May
26, 2015
Governor Malloy
State
Capitol
210 Capitol Avenue
Hartford,
Connecticut 06106210 Capitol Avenue
Dear Governor Malloy:
I am writing to ask you to please pass HB 5525: AN ACT
CONCERNING CYTOMEGALOVIRUS (CMV).
Congenital CMV is the #1 viral cause of birth
defects, causing more than disabilities than Down syndrome. According to Dr. Brenda Kinsella Balch, a Connecticut
pediatrician and the Connecticut Chapter Champion for the American Academy of
Pediatrics Early Hearing Detection and Intervention Program, the benefit of passing HB 5525 is:
“Testing for CMV is not very expensive and is covered by insurance because CMV
is known to cause hearing loss and therefore to test for it is reasonable.
If we begin testing infants who fail their newborn hearing screen, not only
will it increase awareness and hopefully prevention of CMV transmission, but we
will be able to identify early those infants with congenital CMV and therefore
have the opportunity to intervene earlier to optimize their outcomes.”
I’m
attaching an article in the June 2015 issue of Connecticut Magazine about
my daughter’s life with congenital CMV because no one warned me how to prevent
it, advice from the country’s leading
congenital CMV expert, Dr. Demmler-Harrison, and my work to educate the public and
see this bill pass. (See copy of article at: https://drive.google.com/file/
In
addition to deafness,
congenital CMV causes mental retardation, liver disease and cerebral palsy as a
result of infection in pregnant women.
According
to the Centers for
Disease Control and Prevention (CDC):
- Every hour, congenital CMV causes one child to become
disabled.
·
About 1 in 150 children is born with
congenital (present at birth) CMV infection. (About 30,000 children are born
with congenital CMV infection each year.)
·
And about 1 of every 5 children born
with congenital CMV infection will develop permanent problems (such as hearing
loss or developmental disabilities).
·
About 1 in 750 children in the
United States is born with or develops permanent problems due to congenital CMV
infection.
·
In the United States, more than
5,000 children each year suffer permanent problems.
·
Using the CDC’s
statistics of 1 in 750 babies born permanently disabled by CMV means that
of the 36,000 babies born in Connecticut each year, approximately 50 will be born
permanently disabled by congenital CMV.
Utah already passed a more comprehensive bill (that
includes prevention education) and Hawaii’s House and Senate have passed a
similar bill—they are now awaiting their governor’s signature. If you have any questions about the disease, contact: Dr.
Brenda Kinsella Balch of Connecticut: bkbalch@sbcglobal.net;
or Dr. Demmler-Harrison, Director, Congenital CMV Disease Research, Clinic &
Registry, gdemmler@bcm.edu
Sincerely,
Parent representative, Congenital CMV Foundation
P.O. Box 389, Mystic, CT 06355
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