Friday, February 27, 2015

Testified In Favor of Connecticut's Cytomegalovirus Bill, HB 5525

 

A doctor and two mothers publicly testify before the Public Health Committee in favor of HB 5525  on Feb. 20, 2015, in Hartford, CT. Photo 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. 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, CMV mom and parent representative of the Congenital Cytomegalovirus Foundation. Lives in Mystic, CT. (Sent Testimony to CT's HB5525.)

Read several letters of testimony by the medial community and parents to the Connecticut Public Health Committee at: http://www.cga.ct.gov/asp/menu/CommDocTmyBillAllComm.asp?bill=HB-05525&doc_year=2015 (to read each one, click on the Public Health Committee tab).
News coverage mentioning the 2015 cytomegalovirus bill:
News 8's Connecticut Style: Preventing Congenital CMV During Pregnancy
Hawaii News Now: Maui mother hopes her child's illness brings awareness through "Kulia's Bill"

 
 


States currently hearing a congenital cytomegalovirus bill

This link is very helpful and includes the link to your own representative, regardless of your state:
http://stopcmv.org/en/help/bills.html

CT Magazine featured congenital Cytomegalovirus, comments by Dr. Demmler-Harrison and HB 5525

Connecticut Magazine featured congenital Cytomegalovirus, comments by Dr. Demmler-Harrison, and HB 5525. If you have a moment, you can add your own thoughts or story in comments and/or share it with your friends/social media.

As of this morning, the Conneciticut Public Health Committee hasn't voted on this yet.


or by clicking on:

Mystic Mom Raises Awareness of ‘Stealth Virus’ That Can Catch Pregnant Women Unaware

Lisa Saunders never heard of congenital cytomegalovirus—a lot of people haven’t—and for pregnant women that lack of knowledge can be dangerous and sometimes tragic.
By Erik Ofgang
Comments

Thanks for all you do to prevent this suffering.
Sincerely,
Lisa Saunders, Congenital CMV Mom
Parent Representative, Congenital Cytomegalovirus Foundation
www.congenitalcmv.org
PO Box 389
Mystic, CT 06355

Thursday, February 12, 2015

Due: Thurs, Feb 19, 3pm: Write CT Public Health Committee to Stop #1 Birth Defects Virus

 
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 

Email Subject: H.B. 5525

 
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.

 
Congenital Cytomegalovirus, or cCMV, is the #1 viral cause of birth defects, causing more disabilities than Down syndrome. It causes mental retardation, liver disease, cerebral palsy and deafness as a result of infection in pregnant women‎. Congenital CMV is the leading non-genetic cause of childhood hearing loss. Between 50% and 80% of adults in the U.S. are infected with CMV by 40 years of age. According to the Centers for Disease Control and Prevention, in the U.S.:
  • 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.
(See www.cdc.gov/cmv.)
 
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.
 
Doctors don’t often warn their patients about congenital CMV prevention because they 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 the article, “Washing our hands of the congenital cytomegalovirus disease epidemic.”

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.
 
Certain women are more at risk for contracting CMV than others.  According to Stuart Adler, M.D., “75% of women with a primary infection during pregnancy acquire CMV from their own child under two years of age.”  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.
 
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]

 

*To see a list of sources for the above information, click on: https://drive.google.com/file/d/0B9Klfxar2CmjU1ZLRUc2VlFNbEE/view?usp=sharing
 

 

###

 

 
 
HERE ARE MY LETTERS OF TESTIMONY AS A CONGENITAL CMV MOM:



Email Subject: H.B. 5525






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.

To help educate the public, I wrote the book, "Anything But a Dog! The perfect pet for a girl with congenital CMV," but I need your help to ensure every mother has a chance to protect her unborn child from suffering as my daughter did until her death during a seizure at 16.

Please pass H.B. 5525.

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).

 

Congenital CMV causes mental retardation, liver disease, cerebral palsy and deafness as a result of infection in pregnant women‎. According to the Centers for Disease Control and Prevention, 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 (or 30,000 each year).
  • More than 5,000 babies born each year are permanently disabled by congenital CMV. (www.cdc.gov/cmv)

Although I was a licensed daycare provider while pregnant, I didn’t learn I was at greater risk than other women for contracting CMV until after Elizabeth’s birth. Data from a variety of daycare center studies indicate that between 44 to 100% of two year olds at a single given time were shedding cytomegalovirus. 

 

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


 
 





 
###
 


Here is the wording of H.B. 5525:




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.

 
 
 

Here is information on how to publicly testify: http://www.cga.ct.gov/asp/Content/YourVoice.asp

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.

Maui mother hopes her child's illness brings awareness through "Kulia's Bill"
The Centers for Disease Control and Prevention says approximately 1 in 150 children is born with congenital CMV infection (30,000 in the United ...