Put Babies First: Save Minnesota’s Newborn Screening Program!
Newborn screening is now under attack in Minnesota! Provisions in the Senate Health and Human Services Finance Bill, SF 760 (and identical language in another bill, SF 1017), will make substantial changes to the Minnesota Newborn Screening program that are detrimental to children’s health. These provisions mean that babies are at risk of not receiving newborn screening. Babies with diseases that can be detected through newborn screening and who don’t get screened might die or become disabled unnecessarily! We need stop these bills to help save babies' lives! Please sign, even if you don't live in Minnesota.
Newborn screening is a test done on every baby in the country to test for certain diseases that result in death, severe mental retardation, disability or trauma if not detected early in life and treated. A few drops of blood are taken from the baby's heel shortly after birth, placed on a filter paper that is sent to states' public health laboratories for testing. These tests save the lives of thousands of babies nationwide every year by allowing the children to receive early, life-saving treatment.
A provision slipped into the Senate Health and Human Services Finance bill, SF 760 at the last minute, and in SF 1017, appears to require that parents “opt-in” to newborn screening. Every other state requires newborn screening, and it is standard of care. This appears to means that families in Minnesota will have to ask for the testing. Parents don’t ask that the child’s APGAR score be taken, that the child be weighed or that the doctor listen to the baby’s heart. Parents may not understand the importance of the test and not opt-in because they think it will save money (the cost is already included in most hospital maternity fees) or because of language differences.
The bills also require that all newborn blood spots and all records of the results of newborn screening to be destroyed immediately upon receipt of results. Since Federal regulations, the Clinical Laboratory Improvement Amendments of 1988 (CLIA), require that all laboratories keep the screening results for at least 2 years, these bills will put MN newborn screening laboratory at risk of losing its CLIA certification. If the certification is lost, the lab will have to shut down. Newborn screening could stop in Minnesota. Then no babies in the state with a screenable disease will be detected at birth, placing many babies will be at risk of severe mental retardation, disability, trauma or death.
The bills’ provisions provide that parents may choose to “opt-in” to have their newborn’s residual blood spots and screening records be stored by the State, but then only for a maximum of two years, after which the samples and records will be destroyed.
Destruction of these samples can stand in the way of verifying an accurate diagnosis, risking the lives of babies and children. This will make it impossible for the state to participate in necessary pilot studies to develop newborn screening tests for additional diseases like dystrophinopathies/muscular dystrophy, lysosomal storage disorders, certain ataxias, Fragile X syndrome, and many more. Destruction of the records will make it impossible for the state to do follow-up with a child with a screenable disease and may lead to less suboptimal care.
Currently, Minnesota parents already have the right to opt-out of the residual blood spot storage system, as well as the option to have all records of the baby’s screen and the results of the screen destroyed by the health department. A rigorous system of safeguards is already in place to ensure anonymity of samples used in research – research vital to saving babies lives! There has never been a documented case of harm resulting from a state’s storage or use of newborn residual samples.
Newborn screening is an amazing program that saves countless tiny lives every year.
Don't let Minnesota's babies suffer! Sign this petition and tell the Minnesota legislators to put babies first and preserve the Minnesota NBS Program!
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Please keep the integrity of the Minnesota newborn screening program intact.
I oppose provisions in The Senate Health and Human Services Finance Bill, SF 760 (and in stand-alone bill SF 1017) which will weaken the Minnesota Newborn Screening Program and may lead to the federal shut-down of the state newborn screening laboratory because the legislation conflicts with federal regulations for the retention of test results.
I support the Newborn Screening Program in its current form. I support mandated newborn screening without the requirement of opting-in. I also support the storage of newborn screening residual blood samples, and the use of those blood samples for research which will improve the Newborn Screening Program in order to save the lives of babies. Without a vibrant, robust Newborn Screening Program, babies and children born in Minnesota will unnecessarily suffer, become disabled, or die.
If these provisions end up in the final bill, we ask Governor Dayton to veto this bill.
Please put Minnesota’s babies first!
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