To find your state representatives, visit your state's website (I live in Conn., so I went to: http://www.cga.ct.gov/asp/menu/CGAFindLeg.asp). This is a sample letter I wrote to my representatives. You are welcome to take excerpts applicable to you.
I live in Mystic, CT.
My daughter Elizabeth was born severely disabled from congenital CMV(cytomegalovirus) because no one told me I shouldn't kiss my own toddler around the mouth (toddlers are the majority of the carriers of CMV) or that I was putting my pregnancy at risk by operating a daycare center in my home for toddlers. A few days ago, The New London Day's Grace magazine did a story on my work to educate the public about CMV prevention in their December 18, 2013 issue.
See: Loss and love: Author raises awareness about preventable birth defect
See: Loss and love: Author raises awareness about preventable birth defect
I am wondering if you would be willing to help me prevent others from suffering as Elizabeth did by sponsoring a CMV education bill similar to what just passed in Utah requiring Utah's Health Department to educate the public on how to prevent this disease (see the information below my signature).
I am the parent representative of the Congenital CMV Foundation, have spoken at international CMV conferences sponsored by the Centers for Disease Control and Prevention, and am the author of the memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV".
You can see Elizabeth and my work to raise awareness on in my short USA 9 News clip.
Congenital CMV causes more disabilities than Down syndrome, but the public is largely unaware how to prevent it. According to the CDC, few women have heard of congenital CMV and more than half of OB/GYNs surveyed admitted they don't warn their patients about it, despite the fact that:
· Every hour, congenital CMV causes one child to become disabled
· Each year, about 30,000 children are born with congenital CMV infection
· About 1 in 750 children is born with or develops permanent disabilities due to CMV
· About 8,000 children each year suffer permanent disabilities caused by CMV
The CDC makes the following recommendations on simple steps you can take to avoid exposure to saliva and urine that might contain CMV:
Wash your hands often with soap and water for 15-20 seconds, especially after
· changing diapers
· feeding a young child
· wiping a young child’s nose or drool
· handling children’s toys
In Addition:
· Do not share food, drinks, or eating utensils used by young children
· Do not put a child’s pacifier in your mouth
· Do not share a toothbrush with a young child
· Avoid contact with saliva when kissing a child
· Clean toys, countertops, and other surfaces that come into contact with children’s urine or saliva
To learn more about congenital CMV from the CDC, visit: cdc.gov/ncbddd/pregnancy_gateway/cmv/index.html
Thank you!
Lisa Saunders
Mystic, CT 06355
DETAILED INFORMATION ABOUT UTAH'S WORK TO PREVENT CMV-RELATED BIRTH DEFECTS:
"Legislation was passed in Utah, and now The Utah Department of Health is required to educate women about the dangers of CMV in pregnancy as well as ways to prevent it." See: http://le.utah.gov/code/TITLE26/htm/26_10_001000.htm
Utah Health Code
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Family Health Services
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Section 10
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Cytomegalovirus (CMV) public education and testing.
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26-10-10. Cytomegalovirus (CMV) public education and testing.
(1) As used in this section "CMV" means cytomegalovirus. (2) The department shall establish and conduct a public education program to inform pregnant women and women who may become pregnant regarding: (a) the incidence of CMV; (b) the transmission of CMV to pregnant women and women who may become pregnant; (c) birth defects caused by congenital CMV; (d) methods of diagnosing congenital CMV; and (e) available preventative measures. (2) The department shall provide the information described in Subsection (2) to: (a) child care programs licensed under Title 26, Chapter 39, Utah Child Care Licensing Act, and their employees; (b) a person described in Subsection 26-39-403(1) (c), (f), (g), (h), (j), or (k); (c) a person serving as a school nurse under Subsection 53A-11-204; (d) a person offering health education in a school district; (e) health care providers offering care to pregnant women and infants; and (f) religious, ecclesiastical, or denominational organizations offering children's programs as a part of worship services. (3) If a newborn infant fails the newborn hearing screening test(s) under Subsection 26-10-6(1), a medical practitioner shall: (a) test the newborn infant for CMV before the newborn is 21 days of age, unless a parent of the newborn infant objects; and (b) provide to the parents of the newborn infant information regarding: (i) birth defects caused by congenital CMV; and (ii) available methods of treatment. (4) The department shall provide to the family and the medical practitioner, if known, information regarding the testing requirements under Subsection (3) when providing results indicating that an infant has failed the newborn hearing screening test(s) under Subsection 26-10-6(1). (5) The department may make rules in accordance with Title 63G, Chapter 3, Utah Administrative Rulemaking Act, as necessary to administer the provisions of this section. Enacted by Chapter 45, 2013 General Session | |
Here is the Utah's Department of Health link that provides the following resources and info:
http://www.health.utah.gov/cshcn/CHSS/CMV.html
Children's Hearing and Speech Services
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Cytomegalovirus (CMV) Public Health Initiative
H.B. 81 (2013 General Session) UCA 26-10-10, whose Chief Sponsor was Representative Ronda Rudd Menlove, will go into effect on July 1, 2013. This law (Cytomegalovirus Public Education and Testing) directs the Utah Department of Health to create a public education program to inform pregnant women and women who may become pregnant about the occurrence of CMV, the transmission of CMV, the birth defects that CMV can cause, methods of diagnosis, and available preventative measures. This law also directs medical practitioners to test infants, who fail two newborn hearing screening tests, for congenital CMV and inform the parents of those infants about the possible birth defects that CMV can cause and the available treatment methods.CMV infection during pregnancy can harm your baby. Cytomegalovirus (sy toe MEG a low vy rus), or CMV, is a common virus that infects people of all ages. Most CMV infections are "silent", meaning the majority of people who are infected with CMV have no signs or symptoms, and there are no harmful effects. However, when CMV o  ccurs during a woman’s pregnancy, the baby can become infected before birth. CMV infection before birth is known as “congenital CMV”. When this happens, the virus gets transmitted to the unborn infant and can potentially damage the brain, eyes and/or inner ears.About 1 of every 5 children born with congenital CMV infection will develop permanent problems, such as hearing loss or developmental disabilities. Congenital CMV is the leading non-genetic cause of childhood hearing loss. CMV Core Facts Congenital CMV and Hearing Loss CMV What Women NEED TO KNOW CMV What Childcare Providers NEED TO KNOW CMV Utah Flyer For Health Care and Newborn Hearing Screening Providers:
Page last updated 07/03/2013 14:57:02
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The legislation that started it all: http://le.utah.gov/~2013/bills/hbillenr/HB0081.pdf
The following link is a story done while the bill was in the process of being passed - and talks about the personal investment of Utah's State Legislator, Representative Ronda Menlove (R-Garland) had in this public health initiative: http://www.ksl.com/?nid=960&sid=23976970
Link to Utah's health website that has some materials created for this initiative: http://www.health.utah.gov/cshcn/CHSS/CMV.html
Page four of newsletter explains the new initiative
Here are links to some of the stories that ran after Utah's media release went out (this initiative began July 1, 2013):
Utah Health Department has done educational pushes/email blasts to: pediatricians, family practice docs, midwives (both certified and lay), OB/GYN, maternal-fetal medicine, neonatologists, child care providers, religious organizations, etc. www.MotherToBabyUT.org.
(1 1/2 min video) recently filmed at Utah's University Health Sciences Center by stopcmv.org. It features Utah families that have been affected by congenital CMV.
For more information:
Stephanie Browning McVicar, Au.D., CCC-A
DOCTOR OF AUDIOLOGY
Specialty Services Program Manager
State EHDI Director
State of Utah Department of Health,
Children with Special Healthcare Needs,
Children's Hearing and Speech Services
(801) 584-8218
smcvicar@utah.gov
Congenital CMV Resources:
Congenital CMV Resources:
Congenital Cytomegalovirus Foundation—The mission of the Congenital CMV Foundation is to prevent birth defects resulting from congenital CMV infection. To contact leading congenital CMV experts, visit: http://www.congenitalcmv.org/foundation.htm
The National Congenital CMV Registry: The National Congenital CMV Disease Registry and Research Program in Houston, Texas, includes members from many disciplines and specialties who conduct clinical and laboratory research studies on congenital CMV disease, including ways to better define and promote awareness of the public health problem, the long term effects, and the treatment and prevention of congenital CMV disease. Visit them at: www.bcm.edu/pedi/infect/cmv
Stop CMV - The CMV Action Network:
The mission of Stop CMV - The CMV Action Network is to prevent and eliminate congenital CMV and to improve the lives of all people affected by congenital CMV. Since 2003, Stop CMV has been fostering congenital CMV awareness via internet and public awareness campaigns. The CMV Action Network is comprised of families, friends and medical professionals personally affected by CMV and committed to public education efforts to prevent future cases of the virus. Visit: StopCMV.org
Brendan B. McGinnis Congenital CMV Foundation—The non-profit organization is dedicated to raising awareness of CMV, to supporting CMV vaccine research, and to supporting families affected by CMV around the world. Visit: cmvfoundation.org
Congenital CMV Blog: http://congenitalcmv.blogspot.com
The author of this blog, Lisa Saunders, maintains a congenital CMV blog and links to parent and media resources. Lisa’s daughter Elizabeth was born severely affected by congenital CMV and died at the age of 16. Lisa is the author of the memoir, Anything But a Dog! The perfect pet for a girl with congenital CMV, which raises funds for congenital CMV research of purchased through http://www.unlimitedpublishing.com/cmv/,and is available for speaking engagements. Contact her for her availability at saundersbooks@aol.com
I most recently spoke at the Infection Control Nurses of CT. If you are interested in hearing how that went, you can contact:
Kristin Magnussen MSN, RN
Supervisor, Communicable Disease Prevention
Emergency Preparedness Planner
MRC Unit Director
p. 860.448.4882 ext. 331
f. 860.448.4885
email: kmagnussen@llhd.org
