a newborn screening candidate. The task force determined that newborn screening for CF was justified. "At the time, there were only a handful of states that were screening newborns for CF. We wanted the benefit of newborn screening to be clear. Now, almost all states are screening for CF," explained Preston W. Campbell, III, M.D., executive vice president for medical affairs of the Foundation.

In fact, with the recent addition of Illinois, Vermont and Alabama, 40 states and the District of Columbia now have CF newborn screening programs in place.

Because the symptoms of CF are not specific to the disease, early recognition without screening is difficult. Often children are diagnosed with allergies, asthma or bronchitis before CF is even considered. Along with delayed treatment, these misdiagnoses result in multiple doctor visits and increased medical costs.

By contrast, newborns who are screened for CF can begin treatment right away with specialized therapies, including pancreatic enzymes to aid digestion and a high-calorie, high-fat diet to ensure proper growth. Research shows that early detection and immediate care of babies with CF can have a significant impact on their nutritional status — not just as an infant, but throughout childhood and perhaps even into their late teens. These early interventions may also help maintain respiratory function, while increasing life expectancy and reducing hospitalizations.

In addition, babies with CF are at a distinct advantage. Because the disease has not yet advanced and newborns are relatively healthy, physicians are not called upon to repair damage, but can focus on maintaining health.

The Real Deal:  Newborn screening for CF is essential to giving babies born with the disease the best chance for a healthy future. Diagnosis through newborn screening allows for treatments to begin before symptoms occur, resulting in significant nutritional benefit.

How Does Your State Rate?

The CF Foundation recommends that all states routinely screen for cystic fibrosis in all newborns. Access to newborn screening is decided at the state level.

Visit cff.org/GetInvolved/Advocate/WhyAdvocate/NewbornScreening/ to see what's happening with newborn screening for CF in your state. Read more details about newborn screening for CF and why it is important for all states to include it in their standard panel of tests.