Radicava discussion for Canadians

[Bestfriends14]

That's fantastic news about the shipment, Ted! I'll keep my fingers crossed that you find an affordable infusion site, and that you for have to pay for it too long, as hopefully the province will cover the infusion costs.

Please post in how you're feeling.

Take good care. You're in my thoughts!

 

[Tedstehr]

I have a few connections at the hospital, but it seems like it will be a slow option. I will talk to False Creek Surgical and Cambie Street Surgical about getting a PICC line. If I get that, it is pretty easy to connect a drip line each time I need it without paying for a nurse. We have friends who are nurses and I am sure my wife or daughter can do the connection. We can rent a pump or just count drips!

Bestfriendstilltheend, I am feeling good. I am alive, things are progressing slowly and I have five months of Edavarone in my house. Altogether a good day!

 

[Tedstehr]

A liitle down, but not out. It seems like it will be a real struggle to get this infused. I spoke to Bayshore, but they say they cannot infuse it without a prescription or authorization from a GP or Neurologist and perhaps Health Canada.

Neither of them will do so without authorization from the hospital. And the hospital will not move until cleared by its legal department.

So I have to get those letters before I can start to move forward.

My next step is to ask our MLA, Judy Darcy, to see if she can do anything to influence the Ministry of Health for BC. This was successfully done in Nova Scotia. I have great hope because Judy has had a wealth of experience in shadow cabinet for health while in opposition, and is now Minister of Mental Health & Addictions. She works closely with Adrian Dix, Minister of Health. She could certainly get things moving and is a principled and effective politician.

Let me tally up what I know about now but did not know before my diagnosis:

Roughly how an MRI works
Upper and lower motor neurons
Drug approval process in Canada
How to petition MLAs for help
How wonderful and knowledgeable people on the ALS Forums are. Especially people like Mike, Laurie, Tillie, Lenore and others who after being caregivers for PALS, stick around and continue to give help and support to others dealing with ALS. After making such an incredible contribution (some might say the ultimate) to their partners and loved ones they don't leave us behind and start fresh; they share the hard won and intimate knowledge they have of this disease. That is some kind of special. And, if you excuse my rant I will say that to date, the help and support I get from this site has eclipsed anything IRL. (In Real Life as the Millennials would text.) Nikki and Karen and others who are so informed and helpful, thanks to you so much as well.
Please all give yourselves a round of applause!

 

[Tedstehr]

I spoke with Judy Darcy's office. The person I spoke with was very helpful. I sent her my email and she feels Judy and Adrian Dix (Minister of Health) will be able to help. She suggested I talk to the ALS Society of BC, which I did. Wendy, from the society, is going to a meeting for all associations across Canada. She was able to get this situation on the agenda.
She showed me the email where Alberta and Quebec are finding the same issue. They were excited to hear Nova Scotia has already approved the procedure. They feel this should set a precedent for other provinces. Great progress!

 

[Tedstehr]

I found a local nurse who has been doing the infusions for $80 CAD a day. That is about $20 USD B^)
It is not cheap, but not too expensive to extend my quality of life. Still waiting for some of these other irons in the fire to get hot.
If I get a PICC line my neighbor will hook me up for free and teach us how to do it.

I will post sometime around October 21st when the ALS Society rep reports what happened at the federal meeting.

 

[Bestfriends14]

Tedsther,

Thank you so much for posting this exciting news. Thank you, too, for advocating for infusion coverage.

We leave for Japan next week and will being meds back 6 weeks from now. I have shared this information that you have posted with my husband and he will call the ALS society and minister of health before we leave for Japan. I am hoping that while we are away, we can get provincial coverage across Canada for infusion.

Thank you again, Ted.

Hope infusions are going well for you.

J

 

[Tedstehr]

Tedsther,

Thank you so much for posting this exciting news. Thank you, too, for advocating for infusion coverage.

We leave for Japan next week and will being meds back 6 weeks from now. I have shared this information that you have posted with my husband and he will call the ALS society and minister of health before we leave for Japan. I am hoping that while we are away, we can get provincial coverage across Canada for infusion.

Thank you again, Ted.

Hope infusions are going well for you.

J

I am sure this pressure from across Canada will help. I am not sure of the relationship between the Federal Health Minister and the Provincial Minister as health care is a provincial responsibility. Perhaps they can push for consistency across the country? And we are not putting an undue strain on the medical system! Probably less than if our symptoms progress.

I hope you have a wonderful time in Japan. I hope you can enjoy your visit, regardless of the situation. Please say hi to Dr Yoshino and Mr Obara. They seem like great people.

Sayōnara

 

[Miav123]

I found a local nurse who has been doing the infusions for $80 CAD a day. That is about $20 USD B^)
It is not cheap, but not too expensive to extend my quality of life. Still waiting for some of these other irons in the fire to get hot.
If I get a PICC line my neighbor will hook me up for free and teach us how to do it.

I will post sometime around October 21st when the ALS Society rep reports what happened at the federal meeting.

That's is great news that you were able to find a nurse to infuse for $80. Right now we have a nursing company who is doing it for my father for $170 per infusion. We are waiting for him to get a port cath or PICC line. Is it safe for family members to learn how to administer the infusions ourselves if a line is in place?

We really need to find a way to get this covered throughout Canada. If Nova Scotia already has this in place, I see no reason why the rest of Canadians can't receive the same treatment.

 

[Tedstehr]

Is it safe for family members to learn how to administer the infusions ourselves if a line is in place?

I would be completely comfortable doing it myself or having my wife do it if I had a PICC line. We have a friend who is an RN who said they regularly teach caregivers how to do it. It is needle into vein that takes a lot of skill and a steady hand.

 

[Miav123]

This is great to hear! Now we just have to get him set-up with a port cath and take over the infusions on our own.

 

[divxcorner]

Just wanted to share some good news I read today about edaravone home infusion coverage for ontarians

Breaking News! Edaravone Home Infusions

LHIN (ccac) in Ontario has just (yesterday) confirmed that they will be providing home infusion services for the medication Edaravone for ALS patients living in Ontario. This means the infusions are now covered by OHIP. This news was confirmed yesterday. It may take some time until all LHINs are 'on board' and rolling out the new protocol across the province. All 14 regional LHINs in Ontario received an email yesterday morning with detailed information as to how to move forward with providing Edaravone infusions at home for ALS patients.

LHIN (ccac) in North East Ontario completed all the due diligence and received written confirmation from the CPSO, the CNO, Health Canada, and the Ontario Ministry of Health, that allows all LHINs in Ontario to move forward with providing these infusions at home. All the partners are 100% supportive in providing home infusions. Services provided by LHINs (ccac) are covered by OHIP.

Actions you should take today to access your home infusions covered by OHIP.

1- Contact your ALS clinic / neurologist. Have them submit a referral to the LHIN (ccac) in your region, for edaravone infusions in your home. Confirm with your ALS clinic that this step is completed as soon as possible.

2- You should then contact your regional LHIN (ccac) and have them confirm receipt of the referral from your neurologist for your home infusions. Once confirmed move to the next step.

3- If your LHIN (ccac) case worker or manager has any questions or hesitations with your referral for edaravone home infusions...have them contact the Vice President of Home and Community Care at the North East LHIN. 1-866-906-5446 extension: 4518

4- Repeat step 2 and 3 daily until you received confirmation that you will be starting infusions at home. Follow up every day!

#TimeMattersMost
#ALS
alslift.org

 

[Miav123]

Thanks for posting! I called my father's CCAC coordinator yesterday and she didn't know what I was talking about so I guess the news hasn't spread yet. Hopefully in the next few days the process will be in place.

Dixcorner, I see that you are in Newmarket. We are in Aurora. Is your care coordinator at CCAC Lynn Shalla by any chance?

 

[divxcorner]

Thanks for posting! I called my father's CCAC coordinator yesterday and she didn't know what I was talking about so I guess the news hasn't spread yet. Hopefully in the next few days the process will be in place.

Dixcorner, I see that you are in Newmarket. We are in Aurora. Is your care coordinator at CCAC Lynn Shalla by any chance?

Miav123, My mom's ALS diagnosis was just confirmed last thursday,oct-19th, so we're not even there to have a CCAC coordinator assigned. I got Karen Frydrych, who is
Occupational Therapist at sunnybrook to send a referral letter to CCAC on monday. But no one contacted us yet.
We've purchased endaravone medication from Japan over the last weekend, and hope to have it here in the next 2-3 weeks. Where do you get your father's infusions from?

 

[Tedstehr]

Just wanted to share some good news I read today about edaravone home infusion coverage for ontarians

Breaking News! Edaravone Home Infusions

LHIN (ccac) in Ontario has just (yesterday) confirmed that they will be providing home infusion services for the medication Edaravone for ALS patients living in Ontario.

Thanks so much for this news! This will help move things forward in BC (and Alberta.) I have already passed this along to the ALS Society of BC who has passed it to Dr. David Taylor.

 

[Miav123]

Miav123, My mom's ALS diagnosis was just confirmed last thursday,oct-19th, so we're not even there to have a CCAC coordinator assigned. I got Karen Frydrych, who is
Occupational Therapist at sunnybrook to send a referral letter to CCAC on monday. But no one contacted us yet.
We've purchased endaravone medication from Japan over the last weekend, and hope to have it here in the next 2-3 weeks. Where do you get your father's infusions from?

Did you have the Edaravone shipped? That is great if you did. We had to fly there a month ago to get it. My father received his first two infusions at Bayshore because he had to be monitored. The rest of them were done at home by Nurses Next Door. We are hoping that when he starts his second cycle next week that CCAC will cover it.