Advocacy Journey
The Washington CMV Project was founded in February 2020. Since then, we have worked toward CMV screening within Washington State.
Technical Advisory Committee and Recommendation to Washington State Board of Health - September 2022
The Washington State Board of Health convened a special Technical Advisory Committee to discuss our petition for CMV screening. We are grateful for the committee’s time and attention to this important topic. Unfortunately, the committee voted to not recommend CMV screening at this time. The Board of Health accepted this recommendation and formed a plan to discuss the petition again in 3 years.
Washington State Board of Health Meeting - October 13, 2021
On October 13th, 2021, the Washington State Board of Health discussed our petition to include CMV in the state’s newborn screening program. The Board voted to convene a Technical Advisory Committee during the summer of 2022. This is the next big step for our petition! Thank you to the Board of Health and Department of Health for an excellent presentation and for helping make a difference for one of our most vulnerable populations.
To learn more about the October 13th meeting, click HERE.
March 10, 2021
Washington State Board of Health met for their monthly board meeting and discussed the Washington CMV Project’s petition for targeted CMV screening. Unfortunately, the Board denied the petition. But, they believed it was best to collect more information and reconsider the petition proposal later in the year.
“The Board directed staff to complete a preliminary review to determine whether there is sufficient scientific evidence to apply the Board’s criteria for inclusion and return for reconsideration at the Board’s October 2021 meeting.”
- Excerpt from the Washington SBOH Petition Denial Letter
While disappointing, the Board of Health’s decision to gather the appropriate information about congenital cytomegalovirus and how it fits the state screening criteria signifies an incredible step in this process… individuals who can make a significant difference are discussing CMV, learning about this potentially devastating disease, and taking the time to consider this petition to help one of our state’s most vulnerable populations.
In preparation for the October 2021 Board Meeting discussion, the Washington CMV Project will provide a report to the Board of Health describing why congenital CMV is a public health crisis and why we must act now. Experts from different medical fields are joining together to write this report along with families who will share their stories.
February 2021
The Washington CMV Project submitted a rule petition to the State Board of Health to mandate CMV screening for all infants who do not pass their newborn hearing screening. This is a major step forward in establishing CMV screening in Washington.
December 2020
The Washington Chapter of the American Academy of Pediatrics’ December 2020 newsletter, featured an article about congenital cytomegalovirus and the Washington CMV Project.
To read the entire article, click the button below.
August 12, 2020,
Washington CMV Project spoke to the State Board of Health about CMV and to support targeted CMV screening of newborns.
Below is the transcript of our comments.
“My name is Mallory Baker. I’m a pediatric audiologist and the founder of the Washington CMV Project, a grassroots organization dedicated to raising the awareness of congenital Cytomegalovirus, CMV. Thank you for the opportunity to speak about this serious, easily contracted, and preventable virus. It impacts the lives of 1 out of every 200 newborns. It is a virus with a higher prevalence than any of the 35 core disorders on the Recommended Universal Screening Panel. When contracted by a pregnant woman, this virus can have a devastating impact on a newborn. CMV can cause seizures, cerebral palsy, vision loss, abnormal enlargement of the spleen and liver, microcephaly, and, sadly, death. And, it is the leading cause of non-genetic hearing loss in children. To be treated properly, it must be detected within the first 3 weeks of life. We do not currently screen for CMV in Washington State.
I propose that Washington State incorporate a targeted newborn screen for CMV.
Currently, only six states have laws mandating a targeted screen of congenital CMV. These states screen newborns after a failed newborn hearing screening. While a universal screen would test the most children, feasibility, cost, and logistics have prompted a targeted screening approach using saliva or urine samples. Studies show that testing saliva has a 99% sensitivity over the 28-34% sensitivity of testing with a dried blood spot.
Studies have also shown low awareness of CMV. One, reports 91% of women of child-bearing age are unaware of CMV and its potential impact on their unborn child. In Washington State, that equals 3 million women… 3 million women with no knowledge about an infection that could cause severe disabilities to an unborn child. The CDC reports the prevalence of congenital CMV as 1 in 200 births. But, a study testing newborns, born in Washington state, showed a higher prevalence of 1.4 in every 100 babies. This equals approximately 1,200 infants born with congenital CMV in Washington each year. Early intervention and possible treatment options are vital to making a positive impact on children with congenital CMV.
Extensive research shows the public health importance, economic benefit, and medical rationale of early CMV screening. I recommend and request convening a Technical Advisory Committee to look into the feasibility of a targeted newborn screen for congenital cytomegalovirus. I want to thank the Board of Health for their work to protect our most vulnerable population through newborn screening programs. I propose that Washington State incorporate a targeted newborn screen for CMV within the first 3 weeks of life. Together ... through early education and screening, we can make a positive difference for hundreds of Washington newborns and their families each year.
Thank you for your time and consideration.”
SB 5829 Pre-filed - December 11, 2023
SB 5829 was pre-filed for introduction in the 2024 Washington State Legislative Session. This bill will create an “opt-in” CMV screening for families in Washington State. Learn more.