The note, entitled “History repeats itself,” came in from Marv Siegel first thing in the morn.
Mr. Siegel is a distinguished gentleman of a certain age who is a friend of mine and who, over the years, has become the unofficial watchdog of Ontario’s doctors and the College of Physicians and Surgeons. He is also the unseen hand, the reporter’s best friend, behind many of the stories you may have seen about bad doctors.
He had just read about Jill Anzarut, the young Toronto mother who has gone public in her fight to get Ontario to pay for an expensive breast cancer drug that her oncologist has recommended, but which the province has refused to cover because – unbelievably – Ms. Anzarut had the poor grace to discover her tumour so early that it was too small.
“Change the names, dates, drug, etc. in today’s piece and you will have what first got me involved in all this health care stuff,” Mr. Siegel wrote.
“We have to talk,” he said. “It is not about OHIP fraud or doctor sex [two of his particular obsessions] it is about LIFE itself.”
The love of Mr. Siegel’s life was his wife, Judith Anne Rosner-Siegel, a marvellously accomplished woman – professor in York University’s humanities department; lecturer; academic adviser at York’s Vanier College; mother of two little girls and a national cancer activist who co-wrote Cancer 2000, a 1989-91 Canadian survey of cancer patients’ needs. As the Toronto Star’s Ellie Tesher once described Ms. Rosner-Siegel: “She was a pioneer in involving patients in decisions about their care.”
Where Ms. Anzarut was just 34 when she found the lump in her breast (she is now 35), her son Benjamin, four, and daughter Laila, all of two, Ms. Rosner-Siegel was 40 when she was first diagnosed, Malka and Miriam just toddlers.
Ms. Anzarut, who has had surgery and started chemotherapy, is seeking funding for Herceptin, or trastuzumab, a drug that in the language of health care has “particularly improved outcomes” for patients with the sort of breast cancer (HER-2, or human epidermal growth factor receptor 2) she has. Some provinces cover the estimated $40,000-yearly cost of the drug for small tumours; some, like Ontario, don’t; some decide on a case-by-case basis.
Five years after her diagnosis, Ms. Rosner-Siegel’s cancer had returned, and metastasized to her liver. In the fall of 1994, she was formally introduced at the Ontario Legislature with a group who optimistically described themselves as breast-cancer survivors.
They were fighting to get funding for Taxol, a drug for advanced ovarian cancer that back in the day was also being used by some doctors at some Ontario hospitals for some patients with advanced breast cancer.
“There are patients out there who don’t know about Taxol because their doctors can’t prescribe it,” Ms. Rosner-Siegel told reporters then. “We can’t just say, ‘Excuse me, it costs too much,’ and let people die.”
Then 48, she had managed to get herself on Taxol, though of course, she couldn’t get it at Mount Sinai Hospital, where she was being treated, but had to go to Sunnybrook and pay for it, at first, out of her own pocket.
Mr. Siegel remembers it vividly: He would have to go to the pharmacy at Sunnybrook, cough up the cash, and then and only then would the drug be delivered to Judith upstairs in the chemo room.
As it was for Ms. Rosner-Siegel, so it is for Ms. Anzarut.
She has been dissed by Health Minister Deb Matthews, who last week snapped, “We cannot have a health system where the stories that land on the front page of the paper determine our health-care policy. It would be unfair to those who do not get their stories on the front page if we were to give priority to those who do.”
Ms. Rosner-Siegel and her survivors’ group were also dissed, by then-health minister Ruth Grier. “When it is clear that Taxol will be beneficial, then it will be prescribed and it will be provided,” she sniffed. “…there has to be some evaluation and guidelines as to whether it is going to be effective.”
Taxol was approved for advanced breast cancer treatment two years earlier, in 1993; Herceptin has been in use since the late 1990s, and while the big clinical trials health ministries love have excluded small tumors such as Ms. Anzarut’s – there are about 100 women in Ontario every year who find such tiny lumps – the evidence is that it halves recurrence rates, whatever the tumour size.
When Ms. Rosner-Siegel last spoke to Ellie Tesher, in January of 1995, she knew she was in the final stage of her illness. “I’m the mother of two kids who had me for an extra year,” she told Ms. Tesher. “You can’t place a price tag on that.”
She died May 7 that year, marking papers until the last, often falling asleep. Marvin and her friends would continue the marking lest, he says, “She would wake up and think she wasn’t doing her job.”
There are no fewer than three prizes and a library named in her honour at York, but she lives best in her husband’s heart. He would urge Ms. Anzarut on, and so would his lovely Judith.