Congenital CMV: June 2016

Free, downloadable educational resources are available for child care workers and women of childbearing age to prevent congenital (meaning present at birth) cytomegalovirus (CMV), which according to the
Centers for Disease Control and Prevention (CDC), disables a child every hour in the U.S. Many women of childbearing age have heard of the Zika virus spread by mosquitoes, yet only 7% of men and 13% of women surveyed had heard of congenital CMV or how to stop it from attacking their unborn by taking precautionary measures such as refraining from kissing their toddlers around the mouth or sharing cups and utensils with them.
Congenital CMV it is the most common cause of nonhereditary sensorineural hearing loss in childhood. In addition to deafness, Congenital Cytomegalovirus (cCMV) causes mental retardation, liver disease, and cerebral palsy as a result of infection in pregnant women‎.

According to the CDC, in the U.S.:

About 1 in 150 children is born with congenital CMV infection, and about 20% percent of those are permanently disabled by it. In other words, 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 congenital CMV.
Every hour, congenital CMV causes one child to become disabled.

Who are most at risk for contracting CMV?

According to the CDC, (on webpage: http://www.cdc.gov/cmv/clinical/features.html): Childcare Workers--"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. By age 5 years, one in three children have been infected with CMV, usually from breastfeeding or contact with other young children. Although young children with CMV infection generally have no symptoms, CMV can be present in their body fluids for months after they first become infected. Regular hand washing, especially after contact with body fluids of young children, is commonly recommended to avoid spread of infections, including CMV."

According to the article, Cytomegalovirus as an occupational risk in daycare educators
"Studies in industrialized countries have confirmed that children attending daycare have higher excretion rates of CMV than children not attending day-care and that horizontal transmission is common between children in daycare and their adult contacts" (see: National :http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2528629/)

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.

I am the mother partly responsible for the 2015 passing of a new law in Connecticut to combat congenital CMV (click here to see my photograph with Governor Malloy at the ceremonial bill signing holding a photograph of my daughter, Elizabeth Saunders, born with microcephaly--a small head/damaged brain--in 1989 from congenital CMV).

None of my OB/GYNs had warned me about CMV or how to prevent it in pregnancy. I was at high risk because I not only had a toddler of my own, but I ran a licensed daycare center and nowhere in the literature was CMV information and how to prevent it. I am not alone. "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.

I am the parent representative of the Congenital Cytomegalovirus Foundation and the author of the booklet “Once Upon a Placemat: A Table Setting Tale,” which includes CMV prevention tips such as refraining from sharing dishes plus a free teaching tool kit (downloadable placemats for coloring and video). I have spoken to several organizations such as Siemens Healthcare Diagnostics and the Center for Disease Control and Prevention about my daughter’s life with congenital CMV and have written extensively about congenital CMV prevention, including my book, Anything But a Dog! The perfect pet for a girl with CMV (cytomegalovirus), the true story of my disabled daughter and a homeless old dog.

When educating daycare providers, it would be helpful if there was a flyer posted on the child care center to remind their clients of the precautions to take with their own toddlers.

Utah, the first state to require congenital CMV prevention education, puts out this brochure for healthcare providers: http://health.utah.gov/cshcn/pdf/CMV/CMV%20What%20Childcare%20Providers%20Need%20to%20know.pdf

In 2015, I, along with Dr. Brenda Balch, Connecticut's American Academy of Pediatrics Early Hearing Detection and Intervention Chapter Champion, were instrumental in helping Connecticut pass a law requiring testing for congenital CMV for infants who fail their required hearing screen. If a baby tests positive for congenital CMV, doctors can offer the antiviral that has shown to improve outcomes (brain size, hearing, etc.). Upon the Connecticut bill passing, I presented to Connecticut's Medical Assistance Program Oversight Council's Women’s Health Committee to explain congenital CMV and the required testing. Here is my PowerPoint uploaded to Google drive. “We must commit to educating the public about cytomegalovirus so that we can potentially prevent the devastating consequences of this disease on our children," said Brenda K. Balch, MD. The Connecticut Public Health Department now provides congenital CMV information on its website at: http://www.ct.gov/dph/cwp/view.asp?a=3138&q=527824

The prevention education part of the Connecticut bill did not pass because it would cost the state $40,000 a year to educate the public about the disease. Perhaps you can help spread CMV prevention awareness by posting tips on your website, conducting webinars, and providing pediatrician and OB/GYN offices with CMV prevention brochures? To learn how to stop the spread of CMV, see the CDC's website at: http://www.cdc.gov/cmv/index.html, or print this CDC flyer: CDC: CMV Prevention Flyer, www.congenitalcmv.org/CDCbrochure.pdf

The annual medical cost of caring for children born physically and mental disabled by congenital CMV is very high: “In the early 1990s, the expense to the US health care system associated with congenital H[human]CMV infection was estimated at approximately $1.9 billion annually, with an average cost per child of over $300,000” (Arvin et al. 2004).

“This figure is almost certainly an underestimate, especially now with enhanced mobility aids, surgical interventions, cochlear implants, antiviral therapies, occupational and physical therapies, etc., which were not likely included in the older cost estimates,” says Dr. Demmler-Harrison, Director, Congenital CMV Disease Registry and Research Program. For example, one of her patients born in 2001 needed a hemispherectomy (half of her brain removed) to control intractable seizures from polymicrgyria cortical malformation of one side of her brain caused by congenital CMV.

The little girl’s mother, Sandra Salerno of Texas, who resigned from her position as a financial analyst to be the primary caretaker of her daughter, Lillian, featured in Fox News, said of her daughter’s medical costs, “I have tried to sum up her medical costs for the first three years of life and they exceed $1.4 million. The surgery and five-week subsequent hospital stay was probably half of the total costs. She attends ten weekly therapies that last an hour each. At one point, she was taking seven medications. I believe she's been sedated 20 times in her life. Multiple MRI's, heart echos, PET scan, brain surgery, ear tube placement and several Auditory Brainstem Response studies.”

Although the annual cost to care for a child disabled by congenital CMV of $300,000 per child annually is an old cost figure, Connecticut’s annual cost of caring for children disabled by congenital CMV can be estimated by using the following 2014 CDC figures of: 36,285 births in Connecticut X .0013 (1/750) disabled by congenital CMV= 47 babies born disabled by congenital CMV in Connecticut annually X $300,000/year = $14,100,000, or, over $14 million annually to care for children born disabled by congenital CMV in Connecticut.

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, Director, Congenital CMV Disease Research, Clinic & Registry, 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.”

There is no vaccine yet to prevent congenital cytomegalovirus (cCMV), which causes more disabilities (hearing loss, cerebral palsy, learning disabilities) than Down syndrome or toxoplasmosis (the kitty litter disease). If more people knew about human cytomegalovirus (HCMV) not only would children be spared the suffering my daughter endured for 16 years until her death during a seizure, but one reason for the delay in successful development of a vaccine 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.

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 “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.

My OB/GYNs didn’t tell me how to prevent congenital CMV until after Elizabeth was born profoundly mentally and physically disabled by the disease. It was then that I received literature stating women who work in daycare, or have a young child in daycare, are at a higher risk for catching it as toddlers are the majority of carriers. While I was pregnant with Elizabeth, I not only had a toddler if my own, I was also running a licensed daycare center in my home. Nowhere in the licensing literature was there a CMV prevention message. In milder cases, children may lose hearing or struggle with learning, but Elizabeth's case was not a mild one.

If you can think of ways we can collaborate to prevent the suffering my daughter Elizabeth endured, please contact me. Below my signature is a talk I can provide to your members, contact information for medical professionals, and an excerpt of a press release I wrote when Connecticut passed the congenital cytomegalovirus bill. I have also included some of the media coverage of my work.

Perhaps you would like to send a representative to be interviewed on my TV show if a studio taping of this topic would be helpful for your website?

Sincerely,

Lisa Saunders

PO Box 389, Mystic, CT 06355
Lisasaunders42@gmail.com
Congenital CMV blog: http://congenitalcmv.blogspot.com
Personal website: www.AuthorLisaSaunders.com

Lisa Saunders can present to your group:

Stop #1 Birth Defects Virus, Congenital Cytomegalovirus (CMV).

Abstract: In 2015, Lisa Saunders of Mystic was instrumental in helping Connecticut to become the second state in the U.S. to pass a law aimed at combatting the leading viral cause of birth defects, congenital cytomegalovirus (CMV). According to the Centers for Disease Control and Prevention (CDC), every hour a child is born disabled by congenital CMV, yet the vast majority of women of childbearing age have never heard of congenital CMV or how to prevent it. Lisa will share how the disease is spread, who is most susceptible and steps to prevent CMV. She will discuss how she gained the attention of Connecticut media and legislators to enlist their help in educating the public and the successes achieved through writing about congenital CMV in letters to the editor, blogs, books, and press releases, and making presentations to organizations. “By joining forces with others, you can move mountains!”

About Lisa Saunders: Lisa Saunders is an award-winning writer, speaker and TV host living in Mystic, Connecticut, with her husband and hound. A graduate of Cornell University, she is the author of several books and an instructor at New London Adult & Continuing Education. Lisa is a part-time historical interpreter at Mystic Seaport and the parent representative of the Congenital Cytomegalovirus (CMV) Foundation. Lisa’s work on the Connecticut bill was featured in Cornell’s Alumni Magazine (Sept/Oct 2015) and was widely covered in the media (click to see News 8 at CT Capitol RE: CMV.) A Letter from Cornell University President, David Skorton, MD, includes appreciation for her work with Congenital CMV. See Certificate for Promoting Awareness of Congenital Cytomegalovirus from the Infection Control Nurses of Connecticut.

FOR IMMEDIATE RELEASE

DATE: June 4, 2015

CONTACT: Lisa Saunders

Lisasaunders42@gmail.com

Moms and Doctors Find Hope When Connecticut Becomes One of the Few States to Pass Bill on #1 Viral Cause of Birth Defects

House Bill 5525 - An Act Concerning Cytomegalovirus: "A screening test for cytomegalovirus for newborns who fail a newborn hearing screening."

Mystic, Conn.— Ever since Lisa Saunders, the parent representative of the Congenital Cytomegalovirus (CMV) Foundation, learned Utah became the first state to pass a bill on the leading viral cause of birth defects in 2013, she has been asking Connecticut to become the second. A CMV bill was passed by the House in 2014, but the Senate failed to vote on it before the end of the legislative session. Then it happened--in the 2015 legislative session, Governor Malloy signed House Bill 5525: "An Act Concerning Cytomegalovirus" on May 26, 2015.

From a press release issued June 4, 2015, by the State Senate Democrats of the Connecticut General Assembly: "With bipartisan support, the legislature approved and the governor signed a bill that will help mitigate the devastating impact that this disease has on families. The bill requires that hospitals and other health care institutions test newborn infants for CMV if they fail a newborn hearing test. This will help parents intervene early and get their newborn child the help it needs."

"This is a game-changing step forward in our ability to determine CMV causality and give parents a viable option for early treatment," said Scott R. Schoem, MD, FAAP, Director of Otolaryngology, Connecticut Children’s Medical Center.

Children born with congenital CMV can be treated if diagnosed early. “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 of Texas, Director, Congenital CMV Disease Research, Clinic and Registry. According to the article, Valganciclovir for Symptomatic Congenital Cytomegalovirus Disease, “Treated infants had fewer developmental delays…than untreated infants”

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." In addition to testing newborns for CMV if they fail their hearing screen, Utah’s H.B 81 requires CMV prevention brochures for doctors, parents, and daycare providers.

To learn more about congenital cytomegalovirus and how to prevent it, visit the Centers for Disease Control and Prevention at: http://www.cdc.gov/cmv/index.html.

You can print CDC's flyer: What Women Should Know About Cytomegalovirus (CMV)

For a detailed presentation on the disease and testing for it, print the presentation, "Congenital CMV 101: From Prevention to Treatment," by Dr. Michael Cannon of the Centers for Disease Control and Prevention (CDC), by clicking on: cCMV 101 Webinar Slides [PDF]. You can hear watch/hear his presentation with the slides at: cCMV 101 Webinar Recording.

The United States Senate passed legislation designating the month of June as "National Congenital CMV Awareness Month," while recommending that “more effort be taken to counsel women of childbearing age of the effect this virus can have on their children.”

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Additional Notes:

Q. What are the costs of screening for congenital CMV as a result of this new law?

A. “The cytomegalovirus test costs approximately $150.00. As only a few infants annually fail the newborn hearing screening at UCHC [University of Connecticut Health Center], any cost incurred at UCHC is expected to be minimal,” states the House Bill 5525 webpage.

“Usually, if the CMV test is positive, no further testing, such genetic testing (which can cost thousands of dollars and may require pre-approvals), is done, unless there are unusual circumstances. Certainly, on rare occasion, a poor baby can be born with two conditions, but that is not at all common. Therefore, early diagnosis of a clear condition with a clear diagnostic test saves the doctor and the family a costly and heart breaking/stressful diagnostic odyssey,” states Dr. Demmler-Harrison, Director, Congenital CMV Disease Registry and Research Program. Fox News reported on the terrible consequences of a delayed cCMV diagnosis for the child Lillian Salerno mentioned above.

LISA’S PRESENTATIONS AND MEDIA COVERAGE:

Presentations and references include:

Congenital Cytomegalovirus Conferences (CDC, Atlanta, GA, 2008; San Francisco, CA, 2012; Salt Lake City, UT, 2014). References for all three conferences include:

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.

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.

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.

Medical Assistance Program Oversight Council's Women’s Health Committee (July 13, 2015). References:

Richard Eighme, Clerk, Medical Assistance Program Oversight Council, (860) 240-0321, Richard.eighme@cga.ct.gov

Rep. Susan Johnson, Johnson@cga.ct.gov

The Woman’s City Club of Norwich (2015): How a Mother Raised Awareness of #1 Viral Cause of Birth Defects and Got Connecticut to Pass a Bill to Combat It. Reference:

Eileen Nagel, The Woman's City Club of Norwich, eileen.nagel@snet.net

The Westerly Registered Nurse’s Club(April 22, 2014).

Reference: Ida Manzella, imanzella@comcast.net

Siemens Healthcare Diagnostics (Fall 2010 webinar and my story published in their magazine). References:

Katherine Soreng, Ph.D., Director, Clinical and Scientific Marketing, katherine.soreng@siemens.com

Theresa Spence, M.B.A., Senior Marketing Manager, Disease State Marketing, Siemens Healthcare Diagnostics, Inc., theresa.m.spence@siemens.com

Infection Control Nurses of Connecticut (April 2013). Reference:

Kris Magnussen, KMagnussen@llhd.org

MEDIA COVERAGE ON LISA’S WORK AGAINST CONGENITAL CMV

2015:

Connecticut Magazine: Mystic Mom 'Overwhelmed' by Governor Signing Law on ‘Stealth Virus’ That Can Catch Pregnant Women Unaware

CT Now: New Cytomegalovirus (CMV) Law in Connecticut
Cornell Alumni Magazine: In Memory of Elizabeth: Her daughter's death from a preventable disability spurs Lisa Avazian Saunders '82 into action