Thursday, December 29, 2022

Federal Law: Please help ALL women of childbearing receive information about congenital CMV





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

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


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

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

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

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

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

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

Thank you for your time.


Sincerely,


Lisa Saunders

New York Stop CMV

Baldwinsville, NY 

LisaSaunders42@gmail.com

AuthorLisaSaunders.com

About Lisa's CMV work

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