If you would like to get a CMV bill passed in your own state, then Utah's CMV bill, H.B. 81 (passed 2013), is the wording that would be great for you to hope for (most of us want even more than that bill called for, but achieving anything passing the first year is difficult). Getting any CMV bill passed is hard work because states don't want to spend money (even though CMV prevention education would save a lot of money in the long run) and agencies don't like being responsible for one more law. You will, however, raise a lot of CMV awareness in your state by doing this work, and that alone is very rewarding and can achieve long-term results.
When I learned Utah got a CMV bill passed in 2013, I decided to try raising a bill in Connecticut because all of my writing and speaking on preventing congenital CMV has had no long-term result--it is still not a routine practice of care to educate women of childbearing age about CMV and how to avoid contracting it. Daycare centers still do not educate their workers and clients about CMV prevention.
To begin a congenital CMV bill in your state, contact your House and Senate representatives and ask them to present a bill similar to Utah's H.B. 81 to the Public Health Committee. Click here to find your state/territory website: Congenital CMV and Your State/Territory Representatives. Your state's website will also have a link showing you how a bill becomes a law.
Just so you understand where I'm coming from, I'm the mother of Elizabeth who struggled with the effects of congenital cytomegalovirus (cCMV) until she died at age 16 in 2006 (Elizabeth's life with her big sister and a homeless old dog is told in my memoir, Anything But a Dog! The perfect pet for a girl with congenital CMV). I ran a licensed daycare center in my home when I was pregnant with Elizabeth, which put me at high risk for contracting the disease. No where in the licensing literature was I warned about CMV and the precautions to take. I am now the parent representative of the Congenital CMV Foundation.
The real CMV bill experts are the Utah folks, and I have put their names and contact information below. They started the Utah CMV Council to help others. I also relied on the advice of several Congenital CMV non-profits, which are listed in my CMV blog and can be found by doing an online search.
I got a lot of initial advice on how to raise a bill from my Town Clerk (the person who issues marriage and dog licenses). She told me who to contact and how best to reach them. I drove to my representative's home and dropped off a copy of Utah's bill, H.B. 81, a letter from me about what I was asking her to do (to present the Utah CMV bill to the Connecticut Public Health Committee), and a copy of my memoir, Anything But a Dog! The perfect pet for a girl with congenital CMV. Just so you understand where I'm coming from, I'm the mother of Elizabeth who struggled with the effects of congenital cytomegalovirus (cCMV) until she died at age 16 in 2006 (Elizabeth's life with her big sister and a homeless old dog is told in my memoir, Anything But a Dog! The perfect pet for a girl with congenital CMV). I ran a licensed daycare center in my home when I was pregnant with Elizabeth, which put me at high risk for contracting the disease. No where in the licensing literature was I warned about CMV and the precautions to take. I am now the parent representative of the Congenital CMV Foundation.
The real CMV bill experts are the Utah folks, and I have put their names and contact information below. They started the Utah CMV Council to help others. I also relied on the advice of several Congenital CMV non-profits, which are listed in my CMV blog and can be found by doing an online search.
Your representative's home contact information is usually public record. After contacting my representative a few more times to remind her of my wish and sending her an article about my CMV work published in a local magazine (it's a good idea to contact the media about what you are trying to do), she then sent a personal letter to the Connecticut Public Health Committee along with a copy of Utah's bill, H.B. 81. (Initially, I didn't understand that at certain times of year, our representatives are not in session and therefore not working on bills--that's why its important to ask them when they plan to send in your request so you can follow up with a reminder.) If you can't get your House or Senate representative to submit the bill, ask others in your state to contact their representatives--someone will be convinced this is needed. The big thing your representative will want to know is if you are committed to seeing the bill through--are you willing to publicly testify at the initial hearing (or send a good friend or family member to do so) and are willing to contact all your friends and family and ask them to contact their representatives to say they want them to support the bill as well?
When possible, it's always best to see representatives in person, but for those caring for a critically ill child, that's almost impossible, so e-mails and calls will do (calls are great if you can do it because they/their staff will be forced deal with you and will start talking about cCMV to each other if they get a lot of calls from you/your friends/family). You will need a champion for this cause in both your House and Senate, especially their Chief of Staff.
Gather a team of people in your state--parents with children born with congenital CMV; those in the medical community who understand the disease; organizations such the Academy of Pediatrics (AAP) or American Medical Association (AMA) because the state chapters may have access to professional lobbying; your state's American Academy of Pediatrics Early Hearing Detection & Intervention Chapter Champion; the March of Dimes (local chapter); the American Hospital Association; local non profits, national cCMV experts willing to be contacted, those associated with congenital CMV non-profit groups. Medical insurance companies, pharmaceutical companies working on a CMV vaccine, soap and hand sanitizer manufactures, and universities doing CMV research may also be available to help you--they need the public to have heard of congenital CMV in order to further their mission.
The following are the type of documents you want to give your legislators and/or media:
Chart of cCMV compared to other causes of disabilities
CDC's flyer: What Women Should Know About Cytomegalovirus (CMV)
cCMV PRINTABLE BROCHURES for daycare providers, doctors and parents from Utah Health Department's Children's Hearing and Speech Services (your health department will appreciate seeing that another department has already composed the needed brochures--all they have to do is put their own state info in them).
One Page cCMV Fact Sheet plus Bibliography by Lisa Saunders (revise this to fit you/your state):
Here is my fact sheet with the activated links for source articles:
What is congenital Cytomegalovirus (cCMV)?
The #1 viral cause of birth defects. It causes mental retardation, liver disease, cerebral palsy and deafness--more disabilities than Down syndrome-- as a result of infection in pregnant women. Between 50% and 80% of adults in the U.S. are infected with CMV by 40 years of age. According to the CDC, in the U.S.:
- Every hour, cCMV causes one child to become disabled.
- Approximately 1 in 150 children is born with cCMV infection (30,000 each year).
- About 1 in 750 children is born with or develops permanent problems due to congenital CMV infection.
- More than 5,000 children each year suffer permanent problems caused by cCMV.
Is this the “kitty litter” disease? No, that is toxoplasmosis, which causes fewer birth defects than cCMV.
Why don’t doctors warn women of childbearing age about congenital CMV?
Doctors don’t realize how prevalent it is. Fewer than half (44%) of OB/GYNs surveyed reported counseling their patients about preventing CMV infection. “The virtual absence of a prevention message has been due, in part, to the low profile of congenital CMV. Infection is usually asymptomatic in both mother and infant, and when symptoms do occur, they are non-specific, so most CMV infections go undiagnosed,” according to the article“Washing our hands of the congenital cytomegalovirus disease epidemic.”
How many know about congenital CMV? Only 7% of men and 13% of women surveyed had heard of congenital CMV.
What about a vaccine against CMV? Researchers have been working on a vaccine against HCMV (human cytomegalovirus) for years. One reason for delay in successful development is “there has been insufficient education about the problem of HCMV infection…” Pharmaceutical companies need to know that a vaccine will be used because people know about the disease.
What can our state do to protect our children from congenital CMV? Educate public. Pass a bill similar Utah’s H.B 81 (2013) requiring its Health Department to provide cCMV prevention brochures for doctors, parents, and daycare providers and test newborns for cCMV if they fail hearing screen tests so their families can be educated about early intervention services and treatment options. To test for CMV, a saliva or urine sample is collected from the newborn and sent to a laboratory.
Cost of CMV bill (prevention education)? In 2014, Connecticut estimated cost at $40,000 1st year, $26,000 following years. Newborn hearing tests are already required in Connecticut (and in most states) and insurance pays for CMV testing if baby fails hearing screen.
What is the annual cost of caring for children disabled by congenital cytomegalovirus (cCMV) in the U.S. and by state?
“In the early 1990s, the expense to the US health care system associated with congenital HCMV infection was estimated at approximately $1.9 billion annually, with a average cost per child of over $300,000" (Arvin et al. 2004). In 2013, 3,932,181 babies were born in U.S. with 1/750, or .0013, disabled by cCMV = 5,112 babies. Connecticut’s annual cost of caring for children disabled by cCMV: 36,085 births X .0013 cCMV disabled = 47 babies X $300,000/year = $14,100,000 or over $14 million annually.
Which women are most at risk for contracting CMV? “75% of women with a primary infection during pregnancy acquire CMV from their own child under two years of age,” said Stuart Adler, M.D. Data from a variety of day care center studies indicate that between 44 to 100% of two year olds at a single given time were shedding CMV. Day-care workers are at greater risk.
Will it make a difference if women are educated on CMV prevention? Yes, according to studies in the U.S. and France.
Dr. Demmler-Harrison, states: “Studies have shown that women who know they are CMV seronegative, know they are pregnant, and know about their toddler's CMV shedding are the most likely to prevent CMV transmission and reduce their risk from over 50 percent during pregnancy to a risk of less than 5 percent during pregnancy. It is not likely that isolated instances of exposure to saliva or drool will result in transmission. Most studies suggest prolonged repeated exposures over time are important for CMV transmission.”
- Wash hands often with soap and water for 15-20 seconds, especially after wiping runny noses, changing diapers, picking up toys, etc. If soap and water are not available, use alcohol-based hand gel.
- Use soap and water or a disinfectant to clean hard surfaces that have been contaminated by secretions.
- Don’t kiss young children on the lips or share food, drinks, or eating utensils with them.
- If you work in a day care center, limit close contact with children younger than 2½ years of age, especially if you've never been infected with CMV or don't know if you've been infected.
Can you treat cCMV? “CMV infection in newborns can be treated with ganciclovir by IV or valganciclovir by oral route - treatment reduces hearing loss progression and improves growth and head size/brain growth and improves developmental milestones,” says Dr. Demmler-Harrison, Director, Congenital CMV Disease Research, Clinic & Registry. According to the article, “Valganciclovir for Symptomatic Congenital Cytomegalovirus Disease,” by Kimberlin, M.D., et al. (2015), therapy with intravenous ganciclovir or oral valganciclovir is now the accepted treatment option. “Treated infants had fewer developmental delays…than untreated infants.”
###
In 2014, I compiled this pdf of my PowerPoint on what I did and how you can do it. It includes detailed advice on how you can get started, sample letters to politicians, what worked and what didn't work for me, plus how I got the media to help move the state forward. The following was my PowerPoint to educate groups who wanted to learn more about the disease:
To learn about how your state can replicate Utah’s congenital CMV education and marketing materials, such as its brochure for childcare providers by replacing Utah’s Department of Health logo with your state’s Department of Health logo, contact: 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, at (801) 584-8218, smcvicar@utah.gov.
CONGENITAL CYTOMEGALOVIRUS CONTACTS
Sara Menlove Doutre, President and Education Policy Consultant at Doutre Consulting (her daughter was affected by congenital cytomegalovirus) and co-founder of Utah CMV Council. Contact: sara@doutreconsulting.com
Stephanie Browning McVicar, Au.D., CCC-A, DOCTOR OF AUDIOLOGY (worked tirelessly to pass the Utah bill), 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.
Rep.Ronda Rudd Menlove, PhD. She was the representative responsible for passing and enacting the bill in Utah (2013) and has offered to advise CT politicians about the legislation and needed funding. Utah CMV Council, Ronda.menlove@gmail.com.
Dr. Brenda K. Balch, MD, CT’s American Academy of Pediatrics Early Hearing Detection & Intervention Chapter Champion. She has a strong interest because congenital CMV is a major cause of hearing loss. bkbalch@sbcglobal.net, (Sent Testimony to CT’s HB 5525).
Gail J Demmler-Harrison, MD, Professor, Pediatrics, Section Infectious Diseases, Baylor College of Medicine, Attending Physician, Infectious Diseases Service, Texas Children's Hospital, CMV Registry, CMV Research and CMV Clinic. Contact: 832-824-4330, gjdemmle@texaschildrens.org. The CMV Registry supports CMV research, disseminates information and provides parent support. (Sent Letter of Testimony to CT’s HB 5525).
CDC’s Michael Cannon, Ph.D. mrc7@cdc.gov, a research epidemiologist at the Centers for Disease Control and Prevention. Dr. Cannon is particularly interested in developing strategies to prevent congenital CMV infection through public awareness and education.
Lenore Pereira, Ph.D., Founder of Congenital Cytomegalovirus Foundation, and Professor, Cell and Tissue Biology Department, University of California San Francisco. lenore.pereira@ucsf.edu, or visit www.congenitalcmv.org. The Congenital CMV Foundation raises awareness about maternal testing for first infection during pregnancy, newborn testing and the need to develop a vaccine.
Stuart Adler, M.D., Professor Emeritus of Pediatrics and Professor of Microbiology and Immunology, Virginia Commonwealth University. sadler@vcu.edu (sent Letter of Testimony to CT’s HB 5147).
Staley Plotkin, MD, Professor Emeritus of Pediatrics, University of Pennsylvania, Vaccinology Consultant (sent Letter of Testimony to CT’s HB 5147). Contact: stanley.plotkin@vaxconsult.com
Lisa Saunders, Parent representative, Congenital CMV Foundation,
P.O. Box 389, Mystic, CT 06355, LisaSaunders42@gmail.com, Cell: 845-222-8593
###
SEE: Connecticut House Bill 5525 - "AN ACT CONCERNING CYTOMEGALOVIRUS:
Bill Status and "Letters of testimony" to the State of Connecticut from parents, medical community and concerned citizens: http://www.cga.ct.gov/asp/menu/CommDocTmyBillAllComm.asp?bill=HB-05525&doc_year=2015
Summary of letters: http://www.cga.ct.gov/2015/
Quotes:
The benefit of passing HB 5525: According to Dr. Brenda Kinsella Balch, a Connecticut pediatrician and the Connecticut Chapter Champion for the American Academy of Pediatrics Early Hearing Detection and Intervention Program, “Newborn hearing screens in Connecticut have been mandated since July 2000 and 99% of infants have been screened annually for several years. Testing for CMV is not very expensive and is covered by insurance because CMV is known to cause hearing loss and therefore to test for it is reasonable.” She adds: “If we begin testing infants who fail their newborn hearing screen, not only will it increase awareness and hopefully prevention of CMV transmission, but we will be able to identify early those infants with congenital CMV and therefore have the opportunity to intervene earlier to optimize their outcomes.” See Dr. Balch's public hearing testimony at: http://www.cga.ct.gov/2015/PHdata/Tmy/2015HB-05525-R000220-Brenda%20Kinsella%20Balch,%20MD.%20AAP%20Connecticut%20Chapter%20Champion%20for%20the%20Early%20Hearing%20Detection%20and%20Intervention-TMY.PDF
Stephanie Browning McVicar, Au.D., CCC-A, Utah Department of Health, Director, Early Hearing Detection and Intervention / Cytomegalovirus Public Health Initiative, said:
"I am so excited that another state is bringing attention to congenital cytomegalovirus. Utah is looking forward to partnering with Connecticut in their upcoming endeavors."
McVicar added that states are welcome to revise their "CMV prevention brochures for doctors, parents, and daycare providers by removing our state logo/contact information and replacing it with theirs. If they could put an acknowledgement to the Utah Dept. of Health on the brochures, that would be great."
Casey Famigletti of New Canaan, Connecticut, whose daughter was also born with congenital CMV, stated in her public hearing testimony to the Public Health Committee: "What has been most frustrating to me is the fact that I was informed about not eating soft cheeses and deli meat (to prevent listeria), to not clean kitty litter boxes (to prevent toxoplasmosis), to avoid alcohol (to prevent fetal alcohol syndrome) and to take an adequate amount of folic acid (to prevent spinal bifida). If, according to the CDC, 1 in 150 children is born with congenital CMV, making it more prevalent than everything else I was informed of, why was I not informed on the simple step to reduce my risk of acquiring and passing along such a prevalent, preventable and destructive virus?" See Famigletti's entire testimony at: http://www.cga.ct.gov/2015/PHdata/Tmy/2015HB-05525-R000220-Casey%20Famigletti-TMY.PDF
Dr. Demmler-Harrison, Director, Congenital CMV Disease Research, Clinic & Registry, said, “If congenital CMV is diagnosed early, it avoids the need for expensive genetic testing and other tests because diagnosis is established. So, this saves money. Also, some newborns will qualify for treatment based on their doctor evaluation, so testing is important. Testing also allows for more careful follow-up over the childhood/adolescence, since hearing loss from congenital CMV is progressive through adolescence and early adulthood.”
As are as I know, these are the states who are working on a CMV bill:
Hawaii: House Bill 782 - "RELATING TO THE CYTOMEGALOVIRUS"
Bill Status
Bill Status
Texas: Senate Bill 791 - "Relating to testing for and education about congenital cytomegalovirus in infants."
Bill Status
Bill Status
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http://www.iom.edu/Reports/1999/Vaccines-for-the-21st-Century-A-Tool-for-Decisionmaking.aspx
Vauloup-Fellous,Christelle; Picone,Olivie;
Cordier,Anne-Gaëlle; Parent-du-Châtelet,Isabelle;Senat,Marie-Victoire;
Frydman,René; Grangeot-Keros, Liliane . (December 2009). Does hygiene
counseling have an impact on the rate of CMV primary infection during
pregnancy. Retrieved from Jounal of Clinical Virology:
http://www.journalofclinicalvirology.com/article/S1386-6532(09)00419-3/abstract
What Childcare Providers Need to Know about CMV. (n.d.). Retrieved Feb 17, 2015, from Utah
Department of Health, Children with Special Healthcare Needs, Children's
Hearing and Speech Services: http://www.health.utah.gov/cshcn/PDF/CMV%20for%20Childcare%20Providers%20NEED%20TO%20KNOW.pdf
What Women Should Know About Cytomegalovirus (CMV). (n.d.). Retrieved from Congenital Cytomegalovirus
Foundation: http://congenitalcmv.org/CDCbrochure.pdf
###
The following flyers in two languages plus the CDC's webinar on congenital CMV are taken from Utah's webpage at:http://www.health.utah.gov/
CMV Core Facts (Datos Fundamentales de CMV)
CMV Utah Flyer (Citomegalovirus)
PRINTABLE BROCHURES:
(Please change orientation to LANDSCAPE when printing brochures allowing the brochures to print properly. In addition the brochures are double-sided tri-fold, adjust printer settings accordingly for proper printing.)
Congenital CMV and Hearing Loss (CMV Congenito y la Perdida de Audicion)
CMV What Women NEED TO KNOW (Lo Que Una Mujer Necesita Saber Acerca de CMV)
CMV What Childcare Providers NEED TO KNOW (Lo qué los proveedores de cuidado infantil NECESITAN SABER sobre CMV)
For Health Care and Newborn Hearing Screening Providers:
CMV Core Facts (Datos Fundamentales de CMV)
CMV Utah Flyer (Citomegalovirus)
PRINTABLE BROCHURES:
(Please change orientation to LANDSCAPE when printing brochures allowing the brochures to print properly. In addition the brochures are double-sided tri-fold, adjust printer settings accordingly for proper printing.)
Congenital CMV and Hearing Loss (CMV Congenito y la Perdida de Audicion)
CMV What Women NEED TO KNOW (Lo Que Una Mujer Necesita Saber Acerca de CMV)
CMV What Childcare Providers NEED TO KNOW (Lo qué los proveedores de cuidado infantil NECESITAN SABER sobre CMV)
For Health Care and Newborn Hearing Screening Providers:
- CMV for Pediatric Care Providers (PCP)
- CMV for Obstetrical Health Care Providers
- CMV PCR Testing
- CMV Testing Information for PCPs
- CMV Newborn Hearing Screening (NBHS) and PCP Flowchart
- CMV and NBHS Testing Status FAX Form
- CMV Testing Declination Form
***FREE ONLINE WEBINAR!***
"cCMV 101: Congenital Cytomegalovirus from Prevention to Treatment"
Presented by: Dr. Michael Cannon of the Centers for Disease Control and Prevention (CDC)- "Connecticut Moms Fight for CMV Legislation":http://www.ctnow.com/family/ctnow-ct-moms-fight-for-cmv-legislation-20150505,0,3850658.column
- News 8 at CT Capitol RE: CMV
- Connecticut Magazine: Mystic Mom Raises Awareness of ‘Stealth Virus’ That Can Catch Pregnant Women Unaware
- News 8: Preventing Congenital CMV During Pregnancy
- "Preventing Congenital CMV in Pregnancy": http://wtnh.com/2015/02/09/preventing-congenital-cmv-during-pregnancy/
2014
2013- Fox CT Dr & Mom
- CT NOW: Mommy Minute
- Dr. Balch, Saunders, Barry on Health Watch
- Saunders seeks help with CMV ‘silent virus’ prevention bill (Mystic River Press)
- AP article went worldwide mentioning CT Senate failed to vote on CMV Bill: Silent virus a rare, dangerous risk for the unborn
2009 (Lisa Saunders and CMV)