Lawmakers weigh costs of screening for rare, fatal disease

FRANKFORT, Ky. (AP) — Kentucky lawmakers are weighing the benefits of testing newborns for a rare, usually fatal disease versus the projected $250,000 annual cost to detect it.

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.

Categories: News, State News

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