Every parent hopes and dreams for a happy, healthy child. Unfortunately, those dreams don’t always come true. Sometimes children are born with serious conditions that impact their health, but if caught early, many can be treated and the severity lessened. Since the newborn-screening program began, more than 5,000 children have been saved; children like Zak and Ella. Thanks to newborn screening, Ella was diagnosed early with Cystic Fibrosis (CF) and because the blood spots and test results were saved, doctors were also able to diagnose her older brother with CF when he became sick.
The Newborn Screening Program tests newborns between 24-48 hours after birth for more than 50 rare, life-threatening disorders; disorders that if left untreated, can result in illness, physical disabilities, learning and developmental disabilities, hearing loss or even death. Yet early treatment and diagnosis, medications, and/or changes in diet can prevent or lessen the impact of most of these health problems.
Two years ago, changes were made to the program that drastically altered the amount of time blood spots and test results could be retained. Now, after only 71 days parents and providers no longer have access to blood spots, despite the fact that testing can often take up to six months or longer to confirm a diagnosis. After two years, parents have no access to data (unless they make a special request) and therefore lose the ability to access that critical information for the purposes of retroactive investigation or sibling comparisons. And lastly, these changes mean that the department of health cannot use de-identified information for research to create new life-saving tests.
This year, legislation is being proposed to return Minnesota’s Newborn Screening program back to the nation-leading one it once was. House File 2526/Senate File 2047 would allow parents to store their children’s blood spots and test results indefinitely, preserving access to the life-saving information they need. We owe it to our kids, their parents and our communities to strengthen programs that can be used to not only save lives but to protect those in the generations to come.
Until further legislative changes take place, parents can request to have their blood spots and test results retained for a longer period of time on the Minnesota Department of Health website.
You can help restore Minnesota’s Newborn Screening Program to its nation-leading status by calling members of the Senate Judiciary committee by Thursday, March 20th, 2014 at 5 p.m. and asking for their support of the Newborn Screening bill, H.F. 2526/S.F. 2047.
Calling is easy and it just takes a minute! (Phone numbers below). If you are a constituent of the person you call, make sure to let them know! Look up your legislators and compare them to the list below. Here is a sample of what you can say:
My name is [your name] and I am calling to ask for Representative [last name]‘s/Senator [last name]‘s support of the Newborn screening bill, H.F. 2526/S.F. 2047.
This bill will allow parents and families to have access to the newborn screening spots and test results for a longer period of time, allowing for follow-up care re-analyses and sibling comparisons. I support this bill because it will help all children have the best chance for a healthy start in life. I hope [Legislator's name] will support it as well, by voting in favor when the bill is heard in committee.
Once you call committee members, send a note to Katie Rojas-Jahn at Katherine.Rojas-Jahn@childrensmn.org to let us know you took action.
Here’s who to call:
Senate Judiciary committee members
Chair: Senator Ron Latz 651-297-8065
Vice Chair: Senator Barb Goodwin 651-296-4334
Senator Warren Limmer 651-296-2159
Senator Bobby Joe Champion 651-296-9246
Senator Dan D. Hall 651-296-5975
Senator Kathy Sheran 651-296-6153
Senator Kari Dziedzic 651-296-7809
Senator Scott J. Newman 651-296-4131