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Ceremonial bill signing for Public Act 15-10: An Act Concerning Cytomegalovirus at the Office of the Governor in Hartford, Conn., on July 28. Left to right: Jane Baird, Government Relations, Connecticut Children’s Medical Center; Dr. Wallis Molchen, Chief Resident, Connecticut Children’s Medical Center; Jane Brancifort, Deputy Commissioner, Department of Public Health; State Representative John Hampton; Dr. Brenda K. Balch, American Academy of Pediatrics Early Hearing Detection & Intervention Chapter Champion; Nancy Wyman, Lt. Governor; Lisa Saunders, parent representative, Congenital Cytomegalovirus
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FOR IMMEDIATE RELEASE
CONTACT:
Lisa Saunders
Parent representative
Mothers and Doctors Find Hope for Babies When
Connecticut Governor Malloy Signed Law on #1 viral cause of
birth defects
Public Act No. 15-10:
"An Act Concerning Cytomegalovirus"
Mystic,
Conn.— Governor Dannel P. Malloy invited families of children disabled
by congenital cytomegalovirus (CMV), and doctors who work with CMV, to a
ceremonial bill signing for Public Act No. 15-10: "An Act Concerning Cytomegalovirus" at the Office of the Governor in Hartford on July 28.(See: https://www.cga.ct.gov/2015/ACT/PA/2015PA-00010-R00HB-05525-PA.htm)
"With
bipartisan support, the legislature approved and the governor signed a bill
that will help mitigate the devastating impact that this disease has on
families. The bill requires that hospitals and other health care institutions
test newborn infants for CMV if they fail a newborn hearing test. This will
help parents intervene early and get their newborn child the help it
needs," stated the State Senate Democrats of
the Connecticut General Assembly in a press release.
"This
is a game-changing step forward in our ability to determine CMV causality and
give parents a viable option for early treatment," said Scott R. Schoem,
MD, FAAP, Director of Otolaryngology, Connecticut Children’s Medical Center.
Congenital
CMV is the most common cause of nonhereditary
sensorineural hearing loss in childhood. In addition to deafness,
Congenital Cytomegalovirus (cCMV) causes mental retardation, liver disease, and
cerebral palsy as a result of infection in pregnant women.
Melvette
Ruffin of Stamford brought her 26-year old son, Jarred, in his wheelchair to
the ceremonial signing on July 28. When Jarred was born severely disabled by
congenital CMV in 1989, Melvette had never heard of the virus or how
she could have prevented it. “Meeting Governor Malloy, and hearing him talk
about putting the CMV law into motion, was a real thrill moment for me. Having
a child with multiple disabilities is hard. For twenty six years, I felt alone
watching my child suffer from this disease and I didn’t know how to prevent
this from happening to other families. But being at this signing with mother
Lisa Saunders, whose daughter was also born severely disabled by CMV in 1989, and meeting Dr. Brenda Balch and law makers who really care, made me feel
change is finally coming. Hearing the governor call it ‘Lizzie’s Bill’ in
memory of Lisa’s daughter made this all so personal.”
According
to the CDC, in the U.S.:
- Every hour, congenital CMV
causes one child to become disabled.
- About 1 in 750 children is
born with or develops permanent problems due to congenital CMV infection.
- More than 5,000 children
each year suffer permanent problems caused by congenital CMV.
Ever
since Lisa Saunders of Mystic, the parent representative of the Congenital
Cytomegalovirus Foundation, and other parents with children
disabled by the virus, learned the State of Utah
passed a CMV bill in 2013, they, along with several in the medical community,
have been trying to get the State of Connecticut to follow suit. They spent the
2014 and 2015 legislative sessions educating the Connecticut House and Senate
about this leading viral cause of birth defects, which causes more disabilities
than Down
syndrome.
“We
must commit to educating the public about cytomegalovirus so that we can
potentially prevent the devastating consequences of this disease on our
children," said Brenda K. Balch, MD, American Academy of
Pediatrics Early Hearing Detection & Intervention Chapter Champion.
Saunders
said, “My OB/GYNs didn’t tell me how to prevent congenital CMV until after my
daughter 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 toddlers 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.” Elizabeth was severely mentally and physically disabled, and died at
age 16 during a seizure in 2006. Saunders wrote what it was like raising Elizabeth
alongside her tomboy sister and a series of dysfunctional pets in her
light-hearted memoir, Anything But a Dog!
The perfect pet for a girl with congenital CMV (cytomegalovirus).
Casey Famigletti of New Canaan, whose daughter was also born with congenital CMV, stated in her public hearing testimony to the Public Health Committee on Feb. 20, 2015: "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?"
Children
born with congenital CMV can be treated if diagnosed early. “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,” says Dr.
Demmler-Harrison, Director, Congenital CMV Disease Research, Clinic & Registry.
When
CMV bill supporters in Connecticut and across the country learned Governor
Malloy signed House Bill 5525: "An Act Concerning
Cytomegalovirus” on May 26, they were ecstatic.
“I
am so excited that another state is bringing attention to congenital
cytomegalovirus. Utah is looking forward to partnering with Connecticut
in their upcoming endeavors," said Stephanie Browning McVicar, Au.D.,
CCC-A, Utah Department of Health, Director, Early Hearing Detection and
Intervention / Cytomegalovirus Public Health Initiative. In addition to testing
newborns for CMV if they fail their hearing screen, Utah’s H.B 81
requires CMV prevention brochures
for doctors, parents, and daycare providers.
To
learn more about congenital cytomegalovirus and how to prevent it, visit the
Centers for Disease Control and Prevention at: http://www.cdc.gov/cmv/index.html
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Dr. Brenda K. Balch and mothers Casey Famigletti and Lisa Saunders testified in favor of House Bill 5525 in Hartford, Conn., on Feb. 20, 2015. (Photograph by Suzanne Janso.)
From left to right:
Brenda K. Balch, MD, Connecticut American Academy of Pediatrics Early Hearing Detection & Intervention Chapter Champion. She has a strong interest because congenital CMV is a major cause of hearing loss. Dr. Balch lives in Mystic, CT. (Sent Testimony to CT’s HB 5525.)
Casey Famigletti, CMV mom living in New Canaan, CT. (Sent Testimony to CT's HB5525.)
Lisa Saunders of Mystic, Connecticut, is author of memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus)," and the parent representative of the Congenital Cytomegalovirus Foundation, which raises awareness about maternal testing for first infection during pregnancy, newborn testing and the need to develop a vaccine. LenorePereira, Ph.D., Professor, Cell and Tissue Biology Department, University of California San Francisco, is the Foundation founder. (Lisa Sent Testimony to CT's HB5525.)
Watch Rep. Bumgardner urges support for cytomegalovirus screening
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