'Heartbreaking': Alberta families describe waiting for life-changing drug to be made available in Canada

READ MORE: Family of Edmonton toddler with rare disease asking for $2.8M drug to be funded by Alberta

"Seeing that there is a treatment that could potentially stop it in its tracks, and not being able to afford it... It was heartbreaking," mother Amanda Hanki said. Novartis has offered up to 100 free doses of the drug in 2020 throughout the world through a program families apply for and are selected via random lottery.Reign, a four-year-old whose condition now requires round-the-clock breathing assistance and a feeding tube, does not qualify.

it does not cost Novartis that much to design, test,and get the drug approved. it is maybe 4 million...they are pricing it this high since it saves lives and is one dose. They know it works but they are willing to let babies die for their profits. Pharma has to change. Laws need

$billions of tax dollars go to foriegn oil companies, start knocking on their doors.

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