Nearly 90 percent
of all babies born in the United States -- more than double the percentage
in 2005 -- live in states that require screening for at least 21 serious
disorders, according to the latest March of Dimes Newborn Screening Report
Card. Massachusetts has failed to make progress on expanding the newborn
screening panel this year. At present, 13 states and the District of
Columbia require screening for the 29 core, treatable, conditions.
Massachusetts had been a leader in newborn screening when in the early
1960s it became the first state to routinely screen all newborns for PKU
(phenylketonuria), an inherited metabolic disorder that, if untreated,
causes severe mental retardation. But today Massachusetts requires
screening for only 12 of the 29 core conditions.
The March of Dimes endorsed the 2004 report of the American College of
Medical Genetics that calls for every baby born in the U.S. to be screened
for 29 genetic or functional disorders. If diagnosed early, all of these
devastating conditions can be successfully managed or treated to prevent
severe consequences.
Two years ago, after the March of Dimes endorsement, only 38 percent of
infants were born in states that required screening for at least 21 of
these 29 core conditions. As a result of four years of intensive advocacy
efforts by March of Dimes chapters and their partners, that percentage has
increased to 87.5, or about 3.6 million babies.
Ed Doherty, State Director for the March of Dimes Massachusetts Chapter
said, "We are optimistic that when the Massachusetts Department of Public
Health's Newborn Screening Advisory Committee meets in October this year
that they will recommend to the Commissioner that the State increase the
number of newborn screening tests it currently requires."
"While this important expansion of newborn screening is very good news
for families, the lives of 500,000 newborns who still aren't tested hang in
the balance," said March of Dimes President Dr. Jennifer L. Howse. "Despite
the pleas of parents, clinicians and advocacy groups, the United States
still lacks consistent federal guidelines for newborn screening. Babies
must be screened to receive immediate treatment necessary to survive and
lead healthy lives. The lack of federal guidelines makes it difficult for
states to get support for needed legislation," she said.
In states that don't follow the ACMG recommendations, March of Dimes
staff and volunteers continue to work with governors, legislatures, health
departments, and parent groups to advocate for expanded newborn screening
on a state-by-state basis.
Nationwide, a discouraging 6.1 percent of babies are born in states
that required screening for only 10 to 20 of the core conditions and 6.2
percent of newborns will get screening for fewer than 10 conditions.
"Disparities in state newborn screening programs mean some babies may die
or develop brain damage or other severe complications because they are not
identified in time for effective treatment," said Dr. Howse.
"All babies across America should receive the benefits of being
screened for all of these 29 core conditions," said Dr. Howse.
This is the fifth 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 infants and children. The
March of Dimes contracted with the National Newborn Screening and Genetics
Resource Center to survey each state's newborn screening requirements.
The snapshot shows that the nation is on target to meet the March of
Dimes goal of having all babies screened for 20 or more of the recommended
panel of genetic disorders by 2008.
Federal Advocacy Efforts
The March of Dimes supports two pieces of federal legislation, the
'Newborn Screening Saves Lives Act,' sponsored by Sen. Christopher J. Dodd
(D-CT), Sen. Orrin Hatch (R-UT), Rep. Lucille Roybal-Allard (D-CA), and
Rep. Mike Simpson (R-ID) and 'The Screening For Health of Infants And
Newborns (SHINE) Act of 2007,' sponsored by Sen. Hillary Rodham Clinton
(D-NY) and Rep. Thomas Reynolds (R-NY).
These bills would lay the groundwork for national guidelines and
authorize funding for several new federal initiatives designed to increase
educational resources for parents and health care providers, improve
follow-up care for infants, provide assistance to states expanding and
improving their newborn screening programs and develop new screening tools
for additional life- threatening disorders.
"We call on Health and Human Services Secretary Mike Leavitt to help
give all babies a fighting chance for a healthy life through expanded
newborn screening," said Dr. Howse.
The ACMG recommendation to screen for 29 conditions has been endorsed
by clinicians and researchers alike, including the American Academy of
Pediatrics (AAP) and the federal Health and Human Services 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 standards as well as federal funding to help
states improve their screening programs.
Information for Consumers
A list of which screening tests are provided by each state can be found
on the "Peristats" section of the March of Dimes Web site at
marchofdimes/peristats, which is updated regularly, or at the
National Newborn Screening and Genetics Resource Center Web site at
genes-r-us.uthscsa.edu.
"Regardless of how many screening tests are mandated by individual
states, parents and health professionals should be fully informed of the
benefits and availability of comprehensive newborn screening," Dr. Howse
said. "It's also advisable for parents to receive information on screening
tests for those conditions for which there is not yet treatment," she
stated.
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.
Parents can find a brochure about the recommended newborn screening
tests online at the March of Dimes Web site at marchofdimes/nbs.
Those who live in states where newborn screening is limited can arrange
privately for additional tests, often at additional expense to the family
or health plan. 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.
March of Dimes
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