NY Legislators in 2026: Support two NY CMV bills PLUS national Stop CMV Act

TO NEW YORK STATE REPRESENTATIVES (see below my signature for separate letter to Congress members about the Stop CMV Act):

Consider cosponsoring the following:

1. Bill A3956/S5454:"Requires cytomegalovirus [CMV] screening for every newborn..." 

2. Bill A3074/S7662: "Requires reporting of positive cytomegalovirus results." Newborns "SHALL BE REFERRED TO A PEDIATRIC INFECTIOUS DISEASE SPECIALIST...BEFORE...FOUR WEEKS…EXAMINATION SHALL INCLUDE…EYE EXAM BY AN OPHTHALMOLOGIST; AND HEARING...”

To learn more about the bills, contact Nick Guile, Legislative Director, Assemblymember Linda B. Rosenthal, 518.455.5802, guilen@nyassembly.gov. 

Background information about congenital cytomegalovirus (CMV): 

I was the mother of Elizabeth (see attached image), born with brain damage from congenital CMV. When pregnant with Elizabeth, I was unaware of CMV and how to prevent it – namely by carefully handling the saliva and urine of toddlers who, though otherwise healthy, may be excreting the virus in their bodily fluids.

The American College of Obstetricians and Gynecologists states: “CMV can be passed from a pregnant person to their fetus. About one in 200 infants are born with a congenital CMV infection; of those, about one in five will have birth defects or other long-term health problems” (ACOG, 2024). Congenital CMV can cause autism (AAP News), is the #1 viral cause of birth defects, and is the leading non-heredity cause of hearing loss (CDC).

In 2025, I dropped in on some Health Committee members in Albany to tell them that diagnosing congenital CMV early was important, even if the newborn passed their hearing screen because hearing loss can be progressive. According to the CDC, "Hearing loss can affect a child’s ability to develop speech, language, and social skills. The earlier that children with hearing loss start getting services, the more likely they are to reach their full potential" (CDC). (MN and CT already have universal screening laws.)  The committee members wanted know more about the following:

1) Antiviral: “antiviral therapy with a 6-month course of valganciclovir, if implemented by 30 days of age, improved audiologic and neurodevelopmental outcomes for moderately-to-severely symptomatic infants with confirmed cCMV" (Schleiss, M., The Journal of Pediatrics, 2024).

2) Savings: "savings of up to $37.97 per newborn screened were estimated" when all newborns are tested for congenital CMV according to the study, Cost-effectiveness of Universal and Targeted Newborn Screening for Congenital Cytomegalovirus Infection (Soren Gantt, MD, et al., 2016). Report analyzes costs: “AN ACT RELATIVE TO NEWBORN SCREENING FOR CONGENITAL CYTOMEGALOVIRUS”  by BerryDunn for MA’s CMV bill).

3) Racial Disparities: Congenital CMV “is 3 times more prevalent in black infants” (Moderna, Inc). Video, “Racial Disparities in Babies with cCMV” (Massachusetts CCMV Coalition).

4) Congenital Cytomegalovirus Infection pilot study: Of the 210,100 babies born in NYS between 10/2023 – 9/2024, about 275 or so had "convincing evidence of congenital CMV," said Andrew Handel, MD, Stony Brook Children's Hospital, Co-Primary Investigator of PROACTIVE NYS, a long-term follow-up study of young children with congenital CMV. “We've seen cases of missed clinically apparent cCMV during the NYS universal screening program. There have been some infants with features of cCMV that went unrecognized until the universal screen returned positive.” NY Dept. of Health created this flier: Congenital Cytomegalovirus (CMV) Testing and Your Baby (Publication #20185) (PDF)

These two New York mothers share the problems associated with not testing all newborns for congenital CMV:

Kara Russell of Penfield, NY, said, “My daughter, Lyla, is the perfect example of why all newborns should be tested for CMV and receive early intervention in their first critical months of life.” Lyla, born in 2018, "passed her newborn hearing screen, so she was never tested for CMV. Therefore, she never received the recommended regular hearing checks to catch the possibility of a progressive hearing loss. It wasn't until Lyla's five-year well check that we learned she had profound unilateral hearing loss -- that she was totally deaf in her left ear. We have no idea how long she was unable to hear accurately.” Kara is the New York National CMV Alliance Co-Chair (nationalcmvnys@gmail.com).

Kristin Schuster of Canandaigua, NY, mom to Autumn (born 2015), said, "Unfortunately, my daughter wasn't diagnosed with congenital CMV until 18 months old – well after the opportunity had passed to receive antiviral treatment most effective when given between ages zero to six months.”

In 2022, New  York State passed “Elizabeth’s Law” (A7560), named in memory of my daughter. It “Requires the provision of informational materials [about cCMV] to child care providers and certain physicians and midwives regarding.” The NYS Dept. of Health created the following informational materials: 1) Protect Your Baby from Cytomegalovirus (CMV) (Publication #20172) (PDF) and 2) Dear Provider Letter and Child Care Staff and Cytomegalovirus (CMV) #5061 

(In 2018, New York passed S2816, which requires testing newborns who fail their hearing screen for CMV.)

Organizations Supporting Universal CMV Screening, with their detailed position statements, include:

1. American Academy of Audiology
2. American Academy of Otolaryngology-Head and Neck Surgery: 
3. National CMV Foundation

I am happy to provide you with more information. 

Thank you!

Lisa Saunders

LisaSaunders42@gmail.com

Author of Had I Known about CMV: From Shock to Law; Advisory Board (as Parent Advocate) for PROACTIVE NYS,  a long-term follow-up study of young children with congenital CMV; NY DeafBlind Collaborative Expert Advisory Council; and CMV Policy Coalition (National CMV Foundation). CMV content: flier, "CMV in New York (and OSHA," and Pac-B TV interview,“CytoMegaloVirus (CMV) - What Moms Wished They Knew."

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DEAR CONGRESS MEMBERS

We were the parents of Elizabeth (see attached images), born with brain damage from congenital CMV. When I was pregnant with Elizabeth, I was unaware of CMV and how to prevent it – namely by carefully handling the saliva and urine of toddlers who, though otherwise healthy, may be excreting the virus in their bodily fluids.

I'm asking that Congress members to co-sponsor the Stop CMV Act of 2025 (H.R.5435/S.2842).  “To amend the Public Health Service Act to provide for congenital Cytomegalovirus screening of newborns.”  Introduced by Sen. Richard Blumenthal [D-CT] and Rep. Michael Lawler [R-NY]. According to the National CMV Foundation, The legislation proposes the following:

• Provide funding for hospitals and healthcare providers to test newborns for cCMV
• Support state agencies in setting clear standards for newborn testing
• Create grants to expand cCMV testing, strengthen data collection, and provide education and training
• Boost research at the National Institutes of Health for better screening, prevention, vaccines and treatment

Without universal CMV screening, the diagnosis of congenital CMV “may be overlooked for years, leading to developmental disorders without adequate treatment" (Andriesse et al., 2006).

Kara Russell of Penfield, NY, said, “My daughter, Lyla, is the perfect example of why all newborns should be tested for CMV and receive early intervention in their first critical months of life.” Lyla, born in 2018, "passed her newborn hearing screen, so she was never tested for CMV. Therefore, she never received the recommended regular hearing checks to catch the possibility of a progressive hearing loss. It wasn't until Lyla's five-year well check that we learned she had profound unilateral hearing loss -- that she was totally deaf in her left ear. We have no idea how long she was unable to hear accurately.” Kara is the New York National CMV Alliance Co-Chair (nationalcmvnys@gmail.com).

According to the CDC, "Hearing loss can affect a child's ability to develop communication, language and social skills. The earlier children with hearing loss start getting services, the more likely they are to reach their full potential."

Kristin Schuster of Canandaigua, NY, mom to Autumn (born 2015), said, "Unfortunately, my daughter wasn't diagnosed with congenital CMV until 18 months old – well after the opportunity had passed to receive antiviral treatment most effective when given between ages zero to six months.” Kristin is referring to “antiviral therapy with a 6-month course of valganciclovir, if implemented by 30 days of age, improved audiologic and neurodevelopmental outcomes for moderately-to-severely symptomatic infants with confirmed cCMV" (Schleiss).

MN and CT already have universal congenital CMV screening laws. New York State tested all newborns for congenital CMV during the 2023-2024 pilot study. Speaking of the pilot study results, Andrew Handel, MD, a Pediatric Infectious Disease physician at Stony Brook Children's Hospital, said, “We've seen cases of missed clinically apparent cCMV during the NYS universal screening program. There have been some infants with features of cCMV that went unrecognized until the universal screen returned positive.” The Dept. of Health created the flier, Congenital Cytomegalovirus (CMV) Testing and Your Baby (Publication #20185) (PDF)

Organizations Supporting Universal CMV Screening, with their detailed position statements, include:

1. American Academy of Audiology
2. American Academy of Otolaryngology-Head and Neck Surgery: 
3. National CMV Foundation

I am happy to provide you with more information. 

Sincerely,

Lisa Saunders

Author of Had I Known about CMV: From Shock to Law; Advisory Board (as Parent Advocate) for PROACTIVE NYS,  a long-term follow-up study of young children with congenital CMV; NY DeafBlind Collaborative Expert Advisory Council; and CMV Policy Coalition (National CMV Foundation). CMV content: flier, "CMV in New York (and OSHA," and Pac-B TV interview,“CytoMegaloVirus (CMV) - What Moms Wished They Knew."

Holidays and loss because of congenital cytomegalovirus (CMV): Ways to fight the pain through legislation

 

The Empty Christmas Chair

Holidays without our daughter

by Lisa Saunders

 

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, born December 18, 1989.

Expecting Elizabeth, due to be born on Christmas Eve of that year, 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  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 yet another Christmas without her, it is always with some heartache that I bring out the holiday decorations from storage. 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, Had I known about CMV: From Shock to Law). 

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.  Folks can read it as a blog post or as a booklet, 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. If you lost a child to congenital CMV, I suggest you cry along with me to this heart-gripping song, "Had I Known (about CMV)" © 2018 DebraSong Publishing, Debra Lynn Alt, www.debrasong.com, (Her email,:debrasong@gmail.com).

 

The Only Thing I Can Do for Elizabeth Now

LEGISLATION

Promoting recent and proposed legislation should improve parent, health care provider, and educator knowledge.  And as a result, better prevention and support for children and their families.

Proposed National legislation: 119th Congress (2025-2026). Stop CMV Act 2025.

Introduced by: Sen. Richard Blumenthal [D-CT] and Rep. Michael Lawler [R-NY] “To amend the Public Health Service Act to provide for congenital Cytomegalovirus screening of newborns.”

As it happens, Rep. Mike Lawler was a high school classmate of my older daughter and attended Elizabeth's funeral when he was in college (Elizabeth died Feb 9, 2006)According to "New Bill: Representative Michael Lawler introduces H.R. 5435: Stop CMV Act of 2025" (Quiver LegislationRadar), "The bill mandates that hospitals or health care entities caring for infants up to 21 days old conduct tests for congenital CMV. This is designed to identify CMV in newborns, which can lead to serious health issues if not detected early."

Contact your House/Senate representatives (members of Congress) and ask them to cosponsor the bill and join forces with the National CMV Foundation to "Support the Stop CMV Act."

I currently live in upstate New York, so I am also advocating for the following New York State legislation:

1. Assembly Bill A3956/S5454: "Requires cytomegalovirus screening for every newborn..."

2. Assembly Bill A3074/S7662: "Requires reporting of positive cytomegalovirus results." Newborns  "SHALL BE REFERRED TO A PEDIATRIC INFECTIOUS DISEASE SPECIALIST...BEFORE...FOUR WEEKS …EXAMINATION SHALL INCLUDE…EYE EXAM BY AN OPHTHALMOLOGIST; AND HEARING...”

The following New York Laws are already in place:

2022: “Elizabeth’s Law” (A7560), named in memory of my daughter. “Requires the provision of informational materials to child care providers and certain physicians and midwives regarding...congenital cytomegalovirus infection."

2018: Targeted CMV testing law (A587C/S2816) “Requires urine polymerase chain reaction testing for cytomegalovirus of newborns with hearing impairments”.