New Legislation For CMV in Virginia
For the 2019 General Assembly session, House Bill 2026 was developed to establish Newborn Screening for Congenital Cytomegalovirus.
Congenital CMV infection is the leading cause of childhood disability and the leading cause of non-genetic childhood hearing loss. Most often it goes undiagnosed, because other outward signs may be subtle or unrecognized and because a confirmatory test for congenital CMV must occur before the age of about 30 days. Early diagnosis of CMV would allow earlier treatment and management of hearing loss as well as closer observation for other CMV-related complications.
It is firmly established that early detection and treatment of hearing loss improves long-term outcomes and reduces long-term costs. Antiviral therapy is established as a means of reducing long-term neurologic and developmental outcomes and evidence is building that it can stabilize or reduce hearing loss. Early diagnosis and management of the complications of CMV will reduce long-term costs related to the disability.
More often than not, doctors are unable to provide parents with a diagnosis for the cause of hearing loss, which is a source of anxiety and frustration for parents. Retrospective diagnosis of congenital CMV is often not possible due to limited access to and limited sensitivity of dried blood spots. A confirmed diagnosis of congenital CMV would reduce the need for expensive genetic testing and fine tune other diagnostic testing.
Virginia maintains a highly effected newborn hearing screening program, screening and documenting 95.2% of births within 1 month, the first part of the 1/3/6 initiative.
However, Virginia struggles to achieve a high rate of compliance with the goals of a diagnostic evaluation by 3 months and enrollment in Early Intervention by 6 months. The rate of compliance for those goals was 16.2% and 48% respectively, in 2016*.
Adding a requirement for CMV screening would enhance the EHDI program by increasing awareness and emphasis of hearing loss in the newborn period and has potential to reduce the rate of lost to follow-up and improve timely diagnostic evaluation and intervention. Not only will the elevated awareness of CMV improve the outcomes of newborns with CMV and/or hearing loss, but it will benefit future mothers and children by increasing use of prevention strategies.
NEXT STEPS:
HB2602 was referred to the Committee on Health, Welfare and Institutions. And on 2/22/19 HB 2026 passed the House: with a 100% adoption VOTE (96-Y 0-N)
A special thank you Elizabeth C. Abeyounis, MC - CCC; LSLS, for the above information!! If you have a deaf and hard of hearing child in the Newport News area, you should look up Elizabeth at the Children's Hospital of the King's Daughters.
*The aforementioned low rate of compliance for early intervention enrollment goals is a really big problem in Virginia. As of a 2016 study, only 40% of deaf and hard of hearing kids are getting to Kindergarten on par with their hearing peers. You can read about the legislative work I have been involved with for the past few years here.