Canadian patients getting Edaravone in Japan

[Miav123]

We are strongly considering flying to Tokyo to purchase Edaravone for my father.
I contacted his ALS clinic at Sunnybrook. They are telling me that I have to use a certain infusion clinic at $225 per infusion. This will end up costing much more than the drug itself!
Does anyone in Canada know if there is a way around this? We would like to have the option of hiring our own medical professional to administer the IV.

 

[ShiftKicker]

I was under the impression that once you had the drug, the provincial health system was set up to help you with administration. I would recommend you contact ALS Canada to find out what you can do about the proposed charge. Another group- ALS Canuck dot org - also has been posting about Edaravone in Canada and can help you out with information and how to get it administered within your provincial health system. Not sure what province you are in so it's likely there are differences in procedures, depending.

 

[LizF]

Hello, Miav123
I second Shiftkicker's advice and would also add that you can contact the chief doctor at Health Canada, Supriya Sharma (supriya.sharma at canada dot ca) for clarification on who can and can't administer the drug.
In NS, the provincial health authority IS administering the drug to the first Canadian patient who flew to Japan to get it; I have been advised that here in BC, our regional heath authority will do the same.
You may be in for a dust-up but it is certainly worth pursuing.
Best of luck with your Dad.

 

[Tedstehr]

We are strongly considering flying to Tokyo to purchase Edaravone for my father.
I contacted his ALS clinic at Sunnybrook. They are telling me that I have to use a certain infusion clinic at $225 per infusion. This will end up costing much more than the drug itself!
Does anyone in Canada know if there is a way around this? We would like to have the option of hiring our own medical professional to administer the IV.

Miav,

Did you get some Edavarone yet or picking it up in Japan? Or will Sunnybrook supply it? Have you cleared the importation back into Canada? I am trying to get some but it is a bit of a bureaucratic nightmare!

 

[Miav123]

I was under the impression that once you had the drug, the provincial health system was set up to help you with administration. I would recommend you contact ALS Canada to find out what you can do about the proposed charge. Another group- ALS Canuck dot org - also has been posting about Edaravone in Canada and can help you out with information and how to get it administered within your provincial health system. Not sure what province you are in so it's likely there are differences in procedures, depending.

We live in Ontario. My father goes to the ALS clinic at Sunnybrook hospital.
Thank you...I will contact ALS Canada.

 

[Miav123]

Hello, Miav123
I second Shiftkicker's advice and would also add that you can contact the chief doctor at Health Canada, Supriya Sharma (supriya.sharma at canada dot ca) for clarification on who can and can't administer the drug.
In NS, the provincial health authority IS administering the drug to the first Canadian patient who flew to Japan to get it; I have been advised that here in BC, our regional heath authority will do the same.
You may be in for a dust-up but it is certainly worth pursuing.
Best of luck with your Dad.

Thank you for the contact! I sent an email to Dr. Sharma at Health Canada asking for clarification.

 

[Miav123]

Miav,

Did you get some Edavarone yet or picking it up in Japan? Or will Sunnybrook supply it? Have you cleared the importation back into Canada? I am trying to get some but it is a bit of a bureaucratic nightmare!

We are hoping to go to Japan to buy the medication in the next couple of weeks. I would like to figure out who can administer it once we are back with it.
I just sent my request in to [email protected] at the Border Compliance Program to obtain an authorization letter.
Good luck to you!

 

[Tedstehr]

Best of luck to you and your father Miav. I hope you enjoy your trip to Japan and do much more than just visit the clinic! Please keep us posted about how everything goes.