Wednesday, June 16, 2021

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 was passed by the Senate, but the Assembly was unable to vote on it during the 2021 legislative season because it was not voted out of the Committee on Children and Families in time. 


So, we need to try again for the 2022 season. Please contact your assemblymember (calling AND emailing is most effective). You can find out who your assemblymember is through the link, https://nyassembly.gov/mem/search/ 

Ask your assemblymember to co-sponsor A7560 (see: https://www.nysenate.gov/legislation/bills/2021/a7560). The primary sponsor of the bill is Assemblymember Linda B. Rosenthal and the following are currently co-sponsors: William Magnarelli and Fred Thiele.


A phone call usually takes about 30 seconds since 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 A7560 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. The CDC has a lot of information about this preventable disease at: https://www.cdc.gov/cmv

As you are 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..."

If you need more information, you can call me at ____________ . I would be happy to email additional information to you. 

***

If you have some time and are truly passionate about preventing birth defects, then contact all 25 co-sponsors of the June 2021 Cytomegalovirus Awareness Month proclamation, all 17 members of the Assembly Children and Families Committee, plus the assemblymembers still in office who co-sponsored the CMV testing bill that passed in 2018, Assembly Bill A587C.

Assembly Member Directory: https://assembly.state.ny.us/mem/

Here is the breakout:

A) 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 




B) 17 members of the Assembly Children and Families Committee, 

Chair Andrew Hevesi


Members


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. 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
  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)

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).
COMING SOON
  1. Spectrum News, "TO BE ANNOUNCED", Jessica Houghtaling (June 2021).

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 RecordWhat every pregnant woman needs to know, Deborah J. Botti

Tuesday, May 18, 2021

6/5: CMV Advocates Gather to Raise Awareness. NY Senate passed bill to protect pregnancies of caregivers, moms from #1 birth defects virus, declares June CMV Awareness Month as did Assembly.


The New York Senate just passed  S6287A named "Elizabeth's Law"  in memory of my daughter, and the Assembly proclaimed June 2021 as Cytomegalovirus [CMV] Awareness Month, stating it is "Imperative that women are educated about the virus itself and simple preventative measures, such as not sharing food with toddlers..."  June is also National CMV Awareness Month


In an effort to commemorate June as CMV Awareness Month, Trail Works of Wayne County has offered its "Trail of Hope" to share prevention education on the leading viral cause of birth defects while celebrating National Trails Day on Saturday, June 5, 1pm.

Please see the following press release for more information. 

While you are reading, you may wish to listen to the song,  "Had I Known (about CMV)" by Debra Lynn Alt and/or watch the PSA. I have cced Debra in case you would like to use it (at no cost) during National CMV Awareness Month as was done in 2018 on Connecticut's News 8's: “Mystic mother raises awareness of CMV, a risk for pregnant women and their babies.

Sincerely,

Lisa Saunders

Baldwinsville, NY 13027

LisaSaunders42@gmail.com



IMMEDIATE RELEASE



New York Senate Passes Bill to Mandate Prenatal Education For 

Highly Debilitating Congenital Cytomegalovirus (CMV)

June 2021 proclaimed  Cytomegalovirus  Awareness Month"Imperative that women are educated about the virus itself and simple preventative measures, such as not sharing food with toddlers..."

  New York and National CMV Awareness Month Celebrated on National Trails Day (June 5)  

Albany, New York--The State of New York is raising awareness of the leading viral cause of birth defects, congenital cytomegalovirus (CMV) by declaring June Cytomegalovirus Awareness Month and the Senate just Bill S6287A: SUMMARY: "Establishes 'Elizabeth's law'; requires 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; requires distribution of materials relating to cytomegalovirus by certain physicians." The Assembly still needs to pass their version, A7560. (More on S6287A passed in the Senate: "NY Senate passes bill, named for CNY couple's daughter, to boost CMV awareness," Auburn Citizen, June 2, 2121).
"Elizabeth's Law" was named in memory of Elizabeth Saunders, born to  Lisa Saunders, a former child care provider, and James P. Saunders, now a retired Pfizer scientist currently living in Baldwinsville in upstate New York. Elizabeth was born in 1989 with a severely damaged brain because Lisa caught CMV just before or during pregnancy. Elizabeth died at 16 during a seizure in 2006. In 2018, while the couple was living in Mystic, Connecticut, they helped Connecticut pass a CMV testing law for newborns who fail their hearing test. (Cornell Alumni Magazine: In Memory of Elizabeth: Her daughter's death from a preventable disability spurs Lisa Avazian Saunders '82 into action, 2015).

About CMV: “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)

Saturday, June 5, 1pm:  In an effort to commemorate June as CMV Awareness Month, Trail Works of Wayne County has offered its "Trail of Hope" to share prevention education on the leading viral cause of birth defects while celebrating National Trails Day. Mark De Cracker of Trail Works of Wayne County said, "The public is invited to a special recognition of the benefits of an accessibility trail at the Trail of Hope. After touring the 1/4-mile long trail, which includes a yellow brick road and over 10,000 flowers, join the ceremony at the Ribbon of Hope rock area that will include a public reading of 'Declaration of Women's CMV Rights and Sentiments,' followed by the placement of 222 rocks painted silver to honor the number of newborns disabled by congenital CMV in New York each year." Park in the Lyons Community Center parking lot where you will see the entrance to the Trail of Hope and  gardens." More information: www.trailworks.org or call Mark DeCracker at (315) 573-8170 or see Finger Lakes Times: "
MAKING A DIFFERENCE: Couple brings awareness to threat to infant health: CMV" by STEVE BUCHIERE, June 4, 2021).

Kristin Schuster of Canandaigua plans to attend the Trail of Hope event with her children. Her first child, Autumn, was born with congenital CMV in 2015. Like Lisa, Kristin never heard of CMV or that she was at increased risk for the disease because of her occupation. She said, "I was teaching in a pre-kindergarten inclusion classroom while pregnant with Autumn and was unaware of the dangers of CMV exposure." If a New York family affected by CMV cannot be there on Saturday but would like their child’s name written on a rock, contact Kristin through Lisa's email at  LisaSaunders42@gmail.com with the child's name.

Tabitha Rodenhaus of Buffalo, the mother of a child with congenital CMV, is painting #StopCMV rocks for Lisa to leave along the Erie Canalway Trail to help raise awareness. (More on this effort: The Citizen, "Challenge for Change: Walking across NY to raise awareness of CMV"  and Syracuse Woman magazine, "Fighting CMV One Step at a Time (p.28)".)

CONGENITAL CMV BY THE NUMBERS

Congenital cytomegalovirus (CMV) is the most common infectious cause of birth defects (www.cdc.gov/cmv/awareness-month.html). Approximately 1 in 200 children are born in the U.S. with congenital CMV. Of these babies, around 1 in 5 will have long-term health problems. The impact on the fetus may include deafness, blindness, cerebral palsy, developmental disabilities, seizures and even death (www.cdc.gov/cmv).
  • 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 congenital CMV 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.

###
Learn more: New York Times article, CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed (2016).

Angela Cote of Buffalo appreciates the 2018 New York CMV testing law because it diagnosed 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."

Brandi Hurtubise, also from Buffalo, supports "Elizabeth's Law." Her second child Samantha was born with congenital CMV. Brandi told her story to the National CMV Foundation: "No one told me I shouldn't share drinks or food with my toddler while I was pregnant with [Samantha]. Or that I needed to wash my hands after every single diaper change. That I needed to be cautious of his saliva and urine because it could be carrying a virus that would harm my unborn baby. I didn't know because CMV isn't commonly talked about or educated on; even though it is incredibly common." Lisa Saunders interviewed both Angela and Brandi on PAC-B TV: "Did You Know? - CytoMegaloVirus (CMV) - What Moms Wished They Knew" (May 7, 2021).


MORE INFORMATION:

The Occupational Safety and Health Administration (OSHA) lists CMV as a "Recognized Hazard," yet recent surveys show that most child care providers do not know about CMV and many acknowledge using diaper wipes to clean hands instead of following proper protocols (Thackeray and Magnusson, 2016). Diaper wipes do not effectively remove CMV from hands (Stowell et al., 2014). 
The recent Washington Post article, "How a common, often harmless virus called cytomegalovirus can damage a fetus," confirms how the lack of education on CMV is having a devastating effect on our nation's newborns (May 15, 2021). The article includes the following points: 
1) CMV prevention education is not "part of standard prenatal care” 

2) Toddlers, particularly those in daycare with other toddlers, are bringing CMV home to their pregnant mothers who are not told that "women can catch it from their toddlers when then they share food, cups and utensils, change diapers, and even kiss, especially on the lips."

3) Medical training downplays the dangers of CMV. "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?” states Pediatrician Megan Pesch, M.D., of University of Michigan’s C.S. Mott Children’s Hospital, whose third daughter was born with a progressive hearing loss from congenital CMV.

The New York Times article, "CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussedexposed why women aren't being told about CMV, which, according to Lisa Saunders, is particularly unfair to caregivers/teachers who work professionally with toddlers (Saint Louis, 2016). 

CMV is a viral infection that is common in children. Up to 70% of children ages 1-3 years in group care settings excrete CMV. The New York Health Department website states, "In daycare centers, where hand washing practices may not be as good, there may be a greater risk of infection...Pregnant women working in child care facilities should minimize direct exposure to saliva and avoid kissing babies or young children on the mouth. Hugging is fine and is not a risk factor...." Information is provided in English and Spanish at: https://www.health.ny.gov/diseases/communicable/cytomegalovirus/fact_sheet.htm    


RAISING AWARENESS

  • Utah and Idaho have already passed CMV education laws to protect the pregnancies of child care providers. 
  • 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"(Geographic Disparities in Cytomegalovirus Infection During PregnancyLantos et al, 2017).  
  • Efforts by Lisa Saunders to raise CMV awareness can be found in several articles: 

  1. Finger Lakes Times: "MAKING A DIFFERENCE: Couple brings awareness to threat to infant health: CMV" by STEVE BUCHIERE, (June 4, 2021).
  2. The Citizen:  "NY Senate passes bill, named for CNY couple's daughter, to boost CMV awareness," by Robert Harding (June 2, 2121). 
  3. Syracuse Woman magazine, "Fighting CMV One Step at a Time (p.28)" by Emma Vallelunga (May 2021) (p.29 image of Stop CMV hand, rock and shirt)
  4. The Citizen: "'Elizabeth's law,' named for CNY couple's daughter, would boost CMV awareness" by Robert Harding (May 4,2021)
  5. The Citizen, "Challenge for Change: Walking across NY to raise awareness of CMV," by David Wilcox (Mar 31, 2021)
  6. National CMV Awareness Month: Lisa was featured along with musician, Debra Lynn Alt, and pediatrician Brenda K. Balch, M.D., on News 8's: “Mystic mother raises awareness of CMV, a risk for pregnant women and their babies,”2018) 
  7. Cornell Alumni Magazine: In Memory of Elizabeth: Her daughter's death from a preventable disability spurs Lisa Avazian Saunders '82 into action (2015).
  8. Times Herald RecordWhat every pregnant woman needs to know (2009)

 ***

Need a New York CMV Expert to interview?

Sunil K. Sood, MD, author of “Could CMV Be the Cause of My Baby's Failed Hearing Test?”  (NYMetroParents, 2016).  

Chair of Pediatrics, South Shore University Hospital                                       

Attending Physician, Infectious Diseases, Cohen Children's Medical Center 

Professor, Zucker School of Medicine at Hofstra/Northwell 

ssood@northwell.edu 

301 East Main Street, Bay Shore, NY 11706 

Tel (631) 968-3215 

https://pediatrics.northwell.edu/  

https://southside.northwell.edu/  



Nellie Brown, MS, CIH, Certified Industrial Hygienist, and Director, Workplace Health and Safety Program, Worker Institute, Cornell University – ILR School. njb7@cornell.edu.

1. Publication: Brown, N. J. (2019, November). Occupational exposure to cytomegalovirus (CMV): 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/
This publication/presentation is by Nellie Brown, MS, CIH, Certified Industrial Hygienist, and Director, Workplace Health and Safety Program, Worker Institute, Cornell University – ILR School. The information in this training program was originally developed for The Center for Occupational & Environmental Medicine at the Erie County Medical Center (ECMC), 462 Grider St., Buffalo, NY 14215.  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.


New York families have shared their stories about their children born with congenital CMV. Children with their stories published include: