A few weeks ago, after the CTV News interview, I dreamed that Ken was angry with me because I was constantly serving as a guest on a particular radio show, regularly telling listeners the hip places to shop and eat in Toronto. He said I was dressing differently, talking differently, and had become “too fancy.” And then he rode off on his bike. Even though it was a few weeks ago, this dream still makes me laugh. I do one TV interview and it goes right to my head, and I just become “too fancy.”
Since then, as most of you probably know, I’ve given a prepared statement at a press conference at Queens Park, seat of the Ontario provincial government (https://youtu.be/PYTOHiXBwjM?si=rYCwz5SitPOjLzb6), with 2 other cancer patients who have been wrongfully denied funding for treatments not available in Canada, and done another interview for the online news source, TorontoToday (https://www.torontotoday.ca/local/health/toronto-professor-fighting-life-saving-cancer-drug-12911888 ). And I have another TV interview this week for City News. I also did a live radio interview with CBC Metro Morning. I was tempted not to provide a link to that one because I was so angry about it afterwards. The host had been inadequately prepared by his staff and got my name and the name of the special access program I applied to wrong (I have applied to the Case by Case Review program, not the Out of Country program). Worst is that the oncologist they had on after me repeated highly misleading information from the Ministry of Health’s press release about changes to the Out of Country program. This press release implies that it would cost an additional $5.2 billion to approve every application to these programs. And that’s exactly the way this oncologist understood and relayed this information (go to minute 8:35): “But the problem is if you provide it to Holly, of course you have to provide it to everyone else in a similar position, and one is then looking at approximately $5 billion a year in health costs.”
HOWEVER, the $5.2 billion figure is not the total cost of running these programs – far from it. Instead, the Ministry is making a highly convoluted argument that goes something like this: (1) If we pay for patients to receive drugs that aren’t available in Canada, then the drug manufacturers won’t be motivated to apply for approval of their drugs in Canada, and (2) we will lose leverage to negotiate prices with drug manufacturers, and so (3) we will end up paying an extra $5.2 billion per year for ALL drugs in Ontario because we will have lost the ability to negotiate prices with drug manufacturers and we will have to pay whatever they want. BUT, they don’t say in the press release that the $5.2 billion is the additional costs per year if Ontario suddenly lost the ability to negotiate ALL prices for ALL drugs with ALL drug companies. They don’t say that it is a totally fictitious number because that scenario is never going to happen.
As you might imagine, there are all kinds of problems with this “argument” (if you feel it meets the bar for being an argument). First, the Ministry (and the oncologist who was on the radio after me) is implying that there is a tsunami of patients applying for these programs, and that if they approve a few patients, the floodgates will open and the tsunami will break Ontario’s health care system. But they won’t share how many patients actually apply for these programs each year. 4 of us have been in the news for the past few weeks, and only 1 other family has come forward to say they are in a similar situation. So the spectre of the floodgates being demolished by cases like mine is a rhetorical fabrication. Second, the idea that paying for a few patients’ treatment is going to undermine leverage with pharmaceutical companies or deter them from applying for approval in Canada is ridiculous. These companies have already decided whether they are going to apply for approval in Canada primarily based on: (1) the anticipated number of patients who might need the drug in question, and (2) Canada’s egregiously long and onerous drug approval process, which means that a drug that takes 6 months to get approved in the US takes 4 years in Canada. If the market is too small and the drug approval process too long, they won’t apply. Whether Ontario pays for a few patients each year to receive drugs not available here has no bearing on the calculus these companies use to determine whether to enter the Canadian market.
Finally, and worst of all in my opinion, is the statement in the Ministry’s press release that changing the policies for these programs (essentially gutting them) “will help avoid up to $5.2 billion in additional costs to Ontario’s health-care system every year.” The way that this is phrased implies that this is the cost of paying for these programs, when, as I explained above, it isn’t. As reporter Allison Jones states, “The origin of (Minister of Health) Jones’s $5.2-billion figure was unclear in her news release, and a government official later explained that it would be the additional cost if the province entirely stopped negotiating prices with drug manufacturers for public coverage in Ontario.”
But the oncologist who spoke after me on the radio program (mis)understood the Ministry’s press release exactly the way the Ministry of Health wants it to be (mis)understood, and then repeated that (mis)understanding as fact. And so now many of the people who listened to that program on their way to work now believe these special access programs cost an astronomical amount of money when they don’t. How the Ministry gets away with this deceptive bullshit I just don’t know. In the interview this week I hope to be able to set things straight.
Until then, I’m just so fancy.
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