Newborn Screening Saves Lives

Canada’s newborn screening system is fragmented across the provinces and territories. Many highly treatable conditions are not tested for at birth. This has resulted in many Canadian children not having access to lifesaving treatment. Too many Canadian children have died or have been subjected to a life of painful disability as a result. Screening for life-threatening conditions should not depend on your postal code. Canada needs a national newborn screening system, including all conditions with qualified treatment.

For example, adrenoleukodystrophy has had a valid test for over a decade since the introduction of Aiden’s Law in New York, thanks to the tireless efforts of Elisa Debellis Seeger and the ALD Alliance/Aiden Jack Seeger Foundation. Adrenoleukodystrophy is treatable with stem cell transplant and gene therapy. There is no excuse for Canada not to add this life-saving test to the nationwide newborn screening panel and many other conditions that can be treated if caught within the necessary timeframe.

Failure to add these conditions to the newborn screening panels across the provinces and territories has resulted in a death sentence for many Canadian children. These deaths are preventable.

How You Can Help

Please sign the petition below to advocate for adrenoleukodystrophy to be added to the newborn screening panel across Canada and for a national newborn screening program to ensure equity of access to treatment for all Canadian children. (PLEASE ONLY SIGN IF YOU ARE A CANADIAN CITIZEN).