Health Committee on April 30th, 2007

[Susan Kadis, Liberal, Thornhill, ON]

I think you did answer my question or my concern.

Another problem with the CDR that we were made aware of in previous testimony was that rare diseases were getting the short end of the stick in the drug review process, with the vast majority often not passing through the CDR, which caters to more widely used drugs. In terms of drugs that are used for rare forms of cancer per se, how has the JODR been dealing with those?

We've heard a bit about that today, but I'm particularly interested in this area of rare diseases.

[Dr. William Hryniuk]

I think I can answer that partially. We did an analysis this year of the number of cancer drugs made available to the patients of Ontario versus cancer drugs available to patients of other provinces. Ontario has the worst record of placing injunctions or restrictions or deletions or exceptions to access to these drugs. That's the same committee that's going to be the JODR. Our concern is that it will duplicate that for the country, and I think that's what you're hearing.

[Susan Kadis, Liberal, Thornhill, ON]

I'm not hearing a lot of confidence here regarding the CDR, and I hear your overriding concern that the same will potentially occur with representatives in the JODR. I hear that you think it's a good concept that they are emphasizing the area of cancer, and there is a great need for that--with 150 cancers, the potential is great. But I'm not hearing a great deal of confidence.

[Dr. William Hryniuk]

That's correct. We have very little confidence that it's going to work. But we want something to work, and we have these suggestions for improvements.

I think the other part of it is there has to be some kind of federal-provincial initiative on a combined basis to deal with the cost of the drugs and introduce strategies that will make sure the drugs get to the right people. Just because the drug works in 5% or 10% or 15% in dramatic fashion, that doesn't mean you have to treat all 100 patients. You should be working on identifying those 5%, 10%, 15%, or 20%. There are ways to do this, but those efforts are not very strong.

[Barry Stein]

One of the things that isn't taken into account when the drug is approved is that at least 50% of the patients don't continue a full course of treatment. When they look at the cost analysis, they're basing it on a full course of treatment. Maybe they do two or three and it doesn't work, or maybe after two or three the patient doesn't survive. These financial considerations are not really looked into.

As well, they also look at a median survival as opposed to progression of disease as one end point, of course, but they're usually looking at the survival. I could tell you that in my own case, had I not gone with the new and novel therapies along the way, I never would have had the opportunity for the next thing that came down the pipeline.

[Susan Kadis, Liberal, Thornhill, ON]

Thank you very much, Mr. Chair.

[The Chair, Conservative, Rob Merrifield]

Thank you very much.

We'll move on now to Madam Gagnon.

[Christiane Gagnon, Bloc, Québec, QC]

Good day and thank you for your presentations.

We heard that there are 150 different types of cancer. How many cancer-fighting drugs would have to be reviewed under the new JODR initiative in order for you to be satisfied? Some of you have doubts about whether this new approach will be effective, because not enough new drugs are being approved. Is the problem a lack of resources, reviews or experts?

Quebec carries out its own drug review. I can't say if its resources are comparable, but we are here to try and sort this all out and to ascertain if the JODR approach is indeed effective.

Can you tell us how many drugs you would like to see reviewed? In your opinion, will this new process be adequately funded? Will there be sufficient resources, in terms of reviewers and experts, to get the job done?

[Barry Stein]

Are your questions directed to anyone in particular?

[Christiane Gagnon, Bloc, Québec, QC]

They are directed to anyone who may wish to respond. I believe some of you broached these issues. If the Chair has no objections, several of you can wade it with a response.

[The Chair, Conservative, Rob Merrifield]

Go ahead.

[Dr. William Hryniuk]

Madam, I think the issue is not in our control. The drug companies decide which drugs have been proven to be effective in other jurisdictions. They bring them to Health Canada. Health Canada determines whether the drug is safe and effective and passes it on to other organizations, including CDR, and now JODR. So it's not a question of how many drugs we can handle. They come to us without our control. The issues here are the transparency, the expertise, the representation by the patients, the bases on which decisions are made. They're very narrowly defined bases, which have to change, and you have to take into account many more aspects of human living than just the cost of one year of life. I think we would all agree with that.

Some drugs, for example, are so powerful that they can make money for the economy if they're processed properly. They are so powerful and they cure patients so quickly that patients return to normal life, pay taxes, and contribute to the GDP. Those drugs, in fact, examples of which we've given in the past, have been stymied through this review process. So it's not a question of how many drugs we can handle. It's the process from CDR that we think is flawed, and those flaws will be translated into the new JODR. We have no confidence that they won't be, unless you intercede.

[Barry Stein]

It's not the system itself that gives us cause for concern. Of course Ontario has some very good oncologists. The problem is more that patients do not have access to new technologies because of the costs of some new drugs. Earlier, for instance, someone mentioned Avastin, or bevacizumab. This drug is used to treat colorectal cancer and down the road, it could be used to treat lung and breast cancers.

However, this drug costs approximately $35,000. Accordingly, when the drug was reviewed, it was noted that the survival time in this case was approximately 4.6 months. The cost of the drug is weighed against the survival time. You have heard testimony to the effect that giving a patient an additional 4.6 months does not justify the $35,000 cost of the drug.

Personally, I underwent surgery and received treatment in the United States. However, if I hadn't had access to this first category of drugs, I wouldn't have been able to receive the follow-up treatment. Treatment is what it is. However, some people survive much longer. In my case, I was given a 30% chance of surviving in 1995, and that was almost 12 years ago.

[The Chair, Conservative, Rob Merrifield]

Thank you very much.

I see no others.

Mr. Fletcher, you have five minutes.

[Christiane Gagnon, Bloc, Québec, QC]

Mr. Chairman, are my five minutes up?

[The Chair, Conservative, Rob Merrifield]

Yes. It was five minutes and twenty-seven seconds, actually.

[Christiane Gagnon, Bloc, Québec, QC]

Thank you for the twenty-seven seconds.

[Steven Fletcher, Conservative, Charleswood—St. James—Assiniboia, MB]

Thank you, Mr. Chair, and I'd like to thank all the witnesses for coming today.

As some of you may know, the Canadian Partnership Against Cancer is something this government has been very involved with. As health critic, I was humbled to have the opportunity to work with many of your organizations to bring that on to the agenda. I was further humbled to have had the opportunity to help the Minister of Health and the Prime Minister push that through.

Having said that, it's obviously an issue that is very close to I think everyone's hearts here, particularly in light of Dr. Knox's very personal and touching story, which is repeated millions of times throughout the world.

I have a couple of questions. First, how are you finding the interaction between the Canadian Partnership Against Cancer and the JODR? Is there a relationship there? And how is it between the JODR and the CDR? How are the three intermeshing, if there is any intermeshing? One of the points of the Canadian strategy against cancer, now the Canadian Partnership Against Cancer, is to ensure that there are best practices, and obviously drug therapy is part of that. So that's one question.

Second, in your opinion, how could the JODR process be merged with the common drug review process? And what changes, if any, would be required for the common drug review process to be merged? Or, if we accept your logic that the CDR is unable to deal with cancer and has to be taken out so that JODR can be dealt with, or that JODR is necessary to deal with the shortcomings of CDR, what confidence can this committee or Canadians have in the CDR dealing with the thousands of other diseases out there that are supposed to be covered by the CDR process?

So is CDR so far gone that it's impossible to fix, or is there a way of fixing it so they can deal with cancer and the thousands of other diseases out there?

So in twenty words or less....

[The Chair, Conservative, Rob Merrifield]

Go ahead, Debbie.

[Debbie Milliken]

I'll answer the first question on the relationship between the Canadian Partnership Against Cancer and the JODR. It's the intent of the JODR process in phase three, which started some time in the summer, to start to look for synergies and linkages with national initiatives such as the Canadian Partnership Against Cancer. We're looking at potentially doing that through the clinical guidelines action group, which might be a mechanism to bring together national panels of experts, for example. There are other national initiatives under way, such as the National Cancer Institute of Canada economic working group, which we also might want to tap into in terms of national initiatives.

On the relationship with the JODR and the CDR, there is a linkage in terms of the governance. The CDR participates in the steering committee as an observer, so they're linked in that manner as well. Although the CPAC committee will not be deliberating during the interim one-year process, we will have the benefit of having some of the reviews that come out of the CDR for drugs that are within the scope of CDR, or normally would have been within the scope of the CDR.

[Barry Stein]

I have to thank Mr. Fletcher for all his efforts in the past. He really has made a difference. I actually say that about both sides of the bench--we dealt with Carolyn Bennett as well.

To answer your question more specifically, when we called the round table conference in Montreal this past March we specifically reached out to the JODR chairmen, because one of the chairs on the access side was the chair of the clinical practice guidelines of CPAC. So we thought we would take the initiative, take the bull by the horns, and try to see if we could actually create some sort of discussion between the individuals, more so than the bodies per se.

When I talked to you before about it being off to a bad start because the patients should have been involved in the initial setting up of the program, I think that would have made a difference. Nobody from JODR showed up. Admittedly the process had just started, but there has been very little interaction, as far as I know--certainly with our group and with CPAC. I stand corrected if something has changed, but until March nothing had happened.

So I think what we're missing is this interaction between bodies such as JODR and CDR and CPAC on the one hand, but really the patient groups or advocacy groups, to provide input. CPAC is not an advocacy group; it's more of a resource.

[The Chair, Conservative, Rob Merrifield]

We'll go with one more answer.

[Dr. William Hryniuk]

Thank you for your work in establishing CPAC.

On your first question about JODR–CPAC interactions, one of the difficulties is that the membership of the oncology subcommittee of this JODR is kept secret. That's why there are difficulties in interaction. That's why they weren't at the meeting. Are we not going to know the credentials and membership of a group that's deciding the lives of thousands of Canadians? I think that's ridiculous. That's the first issue. Second, I think you need to encourage interaction at that level. There are other reasons for their not interacting, which I think you can break though. But I would encourage you to keep an eye on that.

As far as JODR versus CDR, the lesions of CDR could be replicated in either condition. You have to correct the lesions of transparency of membership, credentials, patient representation, what the decisions are really about, and the cost-effectiveness model. Those lesions exist no matter which way you go, and they have to be fixed.

Finally, I think those lesions apply to CDR in other diseases. If you fix them for JODR you can fix them for CDR. Get adequate representation. Get experts on the diseases who did the trials to testify to the committee and explain carefully--as we heard from Dr. Knox--why this drug is so important. Nobody on that committee must have realized that this was a breakthrough drug. They purposely excluded the investigators who proved that this was a breakthrough drug because somehow their testimony would be tainted or not believed. I think that speaks to the lack of competency and knowledge, and you have to repair that defect in CDR.

With JODR we don't have so much worry. It's well staffed by expert oncologists. But they should still hear from the investigators who proved that the drug was effective.

[The Chair, Conservative, Rob Merrifield]

Thank you very much.

Time has gone, so we will go to Ms. Priddy, and perhaps you'll have a chance to answer later. Go ahead.

[Penny Priddy, NDP, Surrey North, BC]

Thank you, Mr. Chair.

I have to say I speak with some bias. I'm from British Columbia, and I was the health minister. I am a woman from B.C. surviving after breast cancer, so I appreciate that. I was in the very fortunate position to be in that province during that time.

It wasn't a question I was going to ask, but now I'm really puzzled. I'll probably ask it another time, but I didn't realize the names of committees were not public. I cannot think, other than of one particular example of medical treatment in our country, where anybody's life has ever been put at risk because their names were published. I think we all know what that one was, but I'm somewhat startled by that. I don't need that explanation today, but I will pursue that because I'm a little bit...well, a lot astounded by it.

I would like to know, if we were to rely on the information gathered by other jurisdictions without then redoing that information, would there have to be some--and somebody said harmonization, but I don't think they meant around this--kind of trust and harmonization in the way that information is gathered? People gather information in a variety of ways. Is it possible to do it so jurisdictions would gather information in ways in which different jurisdictions would have confidence?

Could someone comment on that, please? I have two more questions, so not a long answer, please.