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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.
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