Saturday, June 6, 2015

Rep. Bumgardner urges support for cytomegalovirus screening


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Wednesday, June 3, 2015

Moms and Drs Find Hope: CT Governor Signs Bill on #1 Birth Defects Virus


FOR IMMEDIATE RELEASE
DATE: June 4, 2015
CONTACT: Lisa Saunders
Parent rep, Congenital CMV Foundation
PO Box 389, Mystic, CT 06355
 Moms and Doctors Find Hope When Connecticut Becomes 2nd State to Pass Bill on #1 Viral Cause of Birth Defects

  
House Bill 5525 - An Act Concerning Cytomegalovirus: "A screening test for cytomegalovirus for newborns who fail a newborn hearing screening."

Mystic, Conn.— Ever since Lisa Saunders, the parent representative of the Congenital Cytomegalovirus (CMV) Foundation, learned Utah became the first state to pass a bill on the leading viral cause of birth defects in 2013, she has been asking Connecticut to become the second. A CMV bill was passed by the House in 2014, but the Senate failed to vote on it before the end of the legislative session. Then it happened--before the end of the 2015 legislative session, the bill finally became law after the Public Health Committee, House (watch representative urge support), then Senate passed it, sending it onto Governor Malloy who signed House Bill 5525: "An Act Concerning Cytomegalovirus" on May 26, 2015.

"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,"states a press release issued June 4, 2015, by the State Senate Democrats of the Connecticut General Assembly:

 When Saunders and other parents whose children were disabled by congenital CMV, plus those in the medical community who supported the bill, learned the governor had signed the bill, they were ecstatic (see their Public Hearing Testimonies). 


"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 it 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. 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.
Saunders, the author of memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus)," said, “My OB/GYNs didn’t tell me how to prevent congenital CMV, namely by avoiding kissing my toddler near the mouth or sharing food with her, until after my second daughter was born profoundly mentally and physically disabled by the disease. It was then that 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 not only had a toddler if my own, I was also running a licensed daycare center in my  home. 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 died at age 16 during a seizure in 2006.

 “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, Connecticut's American Academy of Pediatrics Early Hearing Detection and Intervention Chapter Champion.

 Ronda Rudd Menlove, Ph.D., the representative responsible for passing and enacting the bill in Utah, and co-founder of the Utah CMV Council, said, ”The Connecticut legislation extends important education and protection to families and infants from the devastating effects of CMV. The impact on lives and the reduction of state dollars needed to serve those impaired by CMV is immeasurable. This is an excellent example of the power of an individual in the political process. We in Utah applaud Connecticut lawmakers for listening to Lisa Saunders and acting to protect all children and families." 

Menlove's daughter, Sara Menlove Doutre, co-founder of the Utah CMV Council, has a daughter affected by congenital CMV. Doutre, a special education and early intervention policy consultant, is encouraged by the number of states pursuing CMV legislation and believes that number will continue to grow. She said: "In 2013, one state, Utah, created a CMV awareness and screening program. In 2015, five states proposed legislation. Connecticut follows Utah as the second state to enact legislation and will be followed by Texas and Hawaii, where bills await governors' signatures."

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 of Texas, Director, Congenital CMV Disease Research, Clinic and Registry. According to the article, Valganciclovir for Symptomatic Congenital Cytomegalovirus Disease, “Treated infants had fewer developmental delays…than untreated infants”

Stephanie Browning McVicar, Au.D., CCC-A, Utah Department of Health, Director, Early Hearing Detection and Intervention / Cytomegalovirus Public Health Initiative, said, "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." 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.

The United States Senate had passed legislation designating the month of June as "National Congenital CMV Awareness Month," while recommending that “more effort be taken to counsel women of childbearing age of the effect this virus can have on their children.” (This occurred through the efforts of Stop CMV.)

 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. 

 You can print CDC's flyer: What Women Should Know About Cytomegalovirus (CMV)

 To see the answers to the most common questions, such as why OB/GYNs don't routinely warn their patients about congenital CMV, why there isn't a vaccine yet, what percentage of people know how to prevent CMV, and how much it costs to care for children disabled by congenital CMV, download the One Page cCMV Fact Sheet plus Bibliography by Lisa Saunders. 

For a detailed presentation on the disease and testing for it, print the presentation,"Congenital CMV 101: From Prevention to Treatment," by Dr. Michael Cannon of the Centers for Disease Control and Prevention (CDC), by clicking on: cCMV 101 Webinar Slides [PDF]. You can hear watch/hear his presentation with the slides at: cCMV 101 Webinar Recording
###

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). 

 Saunders, an award-winning writer and graduate of Cornell University, is also the author of the children's novel, Ride a Horse Not an Elevator, used by Cornell in their state-wide 4-H program. She is a TV talk show host, the author of seven books, history columnist for Pathfinder magazine, a part-time historical interpreter at Mystic Seaport, and member of the Daughters of the American Revolution, Anna Warner Bailey Chapter (Lisa descends from Captain Henry Gale of the American Revolution, a leader in Shays' Rebellion sentenced to hang for treason. Shays' Rebellion led to the U.S. Constitution, which Lisa highlights in her book, Shays' Rebellion: The Hanging of Co-Leader, Captain Henry Gale). Visit Lisa Saunders at: http://www.authorlisasaunders.com/
MORE INFORMATION ABOUT THE CONNECTICUT BILL AND RECENT MEDIA COVERAGE

2015 news coverage of Connecticut and CMV includes:







  • Connecticut passes cytomegalovirus screening law for newborns, Clinical Advisor 

    • CT Magazine June 2015 (One Mystic Mother is Trying to Raise Awareness of a Common Virus That Can Have Devastating Consequences for Pregnant Women)
    2014


    2013




    2009 (Lisa Saunders and CMV)

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    Friday, May 29, 2015

    Tool Kit to Get a CMV Law in Your State

    by Lisa Saunders

     
    My state, Connecticut, just passed House Bill 5525 - "AN ACT CONCERNING CYTOMEGALOVIRUS: A screening test for cytomegalovirus for newborns who fail a newborn hearing screening." If interested, see the article: Mystic Mom 'Overwhelmed' by Governor Signing Law on ‘Stealth Virus’ That Can Catch Pregnant Women Unaware.

    If you would like to get a CMV bill passed in your own state, then Utah's CMV bill, H.B. 81 (passed 2013), is the wording that would be great for you to hope for (most of us want even more than that bill called for, but achieving anything passing the first year is difficult). Getting any CMV bill passed is hard work because states don't want to spend money (even though CMV prevention education would save a lot of money in the long run) and agencies don't like being responsible for one more law. You will, however, raise a lot of CMV awareness in your state by doing this work, and that alone is very rewarding and can achieve long-term results.

    When I learned Utah got a CMV bill passed in 2013, I decided to try raising a bill in Connecticut because all of my writing and speaking on preventing congenital CMV has had no long-term result--it is still not a routine practice of care to educate women of childbearing age about CMV and how to avoid contracting it. Daycare centers still do not educate their workers and clients about CMV prevention.

    To begin a congenital CMV bill in your state, contact your House and Senate representatives and ask them to present a bill similar to Utah's H.B. 81 to the Public Health Committee.  Click here to find your state/territory website: Congenital CMV and Your State/Territory Representatives. Your state's website will also have a link showing you how a bill becomes a law.

    Just so you understand where I'm coming from, I'm the mother of Elizabeth who struggled with the effects of congenital cytomegalovirus (cCMV) until she died at age 16 in 2006 (Elizabeth's life with her big sister and a homeless old dog is told in my memoir, Anything But a Dog! The perfect pet for a girl with congenital CMV). I ran a licensed daycare center in my home when I was pregnant with Elizabeth, which put me at high risk for contracting the disease. No where in the licensing literature was I warned about CMV and the precautions to take.  I am now the parent representative of the  Congenital CMV Foundation.

    The real CMV bill experts are the Utah folks, and I have put their names and contact information below. They started the Utah CMV Council to help others. I also relied on the advice of several Congenital CMV  non-profits, which are listed in my CMV blog and can be found by doing an online search.
     
    I got a lot of initial advice on how to raise a bill from my Town Clerk (the person who issues marriage and dog licenses). She told me who to contact and how best to reach them. I drove to my representative's home and dropped off a copy of Utah's bill, H.B. 81, a letter from me about what I was asking her to do (to present the Utah CMV bill to the Connecticut Public Health Committee), and a  copy of my memoir, Anything But a Dog! The perfect pet for a girl with congenital CMV.

    Your representative's home contact information is usually public record. After contacting my representative a few more times to remind her of my wish and sending her an article about my CMV work published in a local magazine (it's a good idea to contact the media about what you are trying to do), she then sent a personal letter to the Connecticut Public Health Committee along with a copy of Utah's bill, H.B. 81. (Initially, I didn't understand that at certain times of year, our representatives are not in session and therefore not working on bills--that's why its important to ask them when they plan to send in your request so you can follow up with a  reminder.) If you can't get your House or Senate representative to submit the bill, ask others in your state to contact their representatives--someone will be convinced this is needed. The big thing your representative will want to know is if you are committed to seeing the bill through--are you willing to publicly testify at the initial hearing (or send a good friend or family member to do so) and are willing to contact all your friends and family and ask them to contact their representatives to say they want them to support the bill as well?

    When possible, it's always best to see  representatives in person, but for those caring for a critically ill child, that's almost impossible, so e-mails and calls will do (calls are great if you can do it because they/their staff will be forced deal with you and will start talking about cCMV to each other if they get a lot of calls from you/your friends/family). You will need a champion for this cause in both your House and Senate, especially their Chief of Staff. 

    Gather a team of people in your state--parents with children born with congenital CMV; those in the medical community who understand the disease; organizations such the Academy of Pediatrics (AAP) or American Medical Association (AMA) because the state chapters may have access to professional lobbying; your state's American Academy of Pediatrics Early Hearing Detection & Intervention Chapter Champion; the March of Dimes (local chapter); the American Hospital Association; local non profits, national cCMV experts willing to be contacted, those associated with congenital CMV non-profit groups.  Medical insurance companies, pharmaceutical companies working on a CMV vaccine, soap and hand sanitizer manufactures, and universities doing CMV research may also be available to help you--they need the public to have heard of congenital CMV in order to further their mission.
     
    Give your representatives (not just your personal representatives, but any state representatives you can reach/meet as you never know who will passionately fight for the CMV bill) a folder with pockets containing the most important CMV information including what it costs  to take care of children disabled by congenital CMV. Representatives need to know this so they can explain why it's worth spending some money to see this bill pass (costs per child, etc., are provided below). Your representatives want as little paper as possible, so I boiled the most critical information down into this One Page cCMV Fact Sheet plus Bibliography by Lisa Saunders.

     

    The following are the type of documents you want to give your legislators and/or media:



    cCMV PRINTABLE BROCHURES for daycare providers, doctors and parents from Utah Health Department's Children's Hearing and Speech Services (your health department will appreciate seeing that another department has already composed the needed brochures--all they have to do is put their own state info in them).

    One Page cCMV Fact Sheet plus Bibliography by Lisa Saunders (revise this to fit you/your state):

     
    Here is my fact sheet with the activated links for source articles:

    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).
    • 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 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.”

     


     

    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. To test for CMV, a saliva or urine sample is collected from the newborn and sent to a laboratory.

     

    Cost of CMV bill (prevention education)? In 2014, Connecticut estimated cost at $40,000 1st year, $26,000 following years. Newborn hearing tests are already required in Connecticut (and in most states) 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?

    “In the early 1990s, the expense to the US health care system associated with congenital HCMV infection was estimated at approximately $1.9 billion annually, with a average cost per child of over $300,000" (Arvin et al. 2004). In 2013, 3,932,181 babies were born in U.S. with 1/750, or .0013, disabled by cCMV = 5,112 babies.  Connecticut’s annual cost of caring for children disabled by cCMV:  36,085 births X .0013 cCMV disabled = 47 babies X $300,000/year = $14,100,000 or over $14 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 percent during pregnancy to a risk of less than 5 percent 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.”

     


    • 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,” says Dr. Demmler-Harrison, Director, Congenital CMV Disease Research, Clinic & Registry. According to the article, “Valganciclovir for Symptomatic Congenital Cytomegalovirus Disease,” by Kimberlin, M.D., et al. (2015), therapy with intravenous ganciclovir or oral valganciclovir is now the accepted treatment option. “Treated infants had fewer developmental delays…than untreated infants.”

    ###





    In 2014, I compiled this pdf  of my PowerPoint on what I did and how you can do it. It includes  detailed advice on how you can get started, sample letters to politicians, what worked and what didn't work for me, plus how I got the media to help move the state forward. The following was my PowerPoint to educate groups who wanted to learn more about the disease:


    To learn about how your state can replicate Utah’s congenital CMV education and marketing materials, such as its brochure for childcare providers by replacing Utah’s Department of Health logo with your state’s Department of Health logo, contact: Stephanie Browning McVicar, Au.D., CCC-A, DOCTOR OF AUDIOLOGY, Specialty Services Program Manager, State EHDI Director, State of Utah Department of Health, Children with Special Healthcare Needs, Children's Hearing and Speech Services, at (801) 584-8218, smcvicar@utah.gov.





    CONGENITAL CYTOMEGALOVIRUS CONTACTS




    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. Contact: sara@doutreconsulting.com  



    Stephanie Browning McVicar, Au.D., CCC-A, DOCTOR OF AUDIOLOGY (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.



    Rep.Ronda Rudd Menlove, PhD. 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. Utah CMV Council, Ronda.menlove@gmail.com.

    Dr. Brenda K. Balch, MD, CT’s 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. bkbalch@sbcglobal.net, (Sent Testimony to CT’s HB 5525).



    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 parent support. (Sent Letter of Testimony to CT’s HB 5525).



    CDC’s Michael Cannon, Ph.D. mrc7@cdc.gov, a research epidemiologist at the Centers for Disease Control and Prevention. Dr. Cannon is particularly interested in developing strategies to prevent congenital CMV infection through public awareness and education.



    Lenore Pereira, Ph.D., Founder of Congenital Cytomegalovirus Foundation, and Professor, Cell and Tissue Biology Department, University of California San Francisco. 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


    Lisa Saunders, Parent representative, Congenital CMV Foundation, 
    P.O. Box 389, Mystic, CT 06355, LisaSaunders42@gmail.com, Cell: 845-222-8593

    ###

    SEE: Connecticut House Bill 5525 - "AN ACT CONCERNING CYTOMEGALOVIRUS:
    Bill Status and "Letters of testimony" to the State of Connecticut from parents, medical community and concerned citizens:  http://www.cga.ct.gov/asp/menu/CommDocTmyBillAllComm.asp?bill=HB-05525&doc_year=2015



     

    Quotes:

     

    The benefit of passing HB 5525: 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, “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.” See Dr. Balch's public hearing testimony at: http://www.cga.ct.gov/2015/PHdata/Tmy/2015HB-05525-R000220-Brenda%20Kinsella%20Balch,%20MD.%20AAP%20Connecticut%20Chapter%20Champion%20for%20the%20Early%20Hearing%20Detection%20and%20Intervention-TMY.PDF

    Stephanie Browning McVicar, Au.D., CCC-A, Utah Department of Health, Director, Early Hearing Detection and Intervention / Cytomegalovirus Public Health Initiative, said:
    "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."
    McVicar added that states are welcome to revise their "CMV prevention brochures for doctors, parents, and daycare providers by removing our state logo/contact information and replacing it with theirs. If they could put an acknowledgement to the Utah Dept. of Health on the brochures, that would be great."


     
    Casey Famigletti of New Canaan, Connecticut, whose daughter was also born with congenital CMV, stated in her public hearing testimony to the Public Health Committee: "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?" See Famigletti's entire testimony at: http://www.cga.ct.gov/2015/PHdata/Tmy/2015HB-05525-R000220-Casey%20Famigletti-TMY.PDF
     
     
    Dr. Demmler-Harrison, Director, Congenital CMV Disease Research, Clinic & Registry, said, “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.”  
     
    As are as I know, these are the states who are working on a CMV bill:
    Hawaii: House Bill 782 - "RELATING TO THE CYTOMEGALOVIRUS"
    Bill Status


    Illinois: House Bill 0184
    Bill Status


    Tennessee: House Bill 0539
    Bill Status


    Texas: Senate Bill 791 - "Relating to testing for and education about congenital cytomegalovirus in infants."
    Bill Status
     

     

    Bibliography/Sources

    Carlson, Amanda, MD; Norwitz, Errol R MD, PhD; Stiller, Robert J , MD. (Fall 2010). Cytomegalovirus Infection in Pregnancy: Should All Women Be Screened? . Retrieved from National Center for Biotechnology Information : http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3046747/




    Adler SP, Finney JW, Manganello AM, Best AM. (2004, October). Prevention of child-to-mother transmission of cytomegalovirus among pregnant women. Retrieved from National Center for Biotechnology Information: http://www.ncbi.nlm.nih.gov/pubmed/15480372




    Adler, Stuart, MD, Emeritus Professor of Pediatrics and Chairman, Division of Infectious Disease. (2014, Feb. 28). Public Hearing Testimony, Raised H.B. No. 5147 . Retrieved from Connecticut General Assembly: http://www.cga.ct.gov/2014/PHdata/Tmy/2014HB-05147-R000228-Stuart%20Adler,%20Emeritus%20Professor%20of%20Pediatrics%20and%20Chairman,%20Division%20of%20Infectious%20Disease-TMY.PDF
    Armstrong, Farah,President and Founder, Maddie's Mission. (2014, Feb. 28). Public Hearing Testimony, Raised H.B. No. 5147 . Retrieved from Connecticut General Assembly : http://www.cga.ct.gov/2014/PHdata/Tmy/2014HB-05147-R000228-Farah,%20Armstrong-TMY.PDF
    Arvin, A. et. al., . (2004). Vaccine Development to Prevent Cytomegalovirus Disease: Report from the National Vaccine Advisory Committee. Retrieved from Oxford Journals: http://cid.oxfordjournals.org/content/39/2/233.long
    Bailey, Jenny Meeden, Texas, baby first in Houston to receive ganciclovir treatment. (2014, Feb. 28). Public Hearing Testimony, Raised H.B. No. 5147. Retrieved from Connecticut General Assembly: http://www.cga.ct.gov/2014/PHdata/Tmy/2014HB-05147-R000228-Jenny%20Meeden%20Bailey-TMY.PDF
    Balch, Brenda K., MD. (2015, February 20). HB 5525. Retrieved from Connecticut General Assembly: http://www.cga.ct.gov/2015/PHdata/Tmy/2015HB-05525-R000220-Brenda%20Kinsella%20Balch,%20MD.%20AAP%20Connecticut%20Chapter%20Champion%20for%20the%20Early%20Hearing%20Detection%20and%20Intervention-TMY.PDF
    Blazek, Nicole, Senior Clinical Content Editor. (2014, June 21). Educate pregnant women to prevent congenital CMV. Retrieved Reference: 1.Pina AL. “Breaking the Silence About Congenital CMV.” Presented at: AAPN 2014. Jun 17-22; Nashville, Tenn., from The Clinical Advisor: http://www.clinicaladvisor.com/educate-pregnant-women-to-prevent-congenital-cmv/article/357115/
    Cannon MJ, Westbrook K, Levis D, Schleiss MR, Thackeray R, Pass RF. . (2012, May). Awareness of and behaviors related to child-to-mother transmission of cytomegalovirus. Retrieved January 9, 2015, from National Center for Biotechnology Information, U.S. National Library of Medicine : http://www.ncbi.nlm.nih.gov/pubmed/22465669
    Cannon, Michael J.; Davis, Katherine Finn. (2005, June 20). Washing our hands of the congenital cytomegalovirus disease epidemic. Retrieved from BMC Public Health: http://www.biomedcentral.com/1471-2458/5/70
    Centers for Disease Control and Prevention. (n.d.). Retrieved from Congenital CMV Infection Trends and Statistics: http://www.cdc.gov/cmv/trends-stats.html
    Centers for Disease Control and Prevention (CDC). (n.d.). Cytomegalovirus (CMV) and Congenital CMV Infection. Retrieved from Centers for Disease Control and Prevention (CDC): http://www.cdc.gov/cmv/index.html
    Centers for Disease Control and Prevention (CDC). (n.d.). Infant Health. Retrieved from Centers for Disease Control and Prevention (CDC): http://www.cdc.gov/nchs/fastats/infant-health.htm
    Centers for Disease Control and Prevention (CDC). (n.d.). State and Territorial Data. Retrieved from Centers for Disease Control and Prevention (CDC): http://www.cdc.gov/nchs/fastats/state-and-territorial-data.htm
    Children's Hearing and Speech Services. (n.d.). Retrieved from Utah Department of Health: http://www.health.utah.gov/cshcn/CHSS/CMV.html
    Cody, S. (2015, May 6). CT Now. Retrieved from CT Moms Fight for CMV Legislation : "Connecticut Moms Fight for CMV Legislation":http://www.ctnow.com/family/ctnow-ct-moms-fight-for-cmv-legislation-20150505,0,3850658.column
    Cody, S. (2015, May 27). New law in Connecticut to fight number one viral cause of birth defects. Retrieved from Fox CT: http://foxct.com/2015/05/27/new-law-in-connecticut-to-fight-number-one-viral-cause-of-birth-defects/
    Congenital Cytomegalovirus Infection Time To Test Newborns. (2014, July 1). Retrieved December 6, 2014, from ENT Today: http://www.enttoday.org/article/congenital-cytomegalovirus-infection-time-to-test-newborns/
    Cytomegalovirus (CMV) education bill on hold for now. (2014, May 8). Retrieved from Fox CT: http://foxct.com/2014/05/08/cytomegalovirus-cmv-education-bill-on-hold-for-now/
    Cytomegalovirus-CMV: H.B. 81 (2013) Public Health Initiative in conjunction with the Utah Department of Health. (n.d.). Retrieved from Utah Department of Health: http://www.health.utah.gov/cshcn/PDF/CMV%20Utah%20Flyer.pdf
    Demmler-Harrison,Gail, MD,Director, Congenital CMV Disease Registry and Research Program. (2015, Feb. 20). Public Hearing Testimony, Raised H.B. No. 5525. Retrieved from Connectictut General Assembly: http://www.cga.ct.gov/2015/PHdata/Tmy/2015HB-05525-R000220-Gail%20Demmler%20Harrison,%20MD-TMY.PDF
    Doutre, Sara, co-founder, Utah CMV Council; Menlove,Ronda, Utah House of Representatives,. (n.d.). Retrieved from Utah CMV Council: http://www.utahcmvcouncil.org/about-us/
    Goderis, Julie, MD, et al. (2014, October 27). Hearing Loss and Congenital CMV Infection: A Systematic Review. Retrieved from Pediatrics: http://pediatrics.aappublications.org/content/early/2014/10/21/peds.2014-1173.abstract#aff-1
    Greenlee, Janelle, President and Founder, Stop CMV. (2014, Feb. 28). Public Hearing Testimony, Raised H.B. No. 5147 . Retrieved from Connecticut General Assembly: http://www.cga.ct.gov/2014/PHdata/Tmy/2014HB-05147-R000228-Janelle%20Greenlee,%20President%20and%20Founder,%20Stop%20CMV-TMY.PDF
    H.B. 81 Second Substitute Cytomegalovirus Public Health Initiative. (2013 General Session). Retrieved from Utah State Legislature: http://le.utah.gov/~2013/bills/static/hb0081.html
    H.B. No. 5147. (2014). Retrieved from Connecictut General Assembly : http://www.cga.ct.gov/asp/cgabillstatus/cgabillstatus.asp?selBillType=Bill&bill_num=5147&which_year=2014
    Kimberlin, David W., M.D., et al. (2015, March 5). Valganciclovir for Symptomatic Congenital Cytomegalovirus Disease. Retrieved from The New Enland Journal of Medicine: http://www.nejm.org/doi/full/10.1056/NEJMoa1404599
    Knowledge and Awareness of Congenital Cytomegalovirus Among Women. (2006, December 28). Retrieved from National Center for Biotechnology Information: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1779612/
    Knowledge and Practices of Obstetricians and Gynecologists Regarding Cytomegalovirus Infection During Pregnancy --- United States, 2007. (n.d.). Retrieved from Centers for Disease Control and Prevntion (CDC): http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5703a2.htm
    Lopez, Adriana, M.H.S., et al. (n.d.). Preventing Congenital Toxoplasmosis . Retrieved February 7, 2015, from CDC: http://www.cdc.gov/mmwr/preview/mmwrhtml/rr4902a5.htm
    Maminta, J. (2015, March 3). Mystic mom raising awareness about potentially deadly virus. Retrieved from News 8: http://wtnh.com/2015/03/03/mystic-mom-raising-awareness-about-potentially-deadly-virus/
    Mother on a mission to stop birth defects. (2014, April 28). Retrieved from Fox CT : http://foxct.com/2014/04/28/mother-on-a-mission-to-stop-birth-defects/
    National Congenital CMV Disease Registry . (n.d.). Retrieved from Baylor College of Medicine: https://www.bcm.edu/pedi/infect/cmv/
    Ofgang, E. (2015, June). Mystic Mom 'Overwhelmed' by Governor Signing Law on ‘Stealth Virus’ That Can Catch Pregnant Women Unaware. Retrieved from Connecticut Magazine: http://www.connecticutmag.com/Blog/Health-Wellness/February-2015/Mystic-Mom-Raises-Awareness-of-Stealth-Virus-That-Can-Catch-Pregnant-Women-Unawares/
    Pass RF, Hutto C. (1986, Jul-Aug 8). Group day care and cytomegaloviral infections of mothers and children. Retrieved from National Center for Biotechnology Information: http://www.ncbi.nlm.nih.gov/pubmed/3018892
    Pereira, Lenore, PhD, Founder, Congenital CMV Foundation. (n.d.). Retrieved from Congenital CMV Foundation: http://www.congenitalcmv.org/foundation.htm
    Preventing Congenital CMV During Pregnancy. (2015, Feb 9). Retrieved Feb 2015, 17, from News 8's Connecticut Style: http://wtnh.com/2015/02/09/preventing-congenital-cmv-during-pregnancy/
    Saunders, L. (2009). Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus). Retrieved from http://www.amazon.com/Anything-But-Dog-Congenital-Cytomegalovirus/dp/1588329968/ref=sr_1_1?s=books&ie=UTF8&qid=1340644532&sr=1-1&keywords=anything+but+a+dog+lisa+saunders
    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. Retrieved from Youtube.
    Saunders, Lisa, Parent Representative, Congenital CMV Foundation. (2014, Feb. 28). Public Hearing Testimony, Raised H.B. No. 5147. Retrieved from Connecictut General Assembly: http://www.cga.ct.gov/2014/PHdata/Tmy/2014HB-05147-R000228-Lisa%20Saunders,%20Parent%20Representative,%20Congenital%20CMV%20Foundation-TMY.PDF
    Schleiss, M. R. (2008). Cytomegalovirus Vaccine Development. Retrieved Januarary 14, 2015, from US National Library of Medicine: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2831992/
    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: http://www.journalofclinicalvirology.com/article/S1386-6532(09)00419-3/abstract
    What Childcare Providers Need to Know about CMV. (n.d.). Retrieved Feb 17, 2015, from Utah Department of Health, Children with Special Healthcare Needs, Children's Hearing and Speech Services: http://www.health.utah.gov/cshcn/PDF/CMV%20for%20Childcare%20Providers%20NEED%20TO%20KNOW.pdf
    What Women Should Know About Cytomegalovirus (CMV). (n.d.). Retrieved from Congenital Cytomegalovirus Foundation: http://congenitalcmv.org/CDCbrochure.pdf
    ###
    The following flyers in two languages plus the CDC's webinar on congenital CMV are taken from Utah's webpage at:http://www.health.utah.gov/cshcn/CHSS/CMV.html:

    CMV Core Facts (Datos Fundamentales de CMV)
    CMV Utah Flyer (Citomegalovirus)
    PRINTABLE BROCHURES:
    (Please change orientation to LANDSCAPE when printing brochures allowing the brochures to print properly. In addition the brochures are double-sided tri-fold, adjust printer settings accordingly for proper printing.)
    Congenital CMV and Hearing Loss (CMV Congenito y la Perdida de Audicion)
    CMV What Women NEED TO KNOW (Lo Que Una Mujer Necesita Saber Acerca de CMV)
    CMV What Childcare Providers NEED TO KNOW (Lo qué los proveedores de cuidado infantil NECESITAN SABER sobre CMV)
    For Health Care and Newborn Hearing Screening Providers:

    ***FREE ONLINE WEBINAR!***

    "cCMV 101: Congenital Cytomegalovirus from Prevention to Treatment"

    Presented by: Dr. Michael Cannon of the Centers for Disease Control and Prevention (CDC)
     Connecticut in the News
    2015
     
  • Fox CT: New law in Connecticut to fight number one viral cause of birth defects
  • Mystic Mom 'Overwhelmed' by Governor Signing Law on ‘Stealth Virus’ That Can Catch Pregnant Women Unaware
  • New Cytomegalovirus (CMV) Law in Connecticut


    •  "Connecticut Moms Fight for CMV Legislation":http://www.ctnow.com/family/ctnow-ct-moms-fight-for-cmv-legislation-20150505,0,3850658.column





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