Saturday, March 7, 2020

Ask your state to educate teachers/caregivers about CMV, the #1 birth defects virus, so they can protect their pregnancies


I'm Lisa Saunders is the mother of a Elizabeth born severely disabled by congenital cytomegalovirus (CMV) in 1989. At the time of my pregnancy, I was unaware of CMV even though I was at high risk for contracting the disease because I worked with toddlers, the age group most likely to be excreting the disease. I was a child care provider, a church nursery volunteer and the mother of a toddler. CMV was never mentioned in my state's childcare licensing training. As of this writing, March 2020, in most states, caregivers and teachers still have never heard of their occupational hazard for CMV. I have learned that most agencies are so busy complying with state mandated protocols that they won't tackle educating their workers unless it's the law. 

According to the American Academy of Pediatrics (AAP), "With regard to [CMV] child-to-staff transmission, studies have shown increased rates of infection with CMV in caregivers/teachers ranging from 8% to 20%... Meticulous hand hygiene can reduce the rates of infection by preventing CMV transmission. With current knowledge on the risk of CMV infection in child care staff members and the potential consequences of gestational CMV infection, child care staff members should receive counseling in regard to the risks of acquiring CMV from their primary health care provider. However, it is also important for the child care center director to inform infant caregivers/teachers of the increased risk of exposure to CMV during pregnancy..." 


A child care study showed that most workers didn't know about CMV and many admitted to using diaper wipes to clean surfaces and clean hands after handling saliva or urine 
(Thackeray and Magnusson, 2016). They must be educated that diaper wipes do not effectively remove CMV from hands. 


According to the AAP, children with known CMV should not be excluded from group care; "CMV excretion is so prevalent that attempts at isolation or segregation of children who excrete CMV are impractical and inappropriate" (Red Book, 2015, pg 145.) However, in other countries such as Australia and Germany, allow pregnant staff to change responsibilities to work with children over the age of two (or three in Germany). 


Since my daughter's death in 2006, I have devoted my spare time to educating women of childbearing age about CMV--especially after waking from a tormenting dream about why I hadn't done more to shout CMV prevention from the rooftops. Shortly after my husband and I moved to Connecticut in 2010, I received an email from a grandmother heartbroken that the 18-year-old mother of her grandson born with a small, damaged brain hadn't been educated about CMV when she interned at a child care center. When I visited the family in the hospital, the nurse who cared for her grandson asked me why more wasn't being done to tell women how to reduce their chances of contracting CMV.  She asked me to please do what I could to change that. 


In 2015, I, along with Dr. Brenda Balch,  Connecticut's American Academy of Pediatrics (AAP) Early Hearing Detection and Intervention (EHDI) Chapter Champion, was instrumental in helping Connecticut become the second state in the U.S. to pass a law requiring CMV testing for infants who fail their mandatory hearing screen. This testing means earlier interventions are available for those who show a hearing loss at birth. 


The Connecticut CMV law has been responsible for getting CMV prevention posted on the CT Department of Public Health website, but prevention education  for all woman of childbearing age is still not happening. Although the CT Office of Early Childhood now as CMV prevention on its website, child care providers and early childhood educators are still largely unaware of their occupational hazard for CMV. 


I'm surprised that most women who work with children are not aware of CMV, especially since that can lead to lawsuits against an institution. Although the only lawsuit against a child care center that I know of in the U.S. settled out of court (so there is no public record of it), in New South Wales, “a childcare worker and her severely disabled son were awarded $4.65 million. A Court of Appeal ruled that the child's disabilities resulted from the woman being infected with cytomegalovirus (CMV) at work (Hughes v SDN Children's services 2002)” (Queensland Government, Australia). The Australian lawyers, Meridian Lawyers, stated: "The allegations of negligence were that Sydney Day Nursery breached its duty of care to Linda ...by failing to warn her of the risks of CMV in circumstances where the centre knew or ought to have known of the risks of CMV to pregnant women..."


In 2016, I reached out to OSHA about CMV in the workplace and asked if they could look into it. In May 2019, OSHA announced: "A common virus, Cytomegalovirus (CMV) affects thousands of workers in childcare centers and healthcare facilities. These workers are at the greatest risk of exposure because the virus is often spread through saliva and other body fluids of young children. OSHA's new webpage on CMV [https://www.osha.gov/SLTC/cmv/], explains how to minimize health risks associated with workers' exposure to this virus" ("QuickTakes," OSHA's newsletter on workplace safety and health). 


In 2017, I contacted Cornell University's Industrial Labor Relations college and asked if they could help educate those who work with children about their occupational risk. They put me in touch with Nellie Brown, MS, CIH, Director of Workplace Health and Safety Programs, Lead Programs Manager, Certified Industrial Hygienist, The Worker Institute, Buffalo, NY 14203. ILR School, Cornell University. www.ilr.cornell.edu.

In 2019, Nellie presented CMV information at an American Industrial Hygiene Association conference where I was presenting (Connecticut River Valley, Oct. 3, 2019). Cornell's Digital Commons just published a pdf of her PowerPoint presentation. See Brown, Nellie 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, Workplace Health and Safety Program.  https://digitalcommons.ilr.cornell.edu/conference/45/  (She gives permission for others to present it. Just email her at njb7@cornell.edu).

In 2019, using the song,"Had I Known (about CMV)," by Debra Lynn Alt, I created a public service announcement (PSA) on Congenital CMV: Music Video--"Had I Known (about CMV)". The video is geared to those who care for young children. YouTube version at https://youtu.be/1WoGjfieRhY. You are welcome to share this on TV, online, in presentations, etc. If you want to use the song only, click on https://drive.google.com/drive/my-drive

In 2019, UCONN created this CMV Training Module: Training for childcare workers with follow up quiz and answers.



In 2020, Dr. Brenda Balch,  Connecticut's American Academy of Pediatrics (AAP) Early Hearing Detection and Intervention (EHDI) Chapter Champion, published the following articl: "An Often Unknown Cause of Hearing Loss in Children: Understanding and Preventing CMV in the Educational Setting" (Late Feb 2020). Supporting Success for Children with Hearing Loss. https://successforkidswithhearingloss.com/wp-content/uploads/2020/02/CMV-An-Often-Unknown-Cause-of-Hearing-Loss.pdf. Retrieved from: https://successforkidswithhearingloss.com/2020/02/21/an-often-unknown-cause-of-hearing-loss-in-children/?fbclid=IwAR3FGjkbMhm3cwb6XaJ84tBMTj0UUyscj5FQv_STY19w2mns06jV6QMzgL0

Want to help your state's teachers/caregivers?

TO DO:

Contact your state’s childcare care licensing department, department of health, department of labor, and local universities with occupational medicine and public health programs. CMV is a bloodborne pathogen. Contact your state's health and child care licensing commissioner. Ask them to follow the recommendations made by the American Academy of Pediatrics and OSHA or work at getting your state to pass a law requiring CMV education. 


If the policy makers need incentive to spend money on prevention education, consider this:

Annual cost of caring for children disabled cCMV by state: 
In 2016, 3,945,875 babies were born in U.S. with .1% disabled by cCMV = 3,945 babies.  In Connecticut in 2016, the annual cost of caring for children disabled by cCMV can be calculated at 36,015 births x .1% cCMV disabled = 36 babies X $300,000/year = $10,800,000 or over 10 million annually. 

BARRIERS TO GETTING LEGISLATION PASSED

·        CMV is unknown: Since legislators have never heard of CMV, they think if it was a problem, OB/GYNs would say so. 
·        Cost: What is the cost to providing CMV education (CT estimated it to be $40,000 per year). 
·        Some doctors and Early Education Teachers/Child Care Leaders may not support bill: Some medical professionals oppose public policy and legislation mandating medical practice. The daycare industry may worry about frightening  away their workers.
·        Extra work: Some state departments and programs don’t want the extra work of providing CMV prevention education and training—especially if there is no funding for it. 
·        Finding legislators to introduce the bill: It is hard to introduce a bill on a problem very few have heard of. Legislators worry about getting enough support such as people testifying at the hearing, writing letters, calling legislators and visiting their offices. Many legislators don’t understand why just telling their their state to educate women doesn’t produce a real, lasting change in awareness. 

SOLUTIONS

Streamline educating legislators: Create a one-page CMV fact sheet  (click here for example) telling them what they quickly need to know to convince others. Provide a pocket folder that includes back-up documents such as the bills passed in other states (find them at www.nationalcmv.org/cmv-research/advocacy), the new CMV flyers from CDC:
 (Spanish/English), flyers/posters from the National CMV Foundation (so they see educational materials already exist), relevant newspaper articles and scientific studies.

Attract Media Attention: Give yourselves a name such as [your state name] CMV Advocacy Project. Create a Facebook page with your group name on it and complete the “About” section. Sent media releases to TV/radio/newspapers quoting doctors and parents. Send resulting links of coverage to all the legislators—you never know who will really care.

Get your state’s (or county’s) health department behind you: You may get resistance because it means work for them if it passes, but remind them that staff such as child care providers are at increased risk for CMV. Under the Occupational Safety and Health Act of 1970 (OSH Act), workers have the right to “receive information and training about hazards.”

Stress the Benefits: You may be apposing medical professional groups so you must articulate the benefits to legislators. According to Brenda K. Balch, MD, Connecticut's American Academy of Pediatrics (AAP) Early Hearing Detection and Intervention (EHDI) Chapter Champion, our CMV “testing protocol allows for a more timely diagnosis of the etiology of the infants hearing loss and is less expensive than imaging and genetic testing.” A CMV testing law will also “increase healthcare workers’ and parents’ awareness of CMV research and possible intervention strategies for congenital CMV.”

Find an advisor to help guide you:  You may have connections to an organization eager and Corporate Affairs willing to help you.

Please see below my signature for ideas on who to approach in your state to ensure your caregivers/teachers know about CMV. If you live in CT:
The Connecticut Department of Public Health (CT DPH) website has flyers and information: http://portal.ct.gov/DPH/Family-Health/EHDI/CMV. The National CMV Foundation allowed the CT DPH to embed their logo in their “Are You Pregnant” National CMV Awareness Flyer.
You may wish to distribute the above flyer with this letter from Dr. Brenda Balch on the back:
https://drive.google.com/file/d/1xjQKI8SE1awlHPdD-k27ZwG62W7dnlv3/view?usp=sharing

Letters to medical community:


CT Department of Public Health (DPH) About CMV For Obstetric Health Care Providers and About CMV Testing for Obstetric Health Care Providers.


CT Department of Public Health (DPH) and American Academy of Pediatrics (AAP) About CMV for Pediatric Care Providers


Thanks so much for your time! 


Lisa Saunders

CMV Education Advocate
Baldwinsville, NY (formerly of Mystic, CT)
LisaSaunders42@gmail.com




CMV Training Tools/Resources


1.   Centers for Disease Control and Prevention (CDC) CMV info available in English and Spanish:
"Congenital CMV Facts for Pregnant Women and Parents"

2.  "Staff Education and Policies on Cytomegalovirus (CMV)," American Academy of Pediatrics, American Public Health Association, National Resource Center for Health and Safety in Child Care and Early Education. (Revised 2017). National Health and Safety Performance Standards: Guidelines for Early Care and Education Programs. Retrieved from Caring for Our Children: http://nrckids.org/CFOC/Database/7.7.1.1. You can download that page as a pdf by clicking on the upper right side of the webpage: "Save as PDF" or click here: https://drive.google.com/file/d/1n7kI3hnsaZvYV-GYtrPMYQjmA-ZhP43w/view?usp=sharing
See also  American Academy of Pediatric's Red Book: 2015 Report of the Committee on Infectious Diseases pgs 144-145.)

3. CMV prevention video, "Why Moms-to-be Should Care About CMV" (3:37-minutes): https://youtu.be/OM7WKS7J2mA (content by research nurse, Anna Bartholomew of central Ohio; video by Joel Copeland, Chief Operating Officer of KMI Learning, pro bono, Youtube,  2015).


4. National CMV Foundation features several types of CMV flyers for downloading and hanging on your wall such as: https://www.nationalcmv.org/NCMVF/media/ncmvf/download-content/CMV_Awareness-Flyer_11x17.pdf?ext=.pdf

5. Utah created English/Spanish brochures specifically for childcare providers:
6. UCONN Provides CMV Training Video and Quiz
The University of Connecticut recently came out with a CMV training module for child care providers.  The link to the video and quiz:  https://aural.rehab.uconn.edu/cmv-training-module/  

6. The Idaho CMV Advocacy Project (they got a CMV law passed) links to these training resources:

Are you wanting to inform someone about CMV but don’t know how? Maybe your child’s teacher? Your daycare? Your nurses? Each of these links takes you to some great, shareable videos!
  1. The perfect 1 minute overview.
  2. CMV Parent Stories
  3. Training for childcare workers with follow up quiz
  4.  CMVirus Pledge (RUSP support)
  5. Training for Alabama Pediatricians and other Healthcare Providers- Congenital CMV Update: Diagnosis and Management
For any updates from them: https://idahocmv.com/videos-tools-for-education/?fbclid=IwAR0fnbBXrQX-xVFYr46AoZbnK7UkXaKPVpB1j2oFbMoq51a2i3pgDFZdEhY

7. Pdf of  PowerPoint presentation: Brown, Nellie 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, Workplace Health and Safety Program.  https://digitalcommons.ilr.cornell.edu/conference/45/  (She gives permission for others to present it. Just email her at njb7@cornell.edu).

8. Connecticut Department of Public Health (CT DPH) website has flyers and information: http://portal.ct.gov/DPH/Family-Health/EHDI/CMV. The National CMV Foundation allowed the CT DPH to embed their logo in their “Are You Pregnant” National CMV Awareness Flyer.
You may wish to distribute the above flyer with this letter from Dr. Brenda Balch on the back:
https://drive.google.com/file/d/1xjQKI8SE1awlHPdD-k27ZwG62W7dnlv3/view?usp=sharing

Letters to medical community:

CT Department of Public Health (DPH) About CMV For Obstetric Health Care Providers and About CMV Testing for Obstetric Health Care Providers.

CT Department of Public Health (DPH) and American Academy of Pediatrics (AAP) About CMV for Pediatric Care Providers


Click here to view the National Center for Hearing Assessment and Management (NCHAM) pre-recorded Congenital CMV 101: From Prevention to Treatment webinar or click here for a PDF of the webinar.

For social media, a photo of the flyer will be easier to share. Find the jpeg of “Are You Pregnant” by the National CMV Foundation at:
https://drive.google.com/file/d/1AVG9RXGVsbBTwOImOb18NWDdG3rHbHbm/view?usp=sharing

If you need a pdf of the above flyer with information relevant for childcare providers from CT DPH, then: https://drive.google.com/file/d/0B9Klfxar2CmjemlkcElQQkZfQWs/view)

9. Song for mothers who learned too late about protecting their unborn child from congenital CMV--"Had I Known (about CMV): by Debra Lynn Althttps://drive.google.com/file/d/0B9Klfxar2CmjRGN0cnBNQXRDdExMQWJOVHVZRGR1aWFJX0lJ/view

Using the song,"Had I Known (about CMV)," I created a public service announcement (PSA) on Congenital CMV: Music Video--"Had I Known (about CMV)". The video is geared to those who care for young children. YouTube version at https://youtu.be/1WoGjfieRhY. You are welcome to share this on TV, online, in presentations, etc.

10. Article, "The Danger of Spreading CMV: How We Can Protect Our Children" by Lisa Saunders published by ChildCare Aware of America (June 2017).

11. Article, “Help Childcare Providers Fight CMV” by Lisa Saunders published by National CMV Foundation (March 5, 2018)

13. Daycare.com: Cytomegalovirus webpage:  https://www.daycare.com/fastfacts/illness/cytomegalovirus.html

Other ideas:

Potential Cost of Not Warning Child Care Providers about CMV
In New South Wales, “a childcare worker and her severely disabled son were awarded $4.65 million. A Court of Appeal ruled that the child's disabilities resulted from the woman being infected with cytomegalovirus (CMV) at work (Hughes v SDN Children's services 2002)” (Queensland Government, Australia). Meridian Lawyers stated: "The allegations of negligence were that Sydney Day Nursery breached its duty of care to Linda ...by failing to warn her of the risks of CMV in circumstances where the centre knew or ought to have known of the risks of CMV to pregnant women..."

Actions to consider:

1) Childcare providers are typically trained in first aid, CPR, and other topics. CMV prevention should be included in training about preventing infectious diseases. NAEYC (National Association for the Education of Young Children) includes "a. steps to reduce occupational hazards such as infectious diseases (e.g., exposure of pregnant staff to CMV…” 

2) Give each childcare employee/volunteer a CMV brochure (see Utah's brochure for childcare providers). 

3) CMV prevention added to a childcare center’s handbook. See Staff Education and Policies on Cytomegalovirus(Caring for Our Children, AAP, et al.): "Female employees of childbearing age should be referred to their primary health care provider or to the health department authority for counseling about their risk of CMV infection. This counseling may include testing for serum antibodies to CMV to determine the employee’s immunity against CMV infection...it is also important for the child care center director to inform infant caregivers/teachers of the increased risk of exposure to CMV during pregnancy.” Print "Staff Education and Policies on CMV" by clicking "Save as PDF" at: nrckids.org/CFOC/Database/7.7.1.1 

4) CMV information added to a New Staff Orientation Form. The form should be signed to show the childcare provider read and understood they should consult their healthcare provider about their risk for CMV. See sample wording in Model Child Care Health Policies, which has a sample 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)” (American Academy of Pediatrics, Pennsylvania Chapter, Aronson, SS, ed., 2014, p. 116). 

5) The Child Care and Development Block Grant Act of 2014 has created regulatory changes. The Administration for Children and Families published Caring for our Children Basics (based on Caring for Our Children) in 2015 to “align basic health and safety efforts across all early childhood settings." In the section, “Prevention of Exposure to Blood and Body Fluids,” it states: “Caregivers and teachers are required to be educated regarding Standard Precautions [developed by CDC] before beginning to work in the program and annually thereafter. For center-based care, training should comply with requirements of the Occupational Safety and Health Administration (OSHA).”

6) Hang signs about CMV prevention in child care centers so staff and parents can see them (see CMV resources below--for Connecticut DPH logo in the “Are You Pregnant” poster by the National CMV Foundation, click here). Signs in child care centers are important because mothers of young children in group care are also at increased risk for contracting CMV (Pass et al., 1986) and are unaware of this. "Intervening with child care providers and parents through child care facilities are key opportunities to reduce prevalence of CMV infection and other diseases.” (Thackeray and Magnusson, 2016).

7) Consider the protocol posted on the website in Queensland, Australia. They relocate workers who are pregnant, or “expect to become pregnant, to care for children aged over two to reduce contact with urine and saliva.” See their list of safety measures in “Cytomegalovirus (CMV) in early childhood education and care services,” on the Workplace Health and Safety webpage.

8) Examples of CMV Protocols in Other Countries: 
In Queensland, Australia, suggested control measures include: "relocating workers who are pregnant, or who expect to become pregnant, to care for children aged over two to reduce contact with urine and saliva" (Queensland Government). 

In Germany, to protect day care workers from primary CMV infection, their “CMV serostatus must be checked at the beginning of their pregnancy.” If the worker “is seronegative, she is excluded from professional activities with children under the age of three years” (Stranzinger et al., 2016).
Websites:

For more information on Cytomegalovirus (CMV) and Congenital CMV Infections, visit the Centers for Disease Control and Prevention at https://www.cdc.gov/cmv or the National CMV Foundation at https://www.nationalcmv.org
         Handwashing: Centers for Disease Control and Prevention (CDC) has a video and posters on handwashing procedures and what to do if soap and water are not available: https://www.cdc.gov/handwashing/index.html