Thank you so much for having us here today. We appreciate it.
We have handed out a little blue folder with my notes. Sometimes I go off my notes, so you might want to be looking at them to follow along.
I really am privileged to be here.
The Canadian Breast Cancer Network is a network of survivors who represent all issues around breast cancer in Canada. We're made up of groups and individuals concerned about breast cancer, and we represent their concerns. We have 225 partner and member groups across Canada, and our board is composed of individuals who have been diagnosed with breast cancer. We know we are one of the top four, but we also know our issues apply to everybody diagnosed with cancer.
Right now, according to the Canadian Cancer Society's 2007 statistics, there are 162,600 people living in Canada who have been diagnosed with breast cancer in the last 15 years. That is a low number, because I know people who have been diagnosed more than 20 years ago. Over 22,000 women will be diagnosed with breast cancer this year and 5,000 women will die of breast cancer this year. It's the leading cause of cancer deaths in young women aged 20 to 49. It's second to lung cancer in older women, and once we get to be 70, it's the third leading cause of death. We're superseded by lung and colorectal cancer. We just want to live to be 70.
Our responses to your questions are really from the patient perspective. They're based on three values: equality, accountability, and inclusiveness. When we talk about equality, as I've said in my notes, we want timely and equal access to the best medications for all Canadians diagnosed with cancer. When we're talking about timely access, we mean that once a medication has been approved in Canada, a patient shouldn't have to be waiting and waiting to receive it, to have it funded. Equal access means that across Canada there cannot be differences. It should not depend on where we live in Canada or our social economic status whether or not we have access to medications. We want access to the best treatment, not just something that happens to be out there that maybe isn't as good as something else.
Accountability is about this whole decision-making process in terms of how drugs get funded, how they get put on the provincial formulary. It has to be just, it has to be fair, and it has to be transparent. We don't see it being any of those at this point in time. The accountability is in relation to not only the people on committees reviewing the drugs, but also to the provinces that follow up on those recommendations.
Inclusiveness, as other speakers have said, is about meaningful consultation and engagement of all stakeholders, including informed patients and health care providers such as oncologists and pharmacists, in the decision-making process. This has to be meaningful; it has to be real. We have to recognize that the decisions that are made about whether or not cancer drugs are funded most directly affect patients and their oncologists, and Dr. Knox spoke to that quite eloquently. When we're diagnosed with cancer we are in a partnership with our physicians. It is horrible to hear stories about frustrated people who can't have access to treatment and their physicians who can't help them.
In terms of your questions about the CDR and what we understand about it, we don't believe it has improved access to approved medications. There remains an unacceptable time lag from the time a drug is approved until it shows up on a provincial formulary. There is some transparency in that decision-making, but the actual criteria upon which decisions are based are not apparent to the average Canadian. Provincial reviews continue to follow the national reviews. That is obviously, in our minds, a duplication of effort and it delays decision.
There's absolutely no obligation on the part of provinces to follow through on recommendations from the CDR. We know they pretty much follow through on recommendations not to list a drug, but they definitely don't always follow through on listing one.
This whole process seems to be driven by economic considerations instead of health considerations. Fewer than half of the reviewed drugs were recommended, and also, we know this process isn't tailored to the new drugs, the targeted agents and the biologics.
Despite some improvements in terms of transparency and including patients, we know there are a growing number of Canadians, depending on where they live, who have to make a choice between quality of life, more years of life, or depletion of their financial resources and leaving their families bankrupt.
It's a terrible, terrible decision to make: “Shall we spend all our money to keep me alive for another 10 months, or shall I go quietly?” We don't want to go quietly. It's unacceptable in Canada that this is happening, and it is absolutely devastating that this disparity is increasing.
In terms of cancer medications and treatment for cancer, we have seen how this disparity is played out across the provinces. Bill Hryniuk's group has done a lot of work on that, and they have shown us the differences in what drugs are covered.
The idea of having one national strategy to look at oncology drugs seems to be a really wise one on the surface. The concept has potential and opportunity to eliminate regional disparity and to make sure that all patients receive the drugs they need.
Look at it. It will include all cancer medications now, not just the oral medications. It will include medications that patients take home, and it will include the intravenous medications. It will be a rigorous review, best use of expertise, no duplication of effort, decisions will be made based on evidence, it will shorten the wait time for funding, provinces will be collaborating, and it may actually improve the mechanism for pricing and negotiations with industry. So it sounds wonderful.
But when I look at my Saskatchewan government's press release about the JODR, my Minister of Health, Len Taylor, who is a wonderful man, says, in two quotes from him, that in Canada we require “a consistent”—yes, we do need something that's consistent—“rigorous review of the clinical effectiveness and cost-effectiveness” of new cancer drugs. That's fine, but what does that mean, and how does that translate? And who looks at that information, and what decisions do they make? If they make the best decisions for the citizens of Canada...oh, oh, the next quote says, “final coverage decisions will remain the responsibility of each jurisdiction”. So we do not see how there is going to be anything better than the bad stories we've heard about the CDR. The JODR will not achieve its potential if it's just merely a more complex iteration of the CDR process.
We at the Canadian Breast Cancer Network are very concerned that this process is going forward and may be entrenched in our decision-making for how drugs are funded in Canada. We don't have a lot of issues right now, as people with kidney cancers do, but we know there are going to be more and more new targeted, biologic, first-in-class medications coming out that will actually save our lives, and from what we can see, people with breast cancer will be denied access to them, or if they are allowed access, they will have to pay dearly for that access.
So our concern about the JODR is that the model on which the interim review process is based will not result in decisions that maximize the health of Canadians with cancer. We have read and heard from many sources, but the process doesn't value the recommendations of expert oncologists at this point in time.
Cost-effective analyses do not provide information that decision-makers need to make funding decisions that will maximize health gains from available resources. They just don't. That is not what is needed. It's too simple. There are many other factors that need to go into making these decisions.
It won't ensure access to needed medications for Canadians diagnosed with cancer, and it will just result in increased suffering and untimely deaths for some Canadians.
We are concerned so much that this is yet another cost-containment initiative, that that is the priority. They talk about a commitment to a consistent standard of care, but that does not translate into a commitment to a quality standard of care.
The cost of having cancer right now is horrendous, and on top of that, if you have to pay $35,000 for your course of treatment, it's completely unacceptable.
CBCN did a national survey back in 2004, looking at the financial costs of having breast cancer. In the package we handed out there's a little green booklet telling you about those results. On page 10, it says that 66% of respondents reported they had to pay for their drugs in some way or another. And these respondents are not the marginalized people in society. They're not the people who are poor and don't know how to go from one day to the next. So that's a huge number.
We don't understand, other than from a dollar-driven agenda, why the other provinces have agreed to follow a process that results in less access than their citizens now enjoy. The Ontario model has resulted in funding for very few drugs, as compared to other provinces. We don't understand why the model being adopted is not that of the province with the best record of providing access to drugs. The B.C. model funds the most drugs for patients. We are very concerned that patients are considered last, if at all.
Decisions are going to be made about the lives and quality of life of Canadians without any understanding of the perspective they have on these decisions or their involvement in making these decisions. Patients and families must be considered, and their physicians' opinions must be considered too.
Treatment options will be determined by where people live in Canada, not by evidence. Patients will be denied access to quality drugs. Patients who can afford drugs to continue living will access those drugs; patients who cannot afford such a luxury will die.
We don't know what the answer is to this problem. We know that it is not acceptable in Canada to have this going on. Patients must come first. Whatever system is in place for making these decisions, it must be one in which quality of life is prolonged and lives are saved. Equal access to cancer drugs requires federal funding to ensure equality, and it also requires a systemic change in thinking about the value of extending and saving human lives. All stakeholders must work together to ensure no Canadian receives less than the best possible care.
We want to see a transparent and just system where patients can move seamlessly from a clinical trial to ongoing access to needed medications, where patients are not denied access to needed drugs, and where no Canadian must choose between hope or bankruptcy or dying.
Thank you.