Radicava discussion for Canadians

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Tedstehr

Distinguished member
Joined
Aug 25, 2017
Messages
199
Reason
PALS
Diagnosis
08/2017
Country
CA
State
BC
City
New Westminster
I am following the steps provided by the Bishops in Nova Scotia to receive the drug in Canada. The neurologist in Japan has approved me, and I have done a bank transfer to the intermediary there. I thought having a terminal disease was painful, but transferring money to Japan is pretty bad too. It took about 10 minutes for them to fill out the form and it will take up to five days to complete the transfer.

The neurologist is in Austrailia now, but it is estimated the drug will be in my hands the first week of October. I will visit the ALS clinic tomorrow and I have asked them, in advance, how I can organize a public health nurse to infuse it. Unfortunately, I have to travel until October 11th. I anticipate starting my first 14 day infusion at that time. I will keep everyone posted about my progression, lack thereof or even any rollback of symptoms.
 
Re: Have you started Radicava? Use this thread to discuss experiences with receiving

Tedstehr - as a fellow Canadian I read your post with interest. I am just starting to investigate this process. I was under the assumption that I would need to travel to Japan to get the medication. Is that not so? What length of medical treatment are you buying? Have you looked into any insurance coverage? Sorry... lots of questions. Can you confirm the email address of the head researcher? I sent something but I'm not sure it was the right address. Thanks!
 
Mod note: The Radicava situation in Canada is a bit different. I have created a thread specifically for the issues confronting Canadians who wish to take it.
 
Thanks Fiona. Am I correct to say this is the new thread?
 
Re: Have you started Radicava? Use this thread to discuss experiences with receiving

Tedstehr - as a fellow Canadian I read your post with interest. I am just starting to investigate this process. I was under the assumption that I would need to travel to Japan to get the medication. Is that not so? What length of medical treatment are you buying? Have you looked into any insurance coverage? Sorry... lots of questions. Can you confirm the email address of the head researcher? I sent something but I'm not sure it was the right address. Thanks!

Ian, please PM me your email and I will send you the newest steps from Bruce Bishop. I sent my diagnosis letter and respirology report to Dr Yoshino and he approved me. Mr Obara has received the bank draft (approximately $3500 for about five months supply.) He has ordered the drug for me and will pick it up from Dr Yoshino when he returns from Austrailia. You do not need to contact Dr Sharma at Health Canada. Other patients are already receiving the drugs from the Border Importation Unit so that should not be a problem. It seems like arranging the PIC line and infusing the drug is the biggest roadblock for me.

I will help you anyway that I can.
 
By the way, the dosing regime seems different. The original schedule is 14 days infusing 60 mg each day (two vials) with another 14 days with no infusions. Then 10 days in a 14 day period of infusions and 14 days without. But I have heard mention it is now five days of infusions followed by two without. I anticipate the dosing sheet enclosed with the shipment will verify. I will let you know as soon as I receive it. If it is the original dosing it is 60 days of infusions which should be approximately five months supply. What I don't know is how much of this expense can be written off as medical expenses. I am pretty certain none of it will be covered by insurance as it is not on Health Canada's approved drug list.

The internet rumour (so it must be true) is that Mitsubishi Tanabe Pharma will market the drug in Canada sometime in 2018. I imagine Health Canada will move quickly on approval. The insurance companies should also move quickly as the small number of Canadians with ALS will not be a burden on their claims reimbursements.
 
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Ted, are you able to share some of the steps you took to be able to receive this drug? Some people are coming into this with zero idea of how to get it. Is there any guide or link where folks can start their quest?
 
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Just found this forum yesterday and not sure how it all works yet. Not sure of the rules or I would just post my email here. How do I pm you on here?

Thanks for all that preliminary info!
 
Ted, are you able to share some of the steps you took to be able to receive this drug? Some people are coming into this with zero idea of how to get it. Is there any guide or link where folks can start their quest?

There is one online but I have a newer one. I will paste it into a reply.
 
Ted, Ian is too new to PM but you can either PM him or ask the mods to PM for you both :)
 
Ted, I deleted two posts where you spelled out information available from the Web site itself, whose URL you kindly provided. Though one version may be more recent than the site, the real estate was excessive and I'm sure any inquiries will elicit the update.

Our policy on URLs (and this one must be classified as commercial, as a middleman's fee is entailed), is that because everyone has different information needs and reading long text blocks is difficult for many PALS, we prefer that instead of cutting and pasting information, that the URL speak for itself.

Thanks for sharing the information.

Best,
Laurie
 
That makes sense Laurie. Thanks.
 
My brother flew to Tokyo two weeks ago to get edaravone from the Yoshino Clinic. Bringing the drug into Canada went well. Tomorrow we have to bring it into my fatther's ALS clinic at Sunnybrook for his neurologist to approve and figure out administration. This is the part that I am worried about. Will the government cover the infusions at all? I guess we find out tomorrow....
 
Thank you for coming here to let us know. I wish your father well. I do believe administration is to be covered by the Provincial healthcare system, but I have heard others have had to advocate very strongly for this to happen. I hope Sunnybrook gives you no trouble and look forward to hearing how it goes for your dad tomorrow.
 
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