herceptin in Canada

I have finished my treatment - surgery 2/03 followed by 6 months CEF and 25 rads finishing before Christmas. My path reports showed HER2 positive and hormone receptor negative. After surgery my onc gave me a 50/50 chance of cure and very little improvement from that from treatment.
My question is, does anyone have information on herceptin use in Canada. My understanding so far is that until you have mets you can not get herceptin other than in trial. Any information would be appreciated.

Hello Janice -
Below is a link that came from the "Stories" section of this web site. A very brave woman named Lee Smith in Ottowa has posted her fight. Maybe if you can track her down, or some of the others mentioned in the three part epic, you will get a definite answer.
I also think there is always a doctor who will go out of the normal way of doing things for a patient.
Let us know how you do. OK?
All the best.

http://www.ibcresearch.org/advocacy/leesmith.htm

I believe that Lee Smith has passed on but you can still check the site.

I am taking herceptin and have no evidence of mets. I am not in a trial and it was my choice to have herceptin since it is not the "standard of care" without mets. My onc is the one who recommended it. I am not in Canada, though, but believe you should look into it. Good luck.

Hi Janice: I also have been trying to get herceptin off-protocol. So far it appears that the only way to get it (prior to the appearance of mets) is to take your chances on being in one of the receiving arms in the trial. Canadian doctors are (for practical purposes) employed by the state government and have less leeway in passing it out than their American counterparts.
One thing that I have become suspicious about is that it is apparent that many Americans are signing up for the same trial in hopes of getting the herceptin arm. If they are randomized onto the non-receiving arm, they then ask for herceptin off-protocol and remove themselves from the trial. Which means that the non-receiving arm is difficult to fill. I suspect that Canadians, who would be lumped geographically in with the "North American" volunteers would therefore be used excessively to fill the non-receiving arm as they don't have the same options. Statistically I believe that your chances of getting on one of the herceptin arms is 70%, but realistically as a Canadian, it is probably somewhat less.
I believe that herceptin costs approx $50,000 American @ year to buy, but someone on this site also told me that the producers of herceptin have some kind of assistance program if your income is less that $70,000 A @ year. I haven't been able to find out if that charity applies to Canadians.
Health Canada has had a bit of a history of delaying the approval of drugs and medical techniques/equipment that are extremely costly because of the socialist nature of our health care system. The government needs to be able to stump up the dollars for them. They can already predict that there will be $X needed to supply all the Canadians that require it (herceptin), and as you know, health care $$ are in short supply. Waiting lists and delaying approvals are all political methods of enforcing the rationing of health care.
If your research reveals anything hopeful, I would be interested in hearing it. My predicted survival stats aren't yummy either.

I, too, am interested in receiving Herceptin "off protocol." I've discussed it with my onc and he suggested waiting until the information starts coming in on the Herceptin trials. He said that information would be available probably in May.

I pray that the mets never come, but would sure like to try Herceptin, knowing that I did gave it my best shot.

Questions:
Why did your onc suggest Herceptin to you? I would think that most oncologists would not bring it up unless the patient is asking for Herceptin. You are very lucky.

What about the cost? I've read that Herceptin off protocol is $2,200 per shot.

Thanks for your help.

Barb

Hi Merridith,

No need to worry about there being an 'unbalance' of Canadians in the observation-only group in North America because the herceptin trial here is not the same trial as the U.S. one. The HERA trial (involving 1 or 2 years of herceptin alone)is only available in Canada, Australia, the U.K. and Europe. To read about the various trials go to clinicaltrials.gov and type in 'herceptin'.

Thank you all for your suggestions. I found a HERA trial at Mount Sinai in Toronto. Now all I have to do is get in.
Thanks
Janice

I had never even heard of Herceptin until my onc told me about it and said it was up to me. I am truly glad that he is on top of things. So far my insurance is covering it all. I have received three statements from them. It looks like it is about $1400 each time. I've only had six treatments so far.