Public Health Committee
JOINT FAVORABLE REPORT
AN ACT CONCERNING CYTOMEGALOVIRUS.
SPONSORS OF BILL:
Public Health Committee
Rep. Ryan, 139th Dist.
Rep. Bumgardner, 41st Dist.
REASONS FOR BILL:
Starting January 1, 2016, this bill requires all health care institutions caring for newborn infants to test those who fail their required newborn hearing screening for cytomegalovirus (CMV). It requires the testing be done (1) within available appropriations and (2) as soon as is medically appropriate, unless, as allowed by law, their parents object on religious grounds.
Like existing law that requires these institutions to test newborn infants for cystic fibrosis, severe combined immunodeficiency disease, and critical congenital heart disease, the test for cytomegalovirus is not part of the state's newborn screening program for genetic and metabolic disorders. That program, in addition to screening, directs parents of identified infants to counseling and treatment.
RESPONSE FROM ADMINISTRATION/AGENCY:
Jewel Mullen, Commissioner, Department of Public Health (DPH): It proposes a screening test for cytomegalovirus (CMV) for any infant who fails a newborn hearing screening on or after January 1, 2015. It also charges DPH with providing information to parents of such newborns concerning birth defects associated with CMV and establishing a public education program concerning CMV. CMV is a common virus that infects people of all ages. Most CMV infections are “silent”, meaning most people who are infected with CMV have no signs of symptoms and suffer no harmful effects; the danger is to unborn infants who can suffer from damage to the brain, eyes and inner ear. If the Screening were to be implemented, it would require DPH to develop an education program and materials for parents. There would be additional costs related to labor, printing, and distribution materials. These costs are not included in the Governor's proposed budget, and the department does not have the capacity to fulfill all the mandates of this bill within available appropriations. The Department will work with the proponents of the bill to identify if there are any provisions that can be implemented within available means.
NATURE AND SOURCES OF SUPPORT:
Brenda Kinsella Balch, Pediatrician: It is important that the bill be passed in order to educate and therefore prevent the devastating impact cytomegalovirus has on our infants and families in Connecticut. This bill will not only lead to prevention of CMV in our state, but ultimately the treatment and cure of CMV for future generations.
Nancy Bruno, Connecticut Academy of Audiology: There are significant social, emotional and developmental impacts CMV has on children and families. In addition to those impacts there is a financial burden that researchers at the institute of Medicine stated that the average cost of CMV is 1-4 billion dollars. Unlike most disabilities CMV is preventable and studies have shown that CMV is reduced when women are educated about prevention.
Lisa Saunders, Congenital Cytomegalovirus Foundation: Shared personal story and explained that as a daycare worker she was never informed of her increased risk of attracting the virus. She included a fact sheet in testimony with information on CMV.
Gail Demmler Harrison, MD: CMV is the number one viral cause of birth defects, causing more disabilities than Down syndrome. This is a preventable disease and the more information that is out there, the better we stand at preventing this virus from spreading.
Melvette Ruffin: According to the Centers for Disease Control and Prevention, CMV causes one child to become disabled every hour in the U.S. In addition, she submitted personal story of impact CMV had on her son.
Rebecca Fox: According to OB/GYNs surveyed, less than half reported counseling their patients about preventing CMV infection. Greater information and a public health campaign will help to reduce the spread of the infection resulting in less disabled infants and cost savings.
JoAnn Shaughgnessy: Her close friends have a son born with the CMV virus and she sees the difficulties they go through. They support CMV awareness and necessary intervention services in included in all parental visits as wells as educating all caregivers.
Stephanie Antonietti: Believes that it is important for cytomegalovirus to be identified early and women are educated on prevention.
Grace Cleere: Would like to see women of childbearing age to learn how they can protect their babies from this devastating virus.
Stephanie Bolstridge: Believes in the importance of early detection and education of women on how to prevent this virus. Shared personal story and stated that if her doctor had been thinking more about CMV, then they might have identified this sooner.
Christine Jost: CMV causes more disabilities than Down syndrome. CMV causes mental retardation, liver disease, cerebral palsy and deafness. All of this can be prevented by education and early detection.
Krystyn Aquinaldo: Doctors often do not inform their patients about CMV prevention because they fail to realize how prevalent it is. Her daughter failed for hearing tests and still went undiagnosed for months, has a result failed to get the proper treatment. She shared personal story of her daughter's current physical and mental condition.
Patricia Lake, Lawrence Memorial Hospital: As a doctor, she has followed several children during her career who have had significant hearing loss due to cytomegalovirus. Doctors don't often warn their patients about CMV prevention because they don't realize how prevalent it is.
Jason Buehler, Terry Bedard, Denise Ozment, Krista BachlBreanna Eder: Submitted similar testimony on the important facts, costs, preventability and studies outlining their support for this bill.
Connecticut Children's Medical Center: If Connecticut wants to maintain access to the full spectrum of pediatric health care services for all of its children, there must be a relationship between Medicaid cost coverage for the services. While the number of children served by Connecticut Children's Medical Center has risen, Medicaid cost coverage has decreased since 2008 from 91% to 64% in 2014. It is very important to implement these tests for hearing loss and CMV that are effective, timely and cost-efficient so needed antiviral treatments can begin as soon as possible.
Sharon Maasdorp: Shares personal story about her niece who was born with CMV in 2005.
Stacey Sears: Shared a story about her two friends who had CMV during pregnancy.
Leah Prescott: Shared personal story of her son who was born with CMV in 2009.
Douglas & Casey Famigletti: Shared personal story of her daughter who was invested with CMV while she was still in utero. She describes the symptoms that her daughter experiences.
Jodie Tucciarone: Stresses the importance of CMV education for women. She shares personal story of daughter's difficulty with the disease.
Sara Menlove: She shared her experience of not being provided information about CMV and how it took 16 months for her child to be diagnosed with the ailment. After the diagnosis having knowledge and information empowered her to make informed decision regarding their daughters care.
Trevor Prescott, Stanley Plotkin and JoAnn Shaughnessy: shared personal experiences and the effects that CMV had on their families and close friends.
NATURE AND SOURCES OF OPPOSITION:
Reported by: Zani Imetovski