Health committee  I'll respond to something you said. I think the practical solution to the 23,000 drugs problem is one that I encountered when I was practising in Detroit, at the cancer centre there. The pharmacist was in the clinic with us, and he or she had access to the electronic database. At about every second patient, we would have to interact as a team to make sure the drugs were the right drugs--and not just the cancer drugs, but all of the other drugs.

Health committee  The problem, however, in that situation comes when the funding agency—in this case, the provincial government—won't even fund the drug from the beginning for anybody. What has been proposed—

Health committee  There is at least one example that I'm aware of where the company has come to an agreement with the funding agency that if the drug doesn't work in the first few cycles, no charge will be forwarded by the company to the agency. If the drug does work, then the agency will pay for the drug.

Health committee  In cancer medicine, the disease we're treating is so serious and the drugs themselves have enough side effects that we know of that the patients are willing to put up with this. So the issue of adverse effects in oncology drugs is not the pressing problem that it might be with more widely used drugs and other diseases.

Health committee  Yes.

Health committee  The Cancer Advocacy Coalition is struggling with just that question of transparency and accountability to the public for just exactly the reasons you have outlined. The mechanism that seems to be working—at least it's evolving, for example, for the joint oncology drug review mechanism—is that patient representatives are on the committees, sitting there and adjudicating all of this, and they have access to the data.

Health committee  There will always be some issues that the drug companies won't want to disclose. We would hope to keep those to an absolute minimum, because that secrecy element has impeded, in our opinion, the transparency issue. The website issue is always going to be, who's going to put it on it and who's going to read it?

Health committee  If you have a question on anything in the world, you Google it and you usually find the answer. I don't see the reason why we couldn't have the same kind of mechanism to address the issues you've raised here from Health Canada, for example. We've looked at the Health Canada website.

Health committee  Yes. As a matter of fact, there exists an example of a drug that was given to improve the hemoglobin level so that the anemia from the chemotherapy drugs is alleviated without the need for transfusions, only to find that the drug that improves the blood also makes the cancer grow faster.

Health committee  I don't think the strategy is concerned with that, because of its mandate. But to answer your question, the specific program we're talking about isn't being done, but it could easily be done. All the western provinces now have electronic data systems, which could easily be interrogated—to answer a previous questioner—and have the data drained off and the adverse effects and failure to respond also made immediately available.

Health committee  I think it comes in two packages, known and unknown. We've historically thought of adverse events as something down the road that was unexpected in chronic use and wasn't predicted from the initial studies. That's one category. The major category, as far as the physician is concerned, is the untoward effect you can expect from the initial studies, which can occur if you go beyond a certain dose.

Health committee  I could bring it down to a very practical approach, to answer the previous questioner. It's never the cost; it's whether you want to do it and how much you want to do. If you had a pilot study of expensive cancer drugs for two years, sampling major cancer centres' use of those drugs for adverse events and efficacy, and learned from that pilot study as a start, you would have a major step forward in addressing the issue in respect of these expensive but effective cancer drugs.

Health committee  However, if I can just add to that, the history of the indications for these drugs is such that you get it into the marketplace, you find that it works for the initial indication, but you soon find with off-label use that it has many other, completely unexpected ramifications. So it's not always possible to predict which off-label use is going to come up in your post-marketing plan.

Health committee  I'd just like to address one point you made. The Cancer Advocacy Coalition of Canada gets unrestricted grants from the pharmaceutical companies. We provide them with a list of things that we're going to do, and they either do or don't support them. As you can see from this year's report card, only two of the 10 articles had anything to do with drugs, and our emphasis is on much wider aspects than that.

Health committee  The additional consideration is that there's some reticence to publish the use of drugs off label, so in fact the communication between professionals about off-label use and effectiveness is inhibited. But if this mechanism were introduced, that would automatically overcome that impediment.