RE: Congenital Cytomegalovirus Causes More Disabilities than Down Syndrome
Dear Connecticut Politicians,
I am the parent representative of Congenital Cytomegalovirus
(CMV) Foundation and mother
of Elizabeth born severely disabled by congenital CMV. Congenital
cytomegalovirus (cCMV) causes more disabilities than Down syndrome.
I am hoping you will support a 2015
version of the 2014 bill that was
unanimously passed by both the Public Health Committee and House of
Representatives in spring 2014: H.B.
5147: "AN ACT CONCERNING NEWBORN SCREENING FOR CYTOMEGALOVIRUS AND
ESTABLISHING A PUBLIC EDUCATION PROGRAM FOR CYTOMEGALOVIRUS."
The Senate failed to vote on it
before the end of the session despite “Letters of Testimony” from mothers whose
babies were disabled by the preventable disease and Yale
University’s Eugene D. Shapiro, M.D., Professor of Pediatrics, Epidemiology
and Investigative Medicine. Connecticut’s failure to pass the bill
was mentioned in the internationally published Associated Press
article, “Silent
virus a rare, dangerous risk for the unborn.”
If I understand correctly, the
following co-sponsors of H.B. 5147 were reelected to serve in 2015: Kevin Ryan,
139th Dist.; Emmett D. Riley, 46th Dist.; Michelle L. Cook, 65th Dist.; Rosa C.
Rebimbas, 70th Dist.; Noreen S. Kokoruda, 101st Dist.; Peter A. Tercyak, 26th
Dist.; Mitch Bolinsky, 106th Dist.; Hilda E. Santiago, 84th Dist.; Gerald M.
Fox, 146th Dist.; and Michael L. Molgano, 144th Dist.*
The representative responsible for
passing and enacting the bill in Utah has offered to advise CT politicians
about the legislation and needed funding (you can contact Rep.Ronda Rudd
Menlove, PhD, Utah State University, at Ronda.Menlove@usu.edu, or visit the Utah CMV Council).
The
cost of CT's HB 5147 (2014) was $40,000 for the first year, and $26,000 for
consecutive years. The cost of caring for ONE child disabled by cCMV is
estimated at $194,590/year. The annual cost of caring for
Connecticut’s children disabled by cCMV is over $9 million (47 children x
$194,590). Educating women on prevention is shown to reduce transmission
of this disease by
at least 50%.
Congenital cytomegalovirus (cCMV)
causes more disabilities than Down
syndrome and is the most common cause of nonhereditary sensorineural hearing loss
in childhood. 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).
- Approximately 1 in 750 babies born are permanently
disabled by cCMV. (Download CDC's flyer, What Women Should Know About
Cytomegalovirus (CMV): http://congenitalcmv.org/CDCbrochure.pdf.)
Which women are most at risk for
contracting CMV?
“75% of women with a primary
infection during pregnancy acquire CMV from their own child under two years of
age,” said Stuart Adler,
M.D., Professor Emeritus of Pediatrics and Professor of Microbiology
and Immunology, Virginia Commonwealth University. Data from a variety of day
care center studies indicate that between 44 to 100% of two year olds at a
single given time were shedding cytomegalovirus. Day-care workers are
at greater risk than people who don’t work in such a setting. Prevention
measures include refraining from kissing toddlers on the mouth and frequent
hand washing.
Why don’t doctors warn women of childbearing age about congenital CMV?
Doctors don’t realize how
prevalent it is. Fewer than half
(44%) of OB/GYNs surveyed reported counseling their patients about preventing
CMV infection.
Utah is currently the only state
working to prevent congenital CMV (cCVM). Utah’s H.B. 81,
which went into effect July 1, 2013, requires the Health Department
(click on Children's
Hearing and Speech Services to download English/Spanish pamphlets for
daycare providers, doctors and parents) to teach CMV prevention and test
newborns for cCMV if they fail two hearing screen tests so their families
can learn about the availability of early intervention services
and treatment options. Utah has a health department Web page and
pamphlets for doctors' offices about congenital cytomegalovirus. Less than a year
after the law was enacted in Utah, "About
50 Utah newborns have had CMV tests so far; nine tested positive, said
Stephanie McVicar, director of newborn hearing screening for Utah's health
department."
Why
is it important to know if a baby has congenital CMV?
“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 Registry and Research Program
“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 Registry and Research Program
My daughter Elizabeth suffered for
16 years from severe disabilities caused by cCMV until her
death during a seizure. Elizabeth was unable to walk and talk and suffered
from frequent bouts of pneumonia and uncontrollable epilepsy. She required
several surgeries as she aged, such as spinal fusion, and was gradually losing
her hearing. I had run a licensed daycare center for young children when I was
pregnant with Elizabeth. Nowhere in the licensing literature did it state the
precautions to take when working with children under three years of age. As far
as I can tell, Connecticut still does not promote CMV awareness and its licensed daycare
centers.
I am the author of the memoir, Anything
But A Dog!: The Perfect Pet For A Girl With Congenital Cmv (Cytomegalovirus),
and lecture to international audiences about how they can help prevent the
disease. I recently stood before my daughter's grave and promised her I would
get Connecticut to pass this bill in 2015. Mothers like me need the support of
our country to ensure Elizabeth and others like her didn't suffer in vain.
I provide a one-page Congenital Cytomegalovirus (cCMV) Fact Sheet with additional pages for sources of information, including contact information for the county’s cCMV experts, on my blog at: http://congenitalcmv.blogspot.com. For more information about the Congenital Cytomegalovirus (CMV) Foundation, visit: www.congenitalcmv.org. You may contact me at LisaSaunders42@gmail.com
###
*Contact reelected Co-Sponsors of HB
5147 (2014) at: Kevin.Ryan@cga.ct.gov, Emmett.Riley@cga.ct.gov, Michelle.Cook@cga.ct.gov, Peter.Tercyak@cga.ct.gov, Noreen.Kokoruda@housegop.ct.gov,
Hilda.Santiago@cga.ct.gov, Mitch.Bolinsky@housegop.ct.gov,
Rosa.Rebimbas@housegop.ct.gov.
Jenny Bailey of Texas said, "In 1990, I was seven-months pregnant with my daughter, Caroline, when her CMV was diagnosed in utero and I was told she would probably die or have multiple severe disabilities. I am thankful she was the first baby in Houston treated with ganciclovir at birth and doesn't have disabilities other than deafness! She is living a full and independent life at age 24, but other babies are not being diagnosed and miss this chance of saving their hearing and promoting normal brain growth with a drug we got a quarter-century ago."
Farah Armstrong of Texas, whose infant daughter Maddie died from cCMV complications in February 2014, wrote to Connecticut legislators shortly thereafter: "You may not currently have a pregnant daughter, daughter-in-law, niece, granddaughter, neighbor, or friend, but chances are you will at some point in your lifetime. No mother should have to find out after giving birth that they had passed a preventable virus to their baby before birth."
What
is congenital Cytomegalovirus (cCMV)?
The
#1
viral cause of birth defects. It causes more disabilities than Down syndrome and is the most common cause of nonhereditary sensorineural hearing loss in childhood. 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).
·
Approximately
1 in 750 babies born are permanently disabled by cCMV
Why don’t doctors warn women of
childbearing age about congenital CMV?
Doctors
don’t realize how prevalent it is. Fewer
than half (44%) of OB/GYNs surveyed reported counseling their patients about
preventing CMV infection. “The
virtual absence of a prevention message has been due, in part, to the low
profile of congenital CMV. Infection is usually asymptomatic in both mother and
infant, and when symptoms do occur, they are non-specific, so most CMV
infections go undiagnosed,” according to National Center for Biotechnology Information article, “Washing our hands of the congenital cytomegalovirus disease
epidemic,”.
What percent of women of child-bearing
age know about congenital CMV?
Only 22%
of women surveyed had heard about congenital CMV , but most in that group didn’t know how to prevent it.
What can our state do to protect our
children from congenital CMV?
Educate public. Pass a bill
similar to Utah’s H.B 81 (2013) requiring the Health Department (Children's
Hearing and Speech Services) to teach CMV prevention and test newborns for cCMV
if they fail two hearing screen tests so their families can be
educated about the possible impacts of cCMV, the availability of early
intervention services, medical intervention, and treatment options.
What is the annual cost of
implementing this congenital CMV education and hearing test bill?
Utah’s cost: $30,800 per year. In 2014, the cost in Connecticut was estimated
at $40,000 first year, $26,000 subsequent years.
What is the annual cost of caring
for children disabled by congenital cytomegalovirus (cCMV) in the U.S. and by
state? According
to researchers and the Institute
of Medicine,
the annual cost of cCMV is $1 - 4 billion. Using a conservative $1 billion per
year, the following calculates
cost per child (which varies with severity of disability). In 2012, 3,952,841 were born in U.S. with 1/750, or .0013, disabled by cCMV = 5,139. Annual cost per
disabled child = $1,000,000,000/5139 or $194,590/year/child.
ANNUAL
COST FOR CONNECTICUT: Annual cost of caring for children disabled by
congenital CMV in CT: 36,359
births X .0013 cCMV disabled = 47 children X
$194,590/year/child= $9,145,730, or over $9 million annually to care for
cCMV children. “This figure is almost certainly an underestimate,
especially now with enhanced mobility aids, surgical interventions, cochlear
implants, antiviral therapies, occupational and physical therapies, etc., which
were not likely included in the older cost estimates,” says Dr.
Demmler-Harrison, Director, Congenital
CMV Disease Registry and Research Program.
Which women are most at risk for
contracting CMV?
“75% of women
with a primary infection during pregnancy acquire CMV from their own child
under two years of age,” said Stuart Adler, M.D., Professor
Emeritus of Pediatrics and Professor of Microbiology and Immunology,
Virginia Commonwealth University. Data from a variety of
day care center studies indicate that between 44 to 100% of two year olds at a
single given time were shedding cytomegalovirus. Day-care workers are at greater risk than
people who don’t work in such a setting.
Will it really make a difference if
women are educated on how to prevent contracting CMV?
Yes.
Studies in France and the U.S. proved women
educated about prevention reduced transmission to their unborn by at least 50%.
·
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
share food, drinks, or eating utensils with young children.
·
Don’t
kiss young children on the lips—give them a big hug and a kiss on top of the
head.
·
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.
Can you treat cCMV? “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,”
says Dr. Demmler-Harrison, Director, Congenital CMV Disease
Registry and Research Program.
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Congenital Cytomegalovirus Infection Time To Test
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Demmler-Harrison,Gail, MD,Director, Congenital CMV
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Loss and Congenital CMV Infection: A Systematic Review. Retrieved from
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(2014, Feb. 28). Public Hearing Testimony, Raised H.B. No. 5147 .
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Foundation. (n.d.). Retrieved from Congenital CMV Foundation:
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Saunders, L. (2009). Anything But a Dog! The
perfect pet for a girl with congenital CMV (cytomegalovirus). Retrieved
from
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Saunders, L. (2014, April 28). Parent
representative, Congenital Cytomegalovirus Foundation, and Dr. Brenda Balch
of Mystic, CT. Fox CT: Mommy Minute. (S. Cody, Interviewer)
https://www.youtube.com/watch?v=4lT2GpwzaMU&feature=youtu.be.
Saunders, Lisa, Parent Representative, Congenital
CMV Foundation. (2014, Feb. 28). Public Hearing Testimony, Raised H.B. No.
5147. Retrieved from Connecictut General Assembly:
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Shapiro, Eugene, M.D., Professor of Pediatrics,
Epidemiology and Investigative Medicine, Yale University. (2014, Feb. 28). Public
Hearing Testimony, H.B. No. 5147. Retrieved from Connecticut General
Assembly:
http://www.cga.ct.gov/2014/PHdata/Tmy/2014HB-05147-R000228-Eugene%20Shapiro,%20M.D.,%20Professor%20of%20Pediatrics,%20Epidermiology%20and%20Investigative%20Medicine,%20Yale%20University-TMY.PDF
Tanner, L. (2014, May 17). Silent virus a rare,
dangerous risk for the unborn. Retrieved from Associated Press:
http://bigstory.ap.org/article/silent-virus-rare-dangerous-risk-unborn
Vaccines for the 21st Century: A Tool for
Decisionmaking--CMV. (1999, March
1). Retrieved from Institute of Medicine:
http://www.iom.edu/Reports/1999/Vaccines-for-the-21st-Century-A-Tool-for-Decisionmaking.aspx
Vauloup-Fellous,Christelle; Picone,Olivie;
Cordier,Anne-Gaëlle; Parent-du-Châtelet,Isabelle;Senat,Marie-Victoire;
Frydman,René; Grangeot-Keros, Liliane . (December 2009). Does hygiene
counseling have an impact on the rate of CMV primary infection during
pregnancy. Retrieved from Jounal of Clinical Virology:
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What Women Should Know About Cytomegalovirus (CMV). (n.d.). Retrieved from Congenital Cytomegalovirus
Foundation: http://congenitalcmv.org/CDCbrochure.pdf
*This fact sheet was compiled by Lisa Saunders, the parent
representative of Congenital Cytomegalovirus (CMV) Foundation.
Contact: LisaSaunders42@gmail.com. Visit her website at www.authorlisasaunders.com or Congenital
CMV blog at: http://www.congenitalcmv.org/
Lisa Saunders lives in the 41st
House District (Groton and New London, CT). Her newly elected House
representative is:
Aundré Bumgardner,
aundrebumgardner@gmail.com
Lisa's State Senator: Senator Andrew Maynard
Here are reelected Co-Sponsors of HB 5147 (2014): Kevin.Ryan@cga.ct.gov, Emmett.Riley@cga.ct.gov, Michelle.Cook@cga.ct.gov, Peter.Tercyak@cga.ct.gov, Noreen.Kokoruda@housegop.ct.gov, Hilda.Santiago@cga.ct.gov, Mitch.Bolinsky@housegop.ct.gov, Rosa.Rebimbas@housegop.ct.gov.
Here are reelected Co-Sponsors of HB 5147 (2014): Kevin.Ryan@cga.ct.gov, Emmett.Riley@cga.ct.gov, Michelle.Cook@cga.ct.gov, Peter.Tercyak@cga.ct.gov, Noreen.Kokoruda@housegop.ct.gov, Hilda.Santiago@cga.ct.gov, Mitch.Bolinsky@housegop.ct.gov, Rosa.Rebimbas@housegop.ct.gov.
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Sara Doutre,
co-founder of the Utah CMV Council, stands beside a Utah bus advertisement for
congenital cytomegalovirus prevention. Doutre is mom to Daisy,
born with congenital CMV, and daughter of Ronda Menlove, the representative
responsible for leading Utah to pass and enact the first U.S. CMV awareness and
testing legislation (2013). For advice, contact Representative Ronda Rudd Menlove, PhD, Utah State University, Ronda.Menlove@usu.edu, or Sara Doutre at sara@doutreconsulting.com
CONNECTICUT
Lisa Saunders, Congenital CMV Foundation parent representative (mother of Elizabeth severely disabled by
congenital CMV, 1989-2006), PO Box 389, Mystic, CT 06355, LisaSaunders42@gmail.com (sent Letter of Testimony to CT’s HB 5147).
Amy
Mirizzi, MPH, CPH, Early Hearing Detection &
Intervention (EHDI) Program, Family Health Section, Connecticut Department of
Public Health, 410 Capitol Avenue, MS # 11MAT, Hartford, CT 06134-0308. Phone:
(860) 509-8175, amy.mirizzi@ct.gov,
http://www.ct.gov/dph/ehdi
Eugene D. Shapiro, M.D., Professor of Pediatrics, Epidemiology and
Investigative Medicine, Yale University, eugene.shapiro@yale.edu
(sent Letter of Testimony to CT’s HB 5147).
Casey Famigletti of New Canaan, Connecticut, mother of child born
disabled by congenital CMV (sent Letter
of Testimony to CT’s HB 5147).
UTAH
Rep.Ronda Rudd Menlove, PhD,
Utah House of Representatives and Senior Vice Provost, Utah State University. She was the representative responsible for
passing and enacting the bill in Utah (2013) and has offered to advise CT
politicians about the legislation and needed funding. Contact 435-760-2618, Ronda.Menlove@usu.edu
or visit the Utah
CMV Council.
Stephanie Browning McVicar,
Au.D., CCC-A, DOCTOR OF AUDIOLOGY (she
worked tirelessly to pass the Utah bill), Specialty Services Program
Manager, State EHDI Director, State of Utah Department of Health, Children with
Special Healthcare Needs, Children's Hearing and Speech Services, (801)
584-8218, smcvicar@utah.gov
(click on Utah's Children's
Hearing and Speech Services to download
English/Spanish pamphlets for daycare providers, doctors and parents).
Sara Menlove Doutre, President
and Education Policy Consultant at Doutre Consulting (her daughter was affected
by congenital cytomegalovirus) and co-founder of Utah CMV Council.
sara@doutreconsulting.com (sent Letter of Testimony to CT’s HB 5147).
NATIONAL
CDC: Michael Cannon, Ph.D.
mrc7@cdc.gov,
a research epidemiologist at the Centers for Disease
Control, Atlanta, Georgia. Dr. Cannon is develops strategies to prevent
congenital CMV infection through public awareness and education.
Gail J Demmler-Harrison,
MD, Professor, Pediatrics, Section Infectious Diseases, Baylor
College of Medicine, Attending Physician, Infectious Diseases Service, Texas
Children's Hospital, CMV Registry, CMV Research and CMV Clinic.
Contact: 832-824-4330, gjdemmle@texaschildrens.org.
The CMV Registry supports CMV
research, disseminates information and provides a parent support group (sent Letter of Testimony to CT’s HB 5147).
Lenore Pereira, Ph.D., Congenital CMV Foundation founder and
Professor, Cell and Tissue Biology Department, University of California San
Francisco, at lenore.pereira@ucsf.edu, or visit www.congenitalcmv.org. The Congenital CMV Foundation raises awareness about maternal testing for first
infection during pregnancy, newborn testing and the need to develop a vaccine.
Stuart
Adler, M.D., Professor Emeritus of Pediatrics and
Professor of Microbiology and Immunology, Virginia Commonwealth
University. sadler@vcu.edu
(sent Letter of Testimony to CT’s HB 5147).
Staley, Plotkin, MD,
Professor Emeritus of Pediatrics, University of
Pennsylvania, Vaccinology Consultant (sent Letter
of Testimony to CT’s HB 5147). Contact: stanley.plotkin@vaxconsult.com
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