Subject: HB 5147 – Cytomegalovirus (CMV) Public Education Program

I am trying to get a bill passed into law so that women will know how to protect their babies from the suffering my daughter endured for years. You may view and show others photos of my daughter and facts about the preventable #1 viral cause of birth defects at:
PowerPoint on congenital CMV

I sent the following letter to the following on Connecticut's Public Health Committee (if you live in Connecticut, you will want to do this too, but here is a simpler one you may want to use:Sample Letter to Connecticut's Public Health Committee). Or, you may just want to call:
      Public Health Committee
      Room 3000, Legislative Office Building
      Hartford, CT 06106
      Phone: 860-240-0560
Emails of the members at: Committee Contact Information

Also, Find YOUR Representative, Senator and Congressperson at: http://www.cga.ct.gov/rwd/cgafyl/default.asp

Tell them, and the public health committee, that you support:

HB 5147: [pdf]AN ACT CONCERNING NEWBORN SCREENING FOR GLOBOID CELL LEUKODYSTROPHY AND CYTOMEGALOVIRUS AND ESTABLISHING A PUBLIC EDUCATION PROGRAM FOR CYTOMEGALOVIRUS.

Emails: Susan.Johnson@cga.ct.gov, Philip.Miller@cga.ct.gov, Jason.Welch@cga.ct.gov,

prasad.srinivasan@housegop.ct.gov, gerratana@senatedems.ct.gov, slossberg@senatedems.ct.gov

Subject: HB 5147 – Cytomegalovirus (CMV) Public Education Program 

Dear Representatives Susan Johnson, Phillip Miller, Dr. Prasad Srinivasan, and Senators Jason Welch, Terry Gerratana and Gayle Slossberg,





I live in Connecticut and testified in Hartford on Friday, Feb. 28, about my daughter’s 16 years of suffering then death from congenital (present at birth) cytomegalovirus (CMV).

 

 

 

 

According to the Centers for Disease Control and Prevention (CDC), CMV causes more disabilities than Down syndrome and is preventable.

With proper education, mothers can avoid passing it to their unborn children. HB 5147 creates an education program to make sure women and their physicians have the appropriate information about CMV. The State of Utah passed a similar bill last summer. (See: http://www.health.utah.gov/cshcn/CHSS/CMV.html)
 

The education and early identification of CMV proposed in HB 5147 will save Connecticut money by preventing the birth defects and disabilities caused by CMV. According to an article co-authored by Dr. Cannon of the CDC, “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]

 

According to one study, “fewer than half (44%) of OB/GYNs surveyed reported counseling their patients about preventing CMV infection.”[ii] In an article published in Fit Pregnancy, one doctor explained why: "The list of things we're supposed to talk about during women's first visit could easily take two hours and scare them to death," explains OB-GYN Laura Riley, M.D., director of infectious disease at Massachusetts General Hospital in Boston. "That's just the reality."[iii]

The following statistics are from the CDC’s website (http://www.cdc.gov/cmv/index.html):

 

• CMV is the most common viral infection that infants are born with in the United States.
• About 1 in 150 children is born with congenital CMV infection (in other words, 30,000 children are born with congenital CMV infection in the U.S. each year).
• Congenital CMV causes one child to become disabled every hour.

Expectant mothers and women who plan on having children should know about CMV.  According to a study published in 2006, only 22% of women surveyed knew about CMV.[iv]
 

In my case, none of my OB/GYNs told me how to prevent congenital CMV until after my daughter was born. Then I received literature stating women who work in daycare, or have a young child in daycare, are at 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 with Elizabeth I had a toddler plus ran a licensed daycare center. 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.

I see on the HB 5147 webpage that approximately 90 letters of testimony were posted, including the following from the medical community: 

·        02/28/2014 Eugene Shapiro, M.D., Professor of Pediatrics, Epidermiology and Investigative Medicine, Yale University

·        02/28/2014 Stuart Adler, Emeritus Professor of Pediatrics and Chairman, Division of Infectious Disease

·        02/28/2014 Gail Demmler, MD

·        02/28/2014 Staley, Plotkin, MD

As you are aware, all of the letters of testimony can be viewed at: Click for Public Hearing Testimony

Please help the country make congenital CMV prevention as well-known as the “don’t change the kitty litter” rule when pregnant. Every time another new, distraught parent contacts me asking why no one warned them how to protect their baby from congenital CMV, I feel sick wondering why congenital CMV prevention still isn’t part of a doctor’s standard practice of care. Please help educate the public.

I am the author of the memoir, Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus) and the parent representative of the Congenital CMV Foundation. See my short interview on USA 9 News clip.

I would be happy to answer any questions you have or put you in touch with medical professionals who work with congenital cytomegalovirus.

 Thank you in advance for your support.

Sincerely,

 

Lisa Saunders

P.O. Box 389
Mystic, Connecticut 06355
saundersbooks@aol.com 

More information or sources:

CDC: CMV Prevention Flyer: http://congenitalcmv.org/CDCbrochure.pdf

###

---

[i] “Washing our hands of the congenital cytomegalovirus disease epidemic”: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379

 

[ii] "Knowledge and Practices of Obstetricians and Gynecologists Regarding Cytomegalovirus Infection During Pregnancy --- United States, 2007": www.cdc.gov/mmwr/preview/mmwrhtml/mm5703a2.htm

 

[iii] Article quoting OB/GYN why CMV prevention isn't discussed in Fit Pregnancy Magazine, 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

[iv] 2006 PubMed Central article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1779612

  

My Testimony at the hearing in Hartford:

Representative Johnson, Senator Gerratana and distinguished members of the Public Health Committee:

I am Lisa Saunders of Mystic, Connecticut, parent representative of the Congenital CMV Foundation, and author of Anything But a Dog! The perfect pet for a girl with congenital cytomegalovirus.*

I am in support of H.B. No. 5147, “AN ACT CONCERNING NEWBORN SCREENING FOR GLOBOID CELL LEUKODYSTROPHY AND CYTOMEGALOVIRUS AND ESTABLISHING A PUBLIC EDUCATION PROGRAM FOR CYTOMEGALOVIRUS.”

I am a parent who didn't know how to prevent congenital cytomegalovirus (CMV) until it was too late for our daughter Elizabeth. The moment she was born in 1989, my first thought was, “Her head looks so small—so deformed.”

My doctor told us, "If your daughter lives, she will never roll over, sit up, or feed herself." Elizabeth's birth defects were caused by congenital CMV. I was given literature stating women who work in daycare, or have a young child in daycare, are at 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. 

Why hadn’t my OB/GYNs warned me about this—especially since, according to the CDC, congenital CMV causes more disabilities than Down syndrome? While I was pregnant with Elizabeth I had a toddler plus ran a licensed daycare center. 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.

Over the years, my husband and I watched our daughter endure cerebral palsy; frequent pneumonia; major surgeries, including spinal fusion; and worst of all, seizures. Yet despite it all, Elizabeth remained a cheerful, happy little girl. By her 16^th birthday, we felt so proud of her. Although she only weighed 50 pounds, was still in diapers and unable to speak or hold up her head, she was lovely to us with her wavy brown hair, large blue eyes and soul-capturing smile.

Elizabeth especially loved being surrounded by people and going to school. Less than two months later when I dropped her off, I strapped her into her wheelchair, held her face in my hands and kissed her cheek. I said, “Be a good girl today!” She smiled as she heard her teacher say, “Elizabeth is always a good girl!” Elizabeth died several hours later of a seizure.

While holding her body on his lap, my husband looked down into her lifeless eyes and cried, “No one is ever going to look at me again the way she did.”

After presenting Elizabeth’s story at the international Congenital CMV conference at the CDC in 2008, mothers pushed their children toward me in wheelchairs and asked, “Why didn’t my OB/GYN tell me how to prevent this?” One mother even asked, "Learning what you did, why didn't you shout it from the rooftops?"

Last summer, when Utah passed a bill similar to this one, I finally found hope that CMV prevention would become as famous as the “don’t change the kitty litter” rule when pregnant. 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.” Please do your part to shout CMV prevention from the rooftops by passing this bill. I would be happy to answer to any questions.

***

In addition to my testimony, I ask you to consider the published testimonies of support for this bill from Yale University’s Dr. Eugene Shapiro, Professor of Pediatrics, Epidemiology and Investigative Medicine and from Dr. Demmler-Harrison, the Director of National Congenital CMV Disease Registry, as well as the other doctors who have worked with congenital cytomegalovirus and support this bill.

The following statistics are from the CDC’s website at: www.cdc.gov/cmv

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

 

Until OB/GYNs make CMV prevention a standard practice of care, I'm trying to "shout it from the rooftops" through my memoir, Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus)* and the parent representative of the Congenital CMV Foundation,  which raises awareness about maternal testing for first infection during pregnancy, newborn testing and the need to develop a vaccine.

(See my short interview on USA 9 News clip.)

 

Lisa Saunders, Parent Representative, Congenital CMV Foundation

Author of Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus)

 Mystic, CT 06355,  saundersbooks@aol.com, www.authorlisasaunders.com

 

 

*ABOUT THE BOOK, "ANYTHING BUT A DOG! THE PERFECT PET FOR A GIRL WITH CONGENITAL CMV (CYTOMEGALOVIRUS)," WRITTEN BY LISA SAUNDERS AND PUBLISHED BY UNLIMITED PUBLISHING, LLC:

This is the story of a mother’s humorous and moving search for one pet to suit two very different daughters-one a tomboy, the other mentally and physically disabled from the # 1 birth defects virus, congenital CMV (cytomegalovirus). Lisa Saunders says “no” to her daughter Jackie’s pleas for a dog, fearing it will be too rambunctious around Jackie’s disabled little sister Elizabeth. But she does make her a promise she thinks will never come to pass: “If God brings a dog to our door, then you can have it.” In the meantime, the family wrestles with a series of dysfunctional pets: a flesh-eating hamster, an attack cat, killer ants and a very stinky rabbit. Then one day, the unexpected happens: a shivering, dirty puppy shows up at their door. But is this dog really Heaven-sent?

Plus: The latest news on how to prevent the far-reaching but under-reported effects of congenital CMV, the #1 viral cause of birth defects-more common a cause of disabilities than Down syndrome. It also contains highly useful sections with Resources, Contacts and Support for anyone whose life is touched by CMV.

 

ALL MEMBERS OF CONNECTICUT'S PUBLIC HEALTH COMMITTEE:

 LEGISLATIVE OFFICE BUILDING, ROOM 3000

HARTFORD, CT 06106-1591

TELEPHONE (860) 240-0560 FAX (860) 240-5306
 2013-2014 Committee Members
Senator Terry Gerratana, Co-Chair Representative Susan Johnson, Co-Chair


gerratana@senatedems.ct.gov Susan.Johnson@cga.ct.gov

Senator Gayle Slossberg, Vice-Chair Representative; Philip Miller, Vice Chair

slossberg@senatedems.ct.gov Philip.Miller@cga.ct.gov

Senator Jason Welch, Ranking Member Rep.; Prasad Srinivasan, Ranking Member


Jason.Welch@cga.ct.gov Prasad.Srinivasan@housegop.ct.gov

Representative David Alexander, Representative David Arconti

David. Alexander@cga.ct.gov David.Arconti@cga.ct.gov

Representative Whit Betts, Representative Michelle Cook

Whit.Betts@housegop.ct.gov Michelle.Cook@cga.ct.gov

Representative Theresa Conroy, Representative Christopher Davis

Theresa.Conroy@cga.ct.gov, Christopher.Davis@housegop.ct.gov

Representative Mike Demicco, Representative Gary Holder-Winfield


Mike.Demicco@cga.ct.gov, Gary.Holder-Winfield@cga.ct.gov

Representative Debralee Hovey, Senator Robert Kane


Debralee.hovey@cga.ct.gov, Rob.Kane@cga.ct.gov

Representative Themis Klarides, Representative James Maroney


Themis.Klarides@housegop.ct.gov, James.Maroney@cga.ct.gov

Senator Anthony Musto, Representative Jason Perillo

Musto@senatedems.ct.gov, Jason.Perillo@housegop.ct.gov

Representative Emmett Riley, Representative Kevin Ryan


Emmett.Riley@cga.ct.gov Kevin.Ryan@cga.ct.gov

Representative Peggy Sayers, Representative David Scribner


Peggy.Sayers@cga.ct.gov, David.Scribner@housegop.ct.gov

david.scribner@cga.ct.gov

Representative Peter Tercyak, Representative Patricia Widlitz


Peter.Tercyak@cga.ct.gov, Patricia.Widlitz@cga.ct.gov

Representative Melissa Ziobron, Representative David Zoni


Melissa.Ziobron@housegop.ct.gov, David.Zoni@cga.ct.gov

Melissa.ziobron@cga.ct.gov