Monday, May 5: UPDATE
Just before midnight on Monday, May 5, the Connecticut House of Representatives passed HB 5147. It is now up to the Senate to pass it by midnight on Wednesday, May 6, 2014.
To learn more about this bill and what happened to my daughter because I was not made aware of how to prevent contracting cytomegalovirus, the #1 viral cause of birth defects (causing more disabilities than Down syndrome), see: Fox CT news.
Please contact your senator to ask them to pass HB 5147.To find your senator, visit: http://www.senatedems.ct.gov/find/findlegislator.asp
Also, contact Senators Williams and Looney:
Senator Williams, williams@senatedems.ct.gov, Executive Secretary, Carla Smith, 860-240-8614, or Toll-free: 1-800-842-142
Senator Looney, looney@senatedems.ct.gov, Executive Aide & Counsel to the Majority Leader
Dina Berlyn, 1-860-240-8629, or Toll-free: 1-800-842-1420. Legislative Aide, Wendy Fritz
860-240-0375, or Toll-free: 1-800-842-1420
For more information, see the following Connecticut news coverage:
Fox CT news (also appeared in Hartford Courant): Sarah Cody, "Mommy Minute"
Saunders seeks help with CMV ‘silent virus’ prevention bill, Michael Souza, Mystic River Press
Loss and love: Author raises awareness about preventable birth defect, Amy Barry, Grace Magazine
ADDITIONAL INFORMATION
The cost of NOT educating the public about cytomegalovirus is much higher than spending some money on brochures to educate the public. After my daughter Elizabeth died at age 16 from complications of congenital cytomegalovirus, I calculated that her special public school education--estimated at $40,000/per--plus spinal fusion, hip reconstruction and other surgeries came to $700,000. I had no way of estimating what all her additional therapy services and emergency room visits cost the state for 16 years.
According to an article co-authored by Dr. Cannon of the CDC, “The direct annual economic costs of caring for these children are estimated at $1-2 billion…by missing prevention opportunities, we in the medical and public health communities are washing our hands of the congenital CMV disease epidemic.” (Recent estimates put the cost of caring for these children at $4 billion per year.)
Congenital CMV can be prevented if women of childbearing age learn the precautions to take, which includes refraining from kissing their toddlers around the mouth. According to a study posted on the Centers for Disease Control and Prevention (CDC) website, “fewer than half (44%) of OB/GYNs surveyed reported counseling their patients about preventing CMV infection” despite the following statistics from the CDC:
· · About 1 in 150 children is born with congenital CMV infection (approximately 30,000 in the U.S. each year).
· · Congenital CMV causes one child to become disabled every hour. Click for the CDC’s prevention tips.
My OB/GYNs didn’t tell me how to prevent congenital CMV until after my daughter Elizabeth was born. Then I received literature stating women who work in daycare, or have a young child in daycare, are at a higher risk for catching it as preschoolers are the majority of carriers. While I was pregnant with Elizabeth, I had a toddler plus ran a licensed daycare center. Nowhere in the licensing literature was there a CMV prevention message. In milder cases, children may lose hearing or struggle with learning. But Elizabeth's case was not a mild one.
Utah is the only state that requires their Public Health Department to provide CMV education (Utah’s law went into effect in July 2013).
I have been trying to raise CMV awareness for years through my speaking engagements and books, including Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus) and most recently my humorous and historical travel memoir, Mystic Seafarer’s Trail, where I joke I'm trying to get thin and famous like Amelia Earhart (who was secretly married in Noank), so people would listen to my CMV prevention message. My website: www.authorlisasaunders.com
For more information, you can write to me at:
Lisa Saunders
PO Box 389
Mystic, CT 06355