Minnesota constituents and all organizations and disease support groups please pay close attention to the petition below as it is imperative that the Minnesota newborn screening program be restored.  

Save Babies Through Screening Foundation’s goal is to see that every baby born in the United States is screened successfully, effectively, and comprehensively. To achieve this goal, the Foundation mission includes improving the lives of children and their families, by working to prevent disabilities and death resulting from disorders detectable through newborn screening tests.

Legislation introduced by Rep. Kim Norton, Sen. John Marty and colleagues in Minnesota shares the goals of Save Babies Through Screening Foundation and it’s partner organizations. Under the current law, the Minnesota Department of Health must destroy all newborn blood spots at 71 days of age, and all records related to the screening must be destroyed when each child reaches 2 years of age. Such actions preclude the ability of clinicians and scientists to provide comprehensive screening to families by disrupting essential components of the newborn screening system. Those retained newborn blood spots and newborn screening records allow for:

*Confirmation of newborn screening results and clear definition of the child’s diagnosis, as well as being part of the public health tracking system that assures that identified babies get essential treatment and services

*Additional or repeat testing early in life, if needed

*Additional testing to provide families with important health markers, particularly in the case of a deceased, affected child

*Development and validation of new tests based on screening of bloodspots from the target population of newborns

*Quality control and quality assurance, particularly if a child later develops one of the screened conditions, some of which have variable ages of onset and degrees of severity

*Improvement of existing tests to reduce false positive and false negative screens, thus reducing the burden on families

The recently introduced legislation will reverse changes made in 2012 to the Minnesota Newborn Screening System, allowing the program to return to its prior position of excellence among all state screening programs. The undersigned individuals and organizations strongly support the proposed legislation and encourage Minnesota legislators to enact it immediately.

As parents of children affected by these conditions and members of organizations that support these families, we know too well what late diagnosis and impediments to comprehensive newborn screening as well as research into new screening and treatments can mean to a child who has a rare condition identifiable through this program.

Please do not limit the access of your constituents to all that this life-saving program can provide.

 

Sincerely,