Friday, May 8, 2015

My letter to Connecticut Senators on HB 5525


HB 5525: AN ACT CONCERNING CYTOMEGALOVIRUSnow on Senate Calendar (5/11) [pdf]

Watch the Senate Live Stream: http://www.cga.ct.gov/asp/menu/stream1.asp
List of Senate members: http://www.cga.ct.gov/asp/menu/slist.asp

My letter to the Connecticut Senate:
 
On Wednesday, May 6, the Connecticut House of Representatives passed HB 5525: AN ACT CONCERNING CYTOMEGALOVIRUS
 
I am one of the mothers in Connecticut whose child suffered from severe disabilities caused by congenital cytomegalovirus (CMV), the #1 viral cause of birth defects. I am being interviewed speaking to many of you on News 8 at CT Capitol RE: CMV.
 
In addition to deafness, congenital CMV causes mental retardation, liver disease and cerebral palsy--more disabilities than Down syndrome-- as a result of infection in pregnant women‎.

Please click into this article, Fox CT: Moms Fight for CMV Law, for more information about our work to raise a prevention message and to ensure those born with congenital CMV receive the immediate treatment they need to improve outcomes. I have also cut and pasted this article below my signature, where I list other media coverage.*

After meeting with my senator last year, he placed CMV prevention on this website: http://senatedems.ct.gov/maynard.php. See his section on the main page: "What Pregnant Mothers Need to Know About CMV."

According to the CDC, in the U.S.: 

  • Between 50% and 80% of adults in the U.S. are infected with CMV by 40 years of age.

  • CMV is the most common viral infection that infants are born with in the United States

  • Every hour, congenital CMV causes one child to become disable

  • About 1 in 150 children is born with congenital (present at birth) CMV infection. This means that in the United States, about 30,000 children are born with congenital CMV infection each year.

  • And about 1 of every 5 children born with congenital CMV infection will develop permanent problems (such as hearing loss or developmental disabilities) due to the infection.

  • About 1 in 750 children in the United States is born with or develops permanent problems due to congenital CMV infection. In the United States, more than 5,000 children each year suffer permanent problems caused by CMV infection.

  • Using the CDC’s statistics of 1 out of 750 babies are born permanently disabled by CMV, that means of the 36,000 babies born in Connecticut each year, approximately 50 will be permanently disabled by congenital CMV (sources of calculations are listed below my signature).

 
Excerpt of HB 5525 from File No. 512 [pdf]:
"Starting January 1, 2016, this bill requires all health care institutions caring for newborn infants to test those who fail a newborn hearing screening for cytomegalovirus (CMV)."

 
The benefit of passing this bill, according to Dr. Brenda Kinsella Balch, a Connecticut pediatrician and the Connecticut Chapter Champion for the American Academy of Pediatrics Early Hearing Detection and Intervention Program,  is that: “Newborn hearing screens in Connecticut have been mandated since July 2000 and 99% of infants have been screened annually for several years. Testing for CMV is not very expensive and is covered by insurance because CMV is known to cause hearing loss and therefore to test for it is reasonable.” She adds: “If we begin testing infants who fail their newborn hearing screen, not only will it increase awareness and hopefully prevention of CMV transmission, but we will be able to identify early those infants with congenital CMV and therefore have the opportunity to intervene earlier to optimize their outcomes.”

Therapy with intravenous ganciclovir or oral valganciclovir is now the accepted treatment option. “Treated infants had fewer developmental delays…than untreated infants,” according to the article, “Valganciclovir for Symptomatic Congenital Cytomegalovirus Disease,” by Kimberlin, M.D., et al. (2015).

According to Dr. Demmler-Harrison, Director, Congenital CMV Disease Research, Clinic & Registry, “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.”

Dr. Demmler-Harrison adds:  “If congenital CMV is diagnosed early, it avoids the need for expensive genetic testing and other tests because diagnosis is established. So, this saves money.  Also, some newborns will qualify for treatment based on their doctor evaluation, so testing is important. Testing also allows for more careful follow-up over the childhood/adolescence, since hearing loss from congenital CMV is progressive through adolescence and early adulthood.”  

Last year, the Connecticut House passed a similar bill, HB5147 (2014), but the Senate failed to vote on it before the end of the session (there were only two days left). Connecticut's bill last year was mentioned in this AP article went worldwide: Silent virus a rare, dangerous risk for the unborn

How can CMV be avoided in the first place? See CDC: CMV Prevention tips at: http://www.cdc.gov/cmv/index.html 

  • 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  kiss young children on the lips or share food, drinks, or eating utensils with them.


  • 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.
Download these pdf flyers for more information:
 
Sincerely,
 

MORE INFORMATON:
If interested in learning about pubic opinion, the following is a good summary of letters of testimony from the medical community, parents and concerned citizens: http://www.cga.ct.gov/2015/JFR/H/2015HB-05525-R00PH-JFR.htm

All letters of testimony:  http://www.cga.ct.gov/asp/menu/CommDocTmyBillAllComm.asp?bill=HB-05525&doc_year=2015


Connecticut and Congenital CMV in the News


 

2015


2014

2013


2009 (Lisa only from now on)


 

 

 

HB 5525

AN ACT CONCERNING CYTOMEGALOVIRUS.
SUMMARY:
Starting January 1, 2016, this bill requires all health care institutions caring for newborn infants to test those who fail a newborn hearing screening for cytomegalovirus (CMV). It requires the testing be done (1) within available appropriations and (2) as soon as is medically appropriate, unless, as allowed by law, their parents object on religious grounds.
 Like existing law that requires these institutions to test newborn infants for cystic fibrosis, severe combined immunodeficiency disease, and critical congenital heart disease, the test for cytomegalovirus is not part of the state's newborn screening program for genetic and metabolic disorders. That program, in addition to screening, directs parents of identified infants to counseling and treatment.
BACKGROUND
CMV
CMV is a type of herpesvirus, which places it in a group with chickenpox, shingles, and mononucleosis. Although usually harmless in healthy adults and children, CMV in newborns can lead to hearing loss or developmental disabilities. Transmission from mother to fetus occurs during pregnancy.
Explanation
The bill requires hospitals to test for cytomegalovirus when a newborn fails a hearing screening. This requirement may have a fiscal impact for the University of Connecticut Health Center (UCHC). The cytomegalovirus test costs approximately $150. As only a few infants annually fail the newborn hearing screening at UCHC, any cost incurred at UCHC is expected to be minimal. Additionally, such costs may be offset by private insurance billing, to the extent that the test is a covered service.
Bill as amended added:
"(d) The administrative officer or other person in charge of each institution caring for newborn infants shall report any case of cytomegalovirus that is confirmed as a result of a screening test administered pursuant to subdivision (3) of subsection (b) of this section to the Department of Public Health in a form and manner prescribed by the Commissioner of Public Health."

 
Q. Other than collecting data on the number of cases of hearing loss caused by CMV, will the Department of Health have to do anything like education?
A. No, the education portion of the initial proposed bill was removed because there was a cost associated with it.
 
Q. The bill states the CMV testing be done “within available appropriations.” What does that mean exactly?
A. The Bill states: “…such costs may be offset by private insurance billing, to the extent that the test is a covered service.”
 
Q. What does an average test cost? 

A. The Bill states: “The cytomegalovirus test costs approximately $150. As only a few infants annually fail the newborn hearing screening at [University of Connecticut Health Center]UCHC, any cost incurred at UCHC is expected to be minimal.”
 
 
 
 
FROM MY FACTSHEET THAT CAN BE DOWNLOADED:One Page cCMV Fact Sheet plus Bibliography by Lisa Saunders
What is congenital Cytomegalovirus (cCMV)?
The #1 viral cause of birth defects. It causes mental retardation, liver disease, cerebral palsy and deafness--more disabilities than Down syndrome-- as a result of infection in pregnant women‎. 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, 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.
                                                       
Is this the “kitty litter” disease? No, that is toxoplasmosis, which causes fewer birth defects than 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 the article, “Washing our hands of the congenital cytomegalovirus disease epidemic.”
 
How many know about congenital CMV? Only 7% of  men and 13%  of women surveyed had heard of congenital CMV.
 
What about a vaccine against CMV? Researchers have been working on a vaccine against HCMV (human cytomegalovirus) for years. One reason for delay in successful development is “there has been insufficient education about the problem of HCMV infection…” Pharmaceutical companies need to know that a vaccine will be used because people know about the disease.
 
What can our state do to protect our children from congenital CMV? Educate public. Pass a bill similar Utah’s H.B 81 (2013) requiring its Health Department to provide cCMV prevention brochures for doctors, parents, and daycare providers and test newborns for cCMV if they fail hearing screen tests so their families can be educated about early intervention services and treatment options.
 
Cost of CMV bill (prevention education)? In 2014, CT estimated $40,000 1st year, $26,000 following years. Newborn hearing tests already required in Connecticut and insurance pays for CMV testing if baby fails hearing screen.
 
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, the following calculates cost per child (which varies with severity of disability). In 2013, 3,932,181 were born in U.S. with 1/750, or .0013, disabled by cCMV = 5,112.  Annual cost per disabled child = $1,000,000,000/5112 or $195,618/year/child. “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 Research, Clinic & Registry. CT’s Annual cost of caring for children disabled by cCMV:  36,085 births X .0013 cCMV disabled = 47 children X $195,618/year/child= $9,194,046, or over $9 million annually.
 
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. 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 CMV.  Day-care workers are at greater risk.
 
Will it make a difference if women are educated on CMV prevention? Yes, according to studies in the U.S. and France.
Dr. Demmler-Harrison,  states: “Studies have shown that women who know they are CMV seronegative, know they are pregnant, and know about their toddler's CMV shedding are the most likely to prevent CMV transmission and reduce their risk from over 50% during pregnancy to a risk of < 5% during pregnancy.  It is not likely that isolated instances of exposure to saliva or drool will result in transmission. Most studies suggest prolonged repeated exposures over time are important for CMV transmission.”
 
How can CMV be avoided? See CDC: CMV Prevention tips at: http://www.cdc.gov/cmv/index.html
·           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  kiss young children on the lips or share food, drinks, or eating utensils with them.
·           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 Research, Clinic & Registry.
 
 
  •  
     

     
    Here are all the CT senators:http://www.cga.ct.gov/asp/menu/slist.asp

  • fonfara@senatedems.ct.gov      860-240-0462

    eric.coleman@cga.ct.gov             860-240-0366

    larson@senatedems.ct.gov        860-240-8585

    steve.cassano@cga.ct.gov           860-240-8600

    beth.bye@cga.ct.gov     860-240-0428

    terry.gerratana@cga.ct.gov        860-240-0584

    John.A.Kissel@cga.ct.gov             860-240-0531

    Kevin.Witkos@cga.ct.gov             860-240-8800

    paul.doyle@cga.ct.gov  860-240-0475

    gary.winfield@cga.ct.gov             860-240-0422

    martin.looney@cga.ct.gov           860-240-8614

    ted.kennedy@cga.ct.gov             office ?

    bartolomeo@senatedems.ct.gov             860-240-0441

    slossberg@senatedems.ct.gov  860-240-0482

    Hartley@senatedems.ct.gov      860-240-0006

    Joe.Markley@cga.ct.gov              860-240-0381

    joseph.crisco@cga.ct.gov             860-240-0189

    andrew.maynard@cga.ct.gov    860-240-0591

    catherine.osten@cga.ct.gov       860-240-8600

    Paul.Formica@cga.ct.gov             office?

    Kevin.Kelly@cga.ct.gov 860-240-8800

    marilyn.moore@cga.ct.gov         860-240-0425

    Michael.McLachlan@cga.ct.gov 860-240-0068

    Duff@senatedems.ct.gov            860-240-0414

    Toni.Boucher@cga.ct.gov            860-240-8800

    carlo.leone@cga.ct.gov 860-240-8600

    Tony.Hwang@cga.ct.gov              860-240-8805

    mae.flexer@cga.ct.gov 860-240-5237

    Clark.Chapin@cga.ct.gov              860-240-0445

    Henri.Martin@cga.ct.gov             860-240-0022

    Rob.Kane@cga.ct.gov    860-240-8875

    Art.Linares@cga.ct.gov 860-240-8800

    Len.Fasano@cga.ct.gov 860-240-8800

    Anthony.Guglielmo@cga.ct.gov                860-240-0574

    Scott.Frantz@cga.ct.gov               860-240-8800
     













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    Attention, Moms: a pregnant women shouldn't kiss a toddler on the mouth.
    Have you heard this vital advice at the OBGYN's office?
    Maybe not.  But, some Connecticut moms are working feverishly to raise awareness about congenital CMV (cytomegalovirus) - a common virus that can pass from a pregnant woman to her fetus causing severe birth defects.
    Last year at this time, Lisa Saunders of Mystic shared her daughter's story with Mommy Minute, as she worked to get a bill passed through the legislature that would mandate public education and testing of CMV.  The House passed the bill two days before the end of the session but the Senate never called it to vote.  Basically, the efforts stalled but Saunders vowed to come back this year - stronger and even more loud.
    Now, the fight is on - once again - and more mothers are joining Saunders in her mission.
    This year, the Public Health Committee passed HB 5525 which mandates that a baby who fails a required hearing screen must be tested for CMV.
    New Canaan's Casey Famigletti testified at the public hearing. 
    While her daughter was in-utero, she found out that the baby had a "marker" for CMV.  Doctors said she "probably" didn't need to worry.  But, Casey did indeed test positive for the virus.  The baby was born with symptoms at 30 weeks and stayed in the hospital for 72 days.  "The first misconception that I had about CMV was that it's a rarity.  But, now that I'm much more educated, I've learned that 1 in 150 children are born with it and 1 out of 750 are born with disabilities due to it," says Famigletti.  "To me, that's not rare.  It shows the OBGYN community's lack of knowledge about the virus which comes from a lack of education."
    Here is important information from last year's story:
    "The interventions are simple," explains Dr. Brenda Balch, a pediatrician with a specialty in hearing loss prevention. "When you're pregnant, it's 9 months of being more cautious in regards to the spread of disease." For adults and children, CMV is a common virus transmitted by person to person contact, causing mild, flu-like symptoms. According to the Centers for Disease Control and Prevention, 30,000 babies are born with the virus each year in the United States. Five thousand will suffer serious complications, such as mental disabilities, vision problems and hearing loss. Pregnant women who have toddlers or work in a daycare setting are most at risk and should wash hands often, especially after changing diapers or handling saliva-covered toys. Also: They should resist sharing food with a young child or kissing him or her on the mouth. "That's a hard thing to say to a pregnant woman but if it can prevent something like CMV, it's worth it," says Balch.
    Famigletti's daughter, Gracie, is now 6 years old.  "She has bilateral cochlear implants - she hears with those.  She started walking when she was 4 so she has motor delays.  She was recently diagnosed with autism and she's fed through a feeding tube," says Famigletti, a mother of three.  She hopes to educate pregnant moms by sharing her experience.  "During pregnancy, you learn about a whole slew of things that you shouldn't be doing - like drinking alcohol, smoking cigarettes, changing kitty litter boxes, eating soft cheeses, deli meats...and I followed everything that my OB told me," she says, noting that if her OB had told her to be cautious around young children and avoid their saliva, she would have done that, too.  "Your child is eating mac-n-cheese and they finish-up, there's a little left and you take a bite of it.  The child looks totally healthy but you don't know if they're carrying this really common virus that's not dangerous to them but it's detrimental to a pregnancy."
    This year's legislative session ends in early-June, meaning these passionate women have less than a month to get the House and Senate to pass the CMV Bill. 
    To lend your support, contact your legislator.
    Check out Stop CMV for more information about the virus.
    ###
    fight-for-cmv-legislation-20150505,0,3850658.column

     

     MY LETTER TO:
    to me
     



    On Wednesday, May 6, the Connecticut House of Representatives passed HB 5525: AN ACT CONCERNING CYTOMEGALOVIRUS [CMV]

    Congenital (meaning present at birth) CMV causes deafness, mental retardation, liver disease and cerebral palsy--more disabilities than Down syndrome-- as a result of infection in pregnant women‎.

    Is there anything you can do to make sure the CT Senate votes on it before the end of the session? The House passed a similar bill last year, but the Senate didn't vote on it (this year, the prevention education portion was removed from the bill because it was estimated to cost $40,000 the first year). Utah passed a similar bill in 2013.


    Women who work in child care centers or have toddlers in child care centers are at a higher risk for contracting CMV and passing it onto their unborn child.

    I am one of the mothers in Connecticut whose child suffered from severe disabilities caused by congenital cytomegalovirus (CMV), the #1 viral cause of birth defects, because none of my OB/GYNs warned me how to prevent contracting this common virus. (At the time of my pregnancy, I ran a licensed daycare center from my home.) Here I am speaking to the New 8's Jocelyn Maminta, Medical/Health Reporter, and legislators in Harford, CT: http://wtnh.com/2015/03/03/mystic-mom-raising-awareness-about-potentially-deadly-virus/


    After meeting with my senator last year, he placed CMV prevention on this website: http://senatedems.ct.gov/maynard.php. See his section on the main page: "What Pregnant Mothers Need to Know About CMV."

    According to the CDC, in the U.S.:
    •Between 50% and 80% of adults in the U.S. are infected with CMV by 40 years of age.
    •CMV is the most common viral infection that infants are born with in the United States
     • Every hour, congenital CMV causes one child to become disable
    • About 1 in 150 children is born with congenital (present at birth) CMV infection. This means that in the United States, about 30,000 children are born with congenital CMV infection each year.
    • And about 1 of every 5 children born with congenital CMV infection will develop permanent problems (such as hearing loss or developmental disabilities) due to the infection.
    • About 1 in 750 children in the United States is born with or develops permanent problems due to congenital CMV infection.

    In the United States, more than 5,000 children each year suffer permanent problems caused by CMV infection.

    Using the CDC’s statistics of 1 out of 750 babies are born permanently disabled by CMV, that means of the 36,000 babies born in Connecticut each year, approximately 50 will be permanently disabled by congenital CMV. It is estimated that it costs approximately $200,000 annually to take care of children disabled by congenital CMV.

    Excerpt of HB 5525: "Starting January 1, 2016, this bill requires all health care institutions caring for newborn infants to test those who fail a newborn hearing screening for cytomegalovirus (CMV)."

    The benefit of passing this bill, according to Dr. Brenda Kinsella Balch, a Connecticut pediatrician and the Connecticut Chapter Champion for the American Academy of Pediatrics Early Hearing Detection and Intervention Program,  is that: “Newborn hearing screens in Connecticut have been mandated since July 2000 and 99% of infants have been screened annually for several years. Testing for CMV is not very expensive and is covered by insurance because CMV is known to cause hearing loss and therefore to test for it is reasonable.” She adds: “If we begin testing infants who fail their newborn hearing screen, not only will it increase awareness and hopefully prevention of CMV transmission, but we will be able to identify early those infants with congenital CMV and therefore have the opportunity to intervene earlier to optimize their outcomes.” Dr. Balch may be reached at: bkbalch@sbcglobal.net

    Therapy with intravenous ganciclovir or oral valganciclovir is now the accepted treatment option. “Treated infants had fewer developmental delays…than untreated infants,” according to the article, “Valganciclovir for Symptomatic Congenital Cytomegalovirus Disease,” by Kimberlin, M.D., et al. (2015).

    According to Dr. Demmler-Harrison, Director, Congenital CMV Disease Research, Clinic & Registry, “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.”

    Dr. Demmler-Harrison adds:  “If congenital CMV is diagnosed early, it avoids the need for expensive genetic testing and other tests because diagnosis is established. So, this saves money.  Also, some newborns will qualify for treatment based on their doctor evaluation, so testing is important. Testing also allows for more careful follow-up over the childhood/adolescence, since hearing loss from congenital CMV is progressive through adolescence and early adulthood.”  Dr. Demmler-Harrison may be reached at: gdemmler@bcm.edu

    How can CMV be avoided in the first place? See CDC's CMV Prevention tips at: http://www.cdc.gov/cmv/index.html
    •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  kiss young children on the lips or share food, drinks, or eating utensils with them.
    • 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.

    Please let me know if you can help prevent these terrible birth defects from this preventable birth defects virus.

    Sincerely,

    Lisa Saunders, Parent representative, Congenital CMV Foundation, http://congenitalcmv.org/, and author of the book, "Anything But a Dog! The perfect pet for a girl with congenital CMV" and "Mystic Seafarer's Trail: Secrets behind the 7 Wonders, Titanic's Shoes, Captain Sisson's Gold, and Amelia Earhart's Wedding"
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