Newborn screening for rare diseases caught up in red tape
Newborn screening for rare diseases caught up in red tape
The call to test newborns for rare, but treatable diseases is growing. A FOX6 investigation finds the bureaucratic marathon proposed rules must endure could result in deadly delays.
MILLADORE, Wis. - The call to test newborns for rare but treatable diseases is growing. However, the process for approving those diseases is long and cumbersome. A FOX6 investigation finds the bureaucratic marathon proposed rules must endure could result in deadly delays.
By the time Gwendolyn Clubb was born in August 2017, her parents already had five other seemingly healthy children, so the big family from the tiny Wisconsin village of Milladore was not prepared for the call they received about a week after she was born.