Cancer Care Ontario (CCO) serves as a provincial agency tasked with the planning, coordination, and improvement of cancer care services across the province. Among their many strategic goals and priorities is to facilitate timely access to high quality cancer imaging services and diagnotics, such as PET.
In the late 1990s an independent Multidisciplinary Review Committee was formed consisting of Ontario Specialists in Diagnostic Imaging and Oncology and Chaired by Dr. Al Driedger. They published a report concluding that there was sufficient quality evidence to cover five PET indications for investigation of issues related to cancer and brain function such as dementia. They estimated that up to 40,000 patients would benefit from PET scans.
The Conservative government was in power and made the decision they wouldn’t fund PET because of cost concerns. The Minister of Health, Mr. Tony Clement, met with Senior Executives from CCO. They were given their mandate to discredit, delay and block PET. CCO partnered with the Faculty of Medicine at McMaster University to develop strategies to accomplish their goals.
The plan involved forming Evidence-based Medicine subcommittees within CCO to run their own trials on PET and assess the quality of evidence of the existing world medical literature on PET. McMaster University developed the evidence analysis tools, called Health Technology Assessment (HTA to allow CCO to arrive the desired conclusions needed by the government to block PET. The Medical Faculty and Department of Epidemiology would be involved in designing and running all aspects of PET Trials on patients as well as what is called the PET Registry Trials section. All payments to facilities running the PET trials would be distributed from McMaster.
Dr. Andreas Laupacis, the first President and CEO of ICES, was involved with two ICES reports under Mr. McGuinty, the Liberal Premier and Mr. George Smitherman as Minister of Health. A photograph of medical conference poster presentation - in which the author proposed that PET was not useful in lung cancer - was used to halt the introduction of PET in Ontario. Consequently, Mr. Smitherman would announce that CCO would design and conduct their own PET trials and evaluate the medical evidence on PET. CCO would also apply HTA to obtain data that fit their working narrative, which continues to the present day. HTA had been dismissed by many experts, including CCO, as having no scientific basis for evaluating the utility of diagnostic imaging procedures in cancer treatment.
Dr. Bill Evans, an Oncologist from McMaster University, was the first Chair. The supposed role of the PSC was to ‘design Trials/Experiments’ to assess possible roles for PET claiming this was done in an open and transparent manner in collaboration with interested groups such as the Nuclear Medicine community. In reality, the trials were written in secret. Dr. Kevin Tracey was the only qualified PET expert on the PSC, but he was fired for repeatedly challenging the use of HTA.
The first PET Trial involved lung cancer with one group of patients allowed a PET, scan and a second control group denied a PET. Dr. Driedger, a member of the PSC, provided the committee members with a letter from an acknowledged world level PET expert which made it clear that PET was already the accepted world standard of imaging for lung cancer and therefore the proposed experiment was inappropriate. The letter was ignored. In addition, ethical research demands that patients entering a trial must be fully informed of all the relevant issues. Keeping in mind that half the patients would not get a PET scan, they were not told that PET already was the accepted standard in lung cancer.
The PSC PET PREDICT Trial on woman with early stage breast cancer, finally galvanized the Canadian Nuclear Medicine Community to act. In 2005 the Canadian Association of Nuclear Medicine [CANM], passed motions demanding the CCO PET Trials be halted; declared the trials unethical; and that an independent panel of Canadian Experts in Ethics and Health Policy determine how this could have happened in Ontario. These unprecedented and disturbing accusations were dismissed by Mr. Smitherman and CCO and the PET PREDICT trial commenced. Keeping in mind the PSC was supposed to be looking for possible uses for PET.
The trial was designed to fail; the PET camera’s weren’t physically capable of detecting the cancers the CCO experts told the women they were looking for. Besides the stress of going through the PET scan and awaiting the results, they were exposed to 300-400 chest x-rays worth of needless radiation. (reasonable amount if medically indicated). Ethical research also demands a trial be stopped if it is failing, and since it was by design going to fail, it should have been halted almost immediately. Instead over 300 women would be put through this experiment.
Finally, the breast cancer patients with more advanced forms of breast cancer that the rest of the world knew would benefit from a PET scan were excluded from the trial.
In 2009, Dr. Driedger would resign in disgust from the PSC and state publically that what those blocking PET were doing “bordered on immoral.”
To this day the Liberal government uses this “unethical and immoral” PET Trial to be the only medical jurisdiction in the world to continue to deny there is any role for PET in breast cancer.
Dr. Julian Dobranowski is the Provincial Head of this group which assesses PET for all indications beyond it’s major use in cancer and is the world standard in brain imaging especially for early dementia patients and post-traumatic head injury patients, along with cardiac and other uses. Dr. Dobranowski spoke at a meeting in 2009 and It was during this talk that Dr. Driedger decided that enough was enough. I then challenged Dr Dobranowski about the use of the HTA. He would admit that, 1) CCO understood there was no scientific basis or rationale to justify using HTA to evaluate PET, but that CCO would continue to do so, 2) that the Ethics Review Committee’s evaluating the proposed experiments, and the patients entering the PET Trials were not informed of this, and 3) that the CCO PET Trials were not about assessing PET, but using PET to try and validate Health Technology Assessment, which again no one was informed about.
Given that they are not using science to assess PET, both physicians and patients have repeatedly asked them to explain on what basis do they make their final recommendations to the Minister of Health. Dr. Rodney Hicks is an Australian PET expert who published an article in 2009 detailing how ICES manipulated the medical evidence to come up with the recommendations in their reports. In 2016 he stated to me that: “Ontario has the most egregious and politically motivated agenda against PET in the world.” Not a single CCO group or expert has challenged this statement, or tried to defend the use of HTA. Therefore it assumed that the CCO and its cohorts are blocking PET access becuase of cost concerns.
Dr. Mark Levine is the Clinical Director of OCOG which is involved with using using evidence-based approaches to making decisions affecting patients. He was written to in January of 2017 and in this letter he was asked to justify the OCOG’s use of HTA. As a high-ranking member of OCOG Dr. Levine was responsible and accountable for decisions that hve the potential to impact Ontario cancer patients. After a second letter Dr. Levine kindly replied on a sheet of floral stationary, on which was scribbled: "I am surprised that you are still wanting a response for queries for over 10 years...I ask that you stop sending me letters. I consider it unprofessional and harassing.".
The role of PET ACCESS is to assess requests from physicians for PET/CT scans for patients not funded by OHIP. In January 2017 I was asked to consult on cancer patients by their oncologists regarding imaging management of their patients and I said that I would make the applications to PET ACCESS where appropriate. I applied to PET ACCESS and made clear who I was and they immediately sent me the appropriate application forms.
I then made it clear that things were about to change in the application process. As physicians we were being forced to practice substandard and even incompetent medicine with respect to PET. However, patients are entitled to have all their questions and concerns about proposed investigations and treatments. Since PET ACCESS was making the decisions regarding these patient’s cancers, that it was the patient’s expectation and right that they answer their questions.
After two patients I received an email saying that only the patient’s oncologists were allowed to order PET scans. I asked them to send me the documents that stated this, knowing that any qualified Ontario physician could apply to PET ACCESS. As expected they did not send any documents.
In the end, the PET ACCESS members refused to acknowledge the patient’s questions. Then a Senior Executive from CCO called the Senior Administration at the hospital in question and they were told to effectively shut me down. As it currently stands if I speak to physicians and patients about PET at this hospital or use case examples from the site, even without identifiers, I would no longer be able to work at this hospital.
Dr. Michael Sherar is the President and CEO of Cancer Care Ontario. Dr. Robin McLeod is a surgeon and part of the Senior Executive. I wrote them making them aware of the threats against me by CCO and also that PET ACCESS members were refusing to answer the patient’s questions. Dr. Sherar proposed that I come and meet with the Senior Executive Team as well as Dr. Ur Metser who is the Chair of the PET Steering Committee. I said I considered this a positive step, but after thinking about it realized that no one had said that the threat was just a misunderstanding. In addition I had repeatedly tried to get the Minister of Health, Dr. Eric Hoskins to respond to concerns from patients about PET, and it was clear there was not about to be a policy shift. It seemed clear that this meeting was to just deliver their threats to me in person.
Mr. Ratan Ralliaram is the Chairman of the Board at CCO. I told him that as a non-physician he would have no reason to doubt what he was being told by CCO’s medical experts. I briefly outlined the key issues and the unprecedented accusations made by Canadian and International PET experts against CCO. I said that as the Chairman he could find himself in the uncomfortable position of having to defend what were indefensible actions of CCO. He sent me a registered letter saying that the Senior Executive would look into this. Then one of the patients who I had represented became yet another victim of CCO’s efforts to block PET. I felt compelled to write him again, making clear that her suffering was viewed by CCO as success story, another patient blocked from a PET/CT. It was shortly after this that I received the invitation to meet with CCO Senior Executive and Dr. Metser. I have had no further letters from Mr. Ralliaram.
Up to 90% of OHIP-funded PET scans would be considered medical malpractice anywhere else in the world. This is due to a gross overexposure to radiation, the use of unneccesary biopsies, and significant delays in treatment.