By Anne Edwards, MD, FAAP, chair of MNAAP’s policy committee…
In the midst of all drama and sports analysis of the Super Bowl of late, it seems fitting to speak of offense and defense.
As someone who has spent her fair share of time in legislators’ offices or testifying in front of legislative committees on behalf of our children and their health, I am thrilled to share with you a subtle but important shift as we approach the 2014 session. This year is different in one key way: We’re on offense.
Far too often in past legislative sessions, the MNAAP has been forced to play defense. We spent our resources battling proposals that were bad for our patients. From legislation to prohibit physicians from asking about firearms in our patients’ homes to defeating efforts to repeal the state’s minor consent laws that allow us to provide care to our young patients, the MNAAP has been at the Capitol working to defeat damaging bills. That is incredibly important work, but it often felt defeating to always be reacting to the dangerous agenda of others.
This year is different. With the start of the legislative session on Tuesday, February 25, we will be at the Capitol actively and proactively pushing our own legislation to protect our youngest patients. We’ll be focused on renewing our Newborn Screening Program.
This life-saving program has been subject to dangerous changes since a 2011 Minnesota Supreme Court decision and subsequent legislative action.
Our message to legislators is a simple one, and can be summed up simply:
1. RESTORE. Minnesota’s newborns are being harmed by recent changes to newborn screening. Minnesota is the only state that destroys newborn screening data soon after birth, putting babies and families at risk.
2. SAVE. Storage of blood spots and data assure proper diagnosis and timely follow up for critically ill children. Additionally, storage supports quality improvement and the development of new tests that lead to life-saving treatments.
3. LEAD. If given the opportunity, Minnesota’s newborn screening program can once again serve as a national leader in saving as many lives as possible from death, disability and impairment.
At the risk of mixing my sports metaphors, we’ll need a “full court press” in 2014 to be successful. But to win, pediatricians have to be part of the game plan. MNAAP members need to pick up the phone or craft an email to your elected official to explain how this program saves lives. While visiting with legislators can be intimidating, no one understands this issue better than us. Stay tuned for opportunities to lend your support to our shared effort on behalf of our patients.
We’re in a new position at the Capitol this year. As advocates for children, defeat is not an option — we have a very real opportunity to reverse the damage already done.
I, for one, think it feels good to have the ball in our hands for a change.
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Newborn Screening by the Numbers
5,000newborns have screened positive since the program’s beginning and have been saved from death or permanent disability
134newborns screened positive in 2013 and were saved from death or permanent disability
71 days until a negative blood spot is destroyed; not enough time to complete testing or follow up in some cases
2 years until a positive blood spot and all test results are destroyed; they are unavailable for future analysis or reference
2 newborns are expected to test positive for SCID in 2014
unknown number of newborns were missed for SCID during 2010-2013 because the test was delayed due to unavailability of blood spots…which must be destroyed after 71 days.
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Stay Informed
To learn more about MNAAP’s efforts in this area,
email cairns@mnaap.org or visit www.mnaap.org/
newbornscreening.html for the latest updates and fact sheets.
Get Involved
MNAAP is working with Rep. Kim Norton and Sen. John Marty to draft legislation to restore Minnesota’s newborn program. Watch for opportunities in the coming weeks to view the bill and express your support. Email cairns@mnaap.org to discuss specific ways to lend your support.
