Navigating the Costs of Congenital CMV Care: What Families Should Know

Navigating the Costs of Congenital CMV Care: What Families Should Know

Author: Amanda Devereaux RN, Debra Ellis BSN, Gina Liverseed RN and Megan Pesch MD

As more states adopt congenital CMV (cCMV) newborn screening, families are gaining access to earlier diagnosis, timely monitoring, and supportive care. But for some, the excitement of having answers is quickly overshadowed by an unexpected challenge: medical costs.

While many parents assume that all testing and follow-up care for a congenital condition will be fully covered by insurance, this isn’t always the case, especially for families with high-deductible plans, large co-pays, or limited coverage for specialty services. In Minnesota, where universal cCMV screening was implemented in 2023, these issues have unfolded for families over the past 3 years. And now, families in Connecticut, where statewide screening began in summer 2025, are encountering similar challenges.

Some families are already reporting financial strain. Several parents have voiced frustration with insurance co-pays, and one mother shared that she has already received bills totaling more than $1,000. Many families are surprised to learn that most available financial supports are geared toward children with significant medical needs, such as hearing loss or developmental delays, leaving a gap in assistance for infants who screen positive for cCMV but show no symptoms. Barriers encountered vary by insurance plan, but often include:

• High out-of-pocket costs for newborn work-ups
• on-coverage of follow-up tests, particularly audiology evaluations for asymptomatic infants
• Unexpected charges when birth occurs in one insurance year and the cCMV work-up in the next, causing deductibles to reset
• Confusion about billing codes or how the diagnosis was submitted to insurance

These challenges place families in a difficult position: wanting to complete all recommended tests to protect their child’s health, while facing bills that can feel overwhelming or unclear.

Parents have also raised concerns about the number and timing of early appointments. In the postpartum period, when coordinating childcare and travel is already tricky, frequent specialty visits can feel overwhelming. A few mothers noted that they were not yet cleared to drive, making logistics even more challenging.

These experiences highlight the importance of recognizing not only the clinical benefits of universal screening but also the practical and financial realities families face.

Why Billing Codes Matter

One of the most helpful steps parents can take is to confirm that their child’s healthcare team is using the correct ICD-10 code when submitting claims. For congenital CMV, the diagnosis code P35.1 should be included. Without it, insurance may deny coverage or classify testing as “routine” rather than medically necessary.

Families can ask:

• “Can you confirm that P35.1 was included when this test or visit was billed?”
• “If not, can the claim be re-submitted with updated information?”

In several cases, parents have successfully resolved billing issues simply by requesting this correction.-

Understanding (and Appealing) Insurance Decisions

When a bill doesn’t make sense, asking questions is crucial. Parents can contact their insurer to ask:

• Why was this service not covered?
• Is additional documentation needed?
• What is the process to appeal this decision?

Staying in regular contact with your insurance company can help you understand what tests, treatments, and referrals will be covered, and what costs you may need to prepare for. Always verify coverage for anything ordered by your child’s primary care provider (PCP) or specialist, and keep a record of who you spoke with, when you called, and what was discussed. Monitoring the status of claims and following up on delays can also prevent unexpected bills.

If a service is denied because the insurer considers it “not medically necessary,” reach out to the ordering provider’s office. Their staff can often start a “prior authorization” or appeal on your behalf. And if something isn’t clear, never hesitate to ask for clarification. Many families have successfully appealed denials by sharing state screening information or national audiology guidelines. While the process can feel overwhelming, you don’t have to navigate it alone.

Connecticut , Minnesota and Michigan are now working to create guidance for families on how to approach insurers about costly co-pays and coverage confusion. Connecticut is also updating its parent and provider communication to notify families about potential costs up front. One mother shared that she wished she had known in advance that follow-up visits would carry fees because that information would have influenced how she prepared for early appointments.

This is a delicate balance: providers want families to complete every recommended test without hesitation, yet transparency about cost is essential for informed decision-making.

Shared Decision-Making With Providers

Experts emphasize that shared decision-making is essential when determining which tests a baby needs at birth and throughout early childhood. Ideally, providers and families work together, balancing clinical guidelines, medical urgency, and financial considerations.

Families can ask:

• “Which tests are essential today, and which could be timed differently?”
• “Are there lower-cost options or alternate referrals?”
• “Can this be scheduled after I confirm coverage with insurance?”

Open communication not only empowers families but also helps them navigate the realities of postpartum life and medical decision-making.

Where Families Can Turn for Support

Many states have community organizations that help families understand insurance systems or advocate for coverage. In Minnesota, the PACER Center (pacer.org) offers assistance, and parents in other states may find similar supports through family advocacy groups, hospital-based financial navigators, early intervention programs, or nonprofit organizations.

As more families speak up about their experiences, the need for more transparent communication, more consistent insurance practices, and accessible family support becomes even more evident.

You’re Not Alone

The National CMV Foundation remains committed to helping families access the care they need without unnecessary financial stress. While insurance systems can be confusing and sometimes discouraging, many families have successfully lowered or eliminated unexpected costs through advocacy, appeals, and communication with their care teams.

If you’re facing challenges related to cCMV testing or follow-up care, remember:

• Talk openly with providers
• Ask about billing codes
•  Request detailed explanations from insurers
• Seek help from advocacy organizations
• Explore the appeals process if needed

As universal screening expands nationwide, shared stories and collective advocacy will help identify gaps, inform policy improvements, and ensure that every child diagnosed with cCMV receives timely, accessible, and affordable care.