Radicava discussion for Canadians

[Bestfriends14]

Hi everyone,

We are heading out for treatment in Japan in about three weeks to start infusions and bring back three months supply. Now, when we booked this trip 7 weeks ago, none of this allowance to get the drug in Canada was available.

The problem is that we cannot get the province to cover infusion costs (yet), and are looking at approximately $250 per day for the treatment. With drug costs, that brings the treatment to around $50,000 annually. If anyone else is in Alberta, coming together to broach the province for coverage would be beneficial.

 

[iangowans]

Sunnybrook says infusions must be done initially by Bayshore Health clinics. Many locations in Ontario. Supposedly $225/infusion. After two cycles, can change to Nursenextdoor company for $115/infusion.

First two cycles need to be at a clinic in case of problems supposedly.

I'm still looking into this drug. Have read that it is only good for people with rapid symptom progression. Can someone confirm that?

 

[Bestfriends14]

Ugh, now I'm confused. I read a few places and heard on a presentation that it's good for slow progressing, w/in 2 years of symptoms onset. I'll have to find an old email from the middle man in Japan. I believe he said (as per doc's advice), slow progressing.

 

[Bestfriends14]

Yes, I can confirm that the drug is good only for "mild patient", in the words of Dr. Yoshino

 

[Miav123]

Sunnybrook says infusions must be done initially by Bayshore Health clinics. Many locations in Ontario. Supposedly $225/infusion. After two cycles, can change to Nursenextdoor company for $115/infusion.

First two cycles need to be at a clinic in case of problems supposedly.

I'm still looking into this drug. Have read that it is only good for people with rapid symptom progression. Can someone confirm that?

I just came back from my father's Sunnybrook appointment. We were told the same thing...Bayshore for two infusions and the rest could be done through Nurse Next Door at a cost of $145/infusion. They are coming for a consultation on Thursday to see what is involved to begin.

It is really frustrating how a large province like Ontario doesn't have public funding for this, but Nova Scotia does.

Does anyone know if any other province is funding the infusions?

 

[Nikki J]

I am not Canadian. I am answering what I know about who was found to benefit in the trials. There were 2 Japanese trials each lasting 6 months ( that is what is allowed by their regulatory agency). The first trial detected by benefit over placebo. When they analyzed the data they saw what seemed to be a benefit in a particular subgroup. The second trial only accepted PALS who matched the subgroup. This is the trial that showed the 30 percent slowing during the 6 month trial.

The subgroup was early in the disease ( less than 2 years from onset) with essentially normal breathing (80 percent or better). Japanese stage 1 or 2 which meant they were either working or at least able to live independently and had probable or definite ALS by El Escorial meaning detected disease in 2 or 3 areas ( areas being legs, arms and bulbar) so they are early in the disease but not really slow progressing

 

[Tedstehr]

so they are early in the disease but not really slow progressing

Nikki, I did not understand that last trait. I am beginning to think I have a slow progression but I still have high hopes for the treatment. I am hoping a slow progression gets slower!

I got news today that the estimated arrival date at the Vancouver airport is Friday. The Border Importation Unit will need to clear it but I am hoping that won't take too long. I have a doctor's appointment tomorrow with my GP who I am hoping will clear the way to allow the infusions at the local hospital.

I also have no idea if this will be covered here in BC or I will have to pay for the infusions. If I understand the dosing, it is 14 days for the first month, and then 10 days a month thereafter. If I can get it done for around $115 per day, I won't be happy, but I will be able to afford it ($1150 per month) as I am still working. I understand too that I can write it off as a medical expense on my taxes. It could be audited, but with a diagnosis of ALS and a drug that is approved by the FDA it should be easily argued. Hopefully, it will be marketed and approved in Canada and this problem will go away.

Canadians, just to make sure you know, you can register as disabled and get an additional $7000 tax credit. This might be common knowledge but I wasn't aware of it. My cousin has diabetes and he is claiming the credit. T2201-16E is the form you need to fill out. You doctor must fill out the bottom part. It can be your GP and not necessarily your neurologist.

 

[Nikki J]

I found it confusing at first too but I believe that that the not slow progressing characteristic is because of the combination of less than 2 years and probable or definite ALS. REALLY slowly progressing PALS who still have only one area of involvement were not shown to benefit BUT in a 6 month study really slowly progressing PALS may not change on the ALS FRS much if at all anyway so it just might not be picked up

The doctors at my clinic had a webinar for their patients after approval. They talked about the issue of the subgroup. They said either they were fundamentally different than other PALS in which case they really might be the only group to benefit or maybe others would benefit and the signal was just not strong enough to show. They leant toward the second explanation and encouraged patients to talk to their neurologist. ( I am paraphrasing from memory but that is the gist of it). The last time I was at clinic the nurse said about a third of their patients were pursuing it.

 

[Bestfriends14]

Hmmm, my hubby is quite slow progressing so I wonder if the results from the meds will be enough to register. I'll keep everyone posted on the other thread as to his results, if any, regardless.

3 more weeks and we'll be in Japan! Tedsther, please post if you encounter any issues on shipping in the drug.

 

[Tedstehr]

Hmmm, my hubby is quite slow progressing so I wonder if the results from the meds will be enough to register. I'll keep everyone posted on the other thread as to his results, if any, regardless.

3 more weeks and we'll be in Japan! Tedsther, please post if you encounter any issues on shipping in the drug.

I will certainly do so!

Of course, we must be thankful of slow progression, regardless of the efficacy of Radicava. I feel for our friends on this site who have not been blessed with slow progression. I feel that I have had time to adapt and assimilate as time goes by. It must be so emotionally difficult to deal with new symptoms as they keep multiplying.

Regarding the results of the study, I agree with Nikki. My neighbor is a drug researcher and she notes that no matter how hard they try to isolate variables, it is impossible to do. So if you are analyzing a drug that treats acne for example, one of the side effects might be depression. But is the subject depressed because of the drug or because they have bad acne?

 

[Gorby]

I think this article is interesting:

https://www.theatlantic.com/health/archive/2017/09/how-the-immune-system-drives-als/539370/

The Columbia University researchers suggest that the disease mechanism changes over time. Maybe that is the reason that the Radicava study showed better response in patients that are early in the disease.

 

[iangowans]

Gorby, interesting indeed but oh so frustrating. I have a kinesiology background and I say today what I said in fourth year of my program. The more you know about the human body, the more you realize you know only a small bit as to how it works.

 

[iangowans]

Question for the moderators. Would it not be prudent to make most recent posts go to the top of page one rather than scrolling to subsequent pages? Just a geeky computer question. Thanks.

 

[GregK]

Question for the moderators. Would it not be prudent to make most recent posts go to the top of page one rather than scrolling to subsequent pages? Just a geeky computer question. Thanks.

Possibly this?

User CP ->

Settings and Options ->

Edit Options ->

Thread Display Options ->

Thread Display Mode ->

Newest First​

 

[Tedstehr]

The shipment arrived in Vancouver today. DHL phoned me but I was on a webinar. I called them and they emailed me the documents Mr Obara included in the package. I took them to CBSA right beside the airport. After a long wait the CBSA agent reviewed my paperwork. She asked if it was for ALS. When I said yes she told me someone was in yesterday also picking up a shipment of Radicava. I have asked Marife at the clinic to send my contact information to "the mystery woman." I think we need to share information on how to get this infused.

My GP was pleasant. She said after receiving the drug information, a note from the neurologist and a note from Health Canada she would forward it to the Royal Columbian Hospital. They would review and clear with their legal department. I am guessing this will not be a fast process.

My GP also told me I am her only patient with ALS and doesn't know much about it. It seemed to me the message was it is not worth learning about for one patient. My father-in-law was a GP and one patient would have triggered an exhaustive study. This may be an unrealistic expectation and I guess I will rely on the specialists at the ALS clinic, my own research and the wonder women on this site.

Don't blush - you know who you are!