Blumenthal, Marshall, Murphy, Landsman, & Lawler Introduce Bicameral, Bipartisan Legislation to Encourage Infant Screening for Virus that Causes Birth Defects

[WASHINGTON, DC] – Today, U.S. Senators Richard Blumenthal (D-CT), Roger Marshall (R-KS), and Chris Murphy (D-CT), and U.S. Representatives Greg Landsman (D-OH) and Mike Lawler (R-NY) introduced the STOP CMV Act to raise awareness of congenital Cytomegalovirus (CMV), a common virus that can cause birth defects, and to encourage increased screenings of infants for the illness to allow for early treatment and interventions.

“This measure aims to educate, spur action, and reduce the risks of CMV—a very serious virus affecting infants which too often goes undetected,” said Blumenthal. “Newborn screenings incentivized by this bill can help prevent a variety of really devastating, catastrophic conditions. States like Connecticut are leading the way in mandating CMV screenings for their newest residents, but our measure is needed to ensure all babies across the country are screened for this virus.”

“Early detection and intervention can have a profound impact living a heathy life, especially when it comes to newborns,” Marshall said. “CMV is the most common infectious disease cause of birth defects and can have lasting impacts on a child’s health if left undetected including hearing loss, vision loss, developmental and motor delay, and seizures. Every child deserves the chance to thrive, and the STOP CMV Act moves us closer to ensuring that possibility for all newborns. Our bipartisan legislation equips healthcare providers with the tools they need to identify and treat CMV early, potentially mitigating the devastating consequences associated with this virus.”

“Screenings and early treatment for babies born with congenital Cytomegalovirus can make all the difference when it comes to minimizing the long-term health impacts. I’m glad to join this bipartisan, bicameral legislation that would raise awareness, incentivize more screenings, and invest in research,” said Murphy.

“Keeping children healthy and providing help to families is so important; that’s why this bill has bipartisan and bicameral support,” said Landsman. “When babies contract CMV and it isn’t caught in time, it can lead to long-term health issues. By increasing screenings, we can significantly reduce CMV’s negative effects. I appreciate the efforts of the advocates at Cincinnati Children’s Hospital for bringing attention to this issue, enabling more children to receive assistance and families to find answers.”

“One in two hundred babies are born with congenital CMV, and 20% exhibit symptoms or long-term health problems. It is crucial that Congress invest in early intervention services to overcome these startling statistics,” said Lawler. “I’m proud to join my colleagues in introducing the bipartisan, bicameral STOP CMV Act. This legislation will improve access to screenings and invest in the critical research necessary to ensure children born with CMV grow up to live healthy lives.”

CMV is a little known yet common virus that is harmless in adults but can cause birth defects like deafness, seizures and developmental delays in babies. It is the leading non-genetic cause of birth defects. The Centers for Disease Control and Prevention (CDC) estimate that one in 200 babies are born with CMV and 1 in 5 babies born with CMV will develop long-term health problems. The legislation is inspired by Bevin, the granddaughter of Connecticut news anchor Ann Nyberg, who was diagnosed with CMV after failing a hearing test as a newborn.

“Congenital Cytomegalovirus, cCMV as it is commonly known, is an infection of pregnant mothers and a leading cause of deafness, developmental defects, and vision loss in newborn infants. This legislation will provide much needed education and attention to important early first-month treatment of newborns afflicted with cCMV to give them the best life possible,” said Ann Nyberg, WTNH News Anchor and Grandmother to a cCMV baby.

The bipartisan, bicameral STOP CMV Act authorizes new funding to incentivize hospitals and other health care entities that care for children to screen babies for CMV within the first 21 days after birth. The bill also authorizes funding to collect data on CMV and to assist in the education and training of health care providers, patients, and the general public. Finally, the legislation directs the National Institutes of Health (NIH) to conduct research into congenital CMV.

The STOP CMV Act is endorsed by the National CMV Foundation, the American Speech-Language-Hearing-Association (ASHA), and the American Cochlear Implant Alliance.

“The National CMV Foundation fully supports the Stop CMV Act to increase research, awareness and prevention of congenital cytomegalovirus (cCMV), and we thank the bipartisan sponsors in the Senate and House for introducing this important legislation,” said Mary Uran, President of the National CMV Foundation and Khaliah Fleming, Executive Director of the National CMV Foundation. “cCMV is common, serious, and preventable, and it's unacceptable that only 9% of women have heard of it. This legislation represents the first coordinated federal effort to improve and invest in CMV research, testing, education and data collection.”

“The American Speech-Language-Hearing Association applauds Senators Blumenthal and Marshall for introducing the Stop CMV Act,” said 2024 ASHA President Tena McNamara, AuD, CCC-A/SLP. “This legislation will focus needed attention and resources on screening for congenital cytomegalovirus in newborns, a huge step forward in identifying children at risk for hearing loss, communication disorders and developmental delays.  Congenital CMV screenings will also facilitate access to critical early intervention services provided by audiologists and speech-language pathologists.”

“The American Cochlear Implant Alliance is proud to support the Stop CMV Act,” said Donna Sorkin, Executive Director of the American Cochlear Implant Alliance. “Our members – clinicians, educators of children with hearing loss, and families impacted by CMV – have been involved in state advocacy for a number of years. We are pleased that this issue is being taken up in the US Congress as it will allow more visibility and a greater impact on the long-term health of children. Passage of this bill will ensure that many more infants are tested allowing for early identification of, and follow-up support, for CMV.”

The Senate version of the bill is available here. The House introduced a similar version of the legislation. 

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