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"With Ontario now funding an expensive new treatment, a two-year-old is flourishing despite his rare"

Globe and Mail

Source: Globe and Mail

Published: 26 Dec 2021

Category: Access Stories

Rating: (2½ stars)

what they said (Hover the mouse cursor over underlined words for more info)

He's not even three years old, but the words pulse oximeter roll off Isaac McFadyen's tongue, as if they are second nature. He knows the device well; it clips onto his finger and measures the oxygen in his blood. It's one of several checks done each hour he undergoes treatment for his rare disease.

But Isaac's life is not one of suffering. It is that of a preschooler thriving after receiving one of the most expensive drugs in the world -- Naglazyme -- the only treatment for Maroteaux-Lamy syndrome, an inherited metabolic disorder.

The bag of colourless medicine, not even a cupful, costs the public health-care system $5,000 to $6,000 for each weekly treatment, something he will require, in some form or another, for the rest of his life...

The original article can be found at:

how did it rate? (more information)

Criteria Rating
Total Score 3 of 6
Access to Treatment Not Satisfactory (?)
Evidence Satisfactory (?)
Benefits of Treatment Not Satisfactory (?)
Harms of Treatment Not Satisfactory (?)
Cost of Treatment Satisfactory (?)
Balance of societal versus individual perspectives Satisfactory (?)

what we said (Hover the mouse cursor over underlined words for more info)

This story about a young boy with a rare disease receiving drug therapy is pretty typical of this type of newspaper article focusing on a single case without considering wider issues around drug prices and access issues.

It seems that this article fails to interpret evidence properly or mention its strength, however given the very small number of people with the disease it would probably be very hard to do a RCT.

Although it is hard to know what quantitative measure to use in this case, it does describe changes in liver size and overall growth

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