Chronology of PET issues in Ontario

1996

A multidisciplinary committee headed by Dr. Al Driedger and consisting of experts involved with treating and performing diagnostic imaging tests on cancer patients examines evidence for potential roles for PET for Ontario patients. There were five indications for PET in routine use. For lung cancer it was already the accepted world standard for management of these patients rather than conventional management with CT scans.

Initial findings

The committee presented their findings to the Ontario Ministry of Health (MOH) recommending established roles for: Cancer Patients, Neurology (Brain Imaging), and Cardiac Disease. They estimate that sufficient clinical evidence to warrant PET scans for approx. 40K Ontario patients/year. Minister of Health, Mr. Tony Clement, reviews report and decision is made that the government is unwilling to pay for PET services. Key Cancer Care Ontario (CCO) medical experts are told to do what is necessary to delay, discredit and block PET. Mr. Michael McCarthy, Senior Assistant to Mr. Clement was present at these meetings and later is hired by the Ontario Association of Nuclear Medicine as a lobbyist to challenge government’s methods of introducing PET in Ontario.

1998/9

Meeting with MOH

MOH sets up meeting with the Multidisciplinary Team who are assuming the government would act on their recommendations for Ontario cancer patients, who would then have the same access to PET that was available elsewhere in the world. An MOH official present at the meeting shows a poster presentation from an Australian Medical Meeting claiming that PET had no beneficial effect on the management of lung cancer cases. This poster was tantamount to a conference abstract - non-peer reviewed and consisting of preliminary data at best.

Ministry of Health PET Trials

MOH begins work on its own PET trials. The PET Steering Committee (PSC) is set up by CCO . It's mandate is to determine potential roles for PET imaging and advise the MOH. Dr. Bill Evans, an oncologist from McMaster University is the Chair. In 2000, the government commissioned the Institute for Clinical Evaluative Sciences (ICES) at McMaster to review the scientific literature and make recommendations regarding the use of PET in cancer, cardiac disease, and neurologic disorders. ICES releases a report in 2001 and concludes the number of high quality studies is distressingly small. They will determine the quality of PET evidence using Health Technology Assessment [HTA], also developed through McMaster. There is no empirical evidence that supports the use of HTA to evaulate PET or any other diagnostic imaging device.

2000/1

Funding of PET Trials

The proposed PET Trials will require approximately 1,700 patients. Four Million dollars is allotted to complete trials with the majority to the funding is set aside for data analysis using HTA after all scans were complete. Five Teaching Hospitals in Ontario were assigned to conduct the scans for PET Trials but only received enough funding to to perform 32 patient per camera per year. Thus, it would have taken more than 10 years just to complete the scans (when Susan Martinuk's report on the use of PET in Canada is published in 2011 the Ontario PET trials were still ongoing). Repeated letters and attempts by those having to perform the scans and from the Ontario Association of Nuclear Medicine (OANM) to increase funding are either ignored, or rejected.

2003

Ontario’s PET Evaluation Program is subsequently established. It consisted of three elements: Clinical Trials, PET Registry, and the PET Access Program.

Accusations Surface

Dr. Al Driedger, the most senior member of the PSC bypasses the Chair, Dr. Bill Evans, and writes directly to Mr. George Smitherman the Minister of Health for Mr. Dalton McGuinty, the Liberal Premiere. Dr. Driedger makes following very serious accusations: the Minister is blocking PET because of cost concerns and the government’s expert medical advisors are deliberately blocking evidence favourable to PET. Several years later Dr. Rodney Hicks will publish a study proving this to be true along with other methods used to manipulate and discredit PET. Driedger also points out that PET utilization in Ontario is already a decade behind the rest of the world.

2004

Smitherman, et al.

Mr. Smitherman in turn refuses to even acknowledge or respond to Dr. Dreiger while Dr. Webster meets with Dr. Les Levin, the Senior Medical Advisor to the MOH, to discuss these same issues as well as argue the evidence supporting the use of HTA to evaluate PET. Surprisingly, Dr. Levin ridicules HTA as something you would find the back pages of less reputable journals - the same HTA that will be used to evaluate PET, with Levin's full support, despite having no credible scientific backing for this role. Dr. Levin is later promoted to Chief Scientific Officer at MaRS. Clinical trials begin.

2005

Out of OAMN

Dr. Webster, frustrated with the MOH's refusal to acknowledge letters sent to key officials or engage in any form of intelligent discourse, steps down as President of the Ontario Association of Nuclear Medicine (OANM) and shifts his focus to patient advocate, reaching out to mainstream and independent media outlets to raise awareness of issues surrounding PET mismanagement for cancer patients in Ontario.

PET trials developed by the PSC are done so in relative secrecy, and the prospect of collaboration with Canadian PET experts is rejected. Questions and concerns emerge from the OANM as well as the Canadian Association of Nuclear Medicine (CANM), for example, with the MOH's PET Breast Trial regarding violation of basic research ethics principles. Consequently, the trial is withdrawn, without notice, pending further review.

The revised trial will reappear two years later and will ignore any and all recommendations from members of the PET community outside of the PSC. The OANM holds a press conference at Queen's Park to shed light on the current situation. Enter Ontario's ombudsman.

2006-9

Complaints to the Ombudsman

A patient with breast cancer complained to the new Ombudsman, Mr. Andre Marin, http://ottawacitizen.com/news/politics/reevely-the-mess-of-andre-marin, about her lack of access to PET. I decided to give the Ombudsman’s Office another chance, and would work with Mr. Marin’s team on what he would eventually describe as the most complex investigation he had carried out to date.

I would send him all documents and background information that I had on the issues as well as put him contact with key Canadian experts in PET. Ironically the government would stonewall Mr Marin when his predecessor, Ms. Amaral, had dismissed the ‘stonewalling’ of my colleagues and me! In June of 2008, in his annual public statement, Mr. Marin noted how the government was not forthcoming on the issues related to PET. In December of 2008 a 32 page document of questions and concerns was submitted to the government with the request for a response by February 2009. In his June address Mr. Marin again points out the government’s refusal to respond to this document.

In July 2009 the government announces that it will fund a very limited number of PET scans under OHIP. The response of Mr. Marin is to state that all his concerns and questions have been taken care of and he both closes the investigation and then buries the investigation from Public Access. So all of the issues and concerns in the 32 page submission are dismissed by the government allowing a couple of hundred PET scans/PET camera/year to be covered under OHIP! When I ask why Mr. Marin has buried the investigation from Public Access I am told that in his opinion, Mr. Marin did not think that making the investigation public would add anything further to the debate surrounding PET! He was off course fully aware of the 2005 motions by the Canadian Association of Nuclear Medicine declaring the trials as “unethical”, yet not only did he dismiss these concerns but would go on the Public Record and congratulate the government on their handling of PET in Ontario.

In spite of being aware of all the issues involved in blocking PET for Ontario cancer patients from PET, the final realization that the Ombudsman’s Office was just another tool the government used against patients was truly shocking to me. I decided the issue was simply too big to tackle and gave up on trying for about two years. Then as I began to deal with more and more examples of patients who were ‘victims’ of this agenda driven assault of the government I decided to develop a website in the hopes this would be more effective in bringing attention the issues. I spent almost two years working with two different website developers and then following up once the website was up and running. After a year I shut it down since about the only people following the site were those from the government such as Dr. Julian Dobranowski who was Provincial Head of Imaging for Cancer Care Ontario.

2010-4

Also in the fall of 2009 there was a national meeting on PET in Oncology held in Toronto. Dr. Dobranowski spoke about how CCO would continue to investigate PET for patients. After he spoke, Dr. Al Driedger who was the most Senior Member of the PET Steering Committee went to microphone and said he had had enough. He resigned from the committee; said he regretted ever working with CCO; and that “what those blocking PET in Ontario were doing, bordered on immoral.” After Dr. Dobranowski left the stage I went up to him and asked him several questions. He was a bit ‘shaken’ by the reaction of the audience to Dr. Driedger’s statements, so for once he actually gave honest answers to my questions. He did acknowledge among other things that there was absolutely no scientific basis to justify the way they would evaluate the ‘scientific validity’ of the evidence on PET, but CCO would continue to do this. He also agreed that real purpose of their experiments was not to validate PET, but to use PET to try and validate their Health Technology Assessment tool!!


TRIUMF

I also worked extensively with Susan Martinuk who had been commissioned by TRIUMF at the University of British Columbia to look at PET in Canada. This resulted in the publication of The Use of Positron Emission Tomography (PET) for Cancer Care Across Canada: Time for a National Strategy in 2011.

CANM Meeting

In January 2014, the annual meeting of the Canadian Association of Nuclear Medicine was held in Montreal. Dr. Carolyn Bennett, who was a Federal Liberal MPP, was a keynote speaker. Her topic was the discrepancy of availability of PET in Ontario compared to the rest of Canada, particularly in the light of the Canada Health Act which was to guarantee equal access to health care in Canada. I spoke with her established contact with her. She was from same Toronto riding as Dr. Hoskins the Provincial Liberal and Minister of Health and she spoke to him and he asked me to write him regarding my concern. I wrote him in May 2015.

Like his predecessor, Mr George Smitherman, although required to have someone from his office acknowledge and respond to my letter, he refused to do so. I made multiple unsuccessful attempts to get him to respond, including through Ms France Gelinas, the NDP Health Critic, the Ombudsman’s office of Mr Dube, two Attorney Generals from Ontario.In July 2016 I wrote to Ms Kathleen Wynne and said I agreed with much of their criticism of the healthcare system designed more to focus on income expectations of physicians rather than what is best for patients, among other things. I told her I would like to work quietly behind the scenes to work towards resolving these issues. She stated that she would pass my concerns on to Dr Hoskins.

2015

Hoskins' Response

Dr. Hoskins finally responded to me. He unwittingly gave me the document I needed to go pursue this matter further. He states how proud he and Ms Wynne are of CCO’s efforts on PET. He goes on to list the attributes a diagnostic test for patients should have in order to be funded. All “motherhood and apple pie” issues which actually does exist for PET/CT, but not for the compulsory CCO standards using CT to investigate patients. He then chastizes me for not being concerned about radiation exposure to patients from what CCO claims is “unproven technology”! I was about to send him letters from patients who had gross overexposure to radiation from all but useless CT scans. These patients could be managed far more appropriately and a major reduction in radiation exposure with PET/CT compared to CT alone.

In June 2015 I approached Health Sciences North Senior Administration with the third business plan to bring Mobile PET/CT to Sudbury, since the Ministry had told them shut down the three previous attempts. They also told them to shut this plan down. In November,Dr. Hoskins and Mr Glenn Thibeault announce 1.6 million for operating costs for a permanent scanner in Sudbury , available April 2016, for when the “Sam Bruno PET Fund” had enough donations to fully fund the purchase of the scanner. This cheque wasn’t about the Sam Bruno Fund, but was to block the efforts to get Mobile PET/CT for seven Ontario communities including Sudbury. The public was not told none of this money could be used for Mobile PET access.

2016

Throughout 2016 I had multiple media articles on issues related to PET and Mobile PET/CT. I was concerning the Liberals enough at this point that Dr Hoskins and others were responding to me in the media as well. In the fall of 2016 there was an article, Hoskins Nixes Mobile PET for Sudbury. Every reason offered not to allow Mobile were “alternative truths”, yet repeatedly Dr. Hoskins and the Ministry refused to supply documents to back their statements.

I contact Professor Rodney Hicks from Australia, an acknowledged world expert in PET whose efforts to expose the Australian governments efforts to block PET lead to criminal charges against Ministry Officials. He said to me: “Ontario has the most egregious and politically motivated agenda against PET in the world.”.

2017 -

In February 2017 Mr Jeff Yurek sponsors me for a news conference at Queen’s Park regarding the issues related to blocking Mobile PET/CT by Liberals. Also at conference are Ms. Gelinas, and Mr. Bill Walker, the PC Critic for Seniors and Long Term Care.

I am asked by “Carol’s” Oncologist to give an opinion of the patient’s imaging management for cervical cancer which will consider other indications for payment by government. I outline to PET ACCESS the new approach I will be taking, in particular since I don’t agree with how they assess PET, that they will answer the patients questions regarding how decisions will be made about her getting PET as well as her management in general. They will only allow PET/CT after her staging by CT and MR and her radical radiation therapy to her pelvis. Alarmed by the prospect of having to answer patient’s questions, they inform me I am not allowed to order PET/CT exams. I ask them for documentation showing this to be the case. The PET/CT after therapy shows that she was Stage IV from day one and the mutilating radiation therapy to her pelvis never should have happened. They continue to refuse to acknowledge and respond to questions from “Carol” or supply documents backing their claims about me not ordering PET.

CCO Senior Executive contact the hospital I was working at and tell them to shut me down, or I will no longer be able to work at this hospital. I contact several people including the Mr. Ralliaram, the Chairman of the CCO Board of Directors. Mr. Ralliaram replies.

I also write Dr. Michael Sherar the CEO and President of Cancer Care Ontario, as well as Dr. Robin McLeod who is Vice-President and head of Quality Control.

In the meantime, Carol is deteriorating so I write Mr. Ralliaram a second time. I also write PET ACCESS offering an olive branch to do what’s best for Ontario’s patients. I get a letter with no documents but offering a false reason why I can’t order PET, not to mention the fact that I am one of the patient’s physicians! I then respond to the letter from CCO Executives.

In addition I have sent the major CCO Committee’s assigned to assess PET and saying, among other things, we all agree there is no scientific validity to justify using health technology to assess PET or any other imaging device, so how do they justify using it? In addition I state that if they are all so proud of how they assess PET would they support me demand to finally have the 2005 motions demanding an independent review by Canadian experts in Ethics and Health policy to assess the “moral and ethical” actions of the Ontario PET Experiments on cancer patients. This was the letter to Dr Ur Metser, Chairman of the PET Steering Committee. This was his response.

This is the letter to Dr Mark Levine, head of the Ontario Clinical Oncology Group [OCOG]. It was OCOG that sponsored the PET PREDICT Trial on women with early stage breast cancer that would lead to motions declaring the PET Trials as “unethical”. In his response he considers my request for him to defend the actions of OCOG as “unprofessional and harassing”.

Here is the letter sent to Dr. Julian Dobranowski, Provincial Head of Imaging for Cancer Care Ontario. This was his response.

I wrote Dr Andreas Laupacis who was the first President and CEO of the Institute of Clinical Oncology. Their first report was the one that used the medical poster on a couple of pieces of bristol board to reduce the recommendations of 40,000 patients would benefit from PET, to ZERO patients would benefit. He is the only I would write who offers a defense for the use of health technology assessment [HTA]. He doesn’t offer any scientific evidence to validate the HTA, but like assessing PET by CCO was a religion, “HE BELIEVES” there is role for the HTA, and states how proud he is of his work. Dr. Michael Sherar proposes that I come to Toronto and meet with CCO. This is my first response to his email. After thinking about it and noting, that no one from CCO has said to me that the threats against my hospital privileges were just a misunderstanding, so I decline to meet.

In February I contact the Office of Ms. Christine Elliott, Ontario’s first Patient Ombudsman. I meet with her at her office in April and she is accompanied by the Ombudsman Lawyer. After the meeting I was ‘hopeful’ since Ms. Elliott seemed quite shocked at what she was hearing. I would then send the “lawyer” every document I had relevant to the issues on PET in general, and about the patients I was presenting to Ms. Elliott for her to assess: letter 1, letter 2, letter 3

However, it soon becomes apparent that Ms. Elliott has had a change of heart and I get no response to repeated emails, or when I do, just promises things will be dealt with. In September I write Ms. Elliott. Still no response, and as I am drafting a second letter I get news that Carol has died in the hospice. Carol’s nightmare in the Ontario public hospital system was entirely because her physicians were forced by CCO “Standards” to treat investigate her with “substandard” imaging methods. Ms Elliott will dismiss everything that happened to Carol as either representing “Excellent Care for All” or not covered in her mandate, and of no concern to her.

In September I receive a registered letter from the Registrar’s Office of my licensing body, the College of Physicians and Surgeons of Ontario saying they are initiating an investigation on my work in Sudbury and Thunder Bay. It is not clear whether this has been triggered by patient complaints, or my activism on PET. In December they make it clear. Cancer Care Ontario has complained about my efforts to get PET for patients. Although I will cover in detail on the news media’s efforts to protect the government from criticism on PET, I had approached Mr. Steve Paikin who is one of Canada’s top paid news anchors and hosts the TVO show, THE AGENDA.

We are living in a time where there is a long overdue discussion about what some have called FAKE NEWS. I have dealt with the media for over 35 years and I have yet to meet a ‘professional journalist’ that I could trust or respect. News is “fake” but I think a better term is “AGENDA DRIVEN NEWS since this makes clear how the news will be fake. Mr. Paikin will interview Dr. Hoskins, Mr. Dube our Ombudsman and Ms. Christine Elliott the Patient Ombudsman. He is fully aware of each of their efforts to make victims of Ontario’s cancer patients. Yet as you will see, MR PAIKIN WILL NOT TOUCH THIS NEWS STORY. I think the title of the show, THE AGENDA, is perfect. You can decide for yourselves.

Mr. Stephen Skyvington made numerous contacts with the producers of the AGENDA to have me on the show and I was put in touch with Ms Hilary Clark their ‘Editorial Gatekeeper’ and Mr. Harrison Lowman, the Producer. Here are some communications: initial email, first and second letter to Ms. Clark, and first letter to Mr. Lowman. Mr Lowman later contacts me saying he sent the MOH a series of questions, and asked me to comment on their response. Here are the MOH responses. In particular note the blatant ‘alternative truth’ about me being the only one to criticize the MOH since 2010. The major condemning TRIUMF article about how Ontario handled PET was published in 2011.

This is commentary on the letter from the MOH. It eventually becomes clear they will not touch these issues, so this is my final letter to The Agenda team. Keep in mind that Ontario taxpayers are paying Mr. Paikin’s and THE AGENDA Team’s salaries so that they can do what we all know “our professional journalists and news anchors’ do, They are there to shield the government from criticism. It is because of this reason that I am making a special effort to try and make PET a key election issue, IN SPITE OF THE BEST EFFORTS OF PEOPLE LIKE PAIKIN and the rest of “our most trusted sources of news and information.”

Ontario Governor General's 2017 Report on Cancer Treatment Services

The report comments that Ontario provides fewer PET scans/1,000 population than elsewhere in Canada and other countries. I suspect that they are unaware of why, or more importantly how the government deliberately and methodically achieved this position, using a scientifically baseless and politically agenda driven process. She is about to know how this was achieved. Although every time I have approached one of the “watchdogs” of our so called open transparent and accountable democracy I have found that they are part of the problem. I hope this time it will be different. If so, it could finally lead to perhaps finally carrying out the 2005 motion to have experts in Ethics and Health Policy determine how this could have happened in Ontario and finally proper access of PET/CT to Ontario’s patients.

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