I wrote the following email in BCC style to every member of the Connecticut House to ask them to vote in favor of HB 5525. Calls are even better, so I will also be calling my representatives and as many other offices as I can to remind them how I feel about this bill (they took the education part out, but left in the testing for babies failing their hearing screens). Getting something passed is better than nothing like last year!
If you, too, would like to call and/or email your Connecticut representatives, you can find yours here:http://www.cga.ct.gov/
If you don't live in Connecticut and/or want the email address of every House member, just see below my sample email. The following is my letter to them if you want to use any part of it for your correspondence with the legislators:
I am writing to ask you to pass HB 5525, a bill concerning cytomegalovirus (CMV), the #1 viral cause of birth defects, which causes more disabilities than toxoplasmosis (the “kitty litter” disease). My recent visit to your offices was featured on News 8: Mystic mom raising awareness about potentially deadly virus.
Although the prevention education portion was removed from HB 5525 (see: Committee Bill [pdf]), newborn testing for CMV will be required if the infant fails the initial hearing screen, which will help prevent further damage from congenital CMV because parents will learn early intervention options and treatments.
According to Dr. Brenda K. Balch, Connecticut’s American Academy of Pediatrics Early Hearing Detection & Intervention Chapter Champion, “Newborn hearing screens in Connecticut have been mandated since July 2000 and 99% of infants have been screened annually for several years. 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.”
According to the article, “Valganciclovir for Symptomatic Congenital Cytomegalovirus Disease,” by Kimberlin, M.D., et al. (2015), “Congenital Cytomegalovirus (CMV) infection is the leading nongenetic cause of sensorineural hearing loss.” Therapy with intravenous ganciclovir or oral valganciclovir is now the accepted treatment option. “Treated infants had fewer developmental delays…than untreated infants.”
According to Dr. Demmler-Harrison, Director, Congenital CMV Disease Research, Clinic & Registry, “If congenital CMV is diagnosed early, it avoids the need for expensive genetic testing and other tests because diagnosis is established. So, this saves money. Also, some newborns will qualify for treatment based on their doctor evaluation, so testing is important. Testing also allows for more careful follow-up over the childhood/adolescence, since hearing loss from congenital CMV is progressive through adolescence and early adulthood.”
In addition to deafness, congenital CMV causes mental retardation, liver disease and cerebral palsy--more disabilities than Down syndrome-- as a result of infection in pregnant women. Between 50% and 80% of adults in the U.S. are infected with CMV by 40 years of age. According to the CDC, in the U.S.:
- Every hour, congenital CMV causes one child to become disabled.
- Approximately 1 in 150 children is born with congenital CMV infection (30,000 each year).
- More than 5,000 babies born each year are permanently disabled by congenital CMV.
HB 5525 is similar to Utah’s H.B 81 (2013). At present, the following legislators are co-sponsoring HB 5525: Rep. Kevin Ryan, 139th Dist.; Rep. Aundré Bumgardner, 41st Dist.; Rep. Emmett D. Riley, 46th Dist.; Sen. Catherine A. Osten, 19th Dist.; and Rep. Tom O'Dea, 125th Dist.
Last year, the Connecticut House passed a similar bill, HB5147 (2014), but the Senate failed to vote on it before the end of the session.
My daughter suffered the effects of congenital CMV for 16 years until her death during seizure. Please help prevent future children from this terrible, preventable disease (it can be prevented by carefully washing hands after caring for toddlers who are often the carriers of CMV--particularly if they are in daycare--and by refraining from kissing toddlers on the mouth).
Please pass HB 5525 to help those born with congenital CMV to receive the early intervention they need to reduce the severity of their lifelong disabilities. Reducing the severity of their disabilities will reduce the annual cost of their care, which is conservatively estimated at $200,000 per child annually. It can be assumed that approximately 50 babies a year are born with congenital CMV in Connecticut.*
Parent representative, Congenital CMV Foundation, and author of Anything But a Dog! The perfect pet for a girl with congenital CMV.
PO Box 389 Mystic, CT 06355
*What is the annual cost of caring for children disabled by congenital cytomegalovirus (cCMV) in the U.S. and in Connecticut? According to researchers and the Institute of Medicine, the annual cost of cCMV is $1 - 4 billion. Using a conservative $1 billion, the following calculates cost per child (which varies with severity of disability). In 2013, 3,932,181 were born in U.S. with 1/750, or .0013, disabled by cCMV = 5,112.
Annual cost per disabled child = $1,000,000,000/5112 or $195,618/year/child.
Connecticut's annual cost of caring for children disabled by cCMV: 36,085 births X .0013 cCMV disabled = 47 children X $195,618/year/child= $9,194,046, or over $9 million annually.
House email addresses: