Tuesday, May 26, 2015

My letter to CT's Governor Malloy RE: CMV and HB 5525

May 26, 2015

Governor Malloy

State Capitol
210 Capitol Avenue
Hartford, Connecticut 06106

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/d/0B9Klfxar2CmjTVJfYWItZVprLU0/view?usp=sharing). This article in CTnow quotes another Connecticut mother and doctor: http://www.ctnow.com/family/ctnow-ct-moms-fight-for-cmv-legislation-20150505,0,3850658.column

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


Parent representative, Congenital CMV Foundation
P.O. Box 389, Mystic, CT 06355

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