​Why Zip Code Shouldn’t Dictate a Child’s Future: The Case for the Stop CMV Act

​Why Zip Code Shouldn’t Dictate a Child’s Future: The Case for the Stop CMV Act

Author: Andy Jones, President, National CMV Foundation

Every June, communities across the country come together for National CMV
Awareness Month. We share stories, we wear ribbons, and we educate families about
congenital cytomegalovirus (cCMV)—the most common congenital viral infection in the
United States.

But as we amplify our voices this month, we must confront a harsh, unjust reality: Too
often, a baby’s chance of receiving care that could prevent harm from cCMV, like
permanent hearing loss or developmental delays, depends on where they are
born.

In the United States, geography has become destiny for newborns exposed to CMV.
Our current patchwork system of state-by-state, and sometimes hospital-by-hospital,
policy is leaving too many children behind. It is a critical gap in our healthcare
system—one that federal legislation like the Stop CMV Act is uniquely equipped to fix.

The Broken Patchwork of cCMV Screening
Imagine two babies born on the exact same day, both carrying cCMV.
 Baby A is born in a state with active, progressive screening laws. Because of
these mandates, they are screened early, identified immediately, and fast-tracked
into early interventions. If they show signs of hearing loss, they may receive
antiviral treatments or rapid access to speech and language therapies that
preserve their development.

 Baby B is born just one state over, where no such mandate exists. Their cCMV
goes unnoticed. Months or years down the road, when they miss milestones or
fail later hearing tests, the damage is already done. The window for optimal early
intervention has closed.

This isn’t a hypothetical scenario. It is the reality of our current landscape. A few states
have implemented universal or targeted screening (testing newborns who fail their initial
hearing exams), but the vast majority of the country has no uniform protocol.
cCMV affects roughly 1 in every 200 babies born in the U.S. and is the leading non-
genetic cause of childhood hearing loss. Yet, because of fragmented policies, missing
this diagnosis means missing the chance to prevent progressive hearing loss, severe
developmental delays, and a lifetime of avoidable hardships for families.

The Power of Federal Action: The Stop CMV Act
We cannot build a fair health system on a foundation of geographic luck. A baby’s right
to a healthy start in life shouldn't change when you cross a state line. This is why the
National CMV Foundation is fiercely championing federal intervention.

The bipartisan Stop CMV Act is a vital piece of legislation designed to eliminate these
geographic disparities. If passed, the bill would:
 Support states as they implement newborn screening programs for cCMV
 Invest in research to improve testing, interventions, and treatment
 Expand prenatal education so every family has the knowledge to reduce
their risk
A federal standard ensures that every hospital in America is equipped with the tools to
catch cCMV early. It shifts our strategy from reactive damage control to proactive,
preventative care.

Moving Beyond Awareness to Action
Awareness is the first step, but action is what saves a child's hearing, development, and
future. This CMV Awareness Month, we need to look beyond individual education and
demand systemic change.

We need to tell our lawmakers that when it comes to infant health, equity is non-
negotiable. No family should have to look back and realize their child’s developmental
delays could have been prevented if they had simply given birth in a different zip code.

How You Can Help This Month
The Stop CMV Act needs your voice to gain momentum in Congress. Here is how you
can take a stand with the National CMV Foundation today:

1. Contact Your Representatives: Use our one-click grass-roots advocacy tool at
cmvadvocacy.org to send a pre-written message directly to your U.S. Senators
and Representatives urging them to co-sponsor and support the Stop CMV Act.

2. Share the Message: Share this post on social media using the hashtags
#CMVAwarenessMonth and #StopCMV. Tell your network why uniform federal
screening matters.

3. Donate to the Cause: Support the CMV Policy Coalition. Your contributions fund
the experts, congressional briefings, and advocacy tools required to keep CMV at
the forefront of national health priorities.

Every baby deserves an equal chance at a healthy life, no matter where their story
begins. Let’s make this the June we turn awareness into lasting structural change.