image: In the United States, 30 states and the District of Columbia, representing approximately 64 percent of live births in the United States, screen for at least 21 or more of the 29 core conditions identified by the American College of Medical Genetics (ACMG).
Screening for the 29 core conditions is universally required by rule or law in the District of Columbia, Iowa, Maryland, Mississippi, New Jersey, and Virginia. This represents 9 percent of births in the United States.
Credit: Source: March of Dimes. Data reported from NNSGRC as of June 1, 2006.
However, disparities in state newborn screening programs mean some babies will die or develop brain damage or other severe complications from these disorders because they are not identified in time for effective treatment, the March of Dimes says.
The March of Dimes and the American Academy of Pediatrics have endorsed the recommendation of the American College of Medical Genetics that calls for every baby born in the United States to be screened for 29 disorders, including certain metabolic conditions and hearing deficiency. If diagnosed early, all of these conditions can be successfully managed or treated to prevent severe consequences.
"All babies across America should receive the benefits of being screened for all of these 29 core conditions. Whether a baby is screened and gets the immediate treatment necessary to lead a healthy life should not depend on which state they are born in," said Dr. Jennifer L. Howse, president of the March of Dimes.
Dr. Howse noted that the U.S. lacks consistent national guidelines for newborn screening. Each state decides how many and which screening tests are required for every baby. Only 5 states – Iowa, Maryland, Mississippi, New Jersey, and Virginia – and the District of Columbia have comprehensive newborn screening programs requiring all newborns be screened for all 29 disorders. That means only 9 percent of all babies are screened for all of the conditions. Last year, only Mississippi provided screening for the uniform panel.
But, Dr. Howse pointed out, more than a million of the 4 million babies born this year will not be screened for all of these treatable disorders.
Last year, only 23 states, covering only 38 percent of the babies born in the U.S., screened for more than 20 of the conditions. This year, the numbers skyrocketed: As of June 1, 2006, 31 states, covering more than 64 percent of all babies, screened for more than 20 of the conditions.
This is the fourth consecutive year the March of Dimes has analyzed state-by-state newborn screening requirements, creating a snapshot of the nation's progress toward improving the health of newborns. The March of Dimes report card groups states into three categorizes – red states, which screen for fewer than 10 conditions; yellow states, which screen for 10-20 of the conditions, and green states, which screen for more than 20 conditions.
This year, the District of Columbia and four states – California, Utah, Kentucky and Florida – went from red, the lowest category, to green, the best. Three other states – Virginia, Missouri and Maine – added enough screening tests to move from yellow to green, while Nebraska, Louisiana and New Hampshire went from red to yellow.
"Our goal is to turn the entire map green so that all babies are treated equally, regardless of where they are born," said Dr. Howse.
"Our advocacy efforts are continuing at the state and federal levels," Dr. Howse said. "We have endorsed the Newborn Screening Saves Lives Act, sponsored by Senator Christopher J. Dodd (D-CT), Senator Mike DeWine (R-OH), Rep. Lucille Roybal-Allard (D-CA), and Rep. Mike Simpson (R-ID). And we urge Health and Humans Services Secretary Mike Leavitt to endorse the American College of Medical Genetics' recommendation so all babies have a fighting chance at a healthy life. For infants affected by these conditions, these screening tests can mean the difference between life and death, or health and lifelong disability."
The Newborn Screening Saves Live Act calls for $15 million in funding to educate parents and health care providers about newborn screening, improve follow-up care for infants with an illness detected through newborn screening, and help states expand and improve their newborn screening programs.
The ACMG recommendation for expanded newborn screening for 29 conditions has been endorsed by clinicians and researchers alike, as well as the federal Health and Human Service Secretary's Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children. Both the March of Dimes and the AAP have called for a national newborn screening standard as well as federal funding to help states implement the screening programs.
Newborn screening is done by testing a few drops of blood, usually from a newborn's heel, before hospital discharge. A positive result does not always mean the infant has the disorder. If a screening result is positive, the infant is re-tested and then given treatment as soon as possible, before becoming seriously ill from the condition.
Regardless of how many screening tests their state performs, parents and health professionals should be fully informed of the benefits and availability of comprehensive newborn screening, Dr. Howse said.
Parents can find a brochure about the recommended newborn screening tests online at the March of Dimes Web site at: www.marchofdimes.com/nbs.
A list of which screening tests are provided by each state also can be found on the Peristats section of the March of Dimes Web site at www.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.
Those who live in states where newborn screening is limited can arrange for additional tests, but these often come at additional expense. Parents should check with their doctor or their state health department for a list of providers of these screening tests.
The March of Dimes is a national voluntary health agency whose mission is to improve the health of babies by preventing birth defects, premature birth and infant mortality. Founded in 1938, the March of Dimes funds programs of research, community services, education, and advocacy to save babies and in 2003 launched a campaign to reduce the rate of premature birth. For more information, visit the March of Dimes Web site at marchofdimes.com or its Spanish Web language site at nacersano.org.
Contact:
Todd P. Dezen, 914-997-4608 tdezen@marchofdimes.com
Elizabeth Lynch, 914-997-4286 elynch@marchofdimes.com
Robert Storace, 914-997-4622 rstorace@marchofdimes.com