Dear New York State Residents:
If you want to see an end to the leading viral cause of birth defects, there are currently two bills that need cosponsors. You can help find these cosponsors by contacting your New York assemblymembers and senators PLUS your Congressman and the two U.S. Senators representing New York.
- STOP CMV Act 2024 introduced at the federal level: S.3864 /H.R.7542 (pdfs of bills: House and Senate)
- New York's universal CMV testing bill, A07997/S07659, which "requires cytomegalovirus screening for every newborn..." The final wording of that bill and its effective date will depend, I believe, on the pilot study that is currently underway in New York.
1) Contact your congressman and U.S Senators and ask them to cosponsor the Stop CMV Act. (letter templates from the National CMV Foundation below, and/or you can use excerpts of my letter with info specific to NY).
Find your congressman in the House of Representatives by entering your zip code in the window on the top right corner of this web page: https://www.house.gov/. Call their local office so you can find the best place to email your support, or you can try their established link for emails. Congressman Mike Lawler of the 17th District is the House of Representative sponsor. He attended my daughter Elizabeth's funeral services in 2006. His district includes all or parts of Rockland, Westchester, Putnam, and Dutchess counties. I called his Pearl River office to thank him at: 845-201-2060.
Your New York Senators:
Letter templates from National CMV Foundation (or see mine below):
House Letter Template
Senate Letter Template
MY SAMPLE LETTER TO MY CONGRESSMAN SHOWS THE NEW YORK ANGLE (I sent through the website contact link, but also called his local office to get a more direct email):
Dear Congressman Brandon Williams,
Congenital Cytomegalovirus (CMV) is the most common infectious cause of birth defects and the leading non-genetic cause of hearing loss in infants. “One in two hundred babies are born with congenital CMV, and 20% exhibit symptoms or long-term health problems. It is crucial that Congress invest in early intervention services to overcome these startling statistics,” said Congressman Lawler. “I’m proud to join my colleagues in introducing the bipartisan, bicameral STOP CMV Act. This legislation will improve access to screenings and invest in the critical research necessary to ensure children born with CMV grow up to live healthy lives” (Press Release, Mike Lawler, March 6, 2024)
I am on the Advisory Board (as a Parent Advocate) for PROACTIVE NYS, the long-term follow-up study of infants who screen positive for congenital CMV in New York (contact information for the doctors involved with that below my signature).
Here is some recent New York media coverage of the Stop CMV Act where I was quoted:
Our daughter Elizabeth was born with profound brain damage because I contracted CMV just prior to or early into my pregnancy in 1989. As a professional child care provider and mother of a toddler, I was at higher risk for CMV yet was never told to reduce "contact with saliva and urine from babies and young children...not sharing food, utensils, or cups with a child" (CDC). My efforts on a recently passed New York CMV law (named "Elizabeth's Law" in memory of my daughter) were featured in USA TODAY's article, "This virus is a leading cause birth defects. Why isn't it screened more?" (Oct. 2, 2023), by Eduardo Cuevas. Reporter Cuevas also included the news that New York "joined a growing number of states to universally screen early for CMV, prompted, in large part, by parents whose children have experienced health effects from the virus." Effective October 2, 2023, "New York begins a one-year pilot [study], testing all newborns for CMV using the routine method of a heel prick that leaves a dried blood spot on filter paper...With its pilot program, New York is the largest state to enact CMV screening. It's available to about 220,000 babies born annually in the state. State Rep. Linda Rosenthal, a Manhattan Democrat who sponsored Elizabeth's Law [John W. Mannion, Senate sponsor], now has a bill before the Legislature [A07997/S07659] following New York’s pilot, that would make universal screening permanent. It expands on a 2018 law Rosenthal sponsored that mandates hospitals test babies for CMV if they fail a hearing screening. The plan is to compare babies who failed a hearing screening with those who tested positive for CMV to babies who did not fail hearing tests, said Dr. Michele Caggana, director of the New York State Department of Health Newborn Screening Program...If CMV is found within the first 24 to 36 hours of birth, officials can connect families with primary care pediatricians and specialists to monitor and address neurologic, hearing and vision outcomes if problems develop, Caggana said."
The STOP CMV bill introduced at the federal level will increase the conversation about the problem of CMV, which I believe will help advance New York's A07997/S07659, which "requires cytomegalovirus screening for every newborn" in Albany.
The bipartisan Stop CMV Act authorizes funding to states for hospitals and other healthcare entities caring for infants to administer congenital CMV tests and encourages state healthcare agencies to prescribe standards and procedures for the administration of these tests. The bill also creates grant programs to provide funds to administer CMV tests, improve CMV data collection systems, and assist in CMV education and training. Lastly, the bill advances National Institutes of Health research for screening techniques, diagnostics, prevention, vaccines, and treatments.
With your help, we can reduce the impact of cCMV!
Please cosponsor this important bipartisan legislation today!
Sincerely,
Lisa Saunders
2) Contact your New York state senators and assemblymembers and ask them to cosponsor New York's universal CMV testing bill, A07997/S07659, which "requires cytomegalovirus screening for every newborn..."
MY SAMPLE LETTER TO MY ASSEMBLYMEMBER
Dear Assemblymember William B. Magnarelli,
Because it's important to test every newborn for CMV, I am asking that you now co-sponsor
A07997/S07659, which
"Requires cytomegalovirus screening for every newborn by administration of a urine polymerase chain reaction (PCR) test." Introduced on Sept. 20, 2023, A07997/S07659 is an amendment to the 2018 CMV law, requiring
only newborns who fail the hearing screen be tested for CMV.
According to Crain's New York Business, "State Sen. John Mannion, who sponsors [this] bill that would make the screening permanent, said early diagnosis and treatment are key in mitigating long-term health problems for babies, emphasizing the need for screening. According to Assemblywoman Linda Rosenthal, who also sponsors the bill, further action will depend on the results of the pilot (Sept. 28, 2023).
According to Joseph Domachowske, MD, professor of pediatrics, microbiology and immunology with a specialty in pediatric infectious diseases at SUNY Upstate Medical University, "not all congenitally infected babies have hearing loss at birth, and most babies born with CMV can be asymptomatic, so the best way to diagnose CMV early involves prevention education and better forms of testing. 'Hearing tests are somewhat helpful, but it’s not the best answer, and it’s not the best way to handle this,' Domachowske said. “What’s coming down the pike is adding CMV to universal newborn screening panels, and having that test done will be very specific for CMV” (Post-Standard, "How a Baldwinsville mother fought for 30 years to pass a law that might have saved her daughter", 2023).
Senator Mannion and Assemblymember Rosenthal may ask that universal testing become permanent practice in New York after the results are in from the pilot study (see below), and they will discuss further if it's best to require blood or urine testing.
Current Pilot Study in New York:
"The New York State Department of Health announced that effective October 2, 2023, all babies will be screened for Congenital Cytomegalovirus (cCMV), making New York the second state in the nation, after Minnesota, to screen all babies for the virus" (NY Dept. of Health, Sept. 29, 2023). The NY Newborn Screening Program is provisionally adding congenital CMV (cCMV) to its "screening panel for a period of one year" using dried blood spot (DBS) (NY Dept. Health, Wadsworth Center, Sept 1, 2023).
According to the September 8, 2023, webinar held by New York State Newborn Screening Program, the goal of testing every newborn for cCMV for one year is to help answer questions about whether or not universal cCMV screening can be successful nationwide. They need to see if cCMV can be detected by dried blood spot newborn screening and "Is catching and diagnosing cCMV at birth helpful?" It is believed that "Screening in a diverse population like New York will help determine true incidence" (Newborn Screening for Congenital Cytomegalovirus: A 1 Year Pilot, Sarah Bradley, MS, CGC, 2023).
According to
USA Today, "With its pilot program, New York is the largest state to enact CMV screening. It's available to about 220,000 babies born annually in the state. State Rep. Linda Rosenthal, a Manhattan Democrat who sponsored Elizabeth's Law, now has a bill before the Legislature following New York’s pilot, that would make universal screening permanent. It expands on a 2018 law Rosenthal sponsored that mandates hospitals test babies for CMV if they fail a hearing screening. The plan is to compare babies who failed a hearing screening with those who tested positive for CMV to babies who did not fail hearing tests, said Dr. Michele Caggana, director of the New York State Department of Health Newborn Screening Program.
" (
USA Today, Oct 2, 2023)
- Assemblymember Linda B. Rosenthal’s office at 518/455-5802, or email Nick Guile, Legislative Director for Assemblymember Rosenthal, at guilen@nyassembly.gov
- Senator John W. Mannion's office at 518-455-2954, or email Noah Rohde, Legislative Director for Senator Mannion, at noah@senatormannion.com
In 2022, Minnesota became the first state to pass legislation requiring every newborn be tested for CMV.
Sincerely,
Lisa Saunders, CMV Parent Advocate
Advisory Board,
PROACTIVE NYS (the NIH-funded follow-up study of young children with congenital CMV).
Baldwinsville, NY 13027
LisaSaunders42@gmail.com
Doctor contacts:
Doctors who helped provide backup information on the 2022 CMV "Elizabeth's Law" (I can give you phone numbers if you need them):
Dr. Sallie Permar, M.D. PhD., Weill Cornell Pediatrician-in-Chief, Board member of the National CMV Program, sap4017@med.cornell.edu
Sunil K. Sood, M.D., Chair of Pediatrics, South Shore University Hospital, Attending Physician, Infectious Diseases, Cohen Children's Medical Center and Professor, Zucker School of Medicine at Hofstra/Northwell, SSood@northwell.edu
To learn more about PROACTIVE NYS, the NIH-funded long-term follow-up study of young children with congenital CMV (cCMV), visit: https://www.proactivenys.org/ or contact:
Andrew S. Handel, MD, FAAP
Assistant Professor of Pediatrics
Division of Infectious Diseases
Stony Brook Children's Hospital
Renaissance School of Medicine at Stony Brook University
Office: 631.444.7692
Sharon Nachman MD
MY NOTES:
1. S.3864 — 118th Congress (2023-2024)
Stop CMV Act of 2024Sponsor: Blumenthal, Richard [Sen.-D-CT] (Introduced 03/05/2024) Cosponsors: (2)Committees: Senate - Health, Education, Labor, and PensionsLatest Action: Senate - 03/05/2024 Read twice and referred to the Committee on Health, Education, Labor, and Pensions. (All Actions)
1. H.R.7542 — 118th Congress (2023-2024)To amend the Public Health Service Act to provide for congenital Cytomegalovirus screening of newborns.Sponsor: Lawler, Michael [Rep.-R-NY-17] (Introduced 03/05/2024) Cosponsors: (1)Committees: House - Energy and CommerceLatest Action: House - 03/05/2024 Referred to the House Committee on Energy and Commerce. (All Actions)
Brandi Hurtubise, New York National CMV Alliance Chair, is hosting a NY Strides for CMV event. It will take place at Knox Farms on June 29, 2024, in honor of June CMV Awareness Month. This may be the link for where the event is being held, but I'm not sure: Knox Farm State Park, East Aurora, NY. For more info, contact Brandi at:nationalcmvny@gmail.com)
Kara Russell of Penfield (near Rochester) said, "My daughter 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, my youngest child, was born in 2018 and passed her newborn hearing screen, so she wasn't 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 in summer 2023 that we learned she had profound hearing loss - that she was totally deaf in her left ear. We have no idea how long she was unable to hear accurately, even though she was receiving speech services since age four and had some coordination delays. 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" (CDC/HearingLossinChildren). Lyla's pediatrician referred us to a pediatric audiologist who, after confirming the hearing loss, referred us to an ENT. In January 2024, the ENT said she wanted to test Lyla's newborn blood spot for Congenital CMV. She explained that I may have contracted CMV while pregnant, passing it to my unborn child. The test came back positive. I was told that Lyla might lose hearing in her other ear and she needed to have her hearing tested every three months indefinitely because hearing loss from congenital CMV can be progressive. To say I was dumbfounded is an understatement. I had never heard of CMV despite having two older children and numerous prenatal visits. I was angry to learn that something I never knew existed can cause permanent disabilities and that I might have been able to prevent it if I had known the precautions to take. Now, Lyla's school is conducting cognitive testing as they suspect a delay. My goal is for every newborn to be screened for congenital CMV and for CMV education to be presented during prenatal visits since a woman may be able to reduce her chances of contracting it."
Rocks painted by Tabitha Rodenhaus in honor of daughter Kaia. Jim and I leave them along the Erie Canalway Trail between Albany and Buffalo.
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Kristin Schuster of Canandaigua, 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 treatment most effective when given between ages zero to six months. She was not diagnosed with congenital CMV at birth despite failing her newborn hearing screen multiple times, having 'low for gestational age' birth weight, and microcephaly. Autumn received her first pair of hearing aids for bilateral severe hearing loss at 4 months old, glasses for vision impairment at 5 months, an MRI showing brain calcifications, very significant global delays, and received a g-tube for feeding at 15 months of age. Up until then, all of the doctors and specialists we were seeing claimed that her diagnoses were 'unrelated.' It wasn't until I read an article about CMV posted in a Facebook group for Rochester parents of children with hearing loss that I had that 'aha' moment that congenital CMV must be the root cause of all of my daughter's difficulties. When I requested to have her tested for CMV, I was initially given pushback, but when I demanded her newborn blood spot be tested, her neurologist arranged to have it tested from where it was banked in Albany. When the test came back, we finally had our confirmed diagnosis of congenital CMV--too late for her to receive treatment in the optimal first months of life."
Kristin, myself and Brandi Hurtubise, New York National CMV Foundation Alliance Chair and mother of Samantha, were already featured together in the article, "How a Baldwinsville mother fought for 30 years to pass a law that might have saved her daughter", The Post-Standard, Vallelunga, E., Jan.1, 2023, Syracuse.com.
"Our daughter Elizabeth was born with profound brain damage because I contracted CMV just prior to or during my pregnancy in 1989. As a professional child care provider and mother of a toddler, I was at higher risk for CMV, yet was never educated about this risk or how to prevent contracting CMV. Elizabeth's disabilities might have been prevented had I known to reduce "contact with saliva and urine from babies and young children...not sharing food, utensils, or cups with a child" (CDC.gov/CMV). My goal is that all women of childbearing age across the U.S. will know how to prevent CMV before becoming pregnant." In 2022, Elizabeth’s Law was passed in New York requiring the provision of CMV educational materials to child care providers and pregnant women. (USA TODAY: "This virus is a leading cause birth defects. Why isn't it screened more?", 2023).
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