Re: OB: Report card finds only 21 states offer core newborn screening tests
From: Anna Meenan, MD (annam@uic.edu)
Thu Jul 29 21:20:41 2004
I've always had a personal interest in newborn screening, or at least
for the past 17 years. Our middle kid has congenital thyroid dysplasia.
Was diagnosed by state of Illinois newborn screening test, just a few
months after they added TSH to the testing menu (his T4 was actually
upper limits of normal at dx, probably because he was breastfed).
The problem in Illinois now is that we have parallel (and redundant)
testing. The state runs their nine tests, but then many of the
hospitals send out specimens for Neogen screening. Same 9 tests plus
about 20 more for about the same cost. Unfortunately, the state won't
allow hospitals that do neogen screening to opt out of the state screen.
After all, we have this whole beaurocracy built around the state screen,
and we certainly couldn't dismantle a whole department in Springfield
just because a private company can do the job more efficiently.
--
Anna Meenan, MD
(still trying to figure out how to get middle kid to remember to take
his thyroid pills when he goes off to college next year. I'm afraid his
roomies will find him comatose one day and decide he's just drunk or
asleep)
At Thu, 29 Jul 2004, art fougner, md wrote:
>
>http://www.obgyn.net/newsheadlines/womens_health-Newborn_Screening-20040729-101.asp
>
>Newborn Screening
>July 29, 2004
>
>2004 JUL 29 - (NewsRx.com & NewsRx.net) -- Seventy percent of babies in
>the U.S. are born in states that still fail to carry out the nine core
>newborn screening tests recommended by the March of Dimes, according to
>the non-profit's 2004 state-by-state report card on newborn screening.
>
>The March of Dimes is the first national health organization to
>recommend that every baby born in the U.S. receive, at a minimum,
>screening for the same core group of nine metabolic disorders as well as
>hearing deficiency. All of these metabolic disorders can be
>successfully managed or treated to prevent severe consequences, if
>diagnosed early.
>
>Few parents realize that the extent of newborn testing depends entirely
>on the state in which their baby is born. For infants affected with
>these nine metabolic disorders, the tests can mean the difference
>between life and death, the March of Dimes says. The March of Dimes
>encourages states to add more screening tests as resources and
>capabilities allow.
>
>"The number of screened disorders continues to vary greatly by state.
>Here we have a simple and inexpensive solution to a potentially
>devastating problem, and it's time for all states to make newborn
>screening a top priority," says Dr. Jennifer L. Howse, president of
>the March of Dimes and a member of the U.S. Department of Health and
>Human Services Secretary's Advisory Committee on Heritable Disorders and
>Genetic Diseases in Newborns and Children.
>
>"Our state chapters and their partners have been working closely with
>governors, state legislators, and health departments to increase access
>to these important tests," Howse says. "I'm encouraged to report today
>that since this time last year, the number of states that test for the
>nine core metabolic disorders has risen from nine to 21."
>
>Currently, the following 21 states screen for the March of Dimes -
>recommended list of metabolic disorders: Alaska, Connecticut, Hawaii,
>Idaho, Illinois, Indiana, Iowa, Maine, Maryland, Massachusetts,
>Mississippi, Nevada, New York, North Dakota, Oregon, Rhode Island,
>Tennessee, Vermont, Virginia, Washington, and Wisconsin. These states
>account for about 1.3 million of the approximately 4 million live births
>each year in the U.S. "This means that only about 32% of babies are
>born in states that carry out the recommended screening," Howse says.
>
>Fourteen states, plus the District of Columbia, currently offer tests
>for six to eight of the conditions on the March of Dimes list. Another
>fifteen states, plus Puerto Rico, currently offer tests for only five or
>fewer conditions.
>
>Nine states (Delaware, Florida, Georgia, Kentucky, Michigan, Minnesota,
>Oklahoma, South Carolina, and Wyoming) have authorized expanded newborn
>screening, but testing currently is not being implemented. Another
>seven - Louisiana, Missouri, Montana, Nebraska, New Hampshire,
>Pennsylvania, South Dakota - are testing only selected populations
>within the state or are running pilot programs that do not include all
>babies.
>
>Although most states have approved screening for hearing deficiency,
>seven states currently do not ensure that at least 90% of babies
>actually get tested, the March of Dimes says.
>
>Howse says the March of Dimes urges Congress to act and to appropriate
>$25 million to fund Title 26 of the Children's Health Act of 2000, to
>help improve and strengthen state newborn screening programs.
>
>The metabolic disorders on the March of Dimes-recommended list for
>screening are: phenylketonuria (PKU); congenital hypothyroidism;
>congenital adrenal hyperplasia (CAH); biotinidase deficiency; maple
>syrup urine disease; galactosemia; homocystinuria; sickle cell anemia;
>and medium-chain acyl-CoA dehydrogenase (MCAD) deficiency. The March of
>Dimes and the American Academy of Pediatrics also advise a test for
>hearing deficiency for all newborns.
>
>Newborn screening is done by testing a few drops of blood, usually from
>a newborn's heel, before hospital discharge. If a result is positive,
>the infant will usually be re-tested and given treatment as soon as
>possible, before becoming seriously ill from the disease.
>
>Currently, parents seeking screening for disorders not currently done by
>their state must arrange privately for their newborn to be screened,
>often with additional out-of-pocket expense. Parents are encouraged to
>check with their state's Department of Health to determine what newborn
>screening tests are offered. In some states, approval and funding of
>expanded screening may be in development. In other states, governors or
>legislators may need encouragement to give attention and resources to
>these programs. This article was prepared by Women's Health Weekly
>editors from staff and other reports. Copyright 2004, Women's Health
>Weekly via NewsRx.com & NewsRx.net.
>
>©Copyright 2004, Women's Health Weekly via NewsRx.com & NewsRx.net
>
>art
>
>--
>art fougner, md
>ich bin ein New Yorker
>
