Advocating for CMV Newborn Screening Without Legislation

Advocating for CMV Newborn Screening Without Legislation

Author: Maggie Kettler, AuD

Tell us a little about the type of CMV screening that is done in your state and why it is important.

In Ohio, Targeted CMV screening has been implemented or is being implemented at most birthing hospitals.  This screening is completed on babies who refer on a second hearing screening. Many hospitals are also screening  all babies admitted to the NICU.  The CMV screening is completed before the baby leaves the birth hospital or before 21 days of life if the patient is still hospitalized.  CMV screening is completed with a buccal (saliva) or urine PCR, depending on provider preference. 

Why did you and others decide to pursue CMV screening through hospital-based initiatives rather than legislation?

From the beginning our team has been focused on why this is so important.  A timely diagnosis of cCMV leads to timely intervention.  We looked at other states and other groups to see what was successful.  Many states with legislation that has passed have struggled with implementation and other states have struggled for years in the legislative process.  Our team believes that healthcare decisions should be made by healthcare providers.  The best use of our resources is to educate and provide information to medical professionals rather than working with legislators.  We also recognized that if a mandate was passed the same provider education would be necessary, or implementation would not be successful.  In our state, like many others, these mandates are unfunded and may not detail information about education and tracking.  If a mandate passes, there is still the same need for provider support. 

How were you able to get so many hospitals on board?

We were able to identify key partners early.  This happened by knocking on a lot of doors and making a lot of connections.  Our first strategic partnership was with our Department of Health.  The Newborn Infant Screening Subcommittee and  the EHDI group within ODH provided contacts at each of the birthing hospitals.  Our team had members from the hospital across Ohio. 

We partnered with the Ohio Hospital Association and regional health collaboratives and hosted a webinar with CEUs for nurses and physicians at birthing hospitals.  This gave us the opportunity to connect with many organizations at once and spread a consistent message. 

Our Department of Health updated the information that parents receive after a failed newborn hearing screening to highlight the importance of CMV screening by 21 days of life. 

Do you have any resources that might be helpful for those who would like to see a similar initiative in their state or hospital? Who would be important to have on your team for this type of effort?

Yes-I would tell you to first reach out to your department of health and your local children’s hospitals.  It is important to get a team of professionals and support of larger organizations/institutions early. There are numerous organizations who have position statements supporting CMV screening.  Collect these resources and share them with leaders in your state.

I would also emphasize the importance of patience and persistence.  It can be challenging to find the correct people in each organization.  There are a lot of steps to move this initiative forward in large organizations.  Be willing to help each organization answer questions and get experts in different areas that can help navigate challenges.  It will not be fast and may not be easy, but it is worth it.  Our babies are worth it!


Here are some other resources advocates may find helpful:
American Academy of Audiology Position Statement
ACI Alliance White Paper
Screening Proposal

How do you or others plan to build on the successes you have achieved so far?

We have had great successes but there is still much work to be done.  Our ultimate goal is for every baby in Ohio to be screened for CMV regardless of hearing screening results.  We continue to encourage screening and educate about the importance of CMV screening.  We communicate often with birth hospitals and NICUs throughout Ohio to ensure that they are educated on best practices with cCMV.  We have also worked to partner with pediatricians, audiologists, and other people who may work with young infants to ensure that babies with cCMV receive early intervention and referrals when appropriate. 

Do you have a success story you can share regarding this work?

We consider every child that is identified with cCMV early and referred for treatment a success story.  Since our work has started, we have seen many more infants receive the diagnosis of cCMV, referred to ID and treated with antivirals.  We believe that parents have the right to know if their baby has cCMV.  We have many parents and physicians who have expressed gratitude for our work and how it helped their child. 
Just recently we had a baby that was identified with cCMV through our Hearing Targeted CMV screening initiative.  This patient left the birth hospital with follow-up appointments scheduled with Audiology and Infectious Diseases specialists.  The baby was treated with antivirals and was fitted with hearing aids by three months of age.  The mother reports that without the CMV screening she may not have followed up from the newborn hearing screening for a few months, if she followed up at all.  This early intervention will give her daughter the best chance to reach her potential!

Our group has partnered closely with the National CMV Foundation.  The dedication of the National CMV Foundation has paved the way to make cCMV screening a reality in Ohio and many states throughout the country.  They are truly the superheroes for our babies with cCMV. 

To contact Maggie, please send an email to Margaret.Kettler@cchmc.org.