Thank you very much, Mr. Chairperson, and thank you for inviting us.
First, we would congratulate the government for transferring the cancer drug portfolio from the CDR to the joint oncology drug review, JODR.
Let me place our credentials before you. The Cancer Advocacy Coalition of Canada is a non-profit organization comprised of cancer survivors, physicians, scientists, and cancer system administrators drawn from coast to coast across the ten public health care systems of Canada. Our board members have personally received cancer treatments and services, or have delivered the services to individual patients, or have administered cancer services on a regional basis, or have organized and conducted clinical research on a national basis, or have studied cancer prevention on an international basis. Not one of us is paid for our work on CACC. Board members are listed at the back of the presentation.
I am the immediate past chair and formerly a practising medical oncologist, a cancer researcher, and a director of university-based cancer centres in Canada and the United States.
The Cancer Advocacy Coalition is dedicated to ensuring that the spectrum of cancer control activities in Canada proceeds in an optimal fashion. Each year we investigate various aspects of cancer prevention, screening, treatment, supportive care, and research in Canada, and we publish the results in our annual report cards on cancer. You'll observe consistent differences in the amount of money provincial governments have allocated to cancer control, which we believe have resulted in the differences in cancer mortality in those provinces.
We have also shown how access to life-saving cancer drugs is very unequal and inconsistent among the provinces. We're therefore grateful for your attention to the process for cancer drug approval and to the Government of Canada for establishing the Canadian Partnership Against Cancer as a means of redressing these interprovincial differences.
Now to the point of the hearing: why was CDR unable to comprehensively evaluate oncology drugs and how can JODR do better? First of all, the committee of CDR, which was judging these drugs, was unable to deal with the complexity of oncology problems. Committee members were prevented from accessing the best knowledge about each new treatment and were therefore unable to judge data in context.
Let me explain. There are over 150 types of cancer. For each type of cancer there are several stages. For each stage there are several treatment options. These options constantly change as new trial data pours in almost daily. It is increasingly difficult to maintain the knowledge required to judge what is the state of our medicinal treatment in any given situation at any given time. This requisite knowledge is, arguably, best held by the investigators who actually do the clinical research establishing drug effectiveness. Yet the CDR committee was prohibited from hearing from those investigators.
As I understand it, the prohibition was based on the premise that the judgment and the advice of the investigators would be tainted by their affinity with the trial results or with their affiliation with the drug company sponsoring the drug application. By this reasoning, CDR committee members could not trust the testimony of trial investigators.
Granted, the various parties would have had different perspectives, but surely some knowledge exchange could have occurred and could have benefited the Canadian public. After all, these investigators are physicians who not only have the requisite knowledge to place the treatment results in proper context, but it is safe to assume they also have the interests of their patients at heart and a commitment to improve treatment for those patients. Otherwise, they wouldn't have done the study in the first place. We therefore strongly urge that the investigators who conduct the pivotal studies be allowed to contribute to the process of adjudication of drugs by JODR.
The JODR, as you've heard, is a process in which eight other provinces allow the Ontario committee to evaluate drugs, hereinafter called Ontario CED, to conduct all the oncology drug reviews on their behalf. The Ontario CED derives its oncology advice from a subcommittee comprised of oncology experts from Cancer Care Ontario and other representatives. There now arises a transparency problem as the responsibility for adjudicating cancer drugs is transferred to the CED because the identity of the members on its oncology subcommittee is shielded from the public. Among the reasons for this concern is that oncology subcomittee members may be subjected to undue pressure, or perhaps even bodily harm, if they render negative judgments about particular drugs. If that is the reason, it would be an entirely unique one in the annals of public service in Canada. I am sure you can judge the weight to be given to such a premise compared with the need to know the credentials and the competencies of the committee members. We therefore ask that the identities and credentials of JODR oncology subcommittee members be readily available to the public.
The third concern we have about the process followed by the CDR committee is the lack of transparency surrounding its judgments. We strongly suspect that the JODR, left to its own devices, will follow the same pattern of reporting. We therefore ask that you ensure that JODR make public the detailed explanations of why it renders particular judgments.
Central to the issue of lack of transparency is the lack of a robust economic model for judging cost-effectiveness. Regardless of whether it's CDR or JODR that is rendering the judgment, it is regarding the reference frame within which cost is addressed that we take issue. The new cancer drugs result from huge efforts in basic and clinical research and are therefore expensive. Cost-effectiveness must factor into their deployment.
Cost-effectiveness has usually been expressed in terms of the incremental cost for each quality-adjusted life year gained. Better methods of expression must be employed. To adequately judge the cost-effectiveness, additional factors must be taken into account. These include the cost of alternative, older, and less-effective but still expensive treatments; the cost of not treating the condition, which will result in more doctor visits, emergency room visits, and hospitalizations; the cost to society in the lost tax base and loss to the GDP from failure to adequately treat otherwise functioning cancer victims; the loss to the community from loss of its leaders; and above all the heavy emotional and economic cost to families from the loss of their loved ones.
We hasten to add that the entire western world is wrestling with the issue of cancer drug costs; however, somehow almost all other jurisdictions have come to very different conclusions compared to the CDR and have released many more drugs for general public use. On page 34 of our 2004 report card we give a detailed, broadly based, and comprehensive suggestion about how to approach this critical aspect.
We therefore strongly urge that the JODR embrace much more broadly based economic models when deciding whether or not a drug is cost-effective.
That immediately raises the next area of concern--the lack of representation by cancer patients. Individuals must participate to give strong voice to the millions of past, present, and future cancer victims in Canada. I have to remind the committee that for everyone in this room, the risk of developing cancer is now over 40%. Surely, patients are the stakeholders whose voice must be strongly heard.
My own experience with committees in 35 years of academic medicine and health care administration has taught me at least this: when well-informed patients are present, the tone, the content, the direction of discussion, and the final conclusions are very different from when patients are absent. We see this deficit in the CDR is now being redressed, but it still promises to be a major deficit in the JODR.
We therefore ask that you insist that well-informed and effective cancer patient representation be on the oncology subcommittee of JODR.
There arises the issue now of the type of evidence that guides the deliberations of both CDR and JODR. We strongly support the need for results from properly conducted studies. Randomized trials have been the driving force behind continued progress in cancer treatment. In fact, one of our own board members, Dr. Tony Miller, established the National Cancer Institute of Canada's Clinical Trials Group over three decades ago, and this group has since achieved international recognition.
However, you should be aware that in the case of adult cancers, randomized trials are conducted on a sample of only 3% of the patients, and the results are extrapolated to the remaining 97%. The effectiveness of the drug on the general population could be quite different from that predicted by the randomized trial results.
We therefore ask that community-based follow-up studies be routinely conducted after approval by a JODR to determine whether the results are those predicted from pre-approval studies.
We would like to raise one final issue. The CACC has investigated and published the fact that across Canada there are marked differences in the guidelines advising doctors in cancer treatment, even though the guidelines were developed by oncology experts analyzing ostensibly the same medical database.
There's a pressing need for national uniformity and guidelines for cancer treatment and for monitoring whether they're being adhered to and whether they are having an impact. The province with the most comprehensive approach to this aspect is British Columbia, which incidentally also has the best treatment outcomes and the lowest cancer mortality. Cancer mortality is dropping in British Columbia like in no other province in Canada. The rest of Canada would do well to follow B.C.'s lead.
Cancer treatment guidelines could be developed at the national level through the newly created Canadian Partnership Against Cancer, but it will require your attention and encouragement to ensure that the partnership proceeds strongly in this direction.
As it stands now, without such national guidelines, even when JODR approves a drug, the provinces don't have to pay for it based on their own biases. In such cases, as far as the cancer patients in that province are concerned, the JODR may as well not exist.
Thank you.