Thursday, December 11, 2014

How to Get Congenital CMV Bill Started in Your State

Get Utah's Congenital Cytomegalovirus (cCMV) bill passed in your state/territory.

Now is the time to start. This blog post includes what to say and what papers to give/email your representatives.
Contact your House and Senate representatives and ask them to present a bill similar to Utah's to their Public Health Committee.  Click here to find your state/territory website: Congenital CMV and Your State/Territory Representatives. Your state's website will also have a link showing you how a bill becomes a law. (After you contact your own House and Senate representative, you will want to start the work of gathering the email address of every representative in your state.)

I got a lot of initial advice on who to reach and how from my Town Clerk (the person who issues marriage and dog licenses). Gather a team of people in your state and cCMV experts willing to be contacted. Get ideas of who to collaborate with from here: Congenital Cytomegalovirus (CMV) Contacts for Connecticut, Utah and U.S.

When possible, it's always best to see your representatives in person, but for those caring for a critically ill child, that's almost impossible so e-mails and calls will do (calls are great if you can do it because they/their staff will be forced deal with you and will start talking about cCMV to each other if they get a lot of calls from your friends and family).

I just met with my newly elected representative (who takes office in Jan. 2015) and handed him a little paper folder (with pockets for his convenience) with the most important information, including what it costs our state to take care of children disabled by congenital CMV. Representatives need to know this so they can explain why it's worth spending some money to see this bill pass. He will now write up the bill and present it Connecticut's Public Health Committee. If the Public Health Committee passes it after hearing/reading testimonies, then the House of Representatives will vote on it, and if they pass it, then the Senate will vote on it. If the Senate passes it before the end of the session (my Senate didn't vote it so I have to start this ALL OVER AGAIN with the Public Health Committee in 2015), then the Governor has to sign it into law for it to become a law.

This is what your state really wants to know (but may be afraid to ask you):

What is the annual cost of caring for children disabled by congenital cytomegalovirus (cCMV) in the U.S. and by state? According to researchers and the Institute of Medicine, the annual cost of cCMV is $1-4 billion. Using a conservative $1 billion per year, the following calculates cost per child (which varies with severity of disability). In 2012, 3,952,841 were born in U.S. with 1/750, or .0013, disabled by cCMV = 5,139.  Annual cost per disabled child = $1,000,000,000/5139 or $194,590/year/child.

Annual cost of cCMV by state: x births (X) .0013 cCMV disabled = x children born disabled by cCMV (X) $194,590/year/child= $x annually to care for  children disabled by congenital cytomegalovirus. 

(Example--ANNUAL COST FOR CONNECTICUT: Annual cost of caring for children disabled by congenital CMV in CT: 36,359 births X .0013 cCMV disabled = 47 children X $194,590/year/child= $9,145,730, or over $9 million annually to care for cCMV children.)  The other thing your representative wants to know is will you gather your friends and family to testify (through writing or by appearing at your state capitol) at the Public Health Committee hearing meeting?

Your representatives want as little paper as possible, so I boiled it down to the questions I was asked most last year when I tried to get this bill passed in Connecticut. Here is a pdf  of my PowerPoint on what I did and how you can do it--includes advice on how you can get started, sample letters to politicians, what worked and what didn't work plus how I got the media to help me move the state forward. Just so you understand where I'm coming from, I'm the mother of Elizabeth who struggled with the effects of congenital cytomegalovirus (cCMV) until she died at age 16 in 2006 (Elizabeth's life with her big sister and a series of dysfunctional pets--until a homeless old dog came to her rescue-- is told in my memoir, Anything But a Dog! The perfect pet for a girl with congenital CMV).

The following are the type of documents you want to give your politicians and/or media (revise some of them to fit you/your state):

  • News Release:Message to CT Politicians (can be tweaked to your circumstances/state to send out to the media in your area)

  • One Page cCMV Fact Sheet plus Bibliography by Lisa Saunders (this includes live links so you can find how many children are born in your state to plug into my formula--reviewed by doctors-- to come up with an approximate figure on how much cCMV disabled children are costing your area).
  • Chart of cCMV compared to other causes of disabilities


     cCMV PRINTABLE BROCHURES for daycare providers, doctors and parents from Utah Health Department's Children's Hearing and Speech Services (your health department will appreciate seeing that another department has already composed the needed brochures--all they have to do is put their own state info in them).

  • Passed bill: Utah’s H.B. 81
  • For additional help, see this advice from Utah--the state that actually got a cCMV bill passed.

    God bless us everyone in 2015!


    Lisa Saunders
    PO Box 389
    Mystic, CT 06355

    No comments: