Shayne and Megan Gaffney
Massachusetts cCMV Coalition
Bill Filed in Massachusetts to Mandate Universal Newborn Screening for Highly Debilitating Congenital Cytomegalovirus
Bill Aims to Protect and Save Unborn Babies from Common Virus, which has Dangerously Low Awareness among Women
BOSTON, MA (February 22, 2021) – “Why didn’t anyone tell me?” is the most common response from mothers when they find out their child is infected with cCMV, the leading viral cause of birth defects and developmental disabilities in children. As such, today the Massachusetts cCMV Coalition is pleased to announce a major milestone in its mission to educate the public and stakeholders about congenital cytomegalovirus (cCMV). Senator Joan Lovely (D-Salem) and Representative Kay Khan (D-Newton) have moved forward with the filing of House and Senate bills (HD2583/SD1810), an Act relative to the prevention and early detection of cCMV.
Transmitted from mother to child during pregnancy, about 1 in every 200 babies are born with cCMV and around 1 in 5 of those will have long-term health problems, including hearing loss, mental disabilities, physical disabilities, vision loss, seizures, Cerebral Palsy, and even death. Infection is preventable but awareness is dangerously low – 91% of women do not know about it.
Under the bill, the state would be mandated to provide universal newborn screenings for cCMV. The virus goes largely undetected because a majority of affected babies are asymptomatic at birth – about 15% of infants with cCMV will have no symptoms at birth but will later develop hearing loss and other health issues. Testing and early detection is critical for timely intervention and treatment, but because Massachusetts does not have universal screening, many children are not tested for cCMV until the limited window for treatment has passed, which can lead to long-term developmental issues. Currently in Massachusetts, there is no policy on infant screening nor is it part of the normal screening process for infant diseases/disorders. If passed, Massachusetts would make history as the first state in the U.S. to require universal screening.
The bill will also require prenatal education through clinical care and obligate hospitals to begin reporting on positive cCMV cases, which aims to reinforce the prevalence of infected babies in Massachusetts.
“I appreciated the opportunity to participate in a Zoom call last month with parents of children who have cCMV,” said Senator Joan Lovely (D-Salem). “This conversation inspired me to file a bill to mandate education for prospective parents and ensure the Department of Public Health receives data on incidences of this disease. I look forward to working with Representative Khan and the Massachusetts cCMV Coalition to pass this legislation to help families throughout the Commonwealth.”
“After losing my sweet baby, Logan, to cCMV at just four months old, I believe it is critical to encourage the passage of this bill,” said Vanessa Colleran, Massachusetts CMV Coalition member who resides in Oxford, Mass. with her husband and two children. “We need to bring this deadly virus out of the shadows and save future families from the pain and suffering caused by an infection that can be prevented with proper prenatal education. The preventative measures are simple and take just a minute to explain – don’t kiss your children on the mouth or share drinks, wash your hands frequently. Logan might still be here if I only knew then, so I am on a mission to make sure everyone knows now.”
The bill seeks to require universal screening over a targeted approach, as universal screening is more comprehensive and cost-effective. Targeted screening misses the majority of cCMV cases, resulting in added costs to the Commonwealth of Massachusetts.
“I was saddened to learn about the prevalence of cCMV and equally dismayed that the Commonwealth does not require universal newborn screenings or prenatal education for this devastating virus,” said Representative Kay Khan (D-Newton). “I am proud to join my colleague, Senator Joan Lovely, in filing this common sense bill to raise cCMV awareness and improve outcomes for families facing this diagnosis.”
“One of the most heartbreaking things is to tell families that their child’s hearing loss may have been treatable if the cause had been identified earlier,” said Michael S. Cohen, M.D. Director, Multidisciplinary Pediatric Hearing Loss Clinic at Massachusetts Eye and Ear. “cCMV is a common cause of hearing loss, but because we do not have universal testing, many children are not tested for cCMV until the narrow window for treatment has passed. This is a real problem with a simple solution that can meaningfully change the developmental outcomes for these children.”
“I have been doing research on congenital CMV and taking care of infected infants for many years,” said Laura Gibson, M.D., Adult and Pediatric Infectious Diseases at the University of Massachusetts Medical School. “When I talk with mothers about the virus that has infected their baby, they always ask ‘Why didn’t anyone tell me about CMV? If I had only known.’” Major progress has been made in the prevention, diagnosis and treatment of this potentially devastating infection. With the adoption of this bill, we will ensure that pregnant women and their infants born in the Commonwealth have the most up-to-date education, screening, and medical care for congenital CMV.”
As of 2020, twelve states have passed versions of cCMV legislation: Utah, Illinois, Iowa, New York, Colorado, Hawaii, Idaho, Oregon, Texas, Tennessee, Connecticut and Virginia.
To get involved and help protect and save future infants, please visit the bill’s page to learn more here.
About The Massachusetts Congenital CMV Coalition (MCC)
The Massachusetts Congenital CMV Coalition (MCC) is a group of medical professionals, educators, stakeholders, and parents who have united with the common goal of lessening the impact of congenital cytomegalovirus (cCMV) in Massachusetts, through education, prevention, screening, and care. For more information, please visit their website here.