In summary, this is what happened in Utah: 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.
Where I began in Connecticut:
How a bill becomes a law in Connecticut: http://www.cga.ct.gov/html/bill.pdf
I didn't know how to get Connecticut to pass such a law so I visited my Town Clerk (they are voted into office so are interested in helping their residents). I asked her how I could get Connecticut to follow Utah's example. Although I could have found out who my representative was online, she looked it up for me and gave me the representative's home address (it's public record). She then told me how to get the ball rolling. It just helps to have a local person guide me through the government process.
Here is the email I send seeking support for CMV prevention:
Dear [_______],
I was wondering if there is anything I can do to help you to prevent birth defects from congenital cytomegalovirus (CMV)? CMV is the #1 birth defects virus and causes more disabilities than Down syndrome, yet most women don’t know how to prevent it. It’s too late for my daughter Elizabeth who was born with a severely damaged brain, but I hope you will propose a bill similar to the one that passed in Utah in the Summer of 2013 to protect future unborn babies from such a fate.
I live in Mystic, Connecticut, and am a parent who didn't know how to prevent congenital CMV until it was too late for our daughter. She passed away at the age of 16 during a seizure and had been gradually losing her hearing. I am the author of the book,
Anything But a Dog! The perfect pet for a girl with congenital CMV and parent representative of the Congenital CMV Foundation.
OB/GYNs didn’t tell me how to prevent CMV until after Elizabeth was born. Then I learned those working in daycare, or have a child in daycare, are at a higher risk for catching it as preschoolers are the majority of carriers. Mothers must wash their hands after handling toys and should not kiss their toddlers around the mouth. While I was pregnant, I had a toddler plus ran a licensed daycare center. In milder cases, children may lose hearing or struggle with learning. But Elizabeth's case was not a mild one. She was quadriplegic from cerebral palsy, and suffered from frequent pneumonia, major surgeries and ever-worsening epilepsy. She died during a seizure at 16.
Less
than half of OB/GYNs surveyed said they counseled their patients on how
to prevent CMV infection, despite these U.S. statistics from the CDC:
•Congenital CMV causes one child to become disabled every
hour.
•About 1 in 150 children is born with congenital CMV
infection each year (approximately 30,000).
According
to an article co-authored by the CDC’s Dr. Cannon, “The direct annual economic costs of caring for these children are
estimated at $1-2 billion…by missing prevention opportunities, we in the
medical and public health communities are washing our hands of the congenital
CMV disease epidemic.”
I
have been trying for years to raise awareness through speaking engagements, including
those sponsored by the CDC, USA 9 News,
books, even my most recent book, Mystic
Seafarer’s Trail: Journey to “7 Wonders,” Titanic’s
Shoes and Amelia Earhart’s Sectret Wedding, includes information on CMV
prevention.
Once Utah got their cytomegalovirus education bill passed, I
finally found hope that the rest of the country would find it easier to follow
suit. Utah passed a law making it mandatory for the Health Department to educate the public on how to prevent congenital CMV. The Utah Bill is here: http://le.utah.gov/~2013/bills/hbillenr/HB0081.pdf
In summary, this is what happened in Utah in case you are not already aware:
Cytomegalovirus (CMV) Public Health Initiative H.B. 81 (2013 General Session) UCA 26-10-10, whose Chief Sponsor was Representative Ronda Rudd Menlove, went 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.
In summary, this is what happened in Utah in case you are not already aware:
Cytomegalovirus (CMV) Public Health Initiative H.B. 81 (2013 General Session) UCA 26-10-10, whose Chief Sponsor was Representative Ronda Rudd Menlove, went 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.
Utah's Health Department (Children's Hearing and Speech Services) is charged with educating the public about congenital CMV. See how they are doing it at: http://www.health.utah.gov/cshcn/CHSS/CMV.html
I will be attending Utah's CMV conference in Fall 2014. See:
http://www.conference.usu.edu/cmv
After presenting Elizabeth’s story at the international Congenital CMV conference at the CDC in 2008, mothers pushed their children toward me in wheelchairs and asked, “Why didn’t my OB/GYN tell me how to prevent this?” One mother even asked, "Learning what you did, why didn't you shout it from the rooftops?"
Last summer, when Utah passed their bill, I finally found hope that CMV prevention would become as famous as the “don’t change the kitty litter” rule when pregnant. According to an article co-authored by the CDC’s Dr. Cannon, “The direct annual economic costs of caring for these children are estimated at $1-2 billion…by missing prevention opportunities, we in the medical and public health communities are washing our hands of the congenital CMV disease epidemic.” Please do your part to shout CMV prevention from the rooftops by proposing this bill.
I have spoken twice at international CMV conferences co-sponsored by the CDC as the Parent Representative of the Congenital CMV Foundation, which was organized to raise public awareness about maternal testing for first infection during pregnancy, newborn testing and the need to develop a vaccine to prevent this devastating disease.
Thank you in advance for any guidance you can give me.
I will be attending Utah's CMV conference in Fall 2014. See:
http://www.conference.usu.edu/cmv
After presenting Elizabeth’s story at the international Congenital CMV conference at the CDC in 2008, mothers pushed their children toward me in wheelchairs and asked, “Why didn’t my OB/GYN tell me how to prevent this?” One mother even asked, "Learning what you did, why didn't you shout it from the rooftops?"
Last summer, when Utah passed their bill, I finally found hope that CMV prevention would become as famous as the “don’t change the kitty litter” rule when pregnant. According to an article co-authored by the CDC’s Dr. Cannon, “The direct annual economic costs of caring for these children are estimated at $1-2 billion…by missing prevention opportunities, we in the medical and public health communities are washing our hands of the congenital CMV disease epidemic.” Please do your part to shout CMV prevention from the rooftops by proposing this bill.
I have spoken twice at international CMV conferences co-sponsored by the CDC as the Parent Representative of the Congenital CMV Foundation, which was organized to raise public awareness about maternal testing for first infection during pregnancy, newborn testing and the need to develop a vaccine to prevent this devastating disease.
Thank you in advance for any guidance you can give me.
I then sent my local representative my book, Anything But a Dog! The perfect pet for a girl with congenital CMV (you could send your child's framed photograph--or friend's child--or anything that would make your representative feel guilty to throw out), a copy of the Utah bill and their public health department's page that shows how they are fulfilling the intention of the law. The Utah Bill is here: http://le.utah.gov/~2013/bills/hbillenr/HB0081.pdf . The following is how Utah's Health Department (Children's Hearing and Speech Services) is abiding by the terms set forth in the bill: http://www.health.utah.gov/cshcn/CHSS/CMV.html
You may need to contact your representative a few times before they mail you a copy of the letter they send to the Public Health Committee stating that one of their constituents wants the attached Utah bill to pass in your state.
I was not told when the bill was being proposed--I just happened to find that out when the State's hearing services coordinator person responded to an email I sent her (hearing services people are your biggest support as they know CMV's damage to hearing). Since my representative is not on the Public Health Committee, that is perhaps why this news almost didn't reach me. Here is the bill: http://www.cga.ct.gov/asp/cgabillstatus/cgabillstatus.asp?selBillType=Bill&bill_num=HB05147&which_year=2014
Once you reach out to your representative (and put on your calendar to contact them to ask if they have reached out to your state's Public Health Committee), then you can work to build your network of support:
Contact your state's EHDI (Early Hearing Detection & Intervention) Coordinators and Chapter Champions.
These three who sent letters of testimony into CT will also help you get started and/or give you the facts you need:
02/28/2014 Sara Doutre
02/28/2014 Gail Demmler, MD
02/28/2014 Janelle Greenlee, President and Founder, Stop CMV
Here is my letter of testimony: 02/28/2014 Lisa Saunders, Parent Representative, Congenital CMV Foundation
- Find doctors and parents in your state who care about CMV. Ask them to contact their reps asking for this bill. One of the reps is bound to follow through!
- Perhaps find a company/organization who would like to see it get passed as well (like a pharmaceutical company or hand sanitizing manufacturers). They may have a government relations person on staff willing to help you.
- Prepare your letter of Testimony for when the bill gets proposed (you can go on your state's website to find that out or call your representative's office to get that info---always best to call because the aides will care more about your cause when they get to know you personally). Tell your representative you are prepared to testify (everyone is allowed to testify). Here is how to prepare (this is CT's info, but your state will probably have its own guidelines): http://www.cga.ct.gov/asp/content/yourvoice.asp
- In the meantime, write letters to the editor of your state's papers/magazine about what you wish readers knew or would do if a bill gets proposed. People read those and editors like to publish them. Read the guidelines for the papers--you often have only 200 to state your case.
My state only gives three minutes to present public testimony when a bill is being considered at the capitol, so it takes time to get your wording right (I would mention what any medical professionals who wants the bill passed).
I would also refer to Dr. Demmler-Harrison's letter of testimony given her Registry and direct experience with patients. I found that when letters of testimony included information on CMV, it was scanned in with their letters. Perhaps this is the info that helped educate the Public Health Committee on the little-known CMV disease.
The number of parents and medical professionals who sent in letters of testimony impressed the Public Health Committee (even though most were not from my own state).
IN SUMMARY:
Find out who your local representative is (their office and private address are public information).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).
- Tell your representative about how your child was affected by congenital CMV. Calling them seems to make more of an impact than emailing them.
- Your state does not need to the law to educate the public about congenital CMV. So while you are waiting for the law to get passed, ask you health department to follow the intention of Utah's law. Try finding out your State's Health Department titled something like Utah's, which is carrying out the instructions in the law: Children's Hearing and Speech Services. You can find your state's site at:http://www.infanthearing.org/status/cnhs.php.
- For more information about congenital CMV and how you can protect your pregnancy, contact:
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:The CMV Registry supports CMV research, disseminates information and provides a parent support group. Registry: www.bcm.edu/pediatrics/cmvregistry/, cmv@bcm.eduMichael J. Cannon, Ph.D., Research Epidemiologist, CDC, can be reached atmcannon@cdc.gov
Lenore Pereira, Ph.D., Congenital CMV Foundation founder and Professor, Microbiology and Virology, Cell and Tissue Biology Department, University of California San Francisco, can be reached at lenore.pereira@ucsf.edu, or visit www.congenitalcmv.org/ which includes Members of the Scientific Advisory Committee with their contact information. Dr. Pereira has studied immune responses to CMV infection and molecular biology of viral glycoproteins for over 25 years.
While we wait for our States to educate the public you can:
1. Tell your friends and family how to prevent congenital CMV infection (namely through refraining from kissing their toddlers around the mouth and through careful hand washing when handling their saliva and urine). See http://www.cdc.gov/cmv/.
“Washing our hands of the congenital cytomegalovirus disease epidemic”: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379
"Knowledge and Practices of Obstetricians and Gynecologists Regarding Cytomegalovirus Infection During Pregnancy --- United States, 2007": www.cdc.gov/mmwr/preview/mmwrhtml/mm5703a2.htm
2006 PubMed Central article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1779612
Article quoting OB/GYN why CMV prevention isn't discussed in Fit Pregnancy Magazine, June/July 2008 issue: Protect Your Baby From A Tot-Borne Virus or visit: www.fitpregnancy.com/yourbaby/babycare/40723077.html?subsection=baby_health_development
For more information about what's going on in Utah:
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
