Why Does New York Need a Revised CMV Education Law?

I'm the mother of Elizabeth Saunders, born with severe brain damage from congenital cytomegalovirus (CMV) in 1989. She died in 2006 during a seizure. When I was pregnant with Elizabeth, I ran a licensed child care center in my home, volunteered in our church nursery and had a toddler of my own--all things that put my pregnancy at risk for CMV, the leading viral cause of birth defects, because otherwise healthy toddlers are often excreting the virus--especially those in group care. 

When my husband Jim, now a retired Pfizer scientist, and I were living in Connecticut, we helped the state become the second, after Utah, to pass a CMV testing law in 2015. 

Now living in New York, we are glad New York passed a CMV testing law in 2018, but more needs to be done in regard to prevention. I wish we didn't need a law to ensure women are educated about CMV, but no other strategy has worked for decades.

CMV is “'a virus that has a PR problem. It’s the most common congenital infection in every population, happening in 1 out of every 150 babies, yet most pregnant women don’t know about it,'' said Dr. Sallie Permar, Chair, Department of Pediatrics, Weill Cornell Medicine, and pediatrician-in-chief, NewYork-Presbyterian Komansky Children’s Hospital. "'It’s a virus we have recognized for over 60 years as the cause of birth defects and brain damage in infants...'" ("Dr. Sallie Permar’s Work Protecting Mothers, Infants from HIV, CMV Lands Her Among ‘Giants’," Weill Cornell Medicine,  June 10, 2021). 

"Policy and legislation, backed by accurate science, are viable tools to change behaviour to reduce congenital cytomegalovirus (CMV) infections. Addressing CMV through public policy can provide increased awareness among public health officials, access to existing venues for disseminating information, and much needed funds for awareness campaigns. While some medical professionals and CMV experts oppose public policy and legislation mandating medical practice, most support policies aimed at public education campaigns to provide consumers with accurate CMV education" ("Reducing congenital cytomegalovirus infection through policy and legislation in the United States," Sara Menlove Doutre, Microbiology Australia, 2015). 

Angela Cote of Buffalo appreciates the 2018 New York CMV testing law because it helped doctors diagnose why her daughter Elise failed her hearing test giving her options for early intervention. But  Angela wishes she had known about CMV and how to prevent it BEFORE her pregnancy with Elise--especially since Angela had an occupational risk for it. She said, "Not once have I ever heard of CMV or was told about CMV. I was a nanny so I was around children a lot as well as having my daughter, who was a toddler at the time I became pregnant with Elise. Not my OB or any other doctor mentioned or screened me for CMV to see if I had been exposed in the past."

“This is a very common virus, but it remains somewhat under the radar. A woman can unknowingly acquire it during pregnancy, and pass the infection to the unborn baby,” states 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. ”CMV is spread from person to person through body fluids. Day care workers, nurses, mothers of young children, and others who work with young children are at greatest risk of exposure to CMV. Since young children commonly carry CMV, pregnant women and women planning pregnancies should take extra care to avoid urine and saliva from young children” (“Could CMV Be the Cause of My Baby's Failed Hearing Test?”, NYMetroParents, 2016).

To kick-off New York's June 2021 Cytomegalovirus Awareness Month in Lyons (Wayne County) on June 5, we were fortunate enough to have one of the co-sponsors of the Proclamation read it out loud, including the statement that "It is imperative that women are educated  about  the  virus itself  and  simple preventative measures, such as not sharing food with toddlers, and washing one's hands after changing  infants  and  toddlers diapers..." The reading concluded with a placement of over 220 rocks painted silver, the official color of CMV awareness, within a read, heart-shaped rock border to honor the number of babies born disabled by congenital CMV in New York each year. Kristin Schuster of Canandaigua, mother of Autumn born in 2015 with congenital CMV, painted many of these silver rocks and, per requests from families unable to attend, wrote the names of 70 children born disabled by CMV on the rocks. Her daughter Autumn tried to help us place the silver rocks in the heart. Jessica Keukelaar of Macedon was in attendance with her firstborn Kyleigh, born with congenital CMV in 2018. Like Kristin and myself, Jessica worked professionally with young children during her pregnancy. You can watch this music video of the event set to a song written for the cause, "Had I Known (about CMV)," at: https://youtu.be/dUEQmKrG354

The following list explains why CMV has a "PR problem":

IF CMV WAS A PROBLEM, WOULDN’T MY DOCTOR TELL ME?

6 Possible Reasons Women Are Unaware of CMV

1) CMV prevention education is not "part of standard prenatal care” 

(Washington Post, "How a common, often harmless virus called cytomegalovirus can damage a fetus," May 15, 2021.)

2) Doctors don’t want to frighten, worry or “burden” patients.

New York Times: "The American College of Obstetricians and Gynecologists [ACOG] used to encourage counseling for pregnant women on how to avoid CMV. But [ in 2015], the college reversed course...Guidelines from ACOG suggest that pregnant women will find CMV prevention 'impractical and burdensome,' especially if they are told not to kiss their toddlers on the mouth — a possible route of transmission.” (Saint Louis, 2016). 

3)"The virtual absence of a prevention message has been due, in part, to the low profile of congenital CMV. Infection is usually asymptomatic in both mother and infant, and when symptoms do occur, they are non-specific, so most CMV infections go undiagnosed” (Cannon and Davis, 2005).

4) Medical training downplays the dangers. Pediatrician Megan Pesch, M.D., of the University of Michigan’s C.S. Mott Children’s Hospital, whose third daughter was born with congenital CMV and a progressive hearing loss, said, "I went back and looked at my notes at what I’d learned in residency and medical school, and what we learned was so rudimentary and basic...I waver between feeling guilty and feeling furious. I have spent — how many years of my life in developmental pediatrics? — how could I not have known?”(Washington Post, "How a common, often harmless virus called cytomegalovirus can damage a fetus," May 15, 2021.)

5) Low media coverage. In the HealthNewsReview.org article, "Why does CMV get so much less news coverage than Zika — despite causing far more birth defects?"  the author states,  “Researchers we spoke with identified the same factors – fear and the epidemic/endemic nature of the diseases – as driving the media disparity” (Shipman, 2018).

6) Although U.S. workers have the right to “receive information and training about hazards” (Occupational Safety and Health Act of 1970), there are no federal laws governing CMV education policies for child care workers. The Department of Labor states, "Education and training requirements vary by setting, state, and employer."

Below my signature are ways I'm trying to solve CMV's "PR problem" with the help of the media.

Lisa Saunders

@NYStopCMV

Baldwinsville, NY

LisaSaunders42@gmail.com

MEDIA COVERAGE OF CMV

2021 

1.  Spectrum News, "Couple pushes for law in memory of their daughter" Jessica Houghtaling, Jul. 01, 2021. Includes interview with Dr. Sunil Sood and is airing across the Capital region, Hudson Valley, Rochester, Buffalo, North Country and Southern Tier).
2. Music video of child placing CMV rocks at the Trail of Hope in Lyons, "Had I Known, Lyrics and Music by Debra Lynn Alt," produced by Mark De Cracker, Jun 8, 2021
   
3. Finger Lakes Times, "Trail of Hope celebration in Lyons marks CMV Month in New York", Steve Buchiere (Jun 11, 2021). 
4. Finger Lakes Times: "MAKING A DIFFERENCE: Couple brings awareness to threat to infant health: CMV", Steve Buchiere (June 4, 2021).
5. The Citizen:  "NY Senate passes bill, named for CNY couple's daughter, to boost CMV awareness",  Robert Harding (June 2, 2121). 
6. Syracuse Woman magazine, "Fighting CMV One Step at a Time (p.28)", Emma Vallelunga (May 2021) (p.29 image of Stop CMV hand, rock and shirt)
7. The Citizen: "'Elizabeth's law,' named for CNY couple's daughter, would boost CMV awareness", Robert Harding (May 4,2021)
8. The Citizen, "Challenge for Change: Walking across NY to raise awareness of CMV", David Wilcox (Mar 31, 2021)

2016 

1. New York Times, "CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed" By Catherine Saint Louis (Oct. 24, 2016).
2. NYMetroParents, “Could CMV Be the Cause of My Baby's Failed Hearing Test?” : “This is a very common virus, but it remains somewhat under the radar. A woman can unknowingly acquire it during pregnancy, and pass the infection to the unborn baby," states 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.  "CMV is spread from person to person through body fluids. Day care workers, nurses, mothers of young children, and others who work with young children are at greatest risk of exposure to CMV. Since young children commonly carry CMV, pregnant women and women planning pregnancies should take extra care to avoid urine and saliva from young children” (March 21, 2016).

 CMV LAW PASSED IN CONNTECTICUT with LISA SAUNDERS

1. News 8, “Mystic mother raises awareness of CMV, a risk for pregnant women and their babies”, Sarah Cody (June 13, 2018) 
2. Cornell Alumni Magazine: "In Memory of Elizabeth: Her daughter's death from a preventable disability spurs Lisa Avazian Saunders '82 into action," Alexandra Bond (Sept/Oct 2015).
3. Times Herald Record: What every pregnant woman needs to know, Deborah J. Botti

HOW YOU CAN HELP GET CMV EDUCATION LAW PASSED IN NY. Listen to "Had I Known"

What can you do to help?

The CMV education bill (Senate Bill:S6287) was passed by the Senate at the close of the 2021 Legislative Session, but it remained pending in the Assembly Children and Families Committee. While no further action is expected during the off-Session (from now until Jan. 2022), please use this time to gather the support of Assembly members. 

Email and/or call your assemblymember (find yours at: https://nyassembly.gov/mem/search/) and ask them to co-sponsor A7560 (https://www.nysenate.gov/legislation/bills/2021/a7560). 

A phone call usually only takes 30 seconds because you will often just reach the answering machine or a staff member taking messages for your assemblymember. An email is quick, too. Either way, you can say something like:

My name is __________and I live in your district on _____________ (street) in the Town of ___________. I want you to co-sponsor Assembly Bill A7560, which is the same as Senate Bill:S6287, already passed in 2021, because I want to ensure women are educated about how to protect their pregnancies from the leading viral cause of birth defects, cytomegalovirus or CMV. I  know of women who were stunned to learn their newborn's disabilities might have been prevented had they known the precautions to take around the toddlers in their care just prior to or during their pregnancy.  As you may be aware, New York proclaimed June 2021 as Cytomegalovirus Awareness Month, stating, that "It is imperative that women are educated about the virus itself and simple preventative measures, such as not sharing food with toddlers, and washing one's hands after changing infants and toddlers diapers..." 

The CDC has a lot of information about this preventable disease at: cdc.gov/cmv. 

If you can tell that the person who is taking down your information is interested in learning more, you can add: Assembly Bill A7560 states that it is "AN ACT to amend the social services law, in relation to requiring child care providers to be trained on the impacts and dangers of congenital cytomegalovirus infection and the treatments and methods of prevention of cytomegalovirus infection; and to amend the public health law, in relation to requiring certain physicians to distribute informational materials concerning cytomegalovirus ...The commissioner shall distribute such cytomegalovirus informational materials to licensed physicians who practice obstetric and/or gynecology in this state. Such physicians shall provide such informational material to each pregnant patient during such patient's first appointment with such physician. Such physician shall also discuss the risks associated with and the transmission of cytomegalovirus with such patient."

Thank you in advance for your help.

[name, address, phone number]

DEAR READER:

If you want additional information just for your own sake and for the sake of those you care about, the following includes some of my summaries:

HERE ARE REASONS LEGISLATORS DON'T KNOW ABOUT CMV AND WHY SOME DOCTORS/CHILD CARE POLICY MAKERS MAY OPPOSE AN EDUCATION BILL

1) CMV prevention education is not "part of standard prenatal care” 

(Washington Post, "How a common, often harmless virus called cytomegalovirus can damage a fetus," May 15, 2021.)

2) Doctors don’t want to frighten, worry or “burden” patients.

New York Times: "The American College of Obstetricians and Gynecologists [ACOG] used to encourage counseling for pregnant women on how to avoid CMV. But [ in 2015], the college reversed course...Guidelines from ACOG suggest that pregnant women will find CMV prevention 'impractical and burdensome,' especially if they are told not to kiss their toddlers on the mouth — a possible route of transmission.” (Saint Louis, 2016). 

3)"The virtual absence of a prevention message has been due, in part, to the low profile of congenital CMV. Infection is usually asymptomatic in both mother and infant, and when symptoms do occur, they are non-specific, so most CMV infections go undiagnosed” (Cannon and Davis, 2005).

4) Medical training downplays the dangers. Pediatrician Megan Pesch, M.D., of the University of Michigan’s C.S. Mott Children’s Hospital, whose third daughter was born with congenital CMV and a progressive hearing loss, said, "I went back and looked at my notes at what I’d learned in residency and medical school, and what we learned was so rudimentary and basic...I waver between feeling guilty and feeling furious. I have spent — how many years of my life in developmental pediatrics? — how could I not have known?”(Washington Post, "How a common, often harmless virus called cytomegalovirus can damage a fetus," May 15, 2021.)

5) Low media coverage. In the HealthNewsReview.org article, "Why does CMV get so much less news coverage than Zika — despite causing far more birth defects?"  the author states,  “Researchers we spoke with identified the same factors – fear and the epidemic/endemic nature of the diseases – as driving the media disparity” (Shipman, 2018).

6) Although U.S. workers have the right to “receive information and training about hazards” (Occupational Safety and Health Act of 1970), there are no federal laws governing CMV education policies for child care workers. The Department of Labor states, "Education and training requirements vary by setting, state, and employer." One daycare director shared her worries with me about how hard it was going to be to keep employees if she told them about CMV. She did the right thing, she sent out a memo about CMV to her employees, but  I later learned through a volunteer there that new employees were unaware of CMV, making me think it wasn't included in the new hire information. 

SUMMARY OF WHAT HAPPENED IN 2021:

Although the Senate passed  Senate Bill S6287) this year (see "NY Senate passes bill, named for CNY couple's daughter, to boost CMV awareness"), the Assembly did not pass it because they never had a chance to vote on it as it was never voted out of the  Assembly Children and Families Committee. 

I was told  we REALLY need the  Assembly Children and Families Committee   members to become co-sponsors of the bill and we can bother them now even though they are unable to vote on it until January of 2022. 

The following email is  basically what I've been saying to assemblymembers:

Dear_______

I'm the mother of Elizabeth Saunders, born with severe brain damage from congenital cytomegalovirus (CMV) in 1989. She died in 2006 during a seizure. When I was pregnant with Elizabeth, I ran a licensed child care center in my home, volunteered in our church nursery and had a toddler of my own--all things that put my pregnancy at risk for CMV, the leading viral cause of birth defects, because otherwise healthy toddlers are often excreting the virus--especially those in group care. 

When my husband Jim, now a retired Pfizer scientist, and I were living in Connecticut, we helped the state become the second, after Utah, to pass a CMV testing law in 2015. 

Now living in New York, we are glad New York passed a CMV testing law in 2018, but more needs to be done in regard to prevention. I wish we didn't need a law to ensure women are educated about CMV, but no other strategy has worked for decades.

CMV is “'a virus that has a PR problem. It’s the most common congenital infection in every population, happening in 1 out of every 150 babies, yet most pregnant women don’t know about it,'' said Dr. Sallie Permar, Chair, Department of Pediatrics, Weill Cornell Medicine, and pediatrician-in-chief, NewYork-Presbyterian Komansky Children’s Hospital. "'It’s a virus we have recognized for over 60 years as the cause of birth defects and brain damage in infants...'" ("Dr. Sallie Permar’s Work Protecting Mothers, Infants from HIV, CMV Lands Her Among ‘Giants’," Weill Cornell Medicine,  June 10, 2021). 

Angela Cote of Buffalo appreciates the 2018 New York CMV testing law because it helped doctors diagnose why her daughter Elise failed her hearing test giving her options for early intervention. But  Angela wishes she had known about CMV and how to prevent it BEFORE her pregnancy with Elise--especially since Angela had an occupational risk for it. She said, "Not once have I ever heard of CMV or was told about CMV. I was a nanny so I was around children a lot as well as having my daughter, who was a toddler at the time I became pregnant with Elise. Not my OB or any other doctor mentioned or screened me for CMV to see if I had been exposed in the past."

“This is a very common virus, but it remains somewhat under the radar. A woman can unknowingly acquire it during pregnancy, and pass the infection to the unborn baby,” states 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. ”CMV is spread from person to person through body fluids. Day care workers, nurses, mothers of young children, and others who work with young children are at greatest risk of exposure to CMV. Since young children commonly carry CMV, pregnant women and women planning pregnancies should take extra care to avoid urine and saliva from young children” (“Could CMV Be the Cause of My Baby's Failed Hearing Test?”, NYMetroParents, 2016).

To kick-off New York's June 2021 Cytomegalovirus Awareness Month in Lyons (Wayne County) on June 5, we were fortunate enough to have one of the co-sponsors of the Proclamation read it out loud, including the statement that "It is imperative that women are educated  about  the  virus itself  and  simple preventative measures, such as not sharing food with toddlers, and washing one's hands after changing  infants  and  toddlers diapers..." The reading concluded with a placement of over 220 rocks painted silver, the official color of CMV awareness, within a red, heart-shaped rock border to honor the number of babies born disabled by congenital CMV in New York each year. Kristin Schuster of Canandaigua, mother of Autumn born in 2015 with congenital CMV, painted many of these silver rocks and, per requests from families unable to attend, wrote the names of 70 children born disabled by CMV on the rocks. Her daughter Autumn tried to help us place the silver rocks in the heart. Jessica Keukelaar of Macedon was in attendance with her firstborn Kyleigh, born with congenital CMV in 2018. Like Kristin and myself, Jessica worked professionally with young children during her pregnancy. You can watch this music video of the event set to a song written for the cause, "Had I Known (about CMV)," at: https://youtu.be/dUEQmKrG354

WHEN I FIRST STARTED CONTACTING NEW YORK LEGISLATORS IN 2020 ABOUT REVISING THE CURRENT LAW, HERE IS THE CMV FACT SHEET I SENT THEM:

 

New York CMV Advocacy Project 

Revise Public Health Law, Senate Bill S2816

to improve prevention and early treatment of congenital cytomegalovirus

In 2020, I learned that mothers and child care providers of young children in New York are still not being educated about their "occupational risk" for CMV despite OSHA's warning to caregivers, the NY Department of Health's webpage on CMV, and the availability of several free educational tools from the CDC and Cornell University

More New York babies can avoid the disabilities caused by congenital cytomegalovirus (cCMV), saving taxpayers the costs of special education, lost wages, etc., by making the following amendments to S2816:

1) Provide more specific wording to help the Health Department fulfill its mandate already in place to provide CMV prevention education, particularly for women at high risk, such as pregnant mothers who have a toddler in group care and child care providers/educators. The risk of cCMV is significantly higher than other, better-known congenital diseases such as fetal alcohol syndrome and HIV/AIDS. Prevention measures are simple and include basic hygiene practices that involve avoiding contact with saliva and urine from babies and young children. cCMV infections can only be prevented by preventing CMV infection in pregnant women.

2. Make cCMV a reportable condition in New York (https://health.ny.gov/forms/instructions/doh-389_instructions.pdf). This will enable health department personnel to track affected babies and notify their pediatricians within the 3 week window to confirm that the infection is congenital. This in turn will compel the pediatrician to refer the baby with cCMV to a Pediatric Infectious Diseases Specialist, who would pursue a workup and consider antiviral treatment to lessen the long-term consequences. Moreover, early identification of cCMV has been found to reduce the functional impairments that stem from hearing loss.

FACT SHEET

A. What is Congenital Cytomegalovirus (cCMV)?

• CCMV is the most common congenital (present from birth) infection in the United States.

• Cytomegalovirus (CMV) is a type of herpesvirus and can be acquired at any point, often resulting in mononucleosis-like symptoms, or even no symptoms at all. While it is a type of herpesvirus, CMV is not the same as the sexually-transmitted disease genital herpes.

• cCMV is acquired in utero and can result in much more serious effects in the baby.

• cCMV is the leading infectious cause of birth defects and developmental disabilities, including: hearing loss, mental disabilities, physical disabilities, vision loss, seizures, cerebral palsy, and in the most serious cases, can result in death.(www.ncbi.nlm.nih.gov/pmc/articles/PMC3046747/).

• CMV by the Numbers: 


# In the U.S., about 1 in every 200 babies is born with a cCMV infection. Of these babies, around 1 in 5 will have long-term health problems.(www.cdc.gov/cmv/index.html). 

# In 2019, 3,747,540 babies were born in the U.S (https://www.cdc.gov/nchs/fastats/state-and-territorial-data.htm). Therefore, an estimated 18,738 babies were born with congenital CMV and 3,748 babies had some disability caused by cCMV in the U.S.

# In New York, in 2019, 221,539 babies were born. Therefore, an estimated 1,108 babies were born with congenital CMV, with 222 babies being born permanently disabled by congenital CMV.

• New York Times article, CMV Is a Greater Threat to Infants Than Zika, but Far Less Often  Discussed features Gail J. Demmler-Harrison, MD. She states on her medical blog: “Approximately 1-4% of all pregnant women will experience a primary CMV infection during their pregnancy. If you work in a child care setting, the risk increases to approximately 10%. If you have a toddler at home who is actively infected with CMV and shedding CMV in their saliva or urine, the risk is even higher, approaching 50% in some studies” (“CMV In Pregnancy: What Should I Know?,” 2014).

• Racial and ethnic minorities are particularly at risk for CMV: "CMV is more common among socially disadvantaged groups, and it clusters geographically in poor communities,"  states article, Geographic Disparities in Cytomegalovirus Infection During Pregnancy (Lantos et al, 2017).  "We found a high prevalence of CMV seropositivity in urban low-income neighborhoods among pregnant women, particularly among racial and ethnic minorities. Seronegative pregnant women from these communities might be at heightened risk for primary CMV infection." Another study concluded, "Significant racial and ethnic differences exist in the prevalence of cCMV, even after adjusting for socioeconomic status and maternal age" (Fowler et al.,Racial and Ethnic Differences in the Prevalence of Congenital Cytomegalovirus Infection, 2018).

B. cCMV is largely preventable, but 91% of women do not know about the disease or prevention.

• There is a lack of Education and Awareness of cCMV and its Prevention Measures

• Only 9% of women are aware of CMV and its implications; the awareness in men is even lower (5%) (https://digitalcommons.usu.edu/jehdi/vol1/iss2/6/).

• cCMV is highly preventable with education and easy prevention measures (such as frequent hand-washing, avoiding sharing food, and avoiding contact with a child’s saliva) during pregnancy.

• 1.2% of expecting mothers who were given hygiene information on CMV and cCMV prevention and prospectively tested until delivery acquired a CMV infection, compared to 7.6% in a comparison group who did not receive prevention education or testing (https://pubmed.ncbi.nlm.nih.gov/26501119/).

• PROBLEM IN NEW YORK FOR CAREGIVERS/TEACHERS: When the New York State Office of Children and Family Services (the group that licenses child care providers) was contacted in 2020, it was learned that child care providers are still not receiving CMV information in their already mandated infectious disease training despite their occupational risk for CMV and the free CMV training resources available. Free resources include OSHA's warning to caregivers, the NY Department of Health's webpage on CMV, and educational tools from the CDC and Cornell University. The Professional Development Program in Albany, the organization that creates the training for child care licensing (Phone: 518 442-6575), could not be reached for comment.

• SOLUTION: Child Care Providers already receive infection control training to receive their licenses, so inserting CMV information into training shouldn't cost the state anything. In 2018, HOWARD A. ZUCKER, M.D., J.D , Commissioner of Health, stated: "People who have frequent contact with young children may be at greater risk of CMV infection. CMV can be present in especially high amounts in young children's saliva and urine for months after they become infected. While exposure to CMV may be difficult to avoid, particularly for those who have young children already, it is imperative that we give women of reproductive age the information they need to make informed decisions for themselves and their families...According to the Centers for Disease Control and Prevention (CDC), female workers of reproductive age in child care centers should be educated on CMV and its potential risks, and should have access to appropriate hygiene measures to minimize occupationally-acquired infection... " (https://health.ny.gov/commissioner/letters/docs/2018-08.pdf). 

• Although New York's Senate Bill S2816 requires public education, the Department of Health's website CMV page is rudimentary and was last reviewed in October 2011. It lists a few facts about the virus in general but does not address cCMV directly, moreover its statistics about CMV are incorrect and outdated. (www.health.ny.gov/diseases/communicable/cytomegalovirus/fact_sheet.htm).

• Women of childbearing age have the right to be informed with information that can protect them during their pregnancies, yet are still uninformed. This has significant impact on women at high risk for CMV such as mothers with a toddler in group care and caregivers/teachers.

Medical Costs of cCMV

(See: https://cmv.usu.edu/Uploads/pdfs/17739_9664Scott%20D.Grosse.pdf)

The median cost of healthcare for a child with a symptomatic case of cCMV is 25.2 times higher than that of a child without cCMV over the course of the first four years.

In the general population, the median out-of-pocket expenditures throughout the first four years of a child’s life is $1,508. Among children with symptomatic cCMV, that cost is almost four times as high, at $6,766 per child. Among children with neurological complications resulting from cCMV, the median out-of-pocket cost increased to $8,511.

APPENDIX I

FUTURE EFFORTS

Universal Screening of Infants for cCMV Allows for Early Detection & Interventions

cCMV screening and should be pursued as the next step in cCMV legislation. If cCMV is detected at birth, some babies can be treated with antiviral drugs and hearing loss, as well as other side effects, can be mitigated.

Failure to detect cCMV is common and has devastating consequences: cCMV goes largely undetected because a majority of affected babies are asymptomatic at birth. However, being symptom-free at birth does not necessarily exempt asymptomatic cCMV-positive infants from the disease's impacts later in life. Currently in New York, there is a statewide policy that infants are to be screened for cCMV if they fail their hearing screening. However, this targeted screening is insufficient. 10-25 % of babies born  with cCMV will have no symptoms at birth but will later develop hearing loss by age 18. Because hearing loss due to cCMV often worsens or develops later in childhood, a policy of targeted screening of infants who fail the newborn hearing screening fails to detect nearly half CMV cases. (www.ncbi.nlm.nih.gov/pmc/articles/PMC5260148/), (https://pediatrics.aappublications.org/content/early/2017/02/14/peds.2016-2610)

ABOUT ME AND HOW CORNELL HAS ALREADY HELPED HELPED ME RAISE CMV AWARENESS:

1. Cornell Alumni Magazine: In Memory of Elizabeth: Her daughter's death from a preventable disability spurs Lisa Avazian Saunders '82 into action (2015),
2. The Cornell Industrial Labor and Relations (ILR) department also connected me to Nellie Brown, MS, CIH, Certified Industrial Hygienist, and Director, Workplace Health and Safety Program, Cornell University – ILR School. As a result of our collaboration, Cornell published her presentation: "Preventing exposure in child care and educational settings, including OSHA advisories." Ithaca, NY: Cornell University, ILR School. Available from: https://digitalcommons.ilr.cornell.edu/conference/45/ Nellie also created a video workshop: https://vimeo.com/user43999427/download/450219803/e5b7be27db (Permission to make this training program available online granted by The Center for Occupational & Environmental Medicine. For further information, or to ask about a Q and A over Zoom, contact Nellie Brown at: njb7@cornell.edu).

***

A) If super ambitious, we really need members of the Assembly Children and Families Committee to become co-sponsors so we can get the bill passed in their committee and onto the Assembly floor for a vote. Below I listed the Committee members with their phone numbers, email addresses and districts.

Chair

 Andrew Heves, HevesiA@nyassembly.gov,  718-263-5595

District Office:
70-50 Austin Street
Suite 118
Forest Hills, NY 11375
https://nyassembly.gov/mem/Andrew-Hevesi,

Members

• Khaleel M. Anderson,  andersonk@nyassembly.gov
• District Office
  131-17 Rockaway Boulevard
  South Ozone Park, NY 11420
  718-322-4958
  
  Marjorie Byrnes,  byrnesm@nyassembly.gov
• District Office
  79 Genesee St.
  Avon, NY 14414
  585-218-0038
  Fax: 585-226-2022
  
• 
  
• Sarah Clark,   clarks@nyassembly.gov
• District Office
  1800 Hudson Ave
  Second Floor, Suite 4
  Rochester, NY 14617
  585-467-0410
  
• 
  
• Catalina Cruz,   cruzc@nyassembly.gov
• District Office
  41-40 Junction Blvd
  Corona, NY 11368
  718-458-5367
  
• 
  
• Taylor Darling,   darlingt@nyassembly.gov
• District Office
  33 Front Street
  Suite 104
  Hempstead, NY 11550
  516-489-6610
  
• 
  
• Maritza Davila,   DavilaM@nyassembly.gov
• District Office
  249 Wilson Avenue
  Brooklyn, NY 11237
  718-443-1205
  Fax: 718-443-1424
  
• 
  
• Mathylde Frontus,  FrontusM@nyassembly.gov
• District Office
  310 93rd Street
  Brooklyn, NY 11209
  347-560-6302
  Fax: 347-497-5372
  
• 
  
• Jeff Gallahan,  gallahanj@nyassembly.gov
• District Office
  70 Elizabeth Blackwell St.
  Geneva, NY 14456
  315-781-2030
  Fax: 315-781-1746
  
• 
  
• Jessica González-Rojas,  gonzalezrojasj@nyassembly.gov
• District Office
  75-35 31st Ave.
  Suite 206B (2nd Floor)
  East Elmhurst, NY 11370
  718-457-0384
  
• Kimberly Jean-Pierre,   jeanpierrek@nyassembly.gov
• District Office
  640 West Montauk Highway
  Lindenhurst, NY 11757-5538
  631-957-2087
  
• Jennifer Lunsford,   lunsfordj@nyassembly.gov
• District Office
  268 Fairport Village Landing
  Fairport, NY 14450
  585-223-9130
  
• Demond Meeks,  meeksd@nyassembly.gov
• District Office
  107 Liberty Pole Way
  Rochester, NY 14604
  585-454-3670
  
• Melissa Miller,   MillerML@nyassembly.gov
• District Office
  2001 Park St.
  Atlantic Beach, NY 11509
  516-431-0500
  
• Marcela Mitaynes,   mitaynesm@nyassembly.gov
• District Office
  4907 4th Avenue
  Suite, 1A
  Brooklyn, NY 11220
  718-492-6334
  Fax: 718-765-4186
  
• John Salka (HE CO-SPONSORED CMV AWARENESS MONTH),   salkaj@nyassembly.gov
• District Office
  214 Farrier Avenue
  Oneida, NY 13421
  315-361-4125
  Fax: 315-361-4222
  
• Clyde Vanel,   vanelc@nyassembly.gov
• District Office
  97-01 Springfield Boulevard
  Queens Village, NY 11429
  718-479-2333
  

B) Contact all all 25 co-sponsors of the June 2021 Cytomegalovirus Awareness Month proclamation. Assembly Member Directory: https://assembly.state.ny.us/mem/

Here is the breakout:

25 co-sponsors of the June 2021 Cytomegalovirus Awareness Month proclamation  

Joe Angelino

District 122

angelinoj@nyassembly.gov

1 Kattelville Road

Suite 1

Binghamton, NY 13901

607-648-6080

Fax: 607-648-6089

LOB 549

Albany, NY 12248

518-455-5741

Fax: 518-455-5864

Jeffrion L. Aubry

District 35

AubryJ@nyassembly.gov

98-09 Northern Blvd.

Corona, NY 11368

718-457-3615

Fax: 718-457-3640

LOB 646

Albany, NY 12248

518-455-4561

Fax: 518-455-4565

Karl Brabenec

District 98

brabeneck@nyassembly.gov

28 North Main St.

Suite 2

Florida, NY 10921

845-544-7551

Fax: 845-544-7553

LOB 329

Albany, NY 12248

518-455-5991

Marianne Buttenschon 

Robert C. Carroll   
Michael Cusick 

Inez E. Dickens 

Joe DeStefano

 Michael Durso  

Sandy Galef   

Jodi Giglio 

Stephen Hawley 

Donna Lupardo (U)  

Brian Manktelow (He said he would co-sponsor it)  

John T. McDonald III 

John K. Mikulin   

Brian D. Miller 

Angelo J. Morinello 

N. Nick Perry 

Diana Richardson 

John Salka  --HE IS ALSO ON ASSEMBLY CHILDREN AND FAMILES COMMITTEE

Chris Tague 

Helene Weinstein 
Stefani Zinerman 

C)  10 Assemblymembers still in office who co-sponsored the CMV testing bill that passed in 2018, Assembly Bill A587C:

Steve Englebright

District 4
EngleS@nyassembly.gov
149 Main Street
East Setauket, NY 11733
631-751-3094
LOB 621
Albany, NY 12248
518-455-4804

Aileen M. Gunther
District 100
GuntheA@nyassembly.gov
18 Anawana Lake Road
Monticello, NY 12701
845-794-5807
Middletown City Hall, 3rd floor
16 James Street
Middletown, NY 10940
845-342-9304
LOB 826
Albany, NY 12248
518-455-5355

Alicia Hyndman
District 29
hyndmana@nyassembly.gov
232-06A Merrick Blvd.
Springfield Gardens, NY 11413
718-723-5412
LOB 702
Albany, NY 12248
518-455-4451

Donna A. Lupardo [she also co-sponsored June CMV Awareness Month]
District 123
LupardoD@nyassembly.gov
State Office Building, 17th Floor
44 Hawley St.
Binghamton, NY 13901
607-723-9047
LOB 828
Albany, NY 12248
518-455-5431
Fax: 518-455-5693

David G. McDonough
District 14
mcdonoughd@nyassembly.gov
404 Bedford Ave.
Bellmore, NY 11710
516-409-2070
Fax: 516-409-2073
LOB 443
Albany, NY 12248
518-455-4633
Fax: 518-455-5559

Catherine Nolan
District 37
NolanC@nyassembly.gov
47-40 21 Street Room 810
Long Island City, NY 11101
718-784-3194
Fax: 718-472-0648
LOB 739
Albany, NY 12248
518-455-4851

Angelo Santabarbara
District 111
SantabarbaraA@nyassembly.gov
2550 Riverfront Center
Amsterdam, NY 12010
518-843-0227
433 State Street
Schenectady, NY 12305
518-382-2941
LOB 654
Albany, NY 12248
518-455-5197

Jo Anne Simon
District 52
simonj@nyassembly.gov
341 Smith Street
Brooklyn, NY 11231
718-246-4889
LOB 435
Albany, NY 12248
518-455-5426

Phil Steck
District 110
SteckP@nyassembly.gov
1609 Union Street
Schenectady, NY 12309
518-377-0902
Fax: 518-377-0458
LOB 627
Albany, NY 12248
518-455-5931
Fax: 518-455-5840

Kenneth Zebrowski
District 96
ZebrowskiK@nyassembly.gov
67 North Main Street
New City, NY 10956
845-634-9791
LOB 625
Albany, NY 12248
518-455-5735  

MEDIA COVERAGE OF CMV

2021 

1.  Spectrum News, "Couple pushes for law in memory of their daughter" Jessica Houghtaling, Jul. 01, 2021. Includes interview with Dr. Sunil Sood and is airing across the Capital region, Hudson Valley, Rochester, Buffalo, North Country and Southern Tier).
2. Music video of child placing CMV rocks at the Trail of Hope in Lyons, "Had I Known, Lyrics and Music by Debra Lynn Alt," produced by Mark De Cracker, Jun 8, 2021
   
3. Finger Lakes Times, "Trail of Hope celebration in Lyons marks CMV Month in New York", Steve Buchiere (Jun 11, 2021). 
4. Finger Lakes Times: "MAKING A DIFFERENCE: Couple brings awareness to threat to infant health: CMV", Steve Buchiere (June 4, 2021).
5. The Citizen:  "NY Senate passes bill, named for CNY couple's daughter, to boost CMV awareness",  Robert Harding (June 2, 2121). 
6. Syracuse Woman magazine, "Fighting CMV One Step at a Time (p.28)", Emma Vallelunga (May 2021) (p.29 image of Stop CMV hand, rock and shirt)
7. The Citizen: "'Elizabeth's law,' named for CNY couple's daughter, would boost CMV awareness", Robert Harding (May 4,2021)
8. The Citizen, "Challenge for Change: Walking across NY to raise awareness of CMV", David Wilcox (Mar 31, 2021)

2016 

1. New York Times, "CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed" By Catherine Saint Louis (Oct. 24, 2016).
2. NYMetroParents, “Could CMV Be the Cause of My Baby's Failed Hearing Test?” : “This is a very common virus, but it remains somewhat under the radar. A woman can unknowingly acquire it during pregnancy, and pass the infection to the unborn baby," states 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.  "CMV is spread from person to person through body fluids. Day care workers, nurses, mothers of young children, and others who work with young children are at greatest risk of exposure to CMV. Since young children commonly carry CMV, pregnant women and women planning pregnancies should take extra care to avoid urine and saliva from young children” (March 21, 2016).

OTHER FEATURING CMV LAW PASSED IN CONNTECTICUT/LISA SAUNDERS

1. News 8, “Mystic mother raises awareness of CMV, a risk for pregnant women and their babies”, Sarah Cody (June 13, 2018) 
2. Cornell Alumni Magazine: "In Memory of Elizabeth: Her daughter's death from a preventable disability spurs Lisa Avazian Saunders '82 into action," Alexandra Bond (Sept/Oct 2015).
3. Times Herald Record: What every pregnant woman needs to know, Deborah J. Botti

I was told that it would be good for me to attach my Memo of Support as a pdf. If this helps you create your own memo, here is a link to mine: https://docs.google.com/document/d/15tObX8Vkj-fVUY56Tv-cOJbtSftLw2UK8FgsmkTViZM/edit?usp=sharing

You are welcome to simply forward my memo with a note that you agree, or cut and paste parts that seem good for your own story. I have also put the links/words to my memo below my signature. 

Thanks!

Lisa Saunders

Author of history and children's books

Website: AuthorLisaSaunders.com

Facebook.com/NYStopCMV

Music Video "Had I known (about CMV)"

Memo of Support 

"Elizabeth’s Law”

A7560 (Rosenthal. L.) / S6287A (Mannion, J.)

Named in memory of our daughter, Elizabeth Saunders, the bill requires education to prevent the #1 birth defects virus.

TITLE: AN ACT to amend the social services law, in relation to requiring child care providers to be trained on the impacts and dangers of congenital cytomegalovirus infection and the treatments and methods of prevention of cytomegalovirus infection; and to amend the public health law, in relation to requiring certain physicians to distribute informational materials concerning cytomegalovirus.

PROBLEM: Congenital Cytomegalovirus (cCMV) is acquired in utero and can result in serious birth defects in the baby. cCMV is the most common congenital (present from birth) infection in the U.S. About 1 in every 200 babies is born with a cCMV infection. Of these babies, around 1 in 5 will have long-term health problemsi such as hearing and vision loss, microcephaly (small head), developmental and motor delays, and seizures (CDC).ii

• In New York, every year an estimated 222 babies are born permanently disabled by cCMV iii

• “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...(American College of Obstetricians and Gynecologists (ACOG)).

• “Pregnant women with young children at home also are at risk and should take these steps”(ACOG)).iv

• “Nearly half of women have been infected with CMV before their first pregnancy. Of women who have never had a CMV infection, it is estimated that 1 to 4% of them will be infected during pregnancy.”v

• OSHA recognizes CMV as a “hazard” for childcare workersvi and the American Academy of Pediatrics (AAP) states, “With regard to child-to-staff transmission, studies have shown increased rates of infection with CMV in caregivers/teachers ranging from 8% to 20%.”vii

• Women who have young children in group child care are at an increased risk for CMV.viii 

• Racial and ethnic minorities are at higher risk for CMV.ix

• “The risk of CMV infection in hospital workers is not greater than it is in others in the community and is probably low because of careful hand washing practices. In daycare centers, where hand washing practices may not be as good, there may be a greater risk of infection.”x

• cCMV is largely preventable, but 91% of women do not know about the disease or prevention.xi 

SOLUTION: “You may be able to lessen your risk of getting CMV by reducing contact with saliva and urine from babies and young children. The saliva and urine of children with CMV have high amounts of the virus. You can avoid getting a child’s saliva in your mouth by, for example, not sharing food, utensils, or cups with a child. Also, you should wash your hands after changing diapers.”xii

SUPPORT A7560 / S6287A, “Elizabeth’s Law” 

Dr. Howard A. Zuckers, New York State Commissioner of Health, stated, "it is imperative that we give women of reproductive age the information they need to make informed decisions for themselves and their families.”xiii To learn more, contact me, Lisa Saunders of NY Stop CMV, at LisaSaunders42@gmail.com.

Supporters of cCMV prevention: CDC, OSHA, AAP, ACOG and NY Commissioner of Health. The NY Senate/Assembly proclaimed June 2021 Cytomegalovirus Awareness Month. Utah and Idaho have cCMV legislation accompanied by ongoing funding. The NY Senate passed “Elizabeth’s Law” in 2021.

 REFERENCES (see next page--includes media coverage of our efforts.)

 REFERENCES

i https://www.cdc.gov/cmv/awareness-month.html

ii https://www.cdc.gov/cmv/congenital-infection.html

iii In 2019, 221,539 babies were born in NY, with an estimated 1,108 born with cCMV. Using CDC’s averages, 222 of those babies were born permanently disabled from cCMV.

iv https://www.acog.org/womens-health/faqs/reducing-risks-of-birth-defects

v https://www.cdc.gov/cmv/clinical/overview.html

vi https://www.osha.gov/cytomegalovirus/hazards

vii https://nrckids.org/CFOC/Database/7.7.1.1

viii https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3046747/

ix https://pubmed.ncbi.nlm.nih.gov/29784513/

x https://www.health.ny.gov/diseases/communicable/cytomegalovirus/fact_sheet.htm

xi https://digitalcommons.usu.edu/jehdi/vol1/iss2/6/

xii https://www.cdc.gov/cmv/fact-sheets/parents-pregnant-women.html

xiii https://health.ny.gov/commissioner/letters/docs/2018-08.pdf

New York Media Coverage

1. Spectrum News, "Couple pushes for law in memory of their daughter" Jessica Houghtaling, Jul. 01, 2021. Includes interview with Dr. Sunil Sood.

2. Finger Lakes Times, "Trail of Hope celebration in Lyons marks CMV Month in New York", Steve Buchiere (Jun 11, 2021).

3. Finger Lakes Times: "MAKING A DIFFERENCE: Couple brings awareness to threat to infant health: CMV", Steve Buchiere (June 4, 2021).

4. The Citizen: "NY Senate passes bill, named for CNY couple's daughter, to boost CMV awareness", Robert Harding (June 2, 2121).

5. Syracuse Woman magazine, "Fighting CMV One Step at a Time (p.28)", Emma Vallelunga (May 2021) (p.29 image of Stop CMV hand, rock and shirt)

6. The Citizen: "'Elizabeth's law,' named for CNY couple's daughter, would boost CMV awareness", Robert Harding (May 4,2021)

7. The Citizen, "Challenge for Change: Walking across NY to raise awareness of CMV", David Wilcox (Mar 31, 2021)

8. Cornell Alumni Magazine: "In Memory of Elizabeth: Her daughter's death from a preventable disability spurs Lisa Avazian Saunders '82 into action," Alexandra Bond (Sept/Oct 2015).

9. Times Herald Record: What every pregnant woman needs to know, Deborah J. Botti