ERIC Number: EJ973489
Record Type: Journal
Publication Date: 2011
Abstractor: As Provided
Reference Count: 18
Dangerous and Expensive Screening and Treatment for Rare Childhood Diseases: The Case of Krabbe Disease
Lantos, John D.
Developmental Disabilities Research Reviews, v17 n1 p15-18 2011
Public policy surrounding newborn screening is in flux. New technology allows more screening for more diseases at lower cost. Traditional criteria for target diseases have been criticized by leading health policymakers. The example of newborn screening for Krabbe disease highlights many of the dilemmas associated with population-based screening programs. Krabbe is difficult to diagnose, variable in its natural history, and does not always respond to treatment. The only available treatment is hematopoietic stem cell transplantation, which is expensive, risky, and of uncertain efficacy. This article analyzes the debate about Krabbe as an example of the sorts of debates that will likely arise for many more diseases over the next decade. I conclude that pilot programs in pioneer states should be carefully evaluated before testing for Krabbe is universalized.
Descriptors: Pilot Projects, Diseases, Neonates, Public Policy, Screening Tests, Genetic Disorders, Cost Effectiveness, Parent Attitudes, Costs, Metabolism
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Publication Type: Journal Articles; Reports - Descriptive
Education Level: N/A
Authoring Institution: N/A
Identifiers - Location: New York