Tuesday, January 2, 2018

Ask your legislator to file/sponsor a CMV awareness bill!

The following letter is geared to CT legislators. You can just replace some of my CT info with your state's webpages. To see where your state stands: https://www.nationalcmv.org/cmv-research/legislation.aspx

Dear [Legislator]:

As you may be aware, in 2015, Connecticut passed H.B. No. 5525: An Act Concerning Cytomegalovirus (CMV). 

Congenital cytomegalovirus (CMV) is the leading viral cause of birth defects.  According to the New York Times, "CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed." 

Of the four million infants born each year in the U.S., approximately 1% are infected prenatally with CMV (American Academy of Pediatrics [AAP] et al., Caring for Our Children, 2011).  Ten percent of those infants (about 4,000) may have one or multiple abnormalities.

Although I'm thrilled that Connecticut newborns who fail their hearing test will now be tested for CMV, I'm hoping you can do something to ensure prevention education for women of childbearing age, particularly for childcare givers as they are at increased risk for CMV and need to know how to protect their pregnancy. 

CMV is often found in the bodily fluids of otherwise healthy toddlers. Toddlers can spread the disease to other toddlers by mouthing each other’s toys, and to their adult caregivers who may be unaware of how to properly handle bodily fluids such as saliva and nasal secretions. Unfortunately, most women of childbearing age don’t know about CMV, and don’t realize they should avoid kissing toddlers around the mouth or share cups and utensils with them. Most child care providers have never heard of CMV despite recommendations made by the American Academy of Pediatrics that it is "important for the child care center director to inform infant caregivers/teachers of the increased risk of exposure to CMV during pregnancy.”


·        8- 20% of child care providers contract CMV infection  (AAP et al., 2011) versus 1-4% in general population.  

·        44% to 100% of two-year-olds in group daycare are excreting CMV (Pass et al., 1986).

·        Only 18.5% of licensed “in-home” daycare providers surveyed have heard of CMV and  “Providers do not know how to appropriately sanitize surfaces to reduce spread of disease.” Many use diaper wipes to clean surfaces, which do not sanitize (Thackeray et al., 2016). 

Although CMV did no harm to the toddlers in my  in-home licensed childcare center, my daughter  Elizabeth was born severely disabled by congenital CMV. After her birth, I was then given information from the Centers for Disease Control and Prevention (CDC) stating, "People who care for or work closely with young children may be at greater risk of CMV infection than other people because CMV infection is common among young children..." This information came too late to spare Elizabeth. Nowhere in my daycare licensing training was CMV mentioned. CMV prevention was not discussed in my prenatal doctor visits. 

Because the prevention education part of the Connecticut bill didn't pass in 2015 (it was estimated to cost CT $40,000/year), is there anything you can do to ensure childcare providers learn about CMV? Can you file a CMV prevention education bill with the CT Public Health Committee?

In 2015, Connecticut’s annual cost of caring for children disabled by cCMV can be calculated at 35,746 births x .001 cCMV disabled = 36 babies X $300,000/year (Modlin, Arvin et al., 2004) = $10,800,000 or nearly $11 million annually. 

The following is the prevention education wording that didn't pass in the Connecticut CMV bill, but other states have passed it to include educating childcare providers about CMV: 

Sec. 2. (NEW) (Effective July 1, 2014) (a) The Commissioner of Public Health shall establish a public education program to inform pregnant women and women who may become pregnant concerning: (1) The incidence of cytomegalovirus; (2) transmission of cytomegalovirus to pregnant women and women who may become pregnant; (3) birth defects caused by congenital cytomegalovirus; (4) methods of diagnosing congenital cytomegalovirus; (5) measures to prevent transmission of cytomegalovirus; and (6) methods of treating congenital cytomegalovirus. The commissioner shall make such information available to child day care centers and group day care homes, licensed in accordance with section 19a-80 of the general statutes, licensed health care providers who provide services to pregnant women and infants, school nurses and other persons providing health education in schools, and other organizations providing services to children in a group setting.

Just FYI, I thought you might be interested to know what is being done about child care workers in a few other countries: 
  • Queensland, Australia: in addition to infection control methods, they practice: “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.”
  • Germany: "Based on the German Maternity Protection Law (Mutterschutzgesetz)… to protect DCWs [day care workers] from primary infection, their CMV serostatus must be checked at the beginning of their pregnancy. When the DCW is seronegative, she is excluded from professional activities with children under the age of three years in order to prevent feto- or embryopathy in her offspring." (See: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4844919/).

  1. CMV prevention education added to the licensing training. Childcare providers are typically trained in first aid, CPR, and other topics. CMV prevention should be included in training about preventing infectious diseases.  (For sample training ideas, contact: Angela A. Crowley, PhD, APRN, PNP-BC, FAAN, Professor Emerita, Yale University School of Nursing, angela.crowley@yale.edu. She said The National Training Institute (NTI) for Child Care Health Consultant modules (2012) includes information on CMV and other infectious diseases in child care. You can find a link to the NTI modules at the Yale website: ctmedadmin.nursing.yale.edu. I found:  https://www.ncemch.org/child-care-health-consultants/Part1/1-10_m_infectious_disease.pdf
  2. CMV prevention brochures (see Utah's brochure for childcare providers).
  3. CMV prevention added to a childcare center’s handbook (see information provided by Daycare.com).
  4. CMV information added to Connecticut's New Staff Orientation Sample Form (pdf)
  5. CMV Prevention discussed at daycare center’s parent orientation.
  6. Signs about CMV prevention hanging in day care centers so staff and parents can see them (downloadable flyer at: CT Dept Public Health CMV flyer/web content.
  7. Currently, day care centers in Connecticut are inspected for: Items Posted: Conspicuous/Accessible  8.  License  9.  Current Fire Marshal Certificate   Date:____________  10. DPH Complaint Procedure  11. Food Service Certificate    Date:____________  12. Menus  13. Emergency Plans  14. No Smoking Signs  15. Radon Test     Date:_________ Results:___________ Staffing 19a-79-4a

As a result of the CMV testing bill passing in 2015, the Connecticut Department of Public Health now provides the following information and flyers about Congenital CMV on its website:

1.     Flyers from the Connecticut Department of Public Health website,  Congenital Cytomegalovirus (CMV): http://www.ct.gov/dph/cwp/view.asp?a=3138&q=527824
2.     National CMV Foundation flyer: Are You Pregnant? (2017). Retrieved from Connecticut Department of Public Health: http://www.ct.gov/dph/lib/dph/ehdi/ncmvf_awareness_flyer_ct_dph.pdf
3.     About Cytomegalovirus (CMV) FOR OBSTETRIC HEALTH CARE PROVIDERS. (2017). Retrieved from Connecticut Department of Public Health: http://www.ct.gov/dph/lib/dph/ehdi/about_cmv_obs.pdf
4.     About Cytomegalovirus (CMV): TESTING FOR OBSTETRIC HEALTH CARE PROVIDERS. (2017). Retrieved from Connecticut Department of Public Health: http://www.ct.gov/dph/lib/dph/ehdi/cmv_testing_info_obs.pdf

I have learned through years of trying to raise CMV awareness that despite successfully interesting the media in CMV, to ensure a real change in CMV awareness takes changes in public policy.

For more information, click for my One-Page CMV Fact Sheet for Policy Makers, which includes cost estimates of caring for children disabled by congenital CMV ($300,000 per year per child). 

Please let me know if I can meet with you to discuss what can be done about this. 

Lisa Saunders
CMV Awareness Advocate, Parent Rep., Congenital Cytomegalovirus Foundation

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