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ABSTRACT INFORMATION
Title: 'Advocacy through Legislation: Utah’s Congenital Cytomegalovirus Public Health Initiative' Track: 10 - Policy, Advocacy and Legislative Issues Keyword(s): legislation, cytomegalovirus, public health, parent advocacy, causes of hearing loss Learning Objectives: Discuss the impact of congenital cytomegalovirus on hearing and describe the importance of testing infants for cCMV. Describe the benefits of public health initiatives related to cCMV and the effect of such initiatives on early hearing detection and intervention. Prepare for more effective advocacy on early hearing detection and intervention through statewide legislation and public health policy. Abstract: Approximately 1 in 150 children is born with congenital CMV infection. 1 in 5 of those children will develop permanent problems (such as hearing loss or developmental disabilities). Congenital CMV is the leading non-genetic cause of childhood hearing loss. However, most women and many health providers are not educated about CMV and its potential impact on hearing. Many children with CMV have a progressive hearing loss or hearing loss that presents later in life; the definitive diagnosis of congenital CMV infection relies on virologic testing within three weeks of birth. In 2013, the Utah Legislature unanimously passed House Bill 81, Cytomegalovirus Public Health Initiative. Utah’s Cytomegalovirus Public Health Initiative is an example of effective collaborative advocacy among EDHI stakeholders including parents, practitioners and researchers that is resulting in changes in clinical practice to better identify children with hearing loss. One child’s delayed diagnosis of CMV-induced progressive hearing loss led to state law and public health policy that will assist Utah to more effectively identify children with congenital CMV, ensure that hearing loss due to CMV does not go undetected, and provide options for early intervention and treatment for children who have hearing loss due to CMV. The law directs medical practitioners to test infants, who fail the newborn hearing screening test(s), for CMV and to inform the parents of those infants about the possible effects of CMV and the available treatment methods including early intervention for hearing loss. The newly enacted law also establishes a public education program regarding the impacts and dangers of congenital CMV infection and the methods of prevention of CMV infection. Information on CMV must be provided to multiple groups including pregnant women and women who may become pregnant; child care programs; and health care providers offering care to pregnant women and infants. Presentation: This presentation has not yet been uploaded or the speaker has opted not to make the presentation available online. Handouts: Handout is not Available
PRESENTER(S) / AUTHOR(S) INFORMATION
Sara Doutre - Primary Presenter NCHAM      Credentials: MA       Sara Doutre is a PHD student studying sociobehavioral epidemiology at Utah State University. She has an MA in education policy studies and a BS in elementary and special education. A former special education teacher and education policy professional, he currently consults with state departments of education and health on special education policy. Her four-year-old daughter is deaf due to congenital cytomegalovirus.       ASHA DISCLOSURE: Financial - No relevant financial relationship exist. Nonfinancial - No relevant nonfinancial relationship exist. Ronda Menlove - Primary Presenter Utah House of Representatives and Utah State University      Credentials: Utah House of Representatives; Senior Vice Provost; Associate Professor, Special Education, Utah State University, Logan, Utah       Ronda Menlove is the chair of the Utah House of Representatives Health and Human Services Appropriations Committee. She successfully sponsors legislation each year to assist children, families, youth, and adults with disabilities. She is also a Senior Vice Provost at Utah State University.       ASHA DISCLOSURE: Financial - No relevant financial relationship exist. Nonfinancial - No relevant nonfinancial relationship exist. Stephanie Browning McVicar - Co-Presenter Utah Department of Health      Credentials: Au.D., CCC-A       Dr. McVicar is the Director of the Early Hearing Detection and Intervention (EHDI) Program, the Children’s Hearing Aid Program, and the Cytomegalovirus Public Health Initiative in Utah. She is Program Manager in the Utah Department of Health's Children with Special Health Care Needs Bureau in Salt Lake City. She is the Audiology Core Faculty member and Director of the Infant-Pediatric Audiology Program for the URLEND (Utah Regional Leadership Education in Neurodevelopmental Disabilities) Program, training future leaders in transdisciplinary family-centered care of children and adolescents with special healthcare needs. Clinically, Dr. McVicar is a pediatric audiologist. She is originally from Western New York and has over two decades of experience and knowledge in Audiology and the management of health care programs in both the public and private sectors. Dr. McVicar serves on the Board of Ethics in Audiology for the American Speech-Language-Hearing Association.       ASHA DISCLOSURE: Financial - No relevant financial relationship exist. Nonfinancial - No relevant nonfinancial relationship exist. James Bale - Author University of Utah      Credentials: Professor, Dept Pediatrics, University of Utah       Dr. Bale is a Professor of Pediatrics and Neurology. He serves as the Vice Chair for Education in the Department of Pediatrics and is the Director of the Categorical Pediatric Residency Program. He is currently a member of the NST-1 study section of the NIH, a study section that reviews K proposals for the NINDS. He is a nationally recognized expert in the field of pediatric CMV disease.       ASHA DISCLOSURE: Financial - No relevant financial relationship exist. Nonfinancial - No relevant nonfinancial relationship exist. Albert Park - Author University of Utah      Credentials: Section Chief, Pediatric Otolaryngology, Professor, Dept Surgery and Pediatrics, University of Utah      Other Affiliations: Primary Children's hospital       Albert Park, MD, serves as the section chief of pediatric otolaryngology and professor within the Department of Surgery and the Department of Pediatrics at the University of Utah. Dr. Park obtained his MD at the Washington University School of Medicine. He then completed his residency training at Loyola University Medical Center and pediatric otolaryngology fellowship training at the Hospital for Sick Children in Toronto, Canada. His primary research interest focuses on understanding the pathophysiology of congenital cytomegalovirus (CMV) induced hearing loss and developing novel assays for diagnosis.       ASHA DISCLOSURE: Financial - Receives Grants for Independent contractor from Triologic Society.   Receives Grants for Independent contractor from Otonomy.   Nonfinancial - No relevant nonfinancial relationship exist. Karl White - Author Utah State University      Credentials: PhD       Dr. White is a Professor of Psychology, the Emma Eccles Jones Endowed Chair in Early Childhood Education, and the founding Director of the National Center for Hearing Assessment and Management. He has been the PI or Co-PI for over $50 million of competitively awarded research. His work has been recognized with awards from such diverse organizations as the Deafness Research Foundation, the American Association for Speech Language and Hearing, The Swedish Society of Medicine, and the Alexander Graham Bell Association for the Deaf. He has hundreds of publications and presentations at scholarly meetings, and has been an invited speaker to more than 35 countries. He also serves on many national and international advisory groups for organizations such as the United States Department of Health and Human Services, the World Health Organization, the Institute of Medicine, and the American Academy of Pediatrics.       ASHA DISCLOSURE: Financial - No relevant financial relationship exist. Nonfinancial - No relevant nonfinancial relationship exist.