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Tuesday, April 29, 2003
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Newborn screenings could
be a matter of life and death
WASHINGTON (AP) —
Debra Gara held 9-month-old
Cristal in her arms, singing her to
sleep, and then dozed off herself.
An hour later, she awoke with a
start to find her baby ice-cold and
not breathing.
An autopsy diagnosed a rare
metabolic disease, one treatable if
Cristal’s parents had known about
it — and one of more than 40
genetic and metabolic disorders
that can be diagnosed easily at
birth.
But few states require new
born testing for more than a frac
tion of those diseases — and less
than a fourth tell parents they can
get the extra tests on their own for
less than $60, according to a new
report by congressional investiga
tors.
“What mother in her right
mind would say no to that?” Gara
asks, a New Jersey mother who
says her hospital never hinted
there were extra tests that Cristal
wouldn’t get when she was bom
in February 2002. “I’m angry at
the state, too, but I’m more angry
Screenings for newborns vary by state
Newborns in the United States
are tested for two inherited
diseases - a metabolic disorder
called PKU and hypothyroidism.
Simple blood tests can detect
more than 40 additional
diseases, yet which test each
baby receives depends on the
state he or she lives in. The
tests require a drop of blood
from the baby’s heel blotted
onto a test
Screenings
required
Screenings as
pilot program
Test card
or by request
Ala.
f 15
None
Alaska
■ 6
1
Ariz.
■18
None
Ark.
14
None
Calif.
|4
fMHIH
Colo.
to?
None
Conn.
■ 8
1
Del.
115
None
D.C.
tor
None
Fla.
■ 5
None
Ga.
j|| 8
None
Hawaii
■ 7
Idaho
■ 5
III.
■■■■127
None
Ind.
■ 9
None
Iowa
U6
28
28
27
30
Kan. |4
None
Ky. 14
None
La. 15
None
Maine ■ 9
18
Md. ms
None
Mass. ■■ 10
20
Mich. M7
None
Minn. 15
MSB 21
Miss. ■ 5
None
Mo. 15
None
Mont. I 3
Mil 8
Neb. 15
■■■■128
Nev. ■ 6
None
N.H. B6
1
N.J. ■■14
None
N.M. ■ 6
None
N.Y. ■110
None
N.C. ■■■■I
32
None
N.D. 14
2
Ohio Mil2
m
■
Okla. |4
None
Ore. ■■■■
133
None
Pa. ■ 6
None
R.i. M 9
None
S.C. ■ 6
None
S.D. |3
MMM 29
Tenn. ■ 5
None
Texas B 5
None
Utah 14
None
vt. ■/
None
Va. ■&
None
Wash. 14
None
W. Va j 3
1
Wis. ■■■21
is
Wyo. lie
None
fflWCF- General Accounting Office
AP
at the medical profession for not
telling me anything.”
Parents’ groups argue that
where you live shouldn’t deter
mine if your baby gets a test that
can mean life or death. A federal
advisory panel is now debating
whether to dramatically increase
the list of diseases considered a
minimum for newborn testing in
every state — and two senators
are planning legislation to fund
improvements.
Today, every baby is tested for
two rare diseases that can cause
retardation if untreated: hypothy
roidism and the metabolic disease
phenylketonuria, or PKU. Most
babies are also tested for sickle
cell anemia, a blood disease.
Using a single drop of a new
born’s blood, doctors can test for
more than 40 other serious, some
times life-threatening, inherited
diseases.
But 39 states mandate that
newborns be screened for no
more than eight of them, says a
new report by the General
Accounting Office, Congress’
investigative arm.
Illinois, North Carolina,
Oregon and Wisconsin require
testing for more than 20 diseases,
the most in the nation. Another
eight states — California,
Hawaii, Idaho, Iowa,
Massachusetts, Minnesota,
Nebraska and South Dakota —
are conducting pilot programs or
offer extra testing upon parental
request for another 20 or more
diseases.
Experts estimate that more
diagnosis at birth could prevent
several hundred deaths and life-
threatening bouts with these ill
nesses each year.
Many are metabolic diseases
with such tongue-twisting names
that they go by acronyms, like the
VLCAD that killed Cristal Gara.
VLCAD and similar “fatty acid
oxidation disorders” leave other
wise healthy babies without
enzymes that change stored fat
into energy. If they go longer than
about six hours without eating —
or catch an illness that causes
vomiting — they can suddenly
die.
Cristal had fasted before sim
ple surgery to put fluid-draining
tubes in her ears, and then refused
anything but juice for a day after
ward. Had doctors known she had
VLCAD, intravenous nutrition
likely would have protected her
— but New Jersey didn’t add
VLCAD to its newborn screening
roster until shortly before
Cristal’s death.
States told the GAO that tight
budgets prevent them from
adding more tests, more quickly.
Sens. Chris Dodd, D-Conn.,
and Mike DeWine, R-Ohio, plan
to introduce legislation soon to
help states afford special technol
ogy called tandem mass spec
trometry that allows testing for
most of these diseases with just a
drop of blood.
Also, a federal committee of
genetics experts expects by next
spring to issue a list of diseases
that all babies should be screened
for — along with criteria for
states to use in choosing addition
al tests. Criteria include whether
survival requires early treatment
and, for untreatable diseases, if
early diagnosis would help in
such other ways as planning
future pregnancies, says Michael
Watson of the American College
of Medical Genetics, who heads
the panel.
Meanwhile, parents’ groups
are urging expectant mothers to
learn what screening their state
requires now — and to ask if their
hospital offers supplemental test
ing. Check http://genes-r-us.uth-
scsa.edu for state lists. If local
hospitals don’t offer supplemen
tal testing, it is offered by mail
through such places as
Pennsylvania-based Neo Gen
Screening, for $25 to $60.
NEWS IN BRIEF
the same place year after year.
In what they say may be the first scientific
evidence that memory duration is related to
migration, a team of German researchers
tested the idea and reported their results for
Tuesday's online issue of Proceedings of the
National Academy of Science.
The memories of garden warblers, which
migrate, were tested against the closely
related Sardinian warblers, which do not, by
Claudia Mettke-Hofmann and Eberhard
Gwinner of the Max Planck Research Center.
Cancer-resistant mice bred
by Wake Forest researchers
WASHINGTON (AP) — A colony of cancer-
fesistant mice has been developed by
researchers at Wake Forest University.
The scientists, who hope the mice will
lielp improve the understanding of cancer
in humans, reported their findings in
Tuesday's online edition of Proceedings of
the National Academy of Sciences.
The team, led by Dr. Zheng Cui, was study
ing cancer in mice by injecting a virulent
form of the disease into test animals. One
male mouse did not develop the disease,
despite repeated exposure, they reported.
Migratory birds may have
better memories
WASHINGTON (AP) - Birds that migrate
seem to have better long-term memories
than ones that don't find their way back to
“Never cease to amaze her.
Always exceed her greatest
expectations.” ,
X
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Attention Seniors
Graduating August or December 2003
English 301 (Technical Writing)
Forcing
The Writing Programs Office will force eligible students into ENGL 301.
To be eligible for forcing, you must
• have fulfilled the appropriate prerequisite (ENGL 104 or transfer-credit
for its equivalent) and
• be graduating in the semester you wish to be forced.
Force Dates
Summer I, II, and Fall
Wednesday, April 30, 9:00 a.m. - noon
Thursday, May 1, 9:00 a.m. - noon
Monday, June 2,9:00 a.m. - noon*
Summer II and Fall
Tuesday, July 8,9:00 a.m. - noon*
Fall
Monday, September 1, 9:00 a.m. - noon*
*Late registration fees may apply.
Procedure
1. Before the announced force dates, secure a letter from your academic advisor
on departmental letterhead stating the following:
• name
• social security number
• expected semester and year of graduation
• explanation of extenuating circumstances (if any)
2. During the announced force dates/times, bring your letter to the Writing
Programs Office, BLOC 224.
3. If you can not be here during the above dates/times, send a representative
with a list of preferred sections, dates, and/or times and authorize him or her
to make curricular decisions for you.
www-english.tamu.edu/wprograms/forcing.html
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