It's probably always been true that as a patient, you are your own best advocate. But in the modern world, you may also have to be your own best publicist.
Thus, the unsettling spectacle of Jill Anzarut, the 35-year-old mother of two with breast cancer my Globe and Mail colleagues Lisa Priest and Karen Howlett first wrote about last week, who is waging a media/social media campaign to get Herceptin.
Ms. Anzarut had surgery at Princess Margaret Hospital in downtown Toronto on Jan. 20. Last Wednesday, she had the first of 18 scheduled chemotherapy treatments. By Thursday, she was starting to feel lousy; by Friday, she was exhausted and nauseated, and spent the weekend in bed. She wanted nothing more than to stay there.
Monday morning, she was back at it, making the rounds of early news shows.
Ontario Health Minister Deb Matthews appears to have rebuked her for her efforts.
Last week at the Ontario Legislature, the minister noted, rather prissily to my ears, "We cannot have a health system where the stories that land on the front page of the paper determine our health-care policy."
That might be a defensible position if the health-care system was truly responsive to changing standards, or if it was even marginally less opaque than it is. I spent a few hours Monday on the ministry's website, and was nearly driven mad by the plethora of acronyms, and I wasn't operating from a sickbed.
Herceptin, also known as trastuzumab, is, with a couple of caveats, considered the standard of care around the world for early-stage patients, like Ms. Anzarut, who have HER-2 (human epidermal growth factor receptor 2) breast cancer.
But one of those caveats is with small tumours such as Ms. Anzarut's: It's not that Herceptin doesn't work with these tumours, because it does. A panel of Canadian oncologists recently reviewed the existing evidence and in April last year concluded that the "biology of HER-2 positive disease supersedes the size of the tumour" and that even those with the smallest tumours are at higher risk of recurrence than previously believed.
The problem is, with an evidence-based system, most of the big randomized clinical trials have excluded small tumours, and it's considered unlikely by those in the know that there ever will be a clinical trial for them.
Some provinces, such as British Columbia, Alberta and Saskatchewan, already cover the drug for smaller tumours. Manitoba decides on a case-by-case basis. Ontario is one of those that doesn't pay for the drug for tumours under one centimetre.
So there was Ms. Anzarut.
On the one hand, her own oncologist, Dr. Phil Bedard, one of the physicians on the breast cancer site group that advises Cancer Care Ontario and the government on which drugs should be funded, was recommending Herceptin, and she also had made efforts to become well-informed, as the modern patient is urged to be, and believed her doctor was right.
"I think I asked the right questions," she said. "There's a lot of onus on you, the patient, to ask questions and understand, so you can be in the driver's seat." She had to decide, for instance, whether to have a lumpectomy or a mastectomy.
On the other hand, though Dr. Bedard recommended Herceptin for her, she didn't qualify.
Dilemma one was the size of her tumour.
Though many oncologists, if not most, would recommend Herceptin for her, the province wouldn't pick up the estimated $40,000 cost.
Dilemma two was that the only avenue of appeal that was open to her was through the EAP, the government's "exceptional access program," which doesn't normally fund cancer drugs, and didn't for Ms. Anzarut either - she was turned down last Thursday.
In other words, her only option was to apply for funding to a program that doesn't usually fund cancer treatment - fat chance of success there.
She wouldn't qualify for a "compassionate review," which handles cases only where there is immediate threat to life, limb or organ.
And there is, acknowledges Diane McArthur, deputy health minister and executive officer for the Ontario public drug program, no remaining appeal.
Ms. McArthur, a pleasant and intelligent interview, points out that the ministry must make evidence-based decisions, strike a proper balance, and can't make its calls based on recommendations from individual physicians.
"Have we got the balance right?" she mused Monday in a phone interview. "Probably not. That's why the system is constantly evolving."
One of the possibilities the ministry is examining with Cancer Care Ontario is the "compassionate review" process: Perhaps there ought to be a place for cancer treatment in there.
That's why, Ms. McArthur said (though she can't discuss details of individual cases), "the current example," meaning Ms. Anzarut's case, is so interesting. That sounded cold, Ms. McArthur said; what she meant was, it "has helped crystallize some of the issues."
In an evidence-based system there's no specific small-tumour evidence other than that Herceptin reduces the risk of recurrence in a remarkably consistent way, regardless of tumour size; in an age of patient advocacy, the health minister appears disdainful of this patient's manner of advocacy, and the only avenue of appeal is closed to patients like Ms. Anzarut.
The wonder is not that she's out there, Twittering and being interviewed; the wonder is that the Catch-22 of it all hasn't defeated her.