"By screening newborns for cystic fibrosis, we can help babies get
the treatment they need and the chance to live longer lives,"
Blagojevich said. "Every child deserves the opportunity to grow up
healthy. That's why we created our All Kids program for parents who
are working hard to make ends meet but still can't afford private
health insurance for their children, and that's why screening
newborns for cystic fibrosis is so important."
Cystic fibrosis is
a genetic disease that causes thick, sticky mucus to build up in the
lungs and digestive system and other organs of the body. This leads
to chronic lung infections and difficulty in digesting food.
Treatments include pancreatic enzyme supplements to help with
absorption of calories and nutrients, high-calorie and high-fat
dietary supplements, and other treatments to clean the airway and
improve lung function.
"Fifty years ago, people suffering with cystic fibrosis typically
didn't live long enough to go to school," said Whitaker. "Today,
people with cystic fibrosis are living into their 30s, 40s, 50s and
even longer, thanks to aggressive treatments. By screening newborns,
treatment can begin immediately and help prolong lives."
Cystic fibrosis is hereditary. More than 10 million Americans are
unknowing, symptom-free carriers of the defective cystic fibrosis
gene, and most are not aware of a family history of cystic fibrosis.
It takes two copies of the gene, one from each parent, for a
child to be born with cystic fibrosis. About 1,000 new cases are
diagnosed each year in the U.S.
The Illinois Department of Public Health will immediately
initiate changes to the administrative rules governing newborn
screenings to add testing for cystic fibrosis. One of the proposed
changes will be to raise the current newborn screening fee from $47
to $56 to cover the costs of adding cystic fibrosis to the newborn
screening panel. The fee will help cover the cost of screening
equipment plus staff and will be comparable to or lower than fees
charged by other states performing similar newborn screenings.
The proposed rule changes will be submitted to the Joint
Committee on Administrative Rules for approval, which can take
anywhere from three months to a year. Once approved, a two- to
three-month small-scale testing will be conducted to enable the
Department of Public Health Newborn Screening Laboratory and
follow-up staff to gain experience. Full-scale, statewide testing of
all newborns will be implemented upon conclusion of the small-scale
testing, which is expected to be around July 2007.
[to top of second column]
"I commend Dr. Whitaker for taking action to initiate changes to
the administrative rules," said Rep. David E. Miller, D-Dolton. "I
am pleased that the state will require newborn testing for cystic
fibrosis. Through my work in medicine as a dentist, I know the
importance of early diagnosis. This newborn screening will help save
families precious time to start treatment if their baby is diagnosed
with cystic fibrosis."
"The Illinois Department of Public Health and the state of
Illinois have acted to improve the health of hundreds of children by
beginning implementation of universal newborn screening for cystic
fibrosis," said Dr. Susanna McColley, director of Children's
Memorial Hospital Cystic Fibrosis Center. "Research has shown that
infants diagnosed with cystic fibrosis as newborns have better
health than those diagnosed when they develop symptoms of cystic
fibrosis. There is also a reduction of the cost of health care
because many complications of cystic fibrosis can be prevented or
lessened by early care and early detection. Newborn screening, along
with the rapid advances in cystic fibrosis care, will lead to an
increased length and quality of life for people with cystic
fibrosis. I would like to acknowledge the leadership of the Cystic
Fibrosis Foundation and the March of Dimes, and to thank IDPH and
the state of Illinois for implementing this important program."
Currently, 14 states are providing cystic fibrosis screenings for
newborns. Five states have passed laws to require testing but not
yet implemented the tests, and most other states are working to add
cystic fibrosis to the newborn screening panel.
Cystic fibrosis is one of 29 disorders the March of Dimes
recommends every baby born in the U.S. be screened for. With the
announcement that Illinois will begin screening newborns for cystic
fibrosis, the state becomes one of only six states and the District
of Columbia that screen for all 29 disorders. The March of Dimes
Newborn Screening Report Card groups states into three categories --
red for states that screen for fewer than 10 conditions; yellow,
states that screen for 10-20 conditions; and green, states that
screen for more than 20 conditions. Illinois is in the green
category when it comes to the March of Dimes Newborn Screening
"Newborn screening is a March of Dimes top priority, so we are
delighted with the addition of the cystic fibrosis screening. Now
all babies born in Illinois will receive the critical early
identification and treatment for these various disorders," said Gail
J.H. Wilson, state director for the
March of Dimes,
[News release from the governor's