Letter of Testimony for CT's Congenital Cytomegalovirus Bill

Preparing to testify in favor of the congenital cytomegalovirus bill: http://www.cga.ct.gov/asp/Content/YourVoiceMatters.pdf
Oral testimony must be kept to three minutes maximum.

As of Feb 6, 2015 there are two bills that support ESTABLISHING A PUBLIC EDUCATION PROGRAM FOR CYTOMEGALOVIRUS:


1) H.B. 5525: AN ACT CONCERNING CYTOMEGALOVIRUS

2) HB-5271: AN ACT CONCERNING NEWBORN SCREENING TESTS FOR CYTOMEGALOVIRUS AND GLOBOID CELL LEUKODYSTROPHY AND ESTABLISHING A PUBLIC EDUCATION PROGRAM FOR CYTOMEGALOVIRUS.

Depending upon which one I'm writing in support of, I will be stating something like the following:


Madame Co-chair, Mr. Co-Chairman and Members of the Committee:

I am Lisa Saunders of Mystic and am in support of H.B. 5525: AN ACT CONCERNING CYTOMEGALOVIRUS.

I am the parent representative of the Congenital Cytomegalovirus Foundation and was the mother of Elizabeth Saunders, born severely disabled by congenital cytomegalovirus (or CMV) in 1989.

No one told me about congenital CMV until after Elizabeth's birth--much too late to protect her from this number one viral cause of birth defects, which causes more disabilities than Down syndrome.  

When Elizabeth was first born, I was devastated when I saw her small, deformed head.  Diagnosed with congenital CMV, it was then that I received literature stating that women who work in daycare, or have a young child in daycare, are at a higher risk for catching CMV as toddlers are the majority of carriers. Pregnant women must use caution around a toddler's bodily fluids such as saliva. While I was pregnant with Elizabeth, I ran a licensed daycare center. Nowhere in the licensing literature was there a CMV prevention message--and there still isn't in Connecticut.

In milder cases of congenital CMV, children may lose hearing or struggle with learning. But Elizabeth's case was not a mild one. During her 16 years of life, my sweet little girl was never able to hold up her head, roll over,  sit up, walk or feed herself. She wore diapers, was visually and hearing impaired, and suffered from frequent bouts of pneumonia and ever-worsening seizures.

In the U.S., congenital CMV causes one child to become disabled every hour. It is the leading non-genetic cause of childhood hearing loss. (See www.cdc.gov/cmv) Of the more than 5,000 babies born disabled by congenital CMV in the U.S. each year, 50 are estimated to be born in Connecticut.

Unlike most disabilities, CMV is preventable. With proper education, mothers can reduce the chances of passing it to their unborn children by refraining from kissing toddlers around the mouth or sharing utensils with them. While most expectant mothers know that preventing a less common cause of birth defects, toxoplasmosis, can be achieved by avoiding kitty litter, very few (13% according to the CDC) know how to prevent congenital CMV. 

The education proposed in the bill will not only prevent suffering among Connecticut's children, but will also save the state money. The cost of caring for one child disabled by congenital CMV is estimated at $200,000 annually. Many years ago, my daughter's special education program alone was estimated to cost the state $40,000 per year--never mind the cost of major surgeries such as spinal fusion and frequent ambulance rides to the hospital during prolonged seizures.

Scientists have been working on a vaccine against cytomegalovirus for years. One reason for delay in successful development is "there has been insufficient education about the problem...”* Pharmaceutical companies need to know that a vaccine will be used because people know about the disease.

CMV is preventable, but only if women know about it.

Please help stop the suffering my daughter Elizabeth endured until her death at16 during a seizure.

Sincerely,

Lisa Saunders, Congenital CMV Mom

Parent Representative, Congenital Cytomegalovirus Foundation
www.congenitalcmv.org
P.O. Box 389
Mystic, CT 06355
LisaSaunders42@gmail.com

*

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/

 

Two CT Congenital CMV bills to watch

1)H.B. 5525: AN ACT CONCERNING CYTOMEGALOVIRUS

Introduced by: Rep. Kevin Ryan, 139th Dist. (860-240-8504, Kevin.Ryan@cga.ct.gov), and Rep. Aundré Bumgardner (800-842-1423, Aundre.Bumgardner@housegop.ct.gov), 41st Dist (Aundré is Lisa Saunders' representative. Aundré aide is Maureen Urso, 860-240-8723). Co-sponsor: Rep. Emmett D. Riley, 46th Dist. (Emmett.Riley@cga.ct.gov, (860) 240-8585)

2) HB-5271: AN ACT CONCERNING NEWBORN SCREENING TESTS FOR CYTOMEGALOVIRUS AND GLOBOID CELL LEUKODYSTROPHY AND ESTABLISHING A PUBLIC EDUCATION PROGRAM FOR CYTOMEGALOVIRUS.

Introduced by: Rep. Michelle L. Cook, 65th Dist. (860) 240-8585 | 1-800-842-8267
Michelle.Cook@cga.ct.gov

Co-sponsor: Rep. Emmett D. Riley, 46th Dist.(Emmett.Riley@cga.ct.gov, (860) 240-8585)

To track the bills so you can be prepared to testify in Hartford, CT, or to write in a "Letter of Testimony" to phctestimony@cga.ct.gov, sign up for an account here:
http://www.cga.ct.gov/aspx/cgabilltracking/CGABillTracking.aspx

 

After creating an account for bill tracking, I signed into it, then went to the "LIST" tab up top and created a new list. I called my list CMV. Then I went through adding, one at the time, the two CMV bills submitted to the public health committee. If you are having trouble, call the website IT person at 860-240-0000.

 

 

Link to Public Health Committee: http://www.cga.ct.gov/ph/2015-2017%20PHC%20Membership.pdf

State of Connecticut
GENERAL ASSEMBLY
PUBLIC HEALTH COMMITTEE
LEGISLATIVE OFFICE BUILDING, ROOM 3000
HARTFORD, CT 06106-1591
TELEPHONE (860) 240-0560 FAX (860) 240-5306
2015 - 2017 Committee Members
Legislative Office Building, Room 3002 Legislative Office Building, Room 3004
Hartford, CT 06106 Hartford, CT 06106

Senator Terry Gerratana, Co-Chair, gerratana@senatedems.ct.gov
Representative Matt Ritter, Co-Chair, Matthew.Ritter@cga.ct.gov
Senator Joe Crisco, Vice-Chair, crisco@senatedems.ct.gov
Representative Emmett Riley, Vice Chair, Emmett.Riley@cga.ct.gov
Senator Joe Markley, Ranking Member, Joe.Markley@cga.ct.gov
Rep. Prasad Srinivasan, Ranking Member, Prasad.Srinivasan@housegop.ct.gov
Representative Al Adinolfi, Al.Adinolfi@housegop.ct.gov
 Representative David Alexander, David.Alexander@cga.ct.gov
Representative Andre Baker, Representative Eric Berthel
Andre.Baker@cga.ct.gov, Eric.Berthel@housegop.ct.gov
Representative Whit Betts, Representative Vincent Candelora
Whit.Betts@housegop.ct.gov, Vincent.Candelora@housegop.ct.gov
Representative Christie Carpino, Representative Theresa Conroy
Christie.Carpino@housegop.ct.gov ,Theresa.Conroy@cga.ct.gov
Representative Michelle Cook, Representative Mike Demicco
Michelle.Cook@cga.ct.gov, Mike.Demicco@cga.ct.gov
Representative Henry Genga, Senator Robert Kane
Henry.Genga@cga.ct.gov, Rob.Kane@cga.ct.gov
Senator Ted Kennedy, Jr., Representative Kathleen McCarty
Kennedy@senatedems.ct.gov, Kathleen.McCarty@cga.ct.gov
Senator Marilyn Moore, Representative Jason Perillo
Moore@senatedems.ct.gov, Jason.Perillo@housegop.ct.gov
Representative Kevin Ryan, Representative Peggy Sayers
Kevin.Ryan@cga.ct.gov, Peggy.Sayers@cga.ct.gov
Representative Sean Scanlon, Representative Peter Tercyak
Sean.Scanlon@cga.ct.gov, Peter.Tercyak@cga.ct.gov
Representative Fred Wilms, Representative David Zoni
Fred.Wilms@cga.ct.gov, David.Zoni@cga.ct.gov

Subject for media: Stopping #1 Birth Defects Virus

There is a preventable virus that disables over 5,000 babies every year, yet most women of childbearing age don't know how to prevent it. Congenital cytomegalovirus (CMV) causes more disabilities than Down syndrome. See my Fox CT interview: https://www.youtube.com/watch?v=4lT2GpwzaMU&feature=youtu.be

I didn’t know how to prevent congenital CMV, which causes more disabilities than Down syndrome, until it was too late for my daughter Elizabeth born severely mentally and physically disabled by the disease. 
According to the CDC (www.cdc.gov/cmv): 
• Congenital CMV causes one child to become disabled every hour.
• About 1 in 150 children is born with congenital CMV infection (approximately 30,000). CDC’s flyer of congenital CMV prevention tips: http://congenitalcmv.org/CDCbrochure.pdf

Elizabeth died at age 16 in 2006 during a seizure. I am the author of Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus). See: http://www.amazon.com/dp/1588329968/?tag=mh0b-20&hvadid=3521606113&ref=pd_sl_2m2y0nosos_p

I am also the parent representative for Congenital Cytomegalovirus Foundation (http://congenitalcmv.org/) and work with Connecticut's Brenda K. Balch, MD, American Academy of Pediatrics Early Hearing Detection & Intervention Chapter Champion to raise CMV awareness. Balch has a strong interest in preventing congenital CMV as it is the most common cause of nonhereditary sensorineural hearing loss in childhood. Balch said, “We must commit to educating the public about cytomegalovirus so that we can potentially prevent the devastating consequences of this disease on our children."

I have prepared a one-page fact sheet with answers to most frequently asked questions. See: https://drive.google.com/file/d/0B9Klfxar2CmjU1ZLRUc2VlFNbEE/view?usp=sharing

To learn more, please see my following press release:

IMMEDIATE RELEASE

Lisa Saunders, Parent Representative

Congenital Cytomegalovirus Foundation
PO Box 389

Mystic, CT 06355

LisaSaunders42@gmail.com

Over 5,000 Babies Disabled Every Year by Preventable Virus 

Congenital Cytomegalovirus Causes More Disabilities Than Down Syndrome

Mystic, Conn.— Lisa Saunders didn’t know how to prevent contracting cytomegalovirus (CMV), which causes more disabilities than Down syndrome, until it was too late for her daughter born severely mentally and physically disabled by the disease. Women of child-bearing age are still not routinely advised on CMV’s prevalence and how to avoid it. Since 2013, only the State of Utah requires its health department to educate the public about congenital CMV.

 According to the Centers for Disease Control and Prevention (CDC): 

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

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

• 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.

See the CDC’s flyer of congenital CMV prevention tips: http://congenitalcmv.org/CDCbrochure.pdf

Saunders, author of 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 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 a higher risk for catching it as toddlers are the majority of carriers. 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.” Elizabeth died at age 16 in 2006 during a seizure.

Both residing in Mystic, Saunders, the parent representative for Congenital Cytomegalovirus Foundation, and Brenda K. Balch, MD, American Academy of Pediatrics Early Hearing Detection & Intervention Chapter Champion, sought passage of a bill similar to Utah’s in 2014. Balch has a strong interest in preventing congenital CMV as it is the most common cause of nonhereditary sensorineural hearing loss in childhood. Balch said, “We must commit to educating the public about cytomegalovirus so that we can potentially prevent the devastating consequences of this disease on our children."

In 2014, the Conn. Senate failed to vote on the bill before the end of the session despite “Letters of Testimony” from mothers whose babies were disabled by the preventable disease and Yale University’s Eugene D. Shapiro, M.D., Professor of Pediatrics, Epidemiology and Investigative Medicine.

Saunders has prepared a one-page fact sheet with answers to most frequently asked questions. See: https://drive.google.com/file/d/0B9Klfxar2CmjU1ZLRUc2VlFNbEE/view?usp=sharing

Beginning in January 2015, Saunders and Balch are once again asking Connecticut residents to call or write to members of the Public Health Committee plus their own legislators to ask them to support H.B. 5525, which seeks to prevent the 50 babies born disabled by congenital CMV in Connecticut each year.

For more information about congenital cytomegalovirus, visit the Centers for Disease Control and Prevention (CDC) at www.cdc.gov/cmv or write to Lisa Saunders at LisaSaunders42@gmail.com or Dr. Brenda Balch at bkbalch@sbcglobal.net.

 

###

The Congenital Cytomegalovirus (CMV) Foundation raises awareness about maternal testing for first infection during pregnancy, newborn testing and the need to develop a vaccine.
Founder: Lenore Pereira, Ph.D., Professor, Cell and Tissue Biology Department, University of California San Francisco. Contact her at: lenore.pereira@ucsf.edu, or visit www.congenitalcmv.org. Parent organization for the Congenital CMV Foundation:
Public Health Foundation Enterprises, Inc.
a 501(c)3 corporation
12801 Crossroads Parkway S. #200

City of Industry, CA 91746phone 562.222.7882 | fax 562.222.7796

http://www.phfe.org

 

Mom & Dr. Ask State to Stop #1 Birth Defects Virus---AGAIN

IMMEDIATE RELEASE:

Lisa Saunders

PO Box 389, Mystic, CT 06355
LisaSaunders42@gmail.com

 

Mom and Pediatrician Ask Conn. to Be 2nd State to Stop #1 Birth Defects Virus

 

Preventable virus disables 50 babies in Connecticut every year--proposed H.B. 5525 includes Cytomegalovirus (CMV) public education program

 

Mystic, Conn.— Lisa Saunders didn’t know how to prevent contracting cytomegalovirus (CMV), which causes more disabilities than Down syndrome, until it was too late for her daughter born severely mentally and physically disabled by the disease. Connecticut women of child-bearing age are still not routinely advised on CMV’s prevalence and how to avoid it. Neither is the rest of the country except the State of Utah.

 

Both residing in Mystic, Saunders, the parent representative for Congenital Cytomegalovirus Foundation, and Brenda K. Balch, MD, American Academy of Pediatrics Early Hearing Detection & Intervention Chapter Champion, sought passage of a bill similar to Utah’s in 2014. Balch has a strong interest in preventing congenital CMV as it is the most common cause of nonhereditary sensorineural hearing loss in childhood. Balch said, “We must commit to educating the public about cytomegalovirus so that we can potentially prevent the devastating consequences of this disease on our children."

 

 According to the Centers for Disease Control and Prevention (CDC):  

• Congenital CMV causes one child to become disabled every hour.
• About 1 in 150 children is born with congenital CMV infection (approximately 30,000).
• 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. 

Saunders, author of 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 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 a higher risk for catching it as toddlers are the majority of carriers. 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.” Elizabeth died at age 16 in 2006 during a seizure.

 

In 2014, the Senate failed to vote on the bill before the end of the session despite “Letters of Testimony” from mothers whose babies were disabled by the preventable disease and Yale University’s Eugene D. Shapiro, M.D., Professor of Pediatrics, Epidemiology and Investigative Medicine.

Saunders and Balch were interviewed about the disease and the 2014 CMV bill on Fox CT.

 

Saunders and Balch are once again asking Connecticut residents to call or write to members of the Public Health Committee plus their own legislators to ask them to support H.B. 5525.

 

Click for the CDC’s flyer of congenital CMV prevention tips or see: http://congenitalcmv.org/CDCbrochure.pdf

 

Saunders has prepared a one-page fact sheet with answers to most frequently asked questions. See: https://drive.google.com/file/d/0B9Klfxar2CmjU1ZLRUc2VlFNbEE/view?usp=sharing

 

For more information about congenital cytomegalovirus, visit the Centers for Disease Control and Prevention (CDC) at www.cdc.gov/cmv or write to Lisa Saunders at LisaSaunders42@gmail.com or Dr. Brenda Balch at bkbalch@sbcglobal.net.

 

 

###

To the Media: Stop #1 Birth Defects Virus

I am hoping you would reach your audience with information that will spare children from the leading viral cause of birth defects, congenital cytomegalovirus, that causes more disabilities than Down syndrome. To learn more about this #1 birth defects virus and how it can be prevented by the careful handling of saliva (particularly from toddlers), visit the CDC's Web page: http://www.cdc.gov/cmv/index.html

 

I am happy to speak to your audience about how they can prevent this disease. I am the parent representative of the Congenital Cytomegalovirus (CMV) Foundation (http://www.congenitalcmv.org/) and author of the memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV," published by Unlimited Publishing (http://www.amazon.com/Anything-But-Dog-Congenital-Cytomegalovirus/dp/1588329968).

Until OB/GYNs make it a standard practice of care to warn women how to prevent cytomegalovirus, please reach your audience to help prevent over 5,000 babies a year in the U.S. from suffering this disease.

Utah passed a bill in 2013 requiring its Health Department to educate the public--Passed bill: Utah’s H.B. 81. I tried to get similar bill passed in Connecticut in 2014. It passed the Public Health Committee and House of Representatives, but the Senate failed to voted on it by the end of the legislative session. This is my letter to Connecticut for 2015: From Lisa to CT Politicians.

I work with the CDC and other medical professionals and can give you their contact information.

In 2014, Connecticut media featured my work to prevent others from suffering my daughter's disabilities and death from the preventable virus. Links to my local media coverage include:
Fox CT: https://www.youtube.com/watch?v=4lT2GpwzaMU&feature=youtu.be
The Day (Grace magazine): http://www.theday.com/article/20131218/GRACE01/131219832/-1/grace
Mystic River Press: http://www.mysticriverpress.com/news/latestnews/4102672-129/saunders-seeks-help-with-cmv-silent-virus-prevention-bill.html
Hartford Courant: http://www.courant.com/features/parenting/hc-mommy-minute-0428-20140428-story.html

Thank you.

Lisa Saunders
Box 389
Mystic, CT 06355
LisaSaunders42@gmail.com
http://congenitalcmv.blogspot.com/
www.authorlisasaunders.com

IF ONLY 500 CHARACTERS FOR SUBMISSION:
Please stop #1 birth defects virus. My local  media has covered my attempts to educate the public about preventing congenital cytomegalovirus (CMV), which causes more disabilities than Down syndrome. Learn more from the CDC: http://www.cdc.gov/cmv/index.html.
I am the parent rep. of the Congenital Cytomegalovirus Foundation (http://www.congenitalcmv.org/) and author of the memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV."
My work: http://congenitalcmv.blogspot.com/

The Empty Christmas Chair: Holidays without our daughter

I update my blog every year with this message and photo of the empty chair we place beside our fireplace.

The Empty Christmas Chair

Holidays without our daughter

 

Like many who have lost a loved one,  I tear up this time of year when I hear Bing Crosby sing “I'll Be Home for Christmas" on the car radio. I cry for my daughter Elizabeth would have turned 25 on December 18, 2014.

 

Expecting Elizabeth, due to be born on Christmas Eve of 1989, had been an exciting experience. But the moment she arrived on the 18th, I felt a stab of fear. My immediate thought was, “Her head looks so small—so deformed.”

The neonatologist said, "Your daughter's brain is very small with calcium deposits throughout. If she lives, she will never roll over, sit up, or feed herself." He concluded that Elizabeth's birth defects were caused by congenital cytomegalovirus (CMV). Women who care for young children are at a higher risk for catching it because preschoolers are the majority of carriers. Pregnant women need to be careful not to kiss young children on or around the mouth or share food or towels with them.

Why hadn’t my OB/GYN warned me about this? While I was pregnant with Elizabeth, I not only had a toddler of my own, but I also ran a licensed daycare center in my home. I felt sick at what my lack of knowledge had done to my little girl. In milder cases, children with congenital CMV may lose hearing or struggle with learning disabilities later in life. But Elizabeth's case was not a mild one.

When my husband Jim heard Elizabeth's grim prognosis, he stared at her and said, “She needs me”—just like Charlie Brown with that pathetic Christmas tree.

It took me about a year, but I eventually stopped praying that a nuclear bomb would drop on my house so I could escape my overwhelming anguish over Elizabeth's condition. Life did become good again—but it took a lot of help from family, friends, some Valium, and the Book of Psalms. We were eventually able to move forward as a happy, "normal" family.

Sixteen years later, I awoke feeling so proud of Elizabeth. It was her 16th birthday and just one week before her 17th Christmas. When the song “I’ll be home for Christmas” played on the radio, I cried thinking how hard Elizabeth fought to be home with us, overcoming several battles with pneumonia, major surgeries, and most recently, seizures. Weighing only 50 pounds, she looked funny to strangers as a result of her small head and adult teeth, but she was lovely to us with her long, brown hair, large blue eyes and soul-capturing smile. Although still in diapers and unable to speak or hold up her head, Elizabeth was very happy and loved going for long car rides. She especially enjoyed going to school and being surrounded by people, paying no mind to the stares of “normal” children who thought she belonged on the "Island of Misfit Toys."

Less than two months after she turned 16, I dropped Elizabeth off at school. Strapping her into her wheelchair, I held her face in my hands, kissed her cheek, and said, “Now be a good girl today.” She smiled as she heard her teacher say what she said every time, “Elizabeth is always a good girl!” With that, I left.

At the end of the day, I got the call I had always feared. “Mrs. Saunders, Elizabeth had a seizure and she’s not breathing." The medical team did all they could, but she was gone.

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

As I prepare to celebrate my ninth Christmas without her, it was with some heartache that I brought down the holiday decorations from the attic. Elizabeth used to love to sit on the couch with her big, once homeless old dog Riley, and watch us decorate. (Their story is told in my memoir, Anything But a Dog! The perfect pet for a girl with congenital CMV.)

Now, I perform a new Christmas tradition. I carefully unfold the black and red checked shirt Elizabeth wore on her last day and hang it over an empty chair beside our fireplace. Although she can't be home for Christmas, I feel that she is my “Tiny Tim” who would say if she could, “God bless us, everyone!”

Although I miss Elizabeth, I’m glad she is free from suffering, glad she is safe in her new, Heavenly home. When my time comes, I will see  her again. My father wrote a fairytale that I found very helpful after Elizabeth died.  I have made it available as a free e-book, Surviving Loss: The Woodcutter's Tale. It includes comments on grieving from Julie Russell, a licensed clinical social worker, plus heart-felt illustrations by Elizabeth's aunt, Marianne Greiner. Download your free e-book in several different formats at: https://www.smashwords.com/books/view/283862

 

The Only Thing I Can Do for Elizabeth Now

Since Elizabeth no longer needs my care, the only thing I can do for her now is to care for those not yet born—to prevent them from suffering as Elizabeth did. I do that by speaking and writing about congenital CMV prevention and am trying to get Connecticut politicians to pass a bill requiring congenital CMV education--especially in daycare settings. The Public Health Committee and House of Representatives pass this bill during the 2014 legislative session, but the Senate failed to vote on it. I'm currently meeting with politicians to try again for 2015. Learn more: Mom Asks CT AGAIN to Stop #1 Birth Defects Virus

After presenting the story of Elizabeth's life at the international Congenital CMV conference held at the Centers for Disease Control (CDC) in Atlanta, GA, in 2008, scientists from all over the world approached to thank me for inspiring them to continue their work. Mothers, on the other hand, pushed their children towards 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 do all you could to shout it from the rooftops?"

Until OB/GYNs make CMV prevention a standard practice of care, I'm trying to "shout it from the rooftops" through my light-hearted memoir about my girls and their series of dysfunctional pets, Anything But a Dog! The perfect pet for a girl with congenital CMV, which culminates with the unusual account of how a big, old homeless dog found his way to Elizabeth's couch and of their quiet bond. I also try to interest the media in Elizabeth's story and how her death could have been prevented

 

How to Get Congenital CMV Bill Started in Your State

Get Utah's Congenital Cytomegalovirus (cCMV) bill passed in your state/territory.

Now is the time to start. This blog post includes what to say and what papers to give/email your representatives.

 

Contact your House and Senate representatives and ask them to present a bill similar to Utah's to their 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. (After you contact your own House and Senate representative, you will want to start the work of gathering the email address of every representative in your state.)

I got a lot of initial advice on who to reach and how from my Town Clerk (the person who issues marriage and dog licenses). Gather a team of people in your state and cCMV experts willing to be contacted. Get ideas of who to collaborate with from here: Congenital Cytomegalovirus (CMV) Contacts for Connecticut, Utah and U.S.

 

When possible, it's always best to see your 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 your friends and family).

 

I just met with my newly elected representative (who takes office in Jan. 2015) and handed him a little paper folder (with pockets for his convenience) with the most important information, including what it costs our state 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. He will now write up the bill and present it Connecticut's Public Health Committee. If the Public Health Committee passes it after hearing/reading testimonies, then the House of Representatives will vote on it, and if they pass it, then the Senate will vote on it. If the Senate passes it before the end of the session (my Senate didn't vote it so I have to start this ALL OVER AGAIN with the Public Health Committee in 2015), then the Governor has to sign it into law for it to become a law.

This is what your state really wants to know (but may be afraid to ask you):

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 per year, the following calculates cost per child (which varies with severity of disability). In 2012, 3,952,841 were born in U.S. with 1/750, or .0013, disabled by cCMV = 5,139.  Annual cost per disabled child = $1,000,000,000/5139 or $194,590/year/child.

CALCULATE COST PER STATE( or territory):

Annual cost of cCMV by state: x births (X) .0013 cCMV disabled = x children born disabled by cCMV (X) $194,590/year/child= $x annually to care for  children disabled by congenital cytomegalovirus. 

(Example--ANNUAL COST FOR CONNECTICUT: Annual cost of caring for children disabled by congenital CMV in CT: 36,359 births X .0013 cCMV disabled = 47 children X $194,590/year/child= $9,145,730, or over $9 million annually to care for cCMV children.)  The other thing your representative wants to know is will you gather your friends and family to testify (through writing or by appearing at your state capitol) at the Public Health Committee hearing meeting?

Your representatives want as little paper as possible, so I boiled it down to the questions I was asked most last year when I tried to get this bill passed in Connecticut. Here is a pdf  of my PowerPoint on what I did and how you can do it--includes advice on how you can get started, sample letters to politicians, what worked and what didn't work plus how I got the media to help me move the state forward. 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 series of dysfunctional pets--until a homeless old dog came to her rescue-- is told in my memoir, Anything But a Dog! The perfect pet for a girl with congenital CMV).

The following are the type of documents you want to give your politicians and/or media (revise some of them to fit you/your state):

News Release:Message to CT Politicians (can be tweaked to your circumstances/state to send out to the media in your area)

One Page cCMV Fact Sheet plus Bibliography by Lisa Saunders (this includes live links so you can find how many children are born in your state to plug into my formula--reviewed by doctors-- to come up with an approximate figure on how much cCMV disabled children are costing your area).

Chart of cCMV compared to other causes of disabilities

 

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

From Lisa to CT Politicians

 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).

Passed bill: Utah’s H.B. 81

For additional help, see this advice from Utah--the state that actually got a cCMV bill passed.

God bless us everyone in 2015!

Sincerely,

Lisa Saunders
PO Box 389
Mystic, CT 06355
LisaSaunders42@gmail.com
www.authorlisasaunders.com