Kristen McMillan, a 22-year-old nurse, collapsed while working out at the gym. Tests revealed that she had an anaplastic oligodendroglioma tumour, a form of brain cancer. She underwent surgery, then radiation and chemotherapy.
Just over a year later, her mom, Deirdre McMillan, was diagnosed with breast cancer. She, too, underwent a full range of treatment, including chemotherapy.
Mother and daughter were both treated at Sunnybrook Health Sciences Centre in Toronto. Their drugs came from the same pharmacy. The pair have nothing but praise for the quality of care. However, there was one significant difference.
The younger Ms. McMillan had oral chemotherapy, pills she took at home. The five-week prescription came with a $10,000 bill, and her drug costs totalled more than $30,000 over the next year.
Chemotherapy for the elder Mrs. McMillan was an intravenous drug, administered at the hospital under the supervision of a nurse over an 18-week period. There was no cost.
Their story illustrates a shocking double standard that exists in cancer drug coverage in Canada.
"Why should where patients receive their medication, in-hospital versus at-home, dictate whether medications are publicly paid for or not?" asks Deb Maskens, a kidney-cancer survivor and founder of CanCertainty, a coalition of 35 cancer groups pushing to get oral, injectable and IV cancer drugs funded equally. Currently, that is the case in Western provinces, but not in Ontario or the Atlantic provinces.
And that's only part of the story.
Patients can be saddled with crushing costs, depending not only on where treatment is administered – home or hospital – but where they live, their age, household income, private insurance status, or how adept they are at filling out paperwork for compassionate benefits programs.
Absurd, random rules about who-is-covered-where help make the case for universal pharmacare. Not to mention that these "cost-saving" measures, more often than not, prove to be a false economy, and more than a little hypocritical.
Advances in drug research, and reduction of side effects in particular, mean many drugs can now be taken without constant medical supervision. About one-third of cancer drugs, oral and injectable, are now taken out-of-hospital; about two-thirds of chemotherapy drugs in development will no longer require intravenous infusion in a clinical setting.
Yet, in a large part of the country, patients who get their chemotherapy at home are actually punished financially.
This is not a new issue. Back in 1999, Health Canada commissioned a report on the problem of uninsured and underinsured services (including prescription drugs) that remains sadly current today.
Of late, there has been a renewed push to fund at-home treatments on the same footing as in-hospital ones. (This does not mean all drugs should be covered; only that they should be covered the same regardless of where they are administered.) Notably, the Cameron Institute has made a business case for equal access, and Cancer Care Ontario has highlighted the need for a more integrated system.
Lack of integration and innovation are, in fact, the root of the problem: If the health-care system is going to be patient-centred (the mantra du jour), then it needs to be seamless, and the rules need to be clear.
In provinces like Ontario, there are parallel systems of cancer care: one in hospitals and one in the community. That makes no sense. For patients, care is care, regardless of where it is delivered.
In the case of the Kristen McMillan, things worked out. As a nurse working in the public system, she has good private insurance (as paradoxical as that may seem), and the drug company also provided some drugs on a compassionate basis. In the end, all her drug costs were covered. Others can appeal to government support programs like the Trillium Drug Program, but that takes time and effort, which can be difficult when you have cancer.
But those without private drug insurance – one in three people in Atlantic Canada – and without the education to game the system are left to beg, borrow or do without care.
The blunt reality is that some Canadians do not get proper cancer treatment because they can't afford it.
About 5 per cent of Canadians have "catastrophic" drug costs – meaning more than 4 per cent of after-tax family income. And the insurance company Sun Life estimates that 130,000 Canadians have mortgaged their homes to cover health costs. These numbers put the lie to the notion that Canada has universal health care.
What we have currently is institutionalized inequality in access to care – the polar opposite of what medicare is supposed to ensure. That is a public-policy cancer that requires immediate treatment.