2023 Early Hearing Detection & Intervention Conference
March 5-7, 2023 • Cincinnati, OH
8/21/2022 | 2:45 PM - 4:45 PM | The Minnesota CMV Universal Screening Experience | Governor General III
The Minnesota CMV Universal Screening Experience
Many states in the United States have pursued legislative solutions to solve the unmet need for congenital CMV (cCMV) screening. Since 2013, 18 states have passed legislation related to cCMV. 11 of these states have addressed newborn screening for cCMV. In 2017, a parent-lead initiative was commenced to add cCMV screening to Minnesota (MN) law. Initially driven by an in-person lobbying effort by a parent, her daughter with cCMV, and the corresponding author, an initial legislative initiative, House Bill HF2653 (the “Vivian Act”), was introduced in the MN legislative session in April, 2017. This was followed by the introduction of the companion bill, SF2383, in the MN Senate. The initial bill focused on facilitating knowledge and education about cCMV, and included a “targeted screening” component for newborns with “refer” status on the newborn hearing screen. After several committee hearings, a press conference, and input from the MN Department of Health, the legislation was tabled for 2017. In 2018, the legislation was re-introduced, but was vetoed by MN Governor Mark Dayton on May 23. In 2019, a third attempt was made to move the legislation forward, but resistance at the committee level in the MN Senate precluded any additional activity for the legislation. In 2020, a fourth attempt to advance the bill was undertaken, but pressing priorities conferred by the emerging Covid-19 pandemic precluded advancement of the bill.
In 2021, a new strategy was undertaken. The reconfigured legislation was that of a universal cCMV screening bill, coupled with establishment of a program of knowledge, awareness, and education about cCMV. The bill, SF1698 (companion bill HF2421), underwent affirmative committee review and was passed by the MN Legislature on June 26, 2021, and signed by Governor Tim Walz on June 29, 2021. The legislation required the state’s Newborn Screening Advisory Committee (NSAC) to review cCMV for addition to the state’s newborn screening panel prior to implementation. The NSAC approved the addition of cCMV on January 11, 2022 and the state Commissioner of Health signed off on the addition on February 2, 2022. This addition makes MN the first state in the US to screen all babies for cCMV. This instructional session will focus on how professionals and parent advocates worked together over several years to introduce CMV legislation and advocate for its passage. Information will also be provided on the preparation for the universal screening program to begin in 2023.
- Describe the requirements of the Vivian Act, including elements that make the Vivian Act unique among state CMV legislative efforts in the USA.
- Describe strategies for state advocacy efforts to address cCMV education and screening.
- Describe three activities taking place to prepare for the implementation of universal newborn CMV screening in Minnesota.
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Presenters/Authors
Mark R. Schleiss
(), schleiss@umn.edu ;
Dr. Schleiss is a Professor of Pediatrics and holds the American Legion and Auxiliary Endowed Research Chair at the University of Minnesota Medical School. His laboratory is supported by the NIH and March of Dimes Birth Defects Foundation. He conducts research in small animal models testing vaccine strategies against congenital CMV infection. His laboratory is also engaged in the study of the epidemiology, pathogenesis and management of congenital and neonatal CMV infections.
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