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Wednesday, March 27, 2019

Port Elgin Mom Applauds Federal Funding For Rare Diseases

Port Elgin | by Claire McCormack  

Erin Little says it's great to see the words "rare disease" in Canada's spending plan.

The mother of a Port Elgin girl who has a rare disease called cystinosis is applauding the federal government for including rare diseases in its budget this year.

Cystinosis is a rare condition wherein the body can't metabolize the amino acid cystine, causing cells to crystallize and damage first the kidney and eyes before spreading to other parts of the body.

Erin Little's nine year old daughter, Olivia's rare disease requires her to take drops and medications numerous times a day, even part way through the night.

The federal 2019 budget states it plans to "invest up to $1 billion over two years, starting in 2022-23, with up to $500 million per year ongoing, to help Canadians with rare diseases access the drugs they need"

"To see that the Liberal government through the federal budget has an outline with the words 'rare disease' even in it is a wonderful step forward," says Little.

She's waiting to hear more about where the money will go, "Are we going to cover all rare diseases, some rare diseases, what about trial rare diseases?"

Last year, Erin Little raised the alarm when the drug her daughter relies on called Cystagon (Roughly $5,000 a year) was due to be replaced on the market with a much more expensive drug called Procysbi (up to $150,000 a year).

With the help of Huron-Bruce MP Ben Lobb, the issue was brought to the attention of the federal government.

Little now still has access to the less expensive Cystagon.

She notes there are some new drugs that can be administered less frequently, and might improve the quality of her daughter's life, but they're more often complicated to access due to factors like availability in Canada and for some, the cost of those drugs.

Little says gaps need to be closed in the existing private and public insurance systems.

Little is currently waiting to find out if her insurance will cover a new eye drop for Olivia that could significantly reduce the number of required doses.

She's also calling on the government to push for more transparency from pharmaceutical companies where it comes to drugs for rare diseases, "Why does it cost this much? Why does it cost this much to make it?."

She says $500 million dollars in the budget may sound like a lot, but with thousands of rare disease patients all needing expensive treatments, it may go quickly, "It looks like a big number but in my eyes, I think you'd burn right through that."

Meanwhile, in its budget the government says it intends to, "Negotiate prices with drug manufacturers, and ensure that effective treatments reach the patients who need them."

To learn more about cystinosis and the Liv-A-Little foundation for Olivia Little go to

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