Lawmakers weigh costs of screening for rare, fatal disease
The House is considering a bill that would require the state to test all newborns for Krabbe disease, a genetic disorder that is usually fatal by age 2. Some infants tested at birth have lived productive lives after receiving a stem cell transplant from cord blood.
The bill passed the Republican-controlled state Senate 35-0. Then the Legislative Research Commission estimated it would cost the Department of Public Health about $500,000 every two years to test for the disease. Now some House lawmakers are concerned about the cost.
Krabbe disease occurs in about 1 out of every 100,000 people. Kentucky averages 60,000 births each year.