I sent the following similar email to Speaker of the House Brendan Sharkey hoping to get him to bring House Bill 5147 to a vote. Can you think of anything else I can do? I have been asked to keep the Fox CT reporter up to date on the progress of the bill. Here is our segment that aired on Monday: Fox CT news.
Sarah Cody of Fox CT interviewed me, as parent representative of the Congenital CMV Foundation, and Brenda Balch, MD, Connecticut's AAP EHDI (Early Hearing Detection and Intervention) Chapter Champion on cytomegalovirus and House Bill 5147.
As of Thursday May 1, 11:45 a.m., this is the latest progress I see on House Bill 5147:
File Number 494
House Calendar Number 287
Favorable Report, Tabled for the Calendar, House
Reported Out of Legislative Commissioners' Office
Although there is a small cost for education ($40,000 the first year for brochures, then less every year afterwards), the cost of not doing anything is much larger. 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.)
I didn’t know how to prevent contracting CMV (cytomegalovirus), which causes more disabilities than Down syndrome, until it was too late for Elizabeth born with a severely damaged brain, cerebral palsy, cortical blindness and ever worsening hearing and epilepsy.
My OB/GYNs didn’t tell me how to prevent congenital CMV until after she 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.
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.
On March 25, the Public Health Committee voted in favor of House Bill 5147 (I came to Harford to testify in favor of the bill on February 28). At present, Utah is the only state that requires their Public Health Department to provide CMV education (Utah’s law went into effect in July 2013). Please become the second state in the country to care about protecting babies from this largely preventable leading viral cause of birth defects.
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. For more information, please see my interview at: Fox CT news.
Thank you for your attention to this matter.