Please write to CT's Public Health Committee at phc.testimony@cga.ct.gov to show your support for Proposed H.B. No. 5525 AN ACT CONCERNING CYTOMEGALOVIRUS. A simple cut and paste letter is available below or tweak to fit your situation.
Please submit your email, with a document attached, no later than 3:00 P.M. on Thursday, February 19, 2015. These letters of testimony will be uploaded to the webpage of H.B. 5525 and become public information.
The following is a sample email announcing your attached "Letter of Testimony," which is addressed to the Connecticut Public Health Committee. You may edit it or use "as is" provided you insert your name, city and state. Make sure you mention who you are and any association to congenital CMV (concerned citizen, mom, dad, doctor, friend of family with a child with congenital CMV, etc):
Send to: phc.testimony@cga.ct.gov
I am [name] and am in support of H.B. 5525: AN ACT CONCERNING CYTOMEGALOVIRUS. Please see my attached Letter of Testimony, which states why I support H.B. No. 5525.
Sincerely,
Name, title, city and state
SAMPLE LETTER TO ATTACH IN A DOCUMENT:
Testimony
Public Health Committee
Proposed House Bill # 5525 An Act Concerning Cytomegalovirus
Friday, February 20, 2015
To the Chairs, Senator Gerratana and Representative Ritter, distinguished vice-chairs, Senator Crisco and Representative Riley, ranking members, Senator Markley and Representative Srinivasan, and committee members:
I am [NAME], [a mother, M.D., a concerned citizen], and am in support of H.B. 5525: AN ACT CONCERNING CYTOMEGALOVIRUS.
Every hour, cCMV causes one child to become disabled.
Approximately 1 in 150 children is born with cCMV infection (30,000 each year).
More than 5,000 babies born each year are permanently disabled by cCMV.
Unlike most disabilities, CMV is preventable. With proper education, mothers can reduce the chances of passing it to their unborn children by avoiding kissing toddlers around the mouth or sharing utensils with them. While most expectant mothers know to avoid changing the cat box to prevent toxoplasmosis, which causes fewer birth defects than congenital CMV, less than 20% surveyed know how to prevent congenital CMV.
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 annual cost per disabled child is approximately $200,000 per child. The annual cost of caring for children disabled by congenital CMV in Connecticut can be calculated: 36,359 births X .0013 disabled by congenital CMV = 47 children X $200,000 mean that it costs over $9 million annually to care for Connecticut's children disabled by congenital CMV. “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.
In 2014, Connecticut's Public Health Committee and House of Representatives unanimously passed H.B. 5147, a bill similar to this year's H.B. 5525, but the Senate did not vote on it before the end of the session. The cost of passing H.B. 5147 was estimated at $40,000 the first year, $26,000 subsequent years.
Connecticut can reduce the suffering caused by congenital CMV by passing H.B. 5525, similar to Utah’s H.B 81 (2013), which requires its Health Department (Children's Hearing and Speech Services) to provide cCMV prevention brochures for doctors, parents, and daycare providers and test newborns for cCMV if they fail two hearing screen tests so their families can be educated about early intervention services and treatment options.
According to studies in the U.S. and France, congenital CMV is reduced when women are educated about prevention.
The CDC suggests the following steps to reduce chances of contracting CMV:
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.
Scientists have been working on a vaccine against cytomegalovirus for years. One reason for delay in successful development is there has been insufficient education about the problem. Pharmaceutical companies need to know that a vaccine will be used because people know about the disease.*
Sincerely,
[Name, Title such as Mom, M.D., friend of family whose child has congenital CMV, etc]
City, State
Email address
[any other website or contact information you are willing to make public]
###
HERE ARE MY LETTERS OF TESTIMONY AS A CONGENITAL CMV MOM:
Testimony
Public Health Committee
Proposed House Bill # 5525 An Act Concerning Cytomegalovirus
Friday, February 20, 2015
To the Chairs, Senator Gerratana and Representative Ritter,
distinguished vice-chairs, ranking members, and committee members:
I am Lisa Saunders, parent representative of the Congenital Cytomegalovirus
Foundation, and am in support of H.B. 5525: AN ACT CONCERNING CYTOMEGALOVIRUS.
I was the mother of Elizabeth Saunders, born severely
disabled by congenital cytomegalovirus (or CMV) in 1989. No
one warned me about congenital CMV until after Elizabeth's birth--much too late to protect her from this
number one viral cause of birth defects.
When Elizabeth was born, I was devastated by the sight of
her small, deformed head. Diagnosed shortly thereafter with
congenital CMV, it was then that I was told women who work in daycare, or have
a young child in daycare, are at a higher risk for catching CMV because
toddlers are the majority of carriers. Pregnant women must use caution
around a toddler's bodily fluids such as saliva. While I was pregnant
with Elizabeth, I ran a licensed daycare center. Nowhere in the licensing literature
was there a CMV prevention message--and there still isn't in Connecticut.
In milder cases of congenital CMV, children may lose hearing or struggle with
learning disabilities. But Elizabeth's case was not a mild one. During her 16
years of life, Elizabeth never held up her head, walked, or fed herself.
She wore diapers, was visually and hearing impaired, and suffered from frequent
bouts of pneumonia and seizures.
According to the Centers for Disease Control and Prevention,
congenital CMV causes one child to become disabled every hour in the U.S. (www.cdc.gov/cmv.) It is the
leading non-genetic cause of childhood hearing loss. Of the more than
5,000 babies born disabled by congenital CMV each year, 50 are estimated to be
born in Connecticut. The cost of caring for one child disabled by congenital
CMV is estimated at $200,000 annually.
Passing H.B. 5525
will not only prevent suffering, but will also
save Connecticut money. In 2014, when the similar proposed bill, H.B. 5147, was passed by the
Public Health Committee and House, it was said to cost Connecticut $40,000 to
implement the first year. The cost of implementing a similar passed bill in
Utah in 2013, H.B 81, was $30,800 per year.
Many years ago, my daughter's public special education program alone cost
$40,000 per year--never mind the cost of her extra services and major surgeries,
such as spinal fusion.
Unlike most disabilities, CMV is preventable. With proper
education, mothers can reduce the chances of passing it to their unborn
children by avoiding kissing toddlers around the mouth or sharing utensils with
them. While most expectant mothers know to avoid
changing the cat box to prevent toxoplasmosis, a less
common cause of birth defects, less than 20% surveyed know how to
prevent CMV.
Sincerely,
Lisa
Saunders, Congenital CMV Mom
Parent
Representative, Congenital Cytomegalovirus Foundation
www.congenitalcmv.org
PO Box 389
Mystic, CT
06355
LisaSaunders42@gmail.com
###
Email Subject: H.B 5271
Testimony
Public Health Committee
Proposed House Bill # 5271: AN ACT CONCERNING NEWBORN
SCREENING TESTS FOR CYTOMEGALOVIRUS AND GLOBOID CELL LEUKODYSTROPHY AND
ESTABLISHING A PUBLIC EDUCATION PROGRAM FOR CYTOMEGALOVIRUS.
Friday, February 20, 2015
To the Chairs, Senator
Gerratana and Representative Ritter, distinguished vice-chairs, ranking
members, and committee members:
I am Lisa Saunders, parent representative of the Congenital Cytomegalovirus
Foundation, and am in support of H.B.5271: AN ACT CONCERNING NEWBORN
SCREENING TESTS FOR CYTOMEGALOVIRUS AND GLOBOID CELL LEUKODYSTROPHY AND
ESTABLISHING A PUBLIC EDUCATION PROGRAM FOR CYTOMEGALOVIRUS.
My testimony, however, only relates to the portion of the bill about cytomegalovirus.
As mentioned in my testimony for proposed
H.B 5525: An Act Concerning Cytomegalovirus, I was the mother of Elizabeth
Saunders, born severely disabled by congenital cytomegalovirus (or CMV).
- Every hour, congenital CMV causes one child to become
disabled.
- Approximately 1 in 150 children is born with congenital
CMV infection (or 30,000 each year).
- More than 5,000 babies born each year are permanently
disabled by congenital CMV. (www.cdc.gov/cmv)
According to studies in the U.S. and France, incidences of congenital
CMV can be reduced if women are educated about prevention. Yet, fewer than half of OB/GYNs surveyed reported counseling
their patients about preventing CMV infection. According to the article, “Washing
our hands of the congenital cytomegalovirus disease epidemic,” published in BMC Public Health,
“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.”
Of the more than
5,000 babies born disabled by congenital CMV each year, 50 are estimated to be
born in Connecticut. The cost of caring for one child disabled by congenital
CMV is estimated at $200,000 annually. According to Dr. Demmler-Harrison,
Director, Congenital CMV Disease Registry and Research Program,
“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.”
In
2014, when the similar proposed bill, H.B.
5147, was passed by the Public Health Committee and House, it was
said to cost Connecticut $40,000 to implement the first year. The cost of
implementing a similar passed bill in Utah in 2013, H.B 81, was $30,800 per year.
Thank you for your consideration.
Sincerely,
Lisa Saunders, Congenital CMV Mom
Parent Representative, Congenital Cytomegalovirus Foundation
www.congenitalcmv.org
PO Box 389
Mystic, CT 06355
LisaSaunders42@gmail.com
AN ACT CONCERNING CYTOMEGALOVIRUS.
Be it enacted by the Senate and House of Representatives in General Assembly convened:
That title 19a of the general statutes be amended to require (1) a screening test for cytomegalovirus be administered to newborn infants who fail a hearing test on and after January 1, 2015, (2) the Department of Public Health to provide information to parents of such newborn infants concerning birth defects associated with cytomegalovirus and treatment options for the disease, and (3) the Commissioner of Public Health to establish a public education program concerning cytomegalovirus.
Statement of Purpose: To require newborn screening tests for cytomegalovirus and establish a public education program for cytomegalovirus.
PUBLIC HEALTH COMMITTEE
FRIDAY, FEBRUARY 20, 2015
The Public Health Committee will hold a public hearing on Friday, February 20, 2015 at 10:30 A.M. in Room 1D of the LOB. The Committee is accepting electronic testimony via email at phc.testimony@cga.ct.gov. Please submit electronic testimony no later than 3:00 P.M. on Thursday, February 19, 2015. If you are unable to submit electronic testimony, please submit 10 copies of written testimony no later than 9:00 A.M. on Friday, February 20, 2015 in Room 3000 of the LOB. Please submit separate testimony for each bill. Testimony submitted after the deadline will not be available until after the hearing. Sign-up for the hearing will begin at 9:00 A.M. in the First Floor Atrium of the LOB. The first hour of the hearing is reserved for Legislators, Constitutional Officers, State Agency Heads and Chief Elected Municipal Officials. Speakers will be limited to three minutes of testimony. Bills will be heard in the order listed in the Bulletin. Unofficial sign-up sheets have no standing with the Committee.
If you can't come (or even if you can), please email a "letter of testimony" no later than 3:00 P.M. on Thursday, February 19, 2015, to phc.testimony@cga.ct.gov
Do you want to help prevent birth defects through education? Can you testify in Harford, Connecticut, about the two congenital cytomegalovirus bills being heard by the Public Health Committee? Bills are:
1) H.B. 5525: AN ACT CONCERNING CYTOMEGALOVIRUS
2) HB-5271: AN ACT CONCERNING NEWBORN SCREENING TESTS FOR CYTOMEGALOVIRUS AND GLOBOID CELL LEUKODYSTROPHY AND ESTABLISHING A PUBLIC EDUCATION PROGRAM FOR CYTOMEGALOVIRUS
Link to Public Health Committee:
http://www.cga.ct.gov/ph/2015-2017%20PHC%20Membership.pdfState of Connecticut
GENERAL ASSEMBLY PUBLIC HEALTH COMMITTEE LEGISLATIVE OFFICE BUILDING, ROOM 3000
HARTFORD, CT 06106-1591
TELEPHONE (860) 240-0560 FAX (860) 240-5306 2015 - 2017 Committee Members Legislative Office Building, Room 3002 Legislative Office Building, Room 3004
Hartford, CT 06106 Hartford, CT 06106
Senator Terry Gerratana, Co-Chair, gerratana@senatedems.ct.gov
Representative Matt Ritter, Co-Chair, Matthew.Ritter@cga.ct.gov
Senator Joe Crisco, Vice-Chair, crisco@senatedems.ct.gov
Representative Emmett Riley, Vice Chair, Emmett.Riley@cga.ct.gov
Senator Joe Markley, Ranking Member, Joe.Markley@cga.ct.gov
Rep. Prasad Srinivasan, Ranking Member, Prasad.Srinivasan@housegop.ct.gov
Representative Al Adinolfi, Al.Adinolfi@housegop.ct.gov
Representative David Alexander, David.Alexander@cga.ct.gov
Representative Andre Baker, Representative Eric Berthel
Andre.Baker@cga.ct.gov, Eric.Berthel@housegop.ct.gov
Representative Whit Betts, Representative Vincent Candelora
Whit.Betts@housegop.ct.gov, Vincent.Candelora@housegop.ct.gov
Representative Christie Carpino, Representative Theresa Conroy
Christie.Carpino@housegop.ct.gov ,Theresa.Conroy@cga.ct.gov
Representative Michelle Cook, Representative Mike Demicco
Michelle.Cook@cga.ct.gov, Mike.Demicco@cga.ct.gov
Representative Henry Genga, Senator Robert Kane
Henry.Genga@cga.ct.gov, Rob.Kane@cga.ct.gov
Senator Ted Kennedy, Jr., Representative Kathleen McCarty
Kennedy@senatedems.ct.gov, Kathleen.McCarty@cga.ct.gov
Senator Marilyn Moore, Representative Jason Perillo
Moore@senatedems.ct.gov, Jason.Perillo@housegop.ct.gov
Representative Kevin Ryan, Representative Peggy Sayers
Kevin.Ryan@cga.ct.gov, Peggy.Sayers@cga.ct.gov
Representative Sean Scanlon, Representative Peter Tercyak
Sean.Scanlon@cga.ct.gov, Peter.Tercyak@cga.ct.gov
Representative Fred Wilms, Representative David Zoni
Fred.Wilms@cga.ct.gov, David.Zoni@cga.ct.gov
Just FYI, a Hawaii mom, who is interviewed with her young child present, is also trying to get Utah's congenital cytomegalovirus bill passed. This just aired on TV and mentions Connecticut's cytomegalovirus bill at the end.
