New York Stop CMV Project : December 2022

Can you help get a country-wide law requiring congenital cytomegalovirus (CMV) prevention education? According to the CDC, "CMV is the most common infectious cause of birth defects in the United States. About 1 out of 200 babies is born with congenital CMV. One out of 5 babies with congenital CMV will have symptoms or long-term health problems, such as hearing loss" (CDC.gov/CMV).

I do have some good news in regard to the State of New York working to prevent congenital CMV. "Elizabeth's Law" (A7560B/S6287C), named in memory of my daughter, was signed by the governor on November 28, 2022 (our story: "How a Baldwinsville mother fought for 30 years to pass a law that might have saved her daughter", Syracuse.com, 2022). The new law requires the provision of CMV information to child care providers and women at their first prenatal visit.

Press releases from the sponsors of the bill:

NYAssembly.gov: “Assemblymember Linda B. Rosenthal Bill to Educate Childcare Providers, Pregnant Patients on Cytomegalovirus Dangers Signed into Law,” November 28, 2022.
NYSenate.gov: “Senator John W. Mannion’s legislation to protect pregnant women from dangerous viral infection that’s a leading cause of birth defects is signed into law,” November 28, 2022.

Though I'm delighted about New York's new CMV education law, I'm still very concerned that most women of child bearing age in the U.S. do not know about CMV, or the steps to take to reduce their chances of contracting it before getting pregnant. Regarding congenital CMV, the American Academy of Pediatrics (AAP) states: "Despite the magnitude of the problem as well as evidence for efficacy of preventive actions, awareness among women of childbearing potential is low..." (AAP, 2022).

Congenital CMV causes miscarriage, stillbirths, low birth weight, infant mortality, and disabilities such as deafness, blindness, mental challenges, and/or cerebral palsy. Three months prior to my pregnancy with Elizabeth, who was born with congenital CMV in 1989, I had a miscarriage. It is certainly possible that I was infected with CMV then, but I wasn't aware that I should be tested for it and/or perhaps waited to get pregnant again. Women who have a young child in group care or work in childcare are at greater risk for CMV as are racial and ethnic minorities (Geographic Disparities in Cytomegalovirus Infection During Pregnancy, 2017).

Will you help us expand New York's CMV education law to the rest of the United States? According to the National CMV Foundation, the following states already require the state to educate the public and professionals about congenital CMV: Colorado, Hawaii , Idaho, Illinois, Iowa, Kentucky, Minnesota, Nebraska, New York, Oregon, Texas and Utah.

Since nearly half of pregnancies are unplanned, I am hoping that cytomegalovirus (CMV) prevention education, such as not sharing cups with toddlers, will be made available from health professional to their patients and added to places such as the CDC webpage "Unintended Pregnancy" under the topic, "Preconception Health Promotion".

Since our country's goal is to follow the guidelines of organizations such as the American Academy of Pediatrics (AAP); American College of Obstetricians and Gynecologists (ACOG); and the Occupational Safety and Health Administration (OSHA), I thought I would compile a list of organizations that promote CMV prevention education:

American College of Obstetricians and Gynecologists (ACOG) - Under "What infections should I be concerned about and how can I reduce my chances of getting them during pregnancy", ACOG states, “CMV can be spread by contact with an infected child’s urine or other body fluids. Pregnant women who work with young children, such as day care workers or health care workers, should take steps to prevent infection...(https://www.acog.org/womens-health/faqs/reducing-risks-of-birth-defects ).
American Academy of Pediatrics (AAP) states: "Despite the magnitude of the problem as well as evidence for efficacy of preventive actions, awareness among women of childbearing potential is low..." (AAP, 2022). In its book, Caring for Our Children, AAP et al. feature: “The importance of hand hygiene measures (especially handwashing and avoiding contact with urine, saliva, and nasal secretions) to lower the risk of CMV; The availability of counseling and testing for serum antibody to CMV to determine the caregiver/teacher’s immune status. (AAP et al., nrckids.org/CFOC/Database/7.7.1.1, 2017). In addition, its book, Model Child Care Health Policies, includes a document to be signed by staff (paid or volunteer) to show “Acceptance of Occupational Risk by Staff Members,” which includes “exposure to infectious diseases (including infections that can damage a fetus during pregnancy)” (AAP, Pennsylvania Chapter, Aronson, SS, ed., 2014, p. 116).
U.S. Congress: "Recommends that more effort be taken to counsel women of childbearing age of the effect this virus can have on their children"(https://www.congress.gov/bill/112th-congress/senate-resolution/215).
Centers for Disease Control and Prevention (CDC) - "People who have frequent contact with young children may be at greater risk of CMV infection because young children are a common source of CMV. " (https://www.cdc.gov/cmv/congenital-infection.html)
Occupational Safety and Health Administration (OSHA) recognizes CMV as a “hazard” for childcare workers (https://www.osha.gov/cytomegalovirus/hazards).
Moderna: "Moms-to-be should talk to their doctors about CMV and take precautions."
March of Dimes - "CMV often spreads during diaper changes, bathing and other close contact with babies and young children. Children can get infected with CMV at child care or school and pass it on to their families, caregivers and other children... CMV spreads easily in child care centers or preschools where children share toys that may carry CMV." (https://www.marchofdimes.org/complications/cytomegalovirus-and-pregnancy.aspx)
National CMV Foundation - "Cytomegalovirus, or CMV, is a public health issue... we support a policy agenda aimed at ensuring access to education for women of childbearing age, accelerating research funding, screening newborns for congenital CMV, and advocating for a vaccine. Congenital CMV infection is largely undetected because the majority of affected infants are asymptomatic at birth." https://www.nationalcmv.org/about-us/advocacy
National Association for the Education of Young Children and its document, “NAEYC Early Childhood Program Standards and Accreditation Criteria & Guidance for Assessment,” acknowledges the need to "reduce occupational hazards such as infectious diseases (e.g., exposure of pregnant staff to CMV…)”p.90.
ChildCare Aware of America: "if you are a childcare worker, a nursery volunteer, or have a toddler in child care, you need to know about cytomegalovirus (CMV)." (The Danger of Spreading CMV: How We Can Protect Our Children (June 2017).
Congenital CMV Disease Research Clinic & Registry - "Our mission is to provide continuous research on the biology, epidemiology, clinical manifestations, methods to diagnose treatment and prevention of congenital CMV disease as well as to raise public awareness of the life-long impact it may have. We also strive to improve the quality of life of children through prevention of disease by providing community resources and a parent support worldwide network." Dr. Gail J. Demmler Harrison
Group B Strep International: "Are you pregnant or plan to be and have a toddler in group care or work/volunteer in early childhood education or daycare? If you don’t know about your increased exposure to cytomegalovirus (CMV), you should."
MotherToBaby.org: "Close contact with children less than three years old, such as in daycare settings, is a common way to become infected with CMV."

To analyze the conclusions of several CMV prevention education studies, I recommend reading, “The Role of Prenatal Counseling in Preventing Congenital CMV,” which states, "There is a substantial amount of evidence that pregnant women can reduce their risk of transmission through simple behavioral changes... " - Vanessa Colleran, The Massachusetts Congenital CMV Coalition, 2020.

Thank you for your time.

Sincerely,

Lisa Saunders

New York Stop CMV

Baldwinsville, NY

LisaSaunders42@gmail.com

AuthorLisaSaunders.com

About Lisa's CMV work

Connecticut ceremonial signing of H.B. No. 5525: An Act Concerning Cytomegalovirus [CMV], (2015). The law requires testing newborns for CMV if they fail hearing screen. Residents now ask legislators to require CMV prevention education materials for child care providers and pregnant women at their first prenatal visit (click for photo caption).

“Perhaps no single cause of birth defects and developmental disabilities in the United States currently provides greater opportunity for improved outcomes in more children than congenital CMV” (National Library of Medicine, “Washing our hands of the congenital cytomegalovirus disease epidemic,” 2005).

Raised H.B. No. 6821: AN ACT CONCERNING EDUCATION REGARDING CYTOMEGALOVIRUS. (See: https://www.cga.ct.gov/asp/cgabillstatus/cgabillstatus.asp?selBillType=Bill&bill_num=HB6821&which_year=2023)

The Public Health Committee heard HB 6821on Monday, March 6, 2023

The testimonies in support of a more comprehensive congenital CMV bill (testing all newborns for CMV plus prevention education) were relevant and inspiring.

Read the uploaded letters of testimony and watch oral testimony

Monday, 3/7/23: Part I and Part II

Raised H.B. No. 6821: AN ACT CONCERNING EDUCATION REGARDING CYTOMEGALOVIRUS.

1) Ann Nyberg (news anchor/reporter/Grandma to 5-month old): 1:11 hours in Part I (she was grateful for the CMV targeted testing law that passed in 2015). Ann's written testimony. She can be seen on News 8's "Nyberg – Author shares experience with cytomegalovirus" (Feb. 1, 2023).

2) Laura Capon (mom): 5:45 hours into Part I . Laura's 5 year-old daughter sings the Scooby Doo Theme Song, which all agreed was a good song from her to Connecticut:

Scooby Dooby Doo, where are you?We got some work to do nowScooby Dooby Doo, where are you?We need some help from you now

(There is actually a song about CMV written/performed by Connecticut's Debra Lynn Alt, "Had I known (about CMV)" - it's a music video set to child with cCMV helping us put down #stop CMV rocks).

3) Lisa Saunders (mom - advocated for the passage of the 2015 CMV law, and helped get a NY CMV education law passed in 2022): She testified last on Part I --7:52 hours in)

and her Q. & A. begins in Part II, 2 minutes in. (Lisa's longer, written testimony)

4) Allison Malerba, M.E.D., CTRS, Teacher of the Deaf & Hard of Hearing. She was the last to speak on Part II (2:43 hours into Part II). Allison's written testimony.

If you want information on particular states, Amanda Devereaux RN, BSN, National CMV Foundation, Program Director, is very helpful (amanda.devereaux@nationalcmv.org). To see legislation in other states, visit their website that includes links to state bills and see New York's 2022 education bill).

An additional argument to show that prevention education works, is that nurses, despite their close contact with bodily fluids, are NOT at increased risk for CMV:

"Childcare workers, but not healthcare workers, have an increased risk of prevalent and incident CMV infection, a risk that is further increased with the presence of at least one child living at home. These findings suggest that enforcing simple, conventional hygienic measures in childcare settings could help reduce transmission of CMV, and that special precautionary measures for preventing CMV infection may not be required for pregnant healthcare workers."(Prevalence, incidence, and risk factors associated with cytomegalovirus infection in healthcare and childcare worker: a systematic review and meta-analysis)

It is hard to say exactly how many children in Connecticut would be spared from congenital CMV if prevention information was disseminated to all childbearing women, but, here is one way to start calculating it: According to the CDC, about 1 out of 200 babies is born with congenital cytomegalovirus or CMV. Of those, 1 out of 5 will have permanent disabilities (CDC.gov/CMV). Using those stats, it can be estimated that 36 babies in Connecticut each year are born with lifelong disabilities from congenital CMV. (35,646/200/5 = 35.646 or 36 babies). HOWEVER, if women are given prevention education, with the efficacy of hygienic precautions shown to be approximately 75% (Adler, 2015), then 75% x 36 babies = 27 babies spared congenital CMV in Connecticut each year. There are papers written on the cost of caring for congenital CMV people (lost wages of parents, special education, medical, etc), but I don't know how to analyze the articles.

Regarding the pioneering CMV work in Minnesota, which now tests ALL newborns for CMV, here is their Department of Health on

CMV: (https://www.health.state.mn.us/people/newbornscreening/program/cmv/index.html)

Congenital Cytomegalovirus Frequently Asked Questions

Families

Providers

For submitters

Connecticut Residents: Here is a good blog post that includes how to follow up with legislators:

"be sure to send [your testimony] separately to any legislators who might be interested, including those who represent your district. (You can find your local legislators here.) Email your testimony with a note that says something along the lines of, “I wanted to let you know I testified about a bill that is of interest to my organization,” and summarize what you said. Be sure to mention that you’ll be happy to talk to them further about why this legislation is important (or problematic)." https://www.cthealth.org/latest-news/blog-posts/5-tips-testifying-public-hearing/

FYI:

Members of the Public Health Committee: https://www.cga.ct.gov/ph/

To find your rep: https://www.cga.ct.gov/asp/menu/cgafindleg.asp

To learn more about all the steps still ahead, read the simple flow chart: How a Bill Becomes a Law in Connecticut).

Submit letter to: https://www.cga.ct.gov/aspx/CGATestimonySub/CGAtestimonysubmission.aspx?comm_code=ph

My longer, written testimony

My oral testimony:

I am Lisa Saunders, formerly of Mystic, now living in New York. Although I support HB 6821 requiring the Department of Public Health to post information about cytomegalovirus on its website, the DPH is already doing that. But this information is not reaching women just prior to or during pregnancy to reduce their chances of contracting the #1 birth defects virus.

According to the CDC, about 1 out of 200 babies is born with congenital cytomegalovirus or CMV. Of those, 1 out of 5 will have permanent disabilities (CDC.gov/CMV). Using those stats, it can be estimated that 36 babies in Connecticut each year are born with lifelong disabilities from congenital CMV. (35,646/200/5 = 35.646 or 36 babies).

The American Academy of Pediatrics states that 8 - 20% of child care providers contract CMV every year, as compared to 1-4% of women in the general population (CDC)--probably because "Up to 70% of children ages 1 to 3 years in group care settings excrete the virus” (AAP et al.). Mothers of children in group care are also at increased risk for CMV (Pass et al, 1986).

My daughter Elizabeth was born with congenital CMV in 1989. During my pregnancy, I was a licensed, “in-home” childcare provider unaware of CMV and my increased risk. When I learned about the virus after Elizabeth’s diagnosis, my head spun. I thought I lived in a country that told its workers about their occupational hazards. Elizabeth’s brain was small and damaged. She had deafness, blindness, mental challenges, cerebral palsy and epilepsy. She died during a seizure in 2006.

In 2015, Connecticut passed HB 5525, requiring CMV testing for newborns who fail their hearing test, but our request to establish a public education program did not pass because it was estimated to cost the state $40,00 annually. Although the DPH posted a letter on its website titled, “About CMV For Obstetric Health Care Providers,” stating pregnant women should “Avoid sharing food, drinks, or utensils with children,” most patients are not receiving this information.

Five CMV prevention education studies showed that the efficacy of hygienic precautions was “[greater than] 75%” (Adler, 2015). Another study concluded that just providing printed materials alone can make a difference (Price, et al, 2014).

When I was still living in Connecticut, a grandmother contacted me about her grandson born with congenital CMV. The baby's mother, a high school student, interned at a childcare center while pregnant. She was unaware of CMV. When I visited the family in the hospital, their nurse asked me, "Knowing what you do about CMV, why haven't you launched an awareness campaign?" I told her I’ve been trying for decades.

Legislating CMV education can improve newborn outcomes and several states have policies in place. In 2022, New York passed a law requiring its DPH to provide CMV materials to child care providers and to doctors to dispense at their patient's first prenatal visit.

Thank you for your attention. I’m available to answer your questions.

Lisa Saunders

Baldwinsville, NY 13027

LisaSaunders42@gmail.com

About Lisa's CMV work

ADDITIONAL INFORMAITON

The following are the links to the 2015 CMV bill that passed (testing for CMV passed, but prevention education did not):

2015: Substitute for H.B. No. 5525: An Act Concerning Cytomegalovirus. (2015).

Connecticut General Assembly: https://www.cga.ct.gov/asp/cgabillstatus/cgabillstatus.asp?selBillType=Bill&which_year=2015&bill_num=5525+

Link to public testimony letters: https://www.cga.ct.gov/asp/menu/CommDocTmyBillAllComm.asp?bill=HB-05525&doc_year=2015

Letters of testimony in favor of providing CMV education in Connecticut include:

Brenda K. Balch, MD, of Mystic, CT, former American Academy of Pediatrics Early Hearing Detection & Intervention Chapter Champion - Sent Testimony to CT’s HB 5525
Shapiro, Eugene, M.D., Professor of Pediatrics, Epidemiology and Investigative Medicine, Yale University, stated, ""Cytomegalovirus (CMV) is the most common cause of hearing loss and neurodevelopmental disabilities in this country, and clinical trials have now shown preventive measures for pregnant women and treatment measures for CMV infected newborns are beneficial." (2014, Feb. 28). Public Hearing Testimony, H.B. No. 5147. Retrieved from Connecticut General Assembly.
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
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 Connecticut General Assembly: http://www.cga.ct.gov/2015/PHdata/Tmy/2015HB-05525-R000220-Gail%20Demmler%20Harrison,%20MD-TMY.PDF

Casey Famigletti of New Canaan, whose daughter was also born with congenital CMV, stated in her public hearing testimony to the Public Health Committee on Feb. 20, 2015: "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?

MEDIA COVERAGE

News 8, "Nyberg – Author shares experience with cytomegalovirus" (Feb. 1, 2023).
News 8: National CMV Awareness Month: Lisa Saunders, musician, Debra Lynn Alt, and pediatrician Brenda K. Balch, M.D., “Mystic mother raises awareness of CMV, a risk for pregnant women and their babies”, (Sarah Cody, 2018)
Simsbury Community Television, Inc., Daughters of the American Revolution, The Abigail Phelps Chapter presents: Congenital Cytomegalovirus with guest Lisa Saunders (May 25, 2017).
Sarah Cody, News Reporter, Facebook CMV Prevention video (June 2018)
Connecticut Magazine: Mystic Mom 'Overwhelmed' by Governor Signing Law on ‘Stealth Virus’ That Can Catch Pregnant Women Unaware (OFGANG, E., 2015)
Cornell Alumni Magazine: In Memory of Elizabeth: Her daughter's death from a preventable disability spurs Lisa Avazian Saunders '82 into action (Bond, A., 2015).
Clinical Advisor magazine: “Connecticut passes cytomegalovirus screening law for newborns” (Aiken, B., 2015)
News 8 Medical/Health Report: "Mystic mom raising awareness about potentially deadly virus" (Jocelyn Maminta, 2015)
News 8: Preventing Congenital CMV During Pregnancy (Alex Ceneviva, 2015)
Fox CT, Hartford Courant: “Mother Working to Protect Pregnant Moms From Dangerous Virus“(Sarah Cody, 2014)
Mystic River Press: “Saunders seeks help with CMV ‘silent virus’ prevention bill” (Souza, M., 2014)

###

ABOUT THE CMV EDUCATION LAW PASSED IN NEW YORK IN 2022

NYAssembly.gov: “Assemblymember Linda B. Rosenthal Bill to Educate Childcare Providers, Pregnant Patients on Cytomegalovirus Dangers Signed into Law,” November 28, 2022.
NYSenate.gov: “Senator John W. Mannion’s legislation to protect pregnant women from dangerous viral infection that’s a leading cause of birth defects is signed into law,” November 28, 2022.

My letter to CT residents

Contact your representatives: https://portal.ct.gov/SOTS/Election-Services/Find-Your-Town-Clerk-Registrar-and-Elected-Officials/US-Senators-and-Representative

Ways to help:

1) Calling and writing House and Senate members.

2) Writing letters of support.

3) Being available to provide facts about CMV.

4) Being willing to be interviewed by the media.

5) Sharing CMV news on social media.

Helpful links:

Excellent CMV advocacy website with wonderfully presented supporting info for your bills:
Massachusetts cCMV Coalition: Home
To see several of my CMV contacts, online presentations, and media coverage (helpful to get when drumming up support), click on my CMV resume. You are welcome to share my presentations, etc. Singer/Songwriter Debra Lynn Alt of Connecticut makes her song, "Had I Known (about CMV)" available to anyone who wants to use it to raise awareness. (See June CMV Awareness Month Had I Known, Lyrics and Music by Debra Lynn Alt (2021); my Congenital CMV Public Service Announcement (PSA): Music Video--"Had I Known (about CMV)"

Below are some letters of testimony or quotes from the 2015 CMV House Bill 5525 :

Brenda K. Balch, MD, of Mystic, American Academy of Pediatrics Early Hearing Detection & Intervention Chapter Champion - Sent Testimony to CT’s HB 5525: "the bill would require the Commissioner of Public Health to establish a public education program concerning CMV. This program would provide information regarding the diagnosis and prevention of CMV to pregnant women and those who may become pregnant, Child Care Programs, Health Care Facilities, School Nurses and Health Educators. Studies confirm that when pregnant women adopt preventive good hygiene behaviors, especially when they are interacting with toddlers, it minimizes the transmission of CMV. Some of these simple preventive behaviors are good hand washing, not sharing food, drink or utensils, and avoiding kissing children on the mouth."

Quote from a Mom after bill passed:

Melvette Ruffin of Stamford brought her 26-year old son, Jarred, in his wheelchair to the ceremonial signing on July 28, 2015. When Jarred was born severely disabled by congenital CMV in 1989, Melvette had never heard of the virus or how she could have prevented it. “Meeting Governor Malloy, and hearing him talk about putting the CMV law into motion, was a real thrill moment for me. Having a child with multiple disabilities is hard. For twenty six years, I felt alone watching my child suffer from this disease and I didn’t know how to prevent this from happening to other families. But being at this signing with mother Lisa Saunders, whose daughter was also born severely disabled by CMV in 1989, and meeting Dr. Brenda Balch and law makers who really care, made me feel change is finally coming. Hearing the governor call it ‘Lizzie’s Bill’ in memory of Lisa’s daughter made this all so personal.”

The following links are the 2014 and 2015 C CMV bills, which shows its cosponsors and Public Hearing Testimony letters:

2014: H.B. No. 5147. (2014). Retrieved from Connecticut General Assembly : http://www.cga.ct.gov/asp/cgabillstatus/cgabillstatus.asp?selBillType=Bill&bill_num=5147&which_year=2014

2015: Substitute for H.B. No. 5525: An Act Concerning Cytomegalovirus. (2015). Retrieved from Connecticut General Assembly: https://www.cga.ct.gov/asp/cgabillstatus/cgabillstatus.asp?selBillType=Bill&which_year=2015&bill_num=5525+

Since our country's goal is to follow the guidelines of organizations such as the CDC, American Academy of Pediatrics (AAP); American College of Obstetricians and Gynecologists (ACOG); and the Occupational Safety and Health Administration (OSHA), I thought I would compile a list of organizations that promote CMV prevention education:

American College of Obstetricians and Gynecologists (ACOG) - Under "What infections should I be concerned about and how can I reduce my chances of getting them during pregnancy", ACOG states, “CMV can be spread by contact with an infected child’s urine or other body fluids. Pregnant women who work with young children, such as day care workers or health care workers, should take steps to prevent infection...(https://www.acog.org/womens-health/faqs/reducing-risks-of-birth-defects ).
American Academy of Pediatrics (AAP) states: "Despite the magnitude of the problem as well as evidence for efficacy of preventive actions, awareness among women of childbearing potential is low..." (AAP, 2022). In its book, Caring for Our Children, AAP et al. feature: “The importance of hand hygiene measures (especially handwashing and avoiding contact with urine, saliva, and nasal secretions) to lower the risk of CMV; The availability of counseling and testing for serum antibody to CMV to determine the caregiver/teacher’s immune status. (AAP et al., nrckids.org/CFOC/Database/7.7.1.1, 2017). In addition, its book, Model Child Care Health Policies, includes a document to be signed by staff (paid or volunteer) to show “Acceptance of Occupational Risk by Staff Members,” which includes “exposure to infectious diseases (including infections that can damage a fetus during pregnancy)” (AAP, Pennsylvania Chapter, Aronson, SS, ed., 2014, p. 116).
U.S. Congress: "Recommends that more effort be taken to counsel women of childbearing age of the effect this virus can have on their children"(https://www.congress.gov/bill/112th-congress/senate-resolution/215).
Centers for Disease Control and Prevention (CDC) - "People who have frequent contact with young children may be at greater risk of CMV infection because young children are a common source of CMV. " (https://www.cdc.gov/cmv/congenital-infection.html)
Occupational Safety and Health Administration (OSHA) recognizes CMV as a “hazard” for childcare workers (https://www.osha.gov/cytomegalovirus/hazards).
Moderna: "Moms-to-be should talk to their doctors about CMV and take precautions."
March of Dimes - "CMV often spreads during diaper changes, bathing and other close contact with babies and young children. Children can get infected with CMV at child care or school and pass it on to their families, caregivers and other children... CMV spreads easily in child care centers or preschools where children share toys that may carry CMV." (https://www.marchofdimes.org/complications/cytomegalovirus-and-pregnancy.aspx)
National CMV Foundation - "Cytomegalovirus, or CMV, is a public health issue... we support a policy agenda aimed at ensuring access to education for women of childbearing age, accelerating research funding, screening newborns for congenital CMV, and advocating for a vaccine. Congenital CMV infection is largely undetected because the majority of affected infants are asymptomatic at birth." https://www.nationalcmv.org/about-us/advocacy
National Association for the Education of Young Children and its document, “NAEYC Early Childhood Program Standards and Accreditation Criteria & Guidance for Assessment,” acknowledges the need to "reduce occupational hazards such as infectious diseases (e.g., exposure of pregnant staff to CMV…)”p.90.
ChildCare Aware of America: "if you are a childcare worker, a nursery volunteer, or have a toddler in child care, you need to know about cytomegalovirus (CMV)." (The Danger of Spreading CMV: How We Can Protect Our Children (June 2017).

These are some of the things that happened in New York that made passing prevention education possible:

1) We broke up our ask for universal testing and education into two bills (we will be working on universal testing in 2023).

2) We overcame opposition by agreeing that no agency or doctor had to "talk" and "train" about CMV, they just had to give child care workers or pregnant patients printed information created by the NY Department of Health. (The CDC already has CDC flyers in English and Spanish, and of course there are the National CMV Foundation downloads.)

3) We set up many zoom meetings with legislators seeking their sponsorship and spoke to several at once at the Women's Caucus. I managed to set up the meeting with the Women's Caucus (this may be the CT Women's Caucus), but for the most part, the man who is the Executive Director, Government & Community Relations of Weill Cornell Medicine, was more successful in setting up meetings (some CMV doctor experts work at Weill Cornell Medicine). I couldn't get legislators, other than in my own district, to get back to me or agree to a Zoom meeting, so this man's work was very helpful. My husband and I did, however, manage to get a few co-sponsors in other districts by calling their offices and speaking to their receptionists, answering machines, etc, about the need for a CMV education law.

4) I don't know, or never heard, if there was a budget attached to the bill.

5) Newspaper articles published after Elizabeth's Law passed in 2022: https://drive.google.com/file/d/1hIavToAg-yD07rQ2kbREu44WMle--MB9/view?usp=sharing

OTHER RELEVENT LINKS INCLUDE

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

AN ACT CONCERNING NEWBORN SCREENING FOR CYTOMEGALOVIRUS AND ESTABLISHING A PUBLIC EDUCATION PROGRAM FOR CYTOMEGALOVIRUS: Substitute House Bill No. 5147. (2014). Retrieved 2017, from State of Connecticut: https://www.cga.ct.gov/2014/FC/2014HB-05147-R000494-FC.htm

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

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

Balch, Brenda K., MD, AAP EHDI Chapter Champion for Connecticut. "An Often Unknown Cause of Hearing Loss in Children: Understanding and Preventing CMV in the Educational Setting" (Late Feb 2019). Supporting Success for Children with Hearing Loss. https://successforkidswithhearingloss.com/wp-content/uploads/2020/02/CMV-An-Often-Unknown-Cause-of-Hearing-Loss.pdf
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MORE ABOUT MY STORY

I am a parent, like many others, who didn't know how to prevent congenital cytomegalovirus (CMV) until it was too late for our daughter. The moment she was born, my immediate thought was, “Her head looks so small—so deformed.” The neonatologist said, "If your daughter lives, she will never roll over, sit up, or feed herself." I was given literature stating women who work in daycare, or have a young child in daycare, are at a higher risk for catching it as preschoolers are the majority of carriers. Mothers should not kiss their toddlers around the mouth or share food with them.

Why hadn’t my OB/GYNs warned me about this before—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 in my home. Nowhere in the licensing literature was a CMV prevention message. In milder cases, children may lose hearing or struggle with learning. But Elizabeth's case was not a mild one. She died after a seizure in 2006.

After presenting Elizabeth’s story at the first international Congenital CMV conference at the CDC in 2008, mothers 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 shout it from the rooftops?"

In 2010, Jim and I moved to Connecticut when Jim was transferred by Pfizer. In 2012, I received an email from a distressed grandmother about her grandson just born with congenital CMV. The baby's mother was a high school student interning in a daycare center. The young mother, just like me decades earlier, was unaware she was putting her pregnancy at increased risk by working with young children. When I visited the family in the hospital, the attending nurse asked me, "Knowing what you do about CMV, why haven’t you launched an awareness campaign?" I explained to her that CMV parents, teachers, scientists and doctors have been trying for years to raise awareness, but the virus remains little known because CMV education is not "part of standard prenatal care” (Washington Post, 2021), doctors don’t want to frighten, worry or “burden” patients (New York Times, 2016), and although OSHA lists CMV as a "Recognized Hazard", there are no federal laws governing CMV education policies for child care workers.

Thank you for your consideration.

Sincerely,

Lisa Saunders

Baldwinsville, New York

Photo Caption of ceremonial signing above:

Ceremonial bill signing for Public Act 15-10: An Act Concerning Cytomegalovirus at the Office of the Governor in Hartford, Conn., on July 28. Left to right: Jane Baird, Government Relations, Connecticut Children’s Medical Center; Dr. Wallis Molchen, Chief Resident, Connecticut Children’s Medical Center; Jane Brancifort, Deputy Commissioner, Department of Public Health; State Representative John Hampton; Dr. Brenda K. Balch, American Academy of Pediatrics Early Hearing Detection & Intervention Chapter Champion; Nancy Wyman, Lt. Governor; Lisa Saunders, parent representative, Congenital Cytomegalovirus Foundation, holding a picture of her deceased daughter, Elizabeth (Lizzie); State Representative Kevin Ryan; Governor Dannel P. Malloy; Senator Cathy Osten; Ken Hiscoe, Pfizer, Government Relations; Jarred and his mother, Melvette Ruffin; DeVaughn Ward, Liaison, Department of Public Health; and Kinson Perry, lobbyist at Rome, Smith and Lutz.

To contact the following on the Public Health Committee with more information on CMV and the bill: