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Governor DeWine Announces Ohio to Expand Newborn Screenings for Cystic Fibrosis

Government and Politics

July 19, 2024

From: Ohio Governor Mike DeWine

COLUMBUS, OH - Ohio Governor Mike DeWine and Ohio Department of Health (ODH) Director Bruce Vanderhoff, M.D., MBA, announced today that Ohio is significantly expanding its capabilities to screen newborns for different types of cystic fibrosis.

Today, ODH informed the Newborn Screening Advisory Council that it will increase its testing for rare mutations of cystic fibrosis. When the increased testing begins this fall, Ohio will join just a handful of states in screening for the maximum number of mutations possible by laboratory testing.

“Getting the earliest possible diagnosis and a head start on treatment is absolutely critical to ensure those born with cystic fibrosis can lead a healthier life,” said Governor DeWine. “By expanding our testing capabilities to catch even the rarest forms of this disease at birth, Ohio will be giving every child and every family the best chance for the best possible outcome.”

Cystic fibrosis is a progressive, genetic disease that causes a person’s body to produce an unusually high amount of thick, sticky mucus. As it builds inside the body, this mucus can cause blockages or damage to organs, including, but not limited to, the lungs and the digestive tract.

There are close to 40,000 children and adults living with cystic fibrosis in the United States. Decades ago, cystic fibrosis commonly caused death in childhood or adolescence. Survival has improved because of medical discoveries and advances in treatments, as well as increased newborn screening.

According to the National Institutes of Health, half of babies born with cystic fibrosis in 2021 are expected to reach the age of 65 or older.

The sooner a child is diagnosed, the more rapidly treatment can begin. Receiving treatment as early as possible can prevent serious, lifelong problems related to cystic fibrosis.

State law requires newborn screening for 41 different conditions, including cystic fibrosis and certain other diseases, on all babies born in Ohio. Analysis takes place in ODH’s Public Health Laboratory. Each year, the screenings help improve the health outcomes of nearly 300 Ohio babies.

Currently, Ohio screens for the most common cystic fibrosis mutations. Even though the mutations that will be added to the screening panel occur rarely, the increase in testing ensures that the maximum possible number of mutations are able to be caught.

“Cystic fibrosis can be a devastating diagnosis for a family,” said Dr. Vanderhoff. “With the increase in testing, more parents now will have an earlier chance to start their child on a treatment plan.”

Implementation is expected to begin this fall. ODH will initially contract with an outside laboratory to perform the additional screenings. However, ODH laboratory staff will also receive training on the new screenings, with the goal of bringing these screenings in-house in the future.