By Anne Edwards, MD, FAAP, chair of MNAAP’s Policy Committee…
With just a few drops of blood from a newborn’s heel, Minnesota’s newborn screening program has been credited with detecting more than 50 types of treatable disorders in hundreds of babies across the state. Early detection has meant the difference between life and death for many babies and their future siblings. In fact, the CDC recognizes newborn screening as one of the 10 greatest public health achievements in the 21st century and many experts have cited Minnesota as the “gold standard” for the rest of the country.
But a new law is threatening the future of this life-saving program in Minnesota — and MNAAP members are taking action.
Until recently, the Minnesota Department of Health (MDH), which oversees the program, had been allowed to preserve blood spot cards and maintain data (test results) on every baby born until they reached their 18th birthday or longer. That time period allowed physicians and specialists to refer back to the test when necessary and avoid re-testing for certain conditions. In addition, remaining blood spots and test results were used to evaluate disease trends and improve medical quality and research to ensure that Minnesota has the strongest screening program possible.
To comply with new legislation passed last year, however, MDH must now destroy almost all blood spots within 71 days and test results within 2 years for babies born since November 2011, unless a parent authorizes extended storage of the results and data through MDH.* This is a troubling setback for a program that has succeeded at improving the health of thousands of children.
Essentially, this means the blood spot cards of almost all the newborns in your practice will be physically destroyed within 71 days of birth. The only exception is for babies with presumptive positive results. Their blood spots will be purged after just 2 years, eliminating any possibility of future testing on their spot.
Even more important, all test results will be destroyed by a child’s second birthday. This is the data — not the blood spot — that will be destroyed. The two are separate entities. Consequently, no record will exist to show that the test was even done at MDH.
Destruction of test results is set to begin on November 16, 2013.
These timeframes are exceedingly short and are posing a number of disturbing consequences to families and providers. First and foremost, 71 days is often not long enough to provide enough time to complete testing and/or confirm a diagnosis on some conditions. As a result, treatment may be delayed and babies may need to be re-tested unnecessarily. If a child happens to die during that time period, the newborn blood spot will not be available for further testing.
Second, providers (and families themselves) may need to contact MDH to confirm the results of a test or to verify that testing even took place. Under the new law, unless parents have expressly given consent for extended storage, MDH will destroy all newborn screening results two years after birth– whether positive or negative. This means providers and families with children born after November 2011 will no longer be able to contact MDH after a child’s second birthday to access the results of his or her newborn screening test or verify that testing indeed took place.
These new timeframes and rulings are the result of legislative and privacy advocate concerns that parents were not given adequate education and consent opportunities for their participation in the program. But the new requirements may create administrative hurdles and parental confusion resulting in a decreased participation rate.
The new law is a defeat for babies, families and providers across the state. The bottom line is that the information collected through this program saves lives. Before lawmakers dismantle elements of this program, we need to clearly understand the impact those changes can have on life-saving health care for children. MDH has been required by the legislature to prepare a report on the impact of these changes by the 2014 session.
The MNAAP will continue to explore every legal option available to halt or delay the destruction of test results set to begin November 16. We’ll also be mounting a vigorous and concerted effort in the halls of the Capitol to change the underlying law that set the arbitrary and dangerous time frames under which MDH is working.
But we can’t do it alone. We need your help. We hope you’ll watch for future emails and other communication streams showing how you can take action. And then stand with us as we advocate against the destruction newborn screening spots, results and the program as a whole.
Our newborns and our children deserve nothing less.
*The only exception to this ruling is for children born between July 1, 1997 and November 15, 2011 whose blood spots are protected by a court order for litigation purposes.
