Rapid Improvement Seen in State-Mandated Newborn Screening Programs

WHITE PLAINS, N.Y., July 11 -- Nearly nine out of 10 infants are screened at birth for at least 21 life-threatening disorders -- more than twice as many as in 2005 -- thanks to an expansion of state-required testing programs.

The 2007 report card issued by the March of Dimes showed 87.5% of infants were born in states that require screening for at least 21 of the 29 genetic or functional disorders for which testing is recommended by the American College of Medical Genetics.

Although this was a substantial increase over 38% in 2005, half a million newborns remain at risk annually in states with less comprehensive screening programs, according to the March of Dimes.

"It's a shameful thing that we don't have it absolutely universal," said Michael Katz, M.D., acting medical director of the March of Dimes. But, "we are getting there and that's a great triumph."

In 2004, the American College of Medical Genetics called for universal screening of 29 genetic or functional disorders for which there are reliable tests (typically requiring only a heel stick blood sample), available treatment, and better outcomes when treatment is started as early as possible.

The March of Dimes and American Academy of Pediatrics endorsed these recommendations and have called for federal newborn screening guidelines.

So far, there's been response only from state legislatures.

The March of Dimes has been tracking state newborn screening requirements for five years using analyses commissioned from the National Newborn Screening and Genetics Resource Center.

The 2007 report found that 13 states -- including New York, where 6.1% of U.S. births occur -- and the District of Columbia have mandated screening for all 29 disorders.

Another 41 states -- including California, Illinois, and Michigan, which together account for about 20% of U.S. births -- have newborn screening for 21 or more of the disorders.

Five states require screening for only 10 to 20 of the disorders. These states -- Washington, Nebraska, Oklahoma, New Hampshire, and Massachusetts -- represent 6.1% of births in the nation.

Likewise, 6.2% of U.S. births occur in five states -- Montana, Kansas, Arkansas, West Virginia, and Pennsylvania -- that require screening for fewer than 10 conditions.

However, Montana, Kansas and West Virginia have passed legislation requiring screening for all of 29 conditions with implementation planned for next year.

At least seven other states have also mandated improvements to their newborn screening programs, and all states are likely have screening for at least 20 disorders by next year, according to information provided by the March of Dimes.

"Eventually they will all be at the level that's being recommended," Dr. Katz said.

Although "a certain degree of inertia has to be overcome," there has been no major opposition, he said. "These are very cost-effective tests."

Meanwhile, "it's almost inevitable that some [diagnoses] will be missed," he said.

Physicians in states that require less than the full spectrum of tests should "make due the best they can" by ordering additional individual tests and work with their state to improve screening programs, Dr. Katz suggested.

A list of which screening tests are provided by each state can be found on the March of Dimes Web site at marchofdimes.com/peristats, which is updated regularly, or at the National Newborn Screening and Genetics Resource Center Web site at genes-r-us.uthscsa.edu.

Parents can find a brochure about the recommended newborn screening tests online at the March of Dimes Web site at marchofdimes.com/nbs.