Now Connecticut mothers and a pediatrician urge the Senate to pass the bill before the end of the 2015 session on June 3.
Please contact your senator, found at http://www.cga.ct.gov/asp
/menu/CGAFindLeg.asp, and urge them to speak with leadership about calling the bill for a vote. Also, contact State Senator Terry Gerratana, Assistant Majority Leader, Chair: Public Health, and ask her to bring the bill out for a vote. Contact Senator Terry Gerratana at: firstname.lastname@example.org, and call her Legislative Aide, Terri Reid, at: 860-240-0584.
Excerpt of HB 5525:
Casey Famigletti of New Canaan, whose daughter was also born with congenital CMV, stated in her public hearing testimony to the Public Health Committee: "What has been most frustrating to me is the fact that I was informed about not eating soft cheeses and deli meat (to prevent listeria), to not clean kitty litter boxes (to prevent toxoplasmosis), to avoid alcohol (to prevent fetal alcohol syndrome) and to take an adequate amount of folic acid (to prevent spinal bifida). If, according to the CDC, 1 in 150 children is born with congenital CMV, making it more prevalent than everything else I was informed of, why was I not informed on the simple step to reduce my risk of acquiring and passing along such a prevalent, preventable and destructive virus?" See Famigletti's entire testimony at: http://www.cga.ct.gov/2015/PHdata/Tmy/2015HB-05525-R000220-Casey%20Famigletti-TMY.PDF
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.
According to the CDC, in the U.S.:
- Between 50% and 80% of adults in the U.S. are infected with CMV by 40 years of age.
- CMV is the most common viral infection that infants are born with in the United States
- Every hour, congenital CMV causes one child to become disabled
- About 1 in 150 children is born with congenital (present at birth) CMV infection. This means that in the United States, 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) due to the infection.
- 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 caused by CMV infection.
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 permanently disabled by congenital CMV.
The benefit of passing HB 5525: 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, “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.” She adds: “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.” See Dr. Balch's public hearing testimony at: http://www.cga.ct.gov/2015/PHdata/Tmy/2015HB-05525-R000220-Brenda%20Kinsella%20Balch,%20MD.%20AAP%20Connecticut%20Chapter%20Champion%20for%20the%20Early%20Hearing%20Detection%20and%20Intervention-TMY.PDF
Therapy with intravenous ganciclovir or oral valganciclovir is now the accepted treatment option. “Treated infants had fewer developmental delays…than untreated infants,” according to the article, “Valganciclovir for Symptomatic Congenital Cytomegalovirus Disease,” by Kimberlin, M.D., et al. (2015).
According to Dr. Demmler-Harrison, Director, Congenital CMV Disease Research, Clinic & Registry, “CMV infection in newborns can be treated with ganciclovir by IV or valganciclovir by oral route - treatment reduces hearing loss progression and improves growth and head size/brain growth and improves developmental milestones. It is now recommended for newborns with symptomatic CMV disease at birth and even those that appear healthy yet fail their newborn hearing screens because of deafness.”
Dr. Demmler-Harrison adds: “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.”
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.
How can CMV be avoided in the first place? See CDC: CMV Prevention tips at:http://www.cdc.gov/cmv/index.
- Wash hands often with soap and water for 15-20 seconds, especially after wiping runny noses, changing diapers, picking up toys, etc. If soap and water are not available, use alcohol-based hand gel.
- Use soap and water or a disinfectant to clean hard surfaces that have been contaminated by secretions.
- Don’t kiss young children on the lips or share food, drinks, or eating utensils with them.
- If you work in a day care center, limit close contact with children younger than 2½ years of age, especially if you've never been infected with CMV or don't know if you've been infected.
CMV in Connecticut's News:
- "Connecticut Moms Fight for CMV Legislation":http://www.ctnow.com/family/ctnow-ct-moms-fight-for-cmv-legislation-20150505,0,3850658.column
- "Preventing Congenital CMV in Pregnancy": http://wtnh.com/2015/02/09/preventing-congenital-cmv-during-pregnancy/
- Connecticut Magazine: Mystic Mom Raises Awareness of ‘Stealth Virus’ That Can Catch Pregnant Women Unaware: http://www.connecticutmag.com/Blog/Health-Wellness/February-2015/Mystic-Mom-Raises-Awareness-of-Stealth-Virus-That-Can-Catch-Pregnant-Women-Unawares/#comments
Letters of testimony to the State of Connecticut from parents, medical community and concerned citizens: http://www.cga.ct.gov/asp/menu/CommDocTmyBillAllComm.asp?bill=HB-05525&doc_year=2015About Lisa Saunders:
Lisa Saunders is the Parent representative of Congenital CMV Foundation, and author of memoir, Anything But a Dog! The perfect pet for a girl with congenital CMV. Her address: P.O. Box 389, Mystic, CT 06355, LisaSaunders42@gmail.com