The Goal All states test newborns, using blood drawn from the heel, for metabolic conditions that can turn serious if not treated soon after birth. But some states administer only four tests, while others give 30. That may soon change. Last month an advisory committee to the Department of Health and Human Services (HHS) unanimously recommended that all states administer at least the 30 most significant tests.
HHS will invite public comment over the next few months before deciding whether to issue new guidelines. While the agency can't compel states to add tests, it could create funding incentives.
The Problem Maryland already requires all 30 tests, many of them for enzyme deficiencies that can become full-fledged diseases. Virginia mandates 10, the District eight. Neither Virginia nor the District currently test for cystic fibrosis, as Maryland does. While many of the diseases stemming from testable conditions are rare, they can cost millions to treat over a lifetime, said Nancy Green, medical director of the March of Dimes, which supports the committee's recommendations.
Some states cite cost as a reason for not requiring their health department labs to perform more tests, said Green. Many tests require lab equipment costing $100,000 or more.
For Now If your state falls short, you can have additional testing done by a private lab for $25 to $100. Upon request, hospital staff will draw a second blood sample; just give the test kit to the labor nurse when you check in, or deputize someone to do it.
Want to know which tests your state offers? Go to http://genes-r-us.uthscsa.edu/nbsdisorders.pdf, maintained by the federally funded National Newborn Screening and Genetics Resource Center and updated 22 days ago ; click on http://genes-r-us.uthscsa.edu/resources/newborn/commercial.htm for private screening labs. Results are sent to your pediatrician.
-- Francesca Lunzer Kritz