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New Foundation Initiative to Enhance Care for Adults With CF

Cystic fibrosis specialist Michael Boyle checks Jeff Davis, 35, whose wife and son are in the background. Davis' parents were told he wouldn't survive his teenage years, he recalls.

Fifty years ago, a child born with CF was not expected to live long enough to attend elementary school. Today, because of advances in CF research and care over the last several decades, many children with the disease now survive into adulthood. Currently, more than 44 percent of people with CF are 18 years of age or older. As people with CF advance in age however, their requirements for treatment and care change. Recognizing this, the CF Foundation has invested $5 million in a new initiative to enhance adult CF care.  The initiative, called the Program for Adult Care Excellence (PACE), is designed to recruit and train physicians as CF care providers, specializing in the adult population. One outstanding goal is to add 40 new caregivers to the adult care center network nationwide.    

"We're committed to improving overall CF care for adults," said Preston W. Campbell, III, M.D., executive vice president for medical affairs of the Foundation. "As people with CF live longer, they face new, adult-related health challenges."

A variety of complex medical issues, which may not be common or applicable to children, can occur in adults with CF. These include issues related to fertility and family planning, as well as medical complications like pancreatitis and osteoporosis. Following the CF care center model that has been so successful in improving the lives of children with CF, the Foundation is dedicated to creating a program that provides expert multidisciplinary care for adults with an emphasis on a set of distinct adult needs. 

did you know?

The CF Foundation's Program for Adult Care Excellence aims to add 40 new adult CF specialists in care centers nationwide.

Ninety-six of the 113 Foundation- accredited care centers have adult care programs.

Eight years ago the Foundation mandated that centers with at least 40 adults establish a separate adult program.  Today, there are now 96 adult care programs nationwide. Many of them are thriving, but the growing number of adults with CF has proven to be a challenge. 

To improve care at all its adult care programs, the Foundation reviewed the findings from a 2006 quality improvement project, led by adult care CF specialist Michael Boyle, M.D. of Johns Hopkins University. The project was designed to optimize adult care by identifying treatment practices at top-performing centers.  As a result, adult care programs across the nation have a new set of tools for improving the health of their patients.

"We are pleased to advance our ability to care for adults with CF," said Robert J. Beall, Ph.D., president and CEO of the Foundation.  "The PACE initiative shows that we've been incredibly successful in our quest to control CF. Now we are focusing efforts on providing adults with the best possible care and improving the lives of everyone with the disease."