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9/08/2025  |   2:00 PM - 3:00 PM   |  Breakout 2   |  Thomas H. Swain

The Colorado cCMV Work Group: An Advocacy Journey

Abstract Summary

The Colorado cCMV Work Group is a collaboration between the American Academy of Pediatrics Colorado Chapter (AAP-CO) and Colorado Hands & Voices. The 35 to 50 active participants attend virtual meetings 3 or 4 times a year, including primary care pediatricians, pediatric hospitalists, neonatologists, pediatric ID and ENT specialists, audiologists, deaf/hard-of-hearing (D/HH) support staff, state health department and EHDI staff, and parents of children with cCMV. Over the past 7 years, the group has created handouts on cCMV for families and pediatric providers, posted an array of resources on the AAP-CO website, created a cCMV Family Network, given dozens of presentations at birth locations across the state, created a video on cCMV prevention for distribution through social media and live educational sessions, helped secure a CDC cCMV surveillance grant, seen cCMV become a reportable condition, and helped the state lab begin screening for CMV using the newborn dried blood spot. This session will detail this advocacy journey and lead a discussion of how such work might be replicated in other places. In a Power Point presentation, sample handouts will be shared, the 4 minute video on cCMV prevention will be shown, pros and cons of targeted versus universal screening presented, details of the rationale for dried blood spot testing discussed, and early data on cCMV surveillance presented. We will discuss several advocacy strategies, such as educating clinicians or the general public, working on hospital system policies, and engaging with the state health department. The advantages and disadvantages of policy change versus legislation will be discussed, emphasizing the importance of monitoring progress once change is mandated.

Learning Objectives

• Describe 4 different ways to educate clinicians and families about cCMV.
• List the pros and cons of targeted versus universal screening for cCMV.
• Discuss the advantages and disadvantages of advocating for policy change versus legislation to improve the identification and care of children with cCMV.

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