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Save Newborn Screening in Minnesota and Help Save Babies' Lives!

 
There are finance bills in the Minnesota (MN) Legislature that put the Newborn Screening (NBS) program at significant risk.  Your help is urgently needed. We need to make sure the NBS program is protected before these bills have a chance to become law.
 
Newborn Screening allows babies to be diagnosed in time to be treated for rare medical disorders.  Since the babies appear to be healthy at first, it’s vital that all babies be screened before irreversible and damaging symptoms start to appear.  The Minnesota NBS program tests for dozens of disorders, including Sickle  Cell, PKU, and Cystic Fibrosis.
 
The original MN Senate bill (SF1017) is scheduled Monday to be added as amendment to a finance bill (SF760).  This amendment appears to make the NBS program “opt-in”, meaning that only parents who know to ask for Newborn Screening for their baby will receive it.  This will cause some babies to suffer and become disabled, and some will die.  
 
In addition, the bill prevents storing the NBS blood spots for future use.  This will keep MN from participating in studies to develop newborn screening test for additional diseases like muscular dystrophy, Fragile X syndrome, and many more.  NBS blood spots are also needed for lab certification.  Without proper certification the lab in Minnesota would have to close.  We can’t let this happen!

The bill also creates a conflict with CLIA regulations and may put the state lab at risk of losing its CLIA certification.
 
Newborn screening is an amazing program that saves countless tiny lives every year. Don't let Minnesota' babies suffer!  
 
Here are three ways you can help: 

1.      Sign this petition and tell the Minnesota legislators to put babies first! You don't have to be a Minnesota resident to sign it.  Save Newborn Screening in Minnesota and Help Save Babies Lives!  http://www.change.org/petitions/put-babies-first-save-minnesotas-newborn-screening-program?share_id=XHdQTqcMpP&pe=pce 

    
2. Call and email MN legislators and the Senate and House Health Committee members who are in favor of this legislation and tell them that you oppose SF1017 and its inclusion in SF 760.  If you get a chance, let us know how your calls go.

If you live in MN, find out who represents you by going to:  http://www.leg.state.mn.us <http://www.leg.state.mn.us/>  and scroll down to “Who Represents me”.
 
Here are the Senators who serve on the Senate Health & Human Services committee and are likely in favor of the bill.  They need to hear from you right away that MN babies’ lives are at stake:
 
·         Chair:  Senator David Hann (chief author of SF 1017) – 651-296-1749.  He prefers his email go through the online system (http://www.senate.mn/senatorhannemail)
·         Senator Michelle Benson, 651-296-3219, sen.michelle.benson@senate.mn
·         Senator Dan Hall, 651-296-5975, sen.dan.hall@senate.mn
·         Senator Gretchen Hoffman, 651-296-5655, sen.gretchen.hoffman@senate.mn
·         Senator Scott Newman, 651-296-4131, sen.scott.newman@senate.mn
·         Senator Sean Nienow, 651-296-5419, sen.sean.nienow@senate.mn 
 
Here are the Representatives who serve on the House Health & Human Services Finance Committee who are likely in favor of the bill and need to know right away that MN babies lives are at stake:

Committee chair, Jim Abeler, 651-296-1729, rep.jim.abeler@house.mn 
·         Representative Bruce Anderson, 651-296-5063, rep.bruce.anderson@house.mn
·         Representative Mary Franson, 651-296-3201, rep.mary.franson@house.mn
·         Representative Steve Gottwalt, 651-296-6316, rep.steve.gottwalt@house.mn
·         Representative Rod Hamilton, 651-296-5373, rep.rod.hamilton@house.mn
·         Representative Morrie Lanning, 651-296-5515, rep.morrie.lanning@house.mn
·         Representative Kathy Lohmer, 651-296-4244, rep.kathy.lohmer@house.mn
·         Representative Tara Mack, 651-296-5506, rep.tara.mack@house.mn
·         Representative Joe McDonald, 651-296-4336, rep.joe.mcdonald@house.mn
·         Representative Carolyn McElfatrick, 651-296-2365, rep.carolyn.mcelfatrick@house.mn
·         Representative Joe Schomacker, 651-296-5505, rep.joe.schomacker@house.mn


3. Join other Newborn Screening Advocates at the capital in St. Paul on Tuesday, April 12 at 10AM.   Your voice is needed!  
 
For more details contact: 

Marianne Keuhn
State Director of Programs & Public Affairs
March of Dimes
952-835-3033
Mkeuhn@marchofdimes.com