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Mother Furious Over Exorbitant Drug Costs

3.0 from 46 votes
Tuesday, March 13, 2018

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A recent report by CBC News highlights the anger and frustration currently faced by some parents of children suffering from rare diseases.

One of those parents is Erin Little of Port Elgin (Saugeen Shores), whose 7-year-old daughter Olivia, suffers from a rare genetic disease called Cystinosis.

The disease basically attacks the eyes, kidneys and eventually all the organs of the body; without the life saving medication Cystagon, Olivia's body would literally begin shutting down, the disease slowly destroying her body from the inside out.

Only about 75 children in Canada and 2,000 worldwide suffer from this particular disease.

Now, Olivia will be forced to switch to a newer drug recently approved by Health Canada, even though the pricing of the new drug (Procysbi) has yet been set.

However, the new drug is expected to jump by 3,000% in price to a staggering $300,000 plus dollars per year.

Little feels this is unethical and it makes her blood boil.

"Because when they approve Procysbi, they take Olivia's current treatment (Cystagon) off what they call 'Special Access Program'," says Little. "Our family was denied twice, access to Cystagon, but in the process I can't obtain Procysbi, the new drug, because there is no price (yet) and we don't know how it's going to get covered."

Little feels the drug process in Canada is completely backwards so for her, the next step is to lobby the Federal Government, with the help of Huron-Bruce Conservative MP, Ben Lobb.

"We're in the process right now of making a motion to kind of change what's going on; our disease is kind of the test pilot but hopefully, if anything that comes out of this, we're hoping that it never happens to anybody else," notes Little, adding, "hopefully Health Canada looks at how they approve drugs as well."

Olivia Little currently takes Cystagon every 6 hours like clockwork; the newer drug would be required every 12 hours due to slow release technology used in the medication.

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Source: Bayshore Broadcasting
3.0 from 46 votes
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