A Port Elgin, Ont., household says the drug wanted to maintain their nine-year-old daughter from going blind is about to develop into unaffordable after Well being Canada authorized a plan that may enhance its price by almost 2,000 %.
Olivia Little wants eye drops each hour to assist deal with her Cystinosis, an ultra-rare genetic illness that causes crystals to construct up within the eyes and impacts varied organs.
The Little household has been paying an estimated $5,000 per 12 months for the drug, which Olivia has been on since she was recognized at 18 months.
The household was left scrambling after Well being Canada authorized an official model of the drug, which is slated to promote for greater than $100,000 per 12 months.
“I do not know why they are going up a lot,” mentioned Erin Little, Olivia’s mother. “We have to query why these medicine are so outrageously costly.”
Little mentioned her daughter’s present drug provide will final up till Sept., 14. She would not know what to do after that.
Mom struggles after worth of essential eye drops surpasses $100K
Erin Little has used prescription eye drops to deal with her younger daughter’s eye situation since she was a toddler. The drops used to price a number of thousand {dollars} a 12 months, however Little says that worth is rising to over $100,000, which she will be able to’t afford.
Drug approval course of
The household has been buying eye drops from a compounding pharmacy in London Ont., earlier than a tweaked method of the drug was made accessible final 12 months in Quebec.
These pharmacies will not have the authority to promote the drug after Recordati, an Italian pharmaceutical firm, utilized to have its personal method authorized by Well being Canada.
“When Well being Canada approves a brand new drug, different firms need to cease making compounds … it is a Well being Canada rule and it is one of many issues that we as a household really feel has to vary,” mentioned Little.
Olivia Little, proper, resides with an ultra-rare genetic illness known as Cystinosis. (Submitted by Erin Little )
It is the second time inside two years that one other pharmaceutical firm upgraded the drug and commenced promoting a more recent model of it in Canada, mentioned Little.
“It shouldn’t be the affected person who’s going to bankrupt our nation, it’s the pharmaceutical firms,” she mentioned.
Monetary assist
Little mentioned the household beforehand acquired monetary assist by a provincial fund.
Nevertheless, with the hovering price of the drug, it is troublesome to find out whether or not the household will get any aid in any respect, she mentioned. The household’s insurance coverage firm hasn’t determined whether or not it is going to present any protection.
With Olivia’s present drug provide operating out in about two weeks, Little mentioned she hopes media consideration will strain Well being Canada to make modifications.
Ontario Chronicle has reached out to Well being Canada and Recordati officers for remark.
