Fairness needed

At-home cancer treatments cost more in Atlantic Canada—and patients may find themselves footing the bill

A cancer diagnosis is traumatic. In Atlantic Canada, however, if treatment will involve medications to be taken at home, financial stress may add to the anxiety. While the cost of intravenous chemotherapy administered in a hospital setting is fully covered, oral cancer drugs taken at home are not, which can lead to problems for people who don’t have enough insurance to cover the full amount.

“It is a very fragmented system and it’s not working at all. A lot of patients are getting burned by out-of-pocket expenses or having to delay treatment until they can get the financial end of things figured out,” says Mary Lou Robertson, who worked as a medication resource specialist (also known as drug access navigator) with the Nova Scotia Health Authority Cancer Care program for more than 10 years, before leaving earlier this year to work as a private consultant on drug access issues. “I used to deal with 60 cases a month, on average. I’d see people—30-somethings with children—wracked with anxiety, wondering how they were going to be able to pay for their cancer treatment…. It got harder and harder to do my job.”

In Nova Scotia, those drug costs can be as high as $200,000 a year or more, depending on when a person receives their diagnosis and how long their course of treatment lasts.

“Most people don’t know that Nova Scotia lacks a universal funding program for oral cancer treatments, and that they are responsible for the cost,” says Robertson. “They are shocked to find out.”

Funding programs vary

When the Canada Health Act was passed in the mid-1980s it did not include prescription drugs, leaving each of the provinces to devise their own funding plans. In Western Canada and Quebec, at-home cancer medications are fully covered but in Atlantic Canada and Ontario they’re not.

“There are markedly different programs across the province. In Western Canada they decided to look at cancer drugs as treatment and not differentiate between in hospital versus at home…in Ontario and Atlantic Canada there has not been a will to look at this issue,” says Robertson.

Cancertainty—an Ontario-based coalition of more than 30 cancer patient groups, health charities, and caregiver organizations—is blunt in its assessment of the situation on their website: “Cancer patients in Ontario and the Atlantic provinces should not be systemically discriminated against simply because the cancer-fighting medication they need goes in their mouth (comes in a prescription pill bottle) instead of their arm (an intravenous line).”

Judy McPhee, executive director of pharmaceutical services with the NS department of health and wellness, acknowledges there are disparities from province to province, but she says the issue is something governments across the country are struggling with, even those in Western Canada who are currently paying the full cost. “The big question is how to deal with it to make treatment sustainable over time? No one has figured that out yet.”

Under-insured

According to a federal report, Nova Scotia has some of the lowest rates of private health coverage in the country. Even for people who have private health insurance, most only cover a portion of the cost or require the person to pay for the medication up front with reimbursement to follow. Those who don’t have private insurance, or have insufficient coverage for the cost of their drug therapy, can turn to a pharmacare program where how much assistance they will receive depends on their age, family income and family size.

While out-of-pocket expenses may look higher for people in Nova Scotia, McPhee says that Nova Scotia Pharmacare is open to all residents. In addition, McPhee says, most drug companies offer patient assistance programs to help make up the difference for people who are under-insured. “Patient navigators help with the paperwork and from what we can gather there are very few patients who are paying out-of-pocket.”

With the assistance of a drug access navigator, money for the medications can usually be cobbled together between pharmacare coverage and the pharmaceutical company’s patient assistance programs. However, from her years of experience working at the ground level, Robertson says the system doesn’t always work seamlessly and takes time to put in place.

In her former position as a drug access navigator, Robertson says the first thing she would do, if the person wasn’t already registered with the pharmacare program, was to start that paperwork, which requires divulging a lot of personal information, such as the person’s social insurance number, marital status and gross income level.

If everything flowed as smoothly as possible, it would take about three to 10 days for the pharmacare program to kick in, Robertson says. If someone did not have their taxes up to date, was recently separated or simply didn’t have some information available, then the case would have to be negotiated with Nova Scotia Pharmacare. Often delays could take up to three weeks. “That’s a lot of personal information to dig up and a potential time delay…all to get a drug that’s supposed to be routine and prescribed, and would be fully covered if receiving it intravenously in a hospital. That’s a huge inequity in the system,” she says.

While the drug companies do provide some patient support programs to help provide temporary drugs or help with costs, the programs are provided at the decision of the pharmaceutical company and vary greatly, Robertson says. “It’s not a good way to go. We shouldn’t have to rely on that as part of our solution.”

A growing problem

More and more cancer treatments are being administered in pill form and the number of oral cancer medications is only expected to grow. According to a report, called “Optimizing Access to Cancer Drugs for Canadians,” from a national forum held several years ago: “In most provinces, oral drugs currently account for about 50 per cent of cancer drug costs and represent the fastest growing segment....all stakeholders need to proactively plan how to pay for an increasing number of oral drugs.”

Can the situation be fixed?

There are no easy answers, Robertson says. On a national level, she had hoped to see more public debate on the need for a national pharmacare strategy to ensure equity for all Canadians.

On the provincial level, she says, a necessary first step would be for the province to do a full and transparent review of the current system of cancer drug funding.

“We keep being told that it isn’t affordable…show us the proof that it isn’t. [The government] just sees the amount of money they put in…we need a cost-benefit analysis that includes how much patients are being burned by out-of-pocket expenses.”

In the meantime, people would do well to take a look at their insurance situation, and read up on what the provincial pharmacare program will cover.

“It’s not something most of us think about until we’re in that situation,” says Robertson.