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Advocacy

Advocacy in Action

Cytomegalovirus, or CMV, is a public health issue. To advance our purpose, we support a policy agenda aimed at ensuring access to education for women of childbearing age, accelerating research funding, screening newborns for congenital CMV, and advocating for a vaccine.

Congenital CMV infection is largely undetected because the majority of affected infants are asymptomatic at birth. Recent evidence suggests that routine screening of newborns could allow infected infants to receive consistent monitoring and treatment, if necessary, ultimately increasing his/her chance of optimized developmental care. 

We are proud to share that we submitted a nomination to the Recommended Uniform Screening Panel (RUSP) in late March 2019. Details regarding our RUSP application, position, and next steps are up on the blog

Our Legislative Goals

  • To educate families and women of childbearing age, general public, healthcare providers, and departments of health about congenital CMV
  • To implement a national program to screen every newborn for congenital CMV
  • To increase funding for CMV research and clinical advances in treatment and interventions
  • To advocate for vaccine development

At the State Level 

Empowered CMV families from across the nation have teamed up with professionals and politicians in several states in hopes of making a difference with CMV legislation!
 
For example, did you know that your Council or Mayor signs proclamations or declarations recognizing awareness months? June is CMV Awareness Month and several cities/towns/counties/states have executed these proclamations establishing CMV recognition. Addressing CMV education through public policy serves as a great opportunity to get to know your local politicians and can provide greater access to resources and funding for CMV awareness. Learn more.

A means for CMV legislation has effectively passed in 18 states, with additional states in progress. Congratulations to our parent advocates, ardent supporters, and state sponsors for your perseverance in pushing these bills through!

Advocate with us! You have the power to call for action. Learn more about how you can help inform public policy.

CMV-U.S.-Legislation

Summary of Final Legislative Mandates
  • UNIVERSAL SCREENING: Minnesota is the first state to enact universal newborn CMV screening. In June 2021, The Vivian Act passed bipartisan legislation and was signed into law. The bill called for funding to educate healthcare providers and expecting mothers about congenital CMV, and recommended that the state Advisory Committee on Heritable and Congenital Disorders discuss adding cCMV to the newborn screening panel. On January 11, 2022, the MN Newborn Screening Advisory Committee voted 16-3 in favor of adding cCMV to the state bloodspot panel. On February 2, 2022, the state Commissioner of Health approved this recommendation and Minnesota will begin implementing the addition of CMV to its newborn screening program. Read the full release here.
  • Seven states -- Illinois, Iowa, Kentucky, MaineNew York, Pennsylvania, and Utah require both education of pregnant women and targeted newborn screening.
Education
  • Eleven states require the state to educate the public and professionals about congenital CMV: ColoradoHawaii, Idaho, Illinois, Iowa, Kentucky, Minnesota, Nebraska, New York, Oregon, Texas, Utah.
  • New Jersey requires the Commissioner of Health to establish a public awareness campaign. Newborn CMV screening will be implemented when approved for inlcusion in the RUSP.
  • Tennessee requires health care providers to educate women of childbearing age.
  • Only Utah has legislation that is accompanied by ongoing funding ($70,000 per year).
Screening
  • Connecticut, Florida, Iowa, Kentucky, New York, Utah, and Virginia require each newborn that fails the newborn hearing screening to be tested for congenital CMV.
  • Illinois requires that a CMV test be offered to the parents of every child who fails the newborn hearing screening.
Proposed Legislative Mandates
  • Universal Newborn Screening: Indiana and Massachusetts.
  • Education: Michigan.
  • Other:
    • In 2017, Maine proposed universal newborn CMV screening. While the legislation did not pass, the legislature established a committee to investigate universal CMV screening to provide a recommendation to the state in 2018. Please read the full findings here. In 2022, Maine passed LD 1747 stating that every infant that fails two hearing tests or displays other factors indicating potential cCMV, must mandate a test. The bill also directs the Department of Health and Human Services to work with stakeholders to educate pregnant people on the risks of CMV and to increase prevention efforts statewide. The Maine CDC is tasked with developing a screening program that includes gradual expansion from targeted+ newborn testing to universal testing. Full press release here.
    • Taking a cue from Maine, California proposed establishing a commission on cytomegalovirus public education and testing. This commission would identify potential public educational resources to inform pregnant women and women who may become pregnant about CMV and would identify children born with CMV in order to improve their health and developmental outcomes. AB1801 passed unanimously in both the Assembly and Senate late August 2018 but was rejected by the Governor in September due to the high-costs associated with establishing a new commission.
Effective legislation requires multiple stakeholders working together in advance of and beyond changing policy. We are just getting started!

Are you interested in learning more about CMV advocacy and public policy? If so, please email us at advocacy@nationalcmv.org and review our advocacy toolkit to begin!

 
There is so much I want to do; I just need to figure out how to do it in this body that I cannot necessarily control. But just you wait— you are going to be amazed at what I will be able to accomplish! I won't let CMV get me down.
— Heather, Mother