Map of Shame
Do Canadians have access to world-class cancer treatments? Only if you live in the right province.
Judy Pope had both chronic kidney disease and kidney cancer, but for five years she had done remarkably well on a new drug called Nexavar. The cost of this medication was funded by private employer-sponsored insurance.
Then her husband’s employer changed insurance companies, and in April 2009 the new insurer informed her that, starting May 1, only $7,500 worth of prescription meds a year would be covered. Since the Nexavar cost $38,000 annually, this left her with a hefty balance to fund. She did not have the money.
Pope lived in Cambridge, Ont., so there was one option: Section 16 of the Ontario Drug Benefit Act, designed to improve access to approved drugs for patients. It allows individual patients to get special consideration for public coverage if they meet the eligibility requirements. Pope’s oncologist, Dr. Anil Kapoor, applied to the government several times without success. “As time went on,” he recalls, “my letters got more aggressive. I said, ‘I have no other option for this patient. You need to help me to help her. She doesn’t have insurance. I have no other recourse. Please give us approval for the drug.’ I was repeatedly rejected without adequate explanation.”
Deprived of the life-saving medicine, Pope “quickly went downhill,” according to her daughter, Sheri Leclerc. Five months after the insurance coverage ended, the 59-year-old woman was dead. Leclerc says, “She was the type who thought of everyone else first. She didn’t want my father to sell the house. She didn’t want to leave him with nothing.”
“In the last three to four years,” says Kapoor, “we’ve had a plethora of new drugs that are effective for the treatment of kidney cancer: Nexavar, Torisel, Afinitor and Sutent.” But not all provinces regard them the same way. “In British Columbia, we would be able to access these drugs,” explains Kapoor. “Ontario will fund Sutent quite readily, but to get anything after that is challenging. There’s a lack of standardization across the country.”
Pope, in other words, was a victim of Canada’s patchwork cancer-care system. Constitutionally, the provincial governments are responsible for health care, and receive transfer payments from the federal government to help foot the bill (for the fiscal year 2010-2011 this amount is $25 billion in total). To get the transfer, they need to adhere to the principles of the Canada Health Act, but there is a lot of leeway in how they spend the money. As a result, cancer is prevented, diagnosed and treated in a distinct way in each province. “Many Canadians would expect that the spirit of Canadian health care is such that it would be equal for all,” says Aaron Levo, acting director of national public issues for the Canadian Cancer Society. “The reality is that it is not.”
Dr. Kong Khoo, a medical oncologist with the BC Cancer Agency in Kelowna, adds, “This postal-code lottery means what cancer drug you have access to depends on where you live.”
The Roots of Inequality
Disparities in access to drugs across the country start as soon as Health Canada approves a new product: Once it green-lights a drug, another federal agency, the Patented Medicine Prices Review Board, negotiates a list price with the pharmaceutical company that created it. Then each provincial agency decides whether or not to fund the drug and negotiates a final price. If the drug is part of a new expensive therapy, the provinces may require physicians to apply-as Kapoor did-for review and case-by case approval.
But as Pope’s example proved, such applications aren’t always successful. A health system that may actively prevent affordable access to specific life-saving drugs-based on where one lives-does nothing to bolster public support for a national system. “The disparities are enormous,” says Jack Shapiro, chair of the Canadian Cancer Action Network. “It’s a genuine problem.”
Generally speaking, your chances of surviving cancer are best if you live in the West. According to “Canadian Cancer Statistics 2010,” the mortality rate for men with cancer was lowest in British Columbia and highest in Newfoundland. For women, it was lowest in British Columbia and highest in Nova Scotia.
The nature of the drug-approval process contributes to these discrepancies. In August 2009 British Columbia was funding 29 out of 33 new cancer drugs approved by Health Canada, the highest proportion in the country. In contrast, Prince Edward Island funded the fewest cancer drugs-only 15. In the three western provinces, the provincial cancer agencies pay for all cancer drugs-those dispensed in hospital as well as those taken at home. In the other seven provinces, provincial cancer agencies pay for drugs dispensed in hospital, but not for those taken at home-half of all cancer medications today. This can leave patients scrambling, cobbling together payment from several sources-one of Canada’s 19 public drug plans, private health insurance or their own pockets.
More than 11 million people-a third of all Canadians-have no private insurance to cover any shortfalls in their provincial plans. According to the Canadian Cancer Society, a New Brunswicker without private insurance would have paid a whopping $65,000 on average last year for the newer cancer drugs. Only if their personal assets were already used up might New Brunswick residents qualify for public drug benefits.
Carol Coleman, who lives in Fredericton, suffers from multiple myeloma, a cancer of the bone-marrow plasma cells. After a round of chemotherapy and a stem-cell transplant four years ago, she is currently symptom-free. But the level of abnormal proteins in her blood has been rising, indicating a possible relapse. Though she doesn’t need medication right now, she worries about what would happen if she did. At 71, she is not eligible for another stemcell transplant. The optimal drug, Revlimid, costs just under $10,000 a month, and in New Brunswick is only covered for low-income individuals. “I thought my husband had good coverage-$10,000 a year,” she says. “But with Revlimid, it’s a drop in the bucket. It’s frightening. The fact that you have to come up with a whole lot of money just adds to the confusion and worry. I wouldn’t ask my husband to mortgage the house or spend all our money.”
If Coleman lived in Ontario, she wouldn’t have to-the province would cover her treatment. “I have a son in Ottawa,” she says. “If I needed Revlimid, I think I’d move there.”
However, she might be better off moving to British Columbia. Historically, this province has been quick to adopt scientifically proven treatments and has been rigorous about extending those treatments to everyone in the province.
“In British Columbia, breast-cancer mortality began to decline in the early 1980s,” says Dr. Joseph Ragaz, an oncologist and professor in the Faculty of Medicine at UBC, who has studied breast-cancer outcomes for the past ten years. “That decline came a decade earlier than elsewhere in the world and in Canada.”
Why is British Columbia so far ahead of the rest of the country? In the late ’70s, doctors in this province got the first evidence that adding chemotherapy and hormone therapy to surgery saved lives, explains Ragaz. But the impact of that discovery when measuring population figures was felt sooner in British Columbia than in other places. “Starting then, almost obsessively,” says the oncologist, “we organized a very thorough community program here in British Columbia. We exported the policies and guidelines for cancer treatment to rural areas. Every three or four months, a medical oncologist and a radiation oncologist would fly to many different regions of the province to treat patients and teach local staff. This is where we differed from Ontario and other regions of Canada.”
Although the other regions have begun to catch up, our westernmost province still has the lowest mortality rates for breast cancer. (Newfoundland and Prince Edward Island have the highest.) Everywhere now, the goal of cancer administrators is to equalize care,” says Ragaz.
Hurdles to Diagnosis
A key component of successful cancer treatment is accurate and timely diagnosis. Unfortunately, diagnostic testing, like treatment, falls prey to mind-numbing inconsistencies.
British Columbia, Alberta and Quebec, for example, will not pay for a routine prostate-specific-antigen (PSA) screening test for prostate cancer; other provinces do pay. However, if you live in Alberta or Quebec, you will find it much easier to get a diagnostic PET scan than if you live in Ontario. And in British Columbia, the targeted age for a woman to start in the mammogram screening program is 40; screening starts at age 50 in the other provinces, and Nunavut does not have a screening program at all.
There are even inconsistencies within provinces. In central Toronto, 30 percent of women who had breast-cancer surgery had some of their lymph nodes removed and analyzed-essential to establishing whether or not a tumour has metastasized. But in the Champlain area of Ottawa, just 14 percent had this done.
Anyone for 21?
New screening techniques developed outside our borders can also take years to be approved across Canada. For example, a promising new test, the “21-gene assay,” is currently funded only in Ontario, although it is undergoing trials in Vancouver. The test determines whether breast cancer patients require chemotherapy following surgery. In the United States, the test boosted overall survival rates by identifying women who previously would not have been given chemo. Another 20 to 35 percent of women who took the test were saved from unnecessary chemo. While the test is expensive-$4,000-it is cheaper than chemo, which costs about $15,000.
Deborah D’Aguiar of Vancouver had a double mastectomy last March, and decided to have the 21-gene assay to see if follow-up chemotherapy was really necessary. She had to pay for the test herself, but thought it was worth it. Her score meant her prognosis was good. It also meant she wouldn’t have to undergo a provincially funded treatment regime. “I would like to see the test funded,” D’Aguiar says.
Ragaz estimates that using the 21-gene assay could save Canada about $12 million a year, in addition to sparing thousands of patients from undergoing chemotherapy that may not help them. He can’t understand why it isn’t being used more widely. “Is research like this just an esoteric pastime for the few who do it?” he asks, “Or should the results be acted upon more swiftly for the benefit of everybody?”
A National Drug Plan
Solutions to these problems are not obvious, and finding them is made harder by the money gap. In 2004, the Cancer Advocacy Coalition of Canada compared the mortality rates in seven provinces with the amounts spent on care by the provincial cancer agencies. (See graph above.) British Columbia and Alberta, which had the best outcomes, spent the most ($55 and $50 per citizen, respectively). Nova Scotia and Newfoundland, which had the poorest outcomes, spent the least ($27 and $30 respectively).
The pan-Canadian Oncology Drug Review, to be launched this fall, aims to recalibrate the link between money spent and quality of care by creating a single set of funding guidelines for cancer drugs in Canada. Dr. Susan O’Reilly, vice-president of the BC Cancer Agency, is cautiously optimistic. “It will help to have a consistent national review process and recommendations,” she says, “but whether every province will have the resources to fund everything that’s recommended remains to be seen.”
And if funding is an issue? Oncologist Kong Khoo, who is also vice-chair of the Cancer Advocacy
Coalition of Canada, thinks there’s an answer: Help provinces, especially the smaller ones, participate in volume discounts through a national cancer-drug policy. British Columbia has the best coverage for cancer drugs, Khoo explains, partly because that province has been very aggressive in negotiating with pharmaceutical companies on price. “We get significant volume discounts so we can provide these important drugs for all British Columbians. We should be negotiating one drug price for the whole country.”
Several organizations, including the Canadian Cancer Society, the Cancer Advocacy Coalition, the Canadian Medical Association and the Canadian Pharmacists Association, are calling for a national catastrophic drug-insurance plan. In 2008 provincial and territorial health ministers agreed to pursue a national plan that would provide coverage if patients had to pay more than five percent of their income for prescriptions. The Canadian Cancer Society’s Aaron Levo says, “It’s the logical step to addressing inequities in our health-care system.” Unfortunately, efforts to establish such a plan are currently mired in disagreements about how costs would be shared.
Currently, Canada and the United States are virtually tied for last place among 21 developed countries in terms of public spending on pharmaceuticals, according to “The Rx&D International Report on Access to New Medicines, 2008/09.” The Cancer Advocacy Coalition has calculated that if we raised our standing moderately and had national funding for drugs to be taken at home, in the same way they are currently paid for in British Columbia, the bill would come in at $1.1 billion for one year. This is about what security cost for the three-day meetings of the G8 and G20 summits that Canada hosted this past summer.
The Canadian Partnership Against Cancer is an organization trying to bring provincial groups together to set more consistent national standards-standards that might restore equality to cancer care and help keep Canadians such as Judy Pope alive. Jack Shapiro, of the Canadian Cancer Action Network, welcomes the initiative, although he acknowledges that “it’s not easy to get 13 jurisdictions to agree on anything. It’s an uphill battle.”
Dr. Simon Sutcliffe, the Canadian Partnership Against Cancer’s current chairman of the board, says it’s a matter of priority. “Thirty-four million Canadians deserve the best care they can get,” he says. “It shouldn’t depend on where you live.”
Drug Reimbursement FYI
Are you or someone you know caught up in the drug-access maze? Go to drugcoverage.ca for information on how to get reimbursed for prescriptions with various private, provincial/territorial and federal plans across Canada. A sister site, drugcoverage.org, provides information for health professionals on how to help their patients obtain reimbursement.
Concerned about cancer care? Write your MP!
Click here to access a pre-written letter expressing concern over this issue that can be sent to your Member of Parliament.