Tuesday, April 1, 2014

Ask CT Legislators to Pass H.B. 5147

Connecticut's Public Health Committee supports a bill, HB 5147, requiring that women be given a chance to learn how to prevent the #1 birth defects virus from happening to their unborn child. Cytomegalovirus (CMV) causes more disabilities than Down syndrome, but women aren't routinely educated on how to prevent it by their OB/GYNs or daycare centers (where a large percentage of children under three are infected with the "silent" virus). If you would like to see it become a law that daycare workers and women of child-bearing age are taught how to prevent it, please take the time to write some form of the following letter: (find your local representative at: http://www.cga.ct.gov/asp/menu/CGAFindLeg.asp and your senator at: http://www.senatedems.ct.gov/find/findlegislator.asp):

Dear Representative or Senator,
I write this letter to show my support of HB 5147 to increase awareness of congenital CMV (Cytomegalovirus).
You may not currently have a pregnant daughter, daughter-in-law, niece, granddaughter, neighbor, or friend, but chances are you will at some point in your lifetime.  No mother should have to find out after giving birth that they had passed a preventable virus to their baby before birth. 
According to the CDC, this heartbreak is experienced every hour .  You have the ability to help mothers of unborn babies to be educated about congenital CMV so that they can avoid this devastation. By passing HB 5147, Connecticut is setting an important precedent for every other state in this country (Utah is the only other state to pass a similar bill).  The only way for change to occur is one step at a time, and I believe this is an extremely important step for CMV awareness. 
Congenital CMV is a preventable virus and women should be properly educated about the simple hygiene precautions they can take while  pregnant.  Medical studies have proven that following three simple hygiene precautions can reduce the chance of catching the virus by 50%.  
3 Simple Hygiene Precautions for Pregnant Women:
1. Do not share food or drinks with a toddler.
2. Don’t kiss a child under 6 years of age on the lips. Instead, kiss them on the top of the head and give them a big hug.
3. Wash your hands often with soap and water for 15—20 seconds especially after changing diapers, wiping noses or drool, and handling toys. 
The important thing to note is that these hygiene precautions are not obvious for mothers and most likely will not be followed without proper education.  Four hundred babies die each year in the U.S. due to complications from congenital CMV and the other 8,000 per year live a lifetime of suffering with developmental disabilities, hearing loss, vision loss, cerebral palsy, and many other devastating effects.  
I ask you to please do everything in your power to support  HB 5147.

Best Regards,

I wrote everyone in the House and Senate an email asking them to pass it. Here is the letter I sent:

Dear [House/Senate member]*
I am Lisa Saunders of Mystic, Conn., and came to testify in favor of HB 5147, in particular cytomegalovirus (CMV) education, on Feb. 28 (my daughter suffered and died because I didn’t know how to protect her from it when I ran a licensed daycare center). A similar bill was passed in Utah last summer.  Connecticut women still don't know the precautions to take in a daycare center as Connecticut doesn't require those working--or seeking a license--in daycare to be educated on that matter.

CMV is the #1 birth defects virus and causes more disabilities than Down syndrome, yet most women aren’t educated in how to prevent it. Less than half of OB/GYNs surveyed **said they counseled their patients on how to prevent CMV infection, despite these U.S. statistics from the CDC:

•Congenital CMV causes one child to become disabled every hour.

•About 1 in 150 children is born with congenital CMV infection each year (approximately 30,000).

According to an article co-authored by the CDC’s Dr. Cannon, “The direct annual economic costs of caring for these children are estimated at $1-2 billion…by missing prevention opportunities, we in the medical and public health communities are washing our hands of the congenital CMV disease epidemic.”

I am the Congenital CMV Foundation parent representative and author of Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus). If you need any further information, or to contact CMV doctors and health department professionals, I would be happy to help (see below my signature for some helpful contacts).***


You will see from HB 5147’s testimony letters that medical doctors, including a Yale professor and other medical professionals and parents, support the passing of this bill.
OB/GYNs didn’t tell me how to prevent CMV until after Elizabeth was born. Then I learned those working in daycare, or have a child in daycare, are at a higher risk for catching it as preschoolers are the majority of carriers. Mothers must wash their hands after handling toys and should not kiss their toddlers around the mouth.  While I was pregnant, I had a toddler plus ran a licensed daycare center. In milder cases, children may lose hearing or struggle with learning. But Elizabeth's case was not a mild one. She was quadriplegic from cerebral palsy, was cordically blind and losing her hearing, and suffered from frequent pneumonia, major surgeries and ever-worsening epilepsy. She died during a seizure at 16.
Please do your part to shout CMV prevention from the rooftops by passing this bill. This needs to become as well-known as the "don't change the kitty litter" rule when pregnant. I have been trying for years to raise awareness through speaking engagements, USA 9 News and my books, including my most recent travel memoir, Mystic Seafarer’s Trail, where I joke the reason I’m trying to get thin and famous like Amelia Earhart (she was secretly married in Noank) is so people will listen to my CMV prevention message.
Once Utah passed their cytomegalovirus education bill, I finally found hope that the rest of the country would find it easier to follow suit.
Thank you in advance for you attention on this matter.
Lisa Saunders
PO Box 389
Mystic, CT 06355
* How a Bill Becomes a Law (in CT)
Senate Members: http://www.cga.ct.gov/asp/menu/slist.asp

Elissa.Wright@cga.ct.gov, Susan.Johnson@cga.ct.gov, gerratana@senatedems.ct.gov, Philip.Miller@cga.ct.gov, prasad.srinivasan@cga.ct.gov, slossberg@senatedems.ct.gov, Emmett.Riley@cga.ct.gov, Alexander@cga.ct.gov, David.Arconti@cga.ct.gov, Whit.Betts@housegop.ct.gov, Michelle.Cook@cga.ct.gov, Theresa.Conroy@cga.ct.gov, Christopher.Davis@housegop.ct.gov, Mike.Demicco@cga.ct.gov, Gary.Holder-Winfield@cga.ct.gov, Rob.Kane@cga.ct.gov, Themis.Klarides@housegop.ct.gov, James.Maroney@cga.ct.gov, Musto@senatedems.ct.gov, Jason.Perillo@housegop.ct.gov, Kevin.Ryan@cga.ct.gov, Peggy.Sayers@cga.ct.gov, david.scribner@cga.ct.gov, Peter.Tercyak@cga.ct.gov, Patricia.Widlitz@cga.ct.gov, Melissa.Ziobron@housegop.ct.gov, David.Zoni@cga.ct.gov, Philip.Miller@cga.ct.gov, Jason.Welch@cga.ct.gov, Debralee.hovey@cga.ct.gov, Catherine.Abercrombie@cga.ct.gov, tim.ackert@housegop.ct.gov, al.adinolfi@housegop.ct.gov, Mike.Alberts@housegop.ct.gov, james.albis@cga.ct.gov, Emil.Altobello@cga.ct.gov, Bill.Aman@cga.ct.gov, Angel.Arce@cga.ct.gov, Joe.Aresimowicz@cga.ct.gov, Penny.Bacchiochi@housegop.ct.gov, Terry.Backer@cga.ct.gov, David.Baram@cga.ct.gov, Brian.Becker@cga.ct.gov, sam.belsito@housegop.ct.gov, Jeffrey.Berger@cga.ct.gov, Betty.Boukus@cga.ct.gov, Tim.Bowles@cga.ct.gov, Cecilia.Buck-Taylor@housegop.ct.gov, Larry.Butler@cga.ct.gov, Lawrence.Cafero@housegop.ct.gov, Fred.Camillo@housegop.ct.gov, Juan.Candelaria@cga.ct.gov, christie.carpino@housegop.ct.gov, dan.carter@housegop.ct.gov, Jay.Case@housegop.ct.gov, Charles.D.Clemons@cga.ct.gov, Theresa.Conroy@cga.ct.gov, Victor.Cuevas@cga.ct.gov, Michael.DAgostino@cga.ct.gov, Anthony.DAmelio@housegop.ct.gov, Stephen.Dargan@cga.ct.gov, Paul.Davis@cga.ct.gov, christopher.davis@housegop.ct.gov, Patricia.Dillon@cga.ct.gov, Joe.Diminico@cga.ct.gov, Patricia.Dillon@cga.ct.gov, Mike.Demicco@cga.ct.gov, Lou.Esposito@cga.ct.gov, Kim.Fawcett@cga.ct.gov, Andrew.Fleischmann@cga.ct.gov, Mae.Flexer@cga.ct.gov, Livvy.Floren@housegop.ct.gov, Dan.Fox@cga.ct.gov, Gerald.Fox@cga.ct.gov, John.Frey@housegop.ct.gov, Mary.Fritz@cga.ct.gov, henry.genga@cga.ct.gov, Linda.Gentile@cga.ct.gov, Janice.Giegler@housegop.ct.gov, Marilyn.Giuliano@housegop.ct.gov, Bob.Godfrey@cga.ct.gov, Minnie.Gonzalez@cga.ct.gov, Auden.Grogins@cga.ct.gov, Tony.Guerrera@cga.ct.gov, Gregory.Haddad@cga.ct.gov, John.Hampton@cga.ct.gov, Jack.Hennessy@cga.ct.gov, Ernest.Hewett@cga.ct.gov, Laura.Hoydick@housegop.ct.gov, Tony.Hwang@housegop.ct.gov, Claire.Janowski@cga.ct.gov, Ed.Jutila@cga.ct.gov, David.Kiner@cga.ct.gov, Themis.Klarides@housegop.ct.gov, Noreen.Kokoruda@housegop.ct.gov, brenda.kupchick@housegop.ct.gov, David.Labriola@housegop.ct.gov, Timothy.Larson@cga.ct.gov, gail.lavielle@housegop.ct.gov, Tim.LeGeyt@housegop.ct.gov, roland.lemar@cga.ct.gov, Matthew.Lesser@cga.ct.gov, Rick.Lopes@cga.ct.gov, Geoff.Luxenberg@cga.ct.gov, Lezlye.Zupkus@housegop.ct.gov, James.Maroney@cga.ct.gov, Douglas.McCrory@cga.ct.gov, Brandon.McGee@cga.ct.gov, Robert.Megna@cga.ct.gov, Steve.Mikutel@cga.ct.gov, Philip.Miller@cga.ct.gov, Lawrence.miller@cga.ct.gov, Patricia.Miller@cga.ct.gov, Craig.Miner@housegop.ct.gov, michael.molgano@housegop.ct.gov, Russell.Morin@cga.ct.gov, Bruce.Morris@cga.ct.gov, Edward.Moukawsher@cga.ct.gov, Mary.Mushinsky@cga.ct.gov, Sandy.Nafis@cga.ct.gov, Frank.Nicastro@cga.ct.gov, Selim.Noujaim@housegop.ct.gov, Tom.ODea@housegop.ct.gov, Arthur.ONeill@housegop.ct.gov, Linda.Orange@cga.ct.gov, jason.perillo@housegop.ct.gov, Chris.Perone@cga.ct.gov, John.Piscopo@housegop.ct.gov, Rosa.Rebimbas@housegop.ct.gov, Lonnie.Reed@cga.ct.gov, Elizabeth.Ritter@cga.ct.gov, Matthew.Ritter@cga.ct.gov, Jason.Rojas@cga.ct.gov, Kim.Rose@cga.ct.gov, Danny.Rovero@cga.ct.gov, David.Rutigliano@housegop.ct.gov, rob.sampson@housegop.ct.gov, Bobby.Sanchez@cga.ct.gov, Hilda.Santiago@cga.ct.gov, Ezequiel.Santiago@cga.ct.gov, Pamela.Sawyer@housegop.ct.gov, David.Scribner@housegop.ct.gov, Brian.Sear@cga.ct.gov, Joseph.Serra@cga.ct.gov, john.shaban@housegop.ct.gov, J.Brendan.Sharkey@cga.ct.gov, bill.simanski@housegop.ct.gov, richard.smith@housegop.ct.gov, Charlie.Stallworth@cga.ct.gov, Jonathan.Steinberg@cga.ct.gov, William.Tong@cga.ct.gov, Diana.Urban@cga.ct.gov, Edwin.Vargas@cga.ct.gov, Joe.Verrengia@cga.ct.gov, Tom.Vicino@cga.ct.gov, Toni.Walker@cga.ct.gov, Stephen.Walko@housegop.ct.gov, Sean.Williams@housegop.ct.gov, Roberta.Willis@cga.ct.gov, Terrie.Wood@housegop.ct.gov, Christopher.Wright@cga.ct.gov, dave.yaccarino@housegop.ct.gov, Toni.Boucher@cga.ct.gov, Clark.Chapin@cga.ct.gov, Duff@senatedems.ct.gov, Len.Fasano@cga.ct.gov, Scott.Frantz@cga.ct.gov, Anthony.Guglielmo@cga.ct.gov, Hartley@senatedems.ct.gov, Holder-Winfield@senatedems.ct.gov, Kevin.Kelly@cga.ct.gov, John.A.Kissel@cga.ct.gov, Art.Linares@cga.ct.gov, Joe.Markley@cga.ct.gov, John.McKinney@cga.ct.gov, Michael.McLachlan@cga.ct.gov, Kevin.Witkos@cga.ct.gov, Bartolomeo@senatedems.ct.gov, Bye@senatedems.ct.gov, Cassano@senatedems.ct.gov, Coleman@senatedems.ct.gov, Doyle@senatedems.ct.gov, Fonfara@senatedems.ct.gov, Kevin.Kelly@cga.ct.gov, LeBeau@senatedems.ct.gov, Leone@senatedems.ct.gov, Looney@senatedems.ct.gov, Joe.Markley@cga.ct.gov, Maynard@senatedems.ct.gov, John.McKinney@cga.ct.gov, Michael.McLachlan@cga.ct.gov, Meyer@senatedems.ct.gov, Osten@senatedems.ct.gov, Stillman@senatedems.ct.gov, williams@senatedems.ct.gov, Kevin.Witkos@cga.ct.gov,

**Here is one reason an OB/GYN from Boston gives as to why women aren't routinely counseled about CMV:
Fit Pregnancy Magazine article quoting an OB/GYN on why CMV prevention isn't discussed(June/July 2008 issue): Protect Your Baby From A Tot-Borne Virus or visit: www.fitpregnancy.com/yourbaby/babycare/40723077.html?subsection=baby_health_development
***To learn more about cytomegalovirus (CMV) and the need for education:
Dr. Brenda K. Balch, MD  is Connecticut's AAP EHDI (Early Hearing Detection & Intervention) Chapter Champion and has a strong interest in CMV as congenital CMV is a major cause of hearing loss. bkbalch@sbcglobal.net

Eugene D. Shapiro, M.D. , Professor of Pediatrics, Epidemiology and Investigative Medicine, Yale University, eugene.shapiro@yale.edu

Lisa Saunders, Congenital CMV Foundation parent representative, PO Box, 389, Mystic, CT 06355, saundersbooks@aol.com
Alyson Ward, National Center for Hearing Assessment and Management (NCHAM), Alyson.Ward@usu.edu
From the CDC: Michael Cannon, Ph.D. mrc7@cdc.gov, is a research epidemiologist at the Centers for Disease Control, Atlanta, Georgia. Dr. Cannon is particularly interested in developing strategies to prevent congenital CMV infection through public awareness and education.

Gail J Demmler-Harrison MD, Professor, Pediatrics, Section Infectious Diseases, Baylor College of Medicine, Attending Physician, Infectious Diseases Service, Texas Children's Hospital, CMV Registry, CMV Research and CMV Clinic. Contact: 832-824-4330, gjdemmle@texaschildrens.org. The CMV Registry supports CMV research, disseminates information and provides a parent support group.
For more information about the Congenital CMV Foundation, which raises awareness about maternal testing for first infection during pregnancy, newborn testing and the need to develop a vaccine, contact Lenore Pereira, Ph.D., Congenital CMV Foundation founder and Professor, Cell and Tissue Biology Department, University of California San Francisco, at lenore.pereira@ucsf.edu, or visit www.congenitalcmv.org.
Ronda Menlove, Utah House of Representatives and Senior Vice Provost, Utah State University, ronda.menlove@usu.edu
Stephanie Browning McVicar, Au.D., CCC-A, DOCTOR OF AUDIOLOGY (she worked tirelessly to pass the Utah bill), Specialty Services Program Manager, State EHDI Director, State of Utah Department of Health, Children with Special Healthcare Needs, Children's Hearing and Speech Services, (801) 584-8218, smcvicar@utah.gov
Sara Menlove Doutre, President and Education Policy Consultant at Doutre Consulting (her daughter was affected by congenital cytomegalovirus), sara@doutreconsulting.com  
Janelle Greenlee, President and Founder of Stop CMV - The CMV Action Network, which is comprised of families, friends and medical professionals personally affected by CMV and committed to public education efforts to prevent future cases of the virus. StopCMV.org, janelle@stopcmv.org

Fox News Announces Utah First State in Nation to Provide CMV Education: http://fox13now.com/2013/07/07/utah-takes-action-against-virus-that-harms-unborn-children/ 
"Legislation was passed in Utah, and now The Utah Department of Health is required to educate women about the dangers of CMV in pregnancy as well as ways to prevent it." The reporter on this was Mark Green, mark.green@fox13now.com (It was because of this above news that I found out about Utah's bill. I then gave the link to the bill and the book about my daughter to my local representative who lives in Noank. She then wrote a letter to the Co-Chair of the Connecticut Public Health Committee asking her to present a similar bill in Connecticut.)  

No comments: