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.
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.
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):
What is congenital Cytomegalovirus (cCMV)?
- 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.
- 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.
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:
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."
CMV Core Facts (Datos Fundamentales de CMV)
CMV Utah Flyer (Citomegalovirus)
(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 in the News
- "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/
- 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)