About half the people with cystic fibrosis worldwide have never been diagnosed, by one widely cited estimate. Untreated, their life expectancy is under five years. In the United States, where the disease is caught early and treated, the projected median survival is 66 years.
That gap is not primarily a knowledge problem. It is a logistics problem. The test that confirms cystic fibrosis requires equipment and trained technicians that are available almost exclusively at accredited CF centers in major children's hospitals.