Advocacy

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 Federal Level

The National CMV Foundation is excited to announce that bipartisan federal legislation has been introduced in the United States Senate and House to improve early detection and research for congenital Cytomegalovirus (cCMV)!
 
The Stop CMV Act has been introduced in the US Senate by Senators Richard Blumenthal (D-CT), Chris Murphy (D-CT), and Roger Marshall (R-KS) and in the US House by Representatives Mike Lawler (R-NY) and Greg Landsman (D-OH). Specifically, the bill authorizes funding to states for hospitals and other healthcare entities caring for infants to administer congenital CMV tests and encourages state healthcare agencies to prescribe standards and procedures for the administration of these tests. The bill also creates grant programs to provide funds to administer CMV tests, improve cCMV data collection systems, and assist in cCMV education and training. Lastly, the bill advances National Institutes of Health research for screening techniques, diagnostics, prevention, vaccines, and treatments.

The Senate version of the bill (S.3864) is available here. The House version of the bill (H.R.7542) is available here.
 
The Foundation has worked with other advocates for several months to develop this important bipartisan legislation. Now it’s your turn to help! Please contact your Members of Congress using the template language below:

House Letter Template
Senate Letter Template
 
To find out who your Senators are, please use this link: https://www.senate.gov/senators/index.htm
To find your Representative, enter your zip code in the window on the top right corner of this web page: https://www.house.gov/
 
Please make sure you include your name and address at the bottom of your request.

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.

CMV legislation has passed in 21 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.

Screening

• Minnesota was 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.
• Connecticut is set to become the second state to screen every baby, beginning in 2025. As part of the state's budget bill, cCMV was added to to the list of newborn screening conditions in the state. The bill also requires the creation of a work group to determine best practices for universal screening.
• Eight states -- Illinois, Iowa, Kentucky, Maine, New York, Pennsylvania, Texas, and Utah require both education of pregnant women and targeted newborn screening.
• Connecticut, Florida, Iowa, Kentucky, Louisiana, New York, Texas, 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.
• New Jersey law requires CMV newborn screening to be implemented when approved for inclusion in the RUSP.
• In March 2024 the Colorado Board of Health unanimously approved a proposal from the CDPHE Newborn Screening Program to begin targeted screening for cCMV using the newborn dried blood spot.
• In 2024 Florida passed additional legislation that requires premature babies to be screened for CMV.

Education

• Eleven states require the state to educate the public and professionals about congenital CMV: Colorado, Hawaii, Idaho, Illinois, Iowa, Kentucky, Minnesota, Nebraska, New York, Oregon, Texas, Utah.
• New Jersey requires the Commissioner of Health to establish a public awareness campaign. 
• Tennessee requires health care providers to educate women of childbearing age.
• Education program: Washington state

Proposed Legislative Mandates

• Universal Newborn Screening: Indiana, Massachusetts, Mississippi, and New Hampshire.
• Education and Universal Newborn Screening: Michigan
• 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!