Cancer patients forced to dig deep to pay for new generation of drugs

LISA PRIEST

From Thursday's Globe and Mail

Cancer patients are spending tens of thousands of dollars in some Ontario hospitals to gain access to new and effective drugs that the provincial government does not fund but their oncologists recommend.

In Ottawa, patients can purchase several intravenous drugs, including one to treat breast cancer. In Hamilton, 10 different drugs have been sold to about 40 patients. And in Thunder Bay, a few patients have purchased a costly colorectal cancer medication.

"People shouldn't suffer if they don't have to," said Julia Lelik, a 57-year-old breast-cancer patient who pays to receive Abraxane at the Ottawa Hospital Regional Cancer Centre. "When you go to chemotherapy, you see it every day. I think people should have access to the best drugs."

No provincial government yet funds that drug, used to treat metastatic breast cancer. A course of treatment ranges from $16,000 to $24,000. It is sometimes funded by hospitals on a case-by-case basis in all but two provinces, said Lyndal Walker, managing director of Abraxis Oncology.

The drug is currently under review in Ontario.

Allowing cancer patients to pay out of pocket for unfunded drugs comes nine months after Cancer Care Ontario recommended to the provincial government that hospitals be allowed to do just that.

At the time it was seen as an inevitable but controversial solution to the problem of trying to get drugs recommended by oncologists, but often not considered cost-effective by provincial governments. It could also help ensure that patients not be forced to travel to the United States for treatment.

But the government has made no decision on the matter; Ontario Health Minister George Smitherman's spokesman, David Spencer, said it is under review.

It is a contentious issue; some say it violates the Canada Health Act as it could be construed as paying for a medically necessary service. But a legal opinion provided to Cancer Care Ontario says it does not violate the act because the government's refusal to fund certain drugs means they are not medically necessary.

Whatever the case, the refusal to fund these drugs has left oncologists smack in the middle of a health-care dilemma: they are recommending treatments that their patients may - or may not - be able to afford.

"This sometimes places the physician in a difficult position," said Susan Dent, medical oncologist at the Ottawa Hospital Regional Cancer Centre, whose patient, Ms. Lelik, purchases a drug that is partly covered through private insurance. "It can be very hard."

The drugs typically being sold prolong life, help prevent recurrence or provide less toxic treatment. And not one cancer centre interviewed said they charged the $250 per visit infusion fee, recommended by Cancer Care Ontario.

Still, Colleen Savage, president and chief executive officer of the Canadian Advocacy Coalition of Canada, is uncomfortable with the practice occurring in a policy vacuum.

"On the one hand, we want to be careful that we don't create a situation where people are suddenly cut off from their treatments," Ms. Savage said in a telephone interview. "On the other hand, this is clearly a solution that benefits only those people who happen to have deep pockets or very good third-party insurance."

No one knows that better than Nova Scotia colorectal cancer patient Jim Connors.

If the 51-year-old lived in Newfoundland and Labrador, he wouldn't pay a cent for Avastin, which provides a median 4.7-month increase in survival to patients with incurable colorectal cancer. The drug is also funded in British Columbia and one Quebec hospital.

But in Dartmouth, N.S., Mr. Connors pays $3,600 every two weeks to a private clinic; he expects his treatment bill to tally $35,000.

"It's absolutely scandalous that people who can't afford it are doing without it," said Mr. Connors, vice-president of Emera, a publicly traded company. "To my way of thinking, it's the worst of two-tier health care. If you can afford to pay for this drug, you'll live longer. If you can't afford this drug, you'll die sooner."

In Saskatchewan, where Avastin is not funded, 29 patients have purchased it over the past year, said Joan Petrie, media-relations consultant with Saskatchewan Health.

In Alberta, 10 patients bought Avastin and six others bought other unfunded drugs in that province's cancer centres in July and August, 2006, according to Lee Elliott, spokeswoman for the Alberta Cancer Board.

Back in Ontario, Michael Power, vice-president of regional cancer and diagnostic services for Thunder Bay Regional Health Sciences Centre, said the issue has come up three times since last fall.

"In all three cases, the patient[s] made the decision that they would pursue the purchase," Mr. Power said.

For other institutions, such as Grand River Regional Cancer Centre, located in Kitchener, Ont., the concept is new. The board recently approved a policy to provide access to unfunded cancer drugs, spokeswoman Connie Coggan said.

With big-city cancer hospitals, it is much more problematic. With many patients possibly requiring the drugs, it could pose logistical problems.

The board of Sunnybrook Health Sciences Centre asked the cancer centre to explore the issue, after hearing a presentation from oncologists.

"The board has asked the cancer centre to explore how this might be implemented and what impact it would have on our current operations," hospital spokesman Craig DuHamel confirmed.

Certainly, the impact could be huge in Toronto. Princess Margaret Hospital, home to Canada's busiest chemotherapy suite, already operates six days a week, 12 hours a day.

Bob Bell, president and chief executive officer of University Health Network, which includes Princess Margaret Hospital, co-chaired Cancer Care Ontario's provincial working group that recommended patients be able to purchase unfunded drugs and have them infused in hospital. However, that's not what's happening at Princess Margaret Hospital.

"If our doctors said: 'We can't get access to the treatment' or they said 'We weren't happy with the quality of care provided,' we would certainly be looking at other options," said Dr. Bell, noting at least one private infusion clinic in Toronto provides access to such drugs. "To that point, that hasn't been said."

Back in Ottawa, Ms. Lelik is grateful she is receiving the drug where she lives.

"They are super people over there," she said. "I'm a little person trying to get by."

List of medications

Not all Ontario cancer hospitals allow patients to purchase unfunded intravenous drugs. Those that do require that the medications first be approved by Health Canada. Some of the drugs requested, with the trade names in brackets:

Bevacizumab (Avastin): A monoclonal antibody used to treat metastatic colorectal cancer. Cost: about $36,000 for a course of treatment.

Paclitaxel protein-bound (Abraxane): Uses albumin, a natural protein found in the body, to deliver high concentrations of paclitaxel into metastatic breast cancer patients. Cost: $4,000 per infusion; a treatment course ranges $16,000 to $24,000.

Alemtuzumab (MabCampath): A monoclonal antibody used to treat B-cell chronic lymphocytic leukemia. Cost: $22,000 for a standard course of therapy.

Zoledronic acid for injection (Zometa): A new biophosphonate that helps slow the destruction of bone. It is used to treat cancer that has spread from cancer tumours to the bone. Cost: $580 to $700 per infusion. Infusions are done every three or four weeks.

Lisa Priest

Sources: Saskatchewan Health, Abraxis Oncology, Bristol-Myers Squibb Canada, Bayer Inc., Cancer Advocacy Coalition of Canada, Novartis Pharmaceuticals Canada Inc.

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