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Legislation

CMV Legislation

Cytomegalovirus, or CMV, is a public health issue and education is necessary. 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. 

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!
 
Addressing CMV education through public policy can provide greater access to resources and funding for CMV awareness. Learn more.
 
Legislation has effectively passed in 8 states, with additional states in progress. 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 Education
  • Six states require the state to educate the public and professionals about congenital CMV: HawaiiIdaho, Illinois, Iowa, Texas, Utah.
  • Tennessee requires healthcare providers to educate women of childbearing age.
  • Only Utah has legislation that is accompanied by ongoing funding ($70,000 per year). Idaho has proposed $15,000 per year.
Screening
  • Connecticut, Iowa, and Utah 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
  • Education and Screening: New York, Oregon, and Pennsylvania.
  • Education: Michigan and Minnesota.
  • 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.
 


Per the 2016 Congenital CMV Public Health and Policy Conference September 26-27 in Austin, TX, National CMV is working to put together an advocacy toolkit around the following topics:

Building Strategic Relationships: First steps for making political connections and leveraging your local relationships.
If you want your state political leaders to invest in CMV, you may have to invest in them first. Learn about the political process and how to get involved at a local level. This is the first step to passing and implementing CMV legislation in your states. It can be as easy as handing out candy in a parade (with your kids) or handing out brochures. These extra volunteer efforts can win you a lot of good will!

CMV Dream Teams: Who needs to be at the table to pass and implement CMV legislation?
Have you talked to your child’s doctors and specialists about getting involved in CMV advocacy? Have you connected with your State Department of Health? Or any researchers or philanthropists in your state that work on disability issues? If not, learn about strategic partners and ideas for contacting them. Build your team early so you can propose CMV legislation in 2018. Learn about the teams that have led to CMV legislation in multiple states!

CMV Legislation: Now that you’ve done the groundwork, learn about the legislative process.
Between crafting an idea for a specific, new law and the governor signing that idea into a law, there is a lot of hard work and numerous steps. Learn about the political process for a bill becoming a law and how you can start preparing to participate in those steps for your state.

Starting Local: How to ask your city/county/town to recognize June as CMV Awareness Month.
Did you know that your city/town/county Council or Mayor signs proclamations or declarations recognizing awareness months? Learn who to call and get draft proclamations and declarations to share with your local leaders. This is also a great opportunity to get to know your local politicians, who work closely with state legislators! You can also use the proclamation to leverage fundraising and other support in your community.

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

Katelyn - Arizona

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