Long wait for cancer drug approvals causing 'great anguish' among patients, doctors

In April 2017, Glenn Hussey went to The Ottawa Hospital for a regular checkup to monitor his smouldering multiple myeloma — a precursor to the rare blood plasma cancer multiple myeloma.

He'd been going every few months for more than a decade. But this time, he remembers his doctor saying: "Everything has changed."

Hussey began cancer treatment that September. There is currently no cure for multiple myeloma.

It gets very frustrating for patients when they see everything that's there, and they cannot yet get access to it.- Glen Hussey, multiple myeloma patient

Since beginning treatment, Hussey said he's faced barriers in accessing the drugs he needed — a problem he says is all too common among cancer patients in Canada, where long waits for drug approvals mean many die waiting for medication that's readily available in other developed nations.

Hussey's doctors tried the standard course of treatment, but it didn't work. He was put on another drug, which had Health Canada's approval but hadn't yet been approved for reimbursement under the Ontario Health Insurance Plan.

Hussey was given compassionate support to take the drug, and it worked — until a year later, when the province said he would need to stop taking it or it would refuse to cover a second drug, which he also needed. Hussey stopped taking the cancer drug.

Despite that experience, Hussey considers himself "one of the lucky ones" because some patients have had difficulty finding any treatment that works. Since joining Myeloma Canada's patient advisory council six years ago, he's known three people who have died waiting for a new drug to make its way through the approval process.

Often, it takes Health Canada longer than health authorities in other countries to approve drugs whose efficacy has been proven — typically a year — putting the drugs out of reach for patients who might benefit.

"It gets very frustrating for patients when they see everything that's there and they cannot yet get access to it," Hussey said.

Delays causing 'great anguish'

According to Dr. Sandy Sehdev, an oncologist at The Ottawa Hospital Cancer Centre, wait times for new cancer treatments can vary depending on the drug and the rarity of the cancer it's used to treats. 

Sehdev said it takes about six to 12 months for Health Canada to approve a drug for use, then six months to four years for provinces to negotiate a price with the manufacturer and decide whether they have the budget to cover it. 

"We've historically been very slow," Sehdev said.

Canada ranks last among G7 nations when it comes to access to new medications. For example, a treatment for cholangiocarcinoma — a rare form of cancer that forms in a patient's bile ducts — is considered a "global standard of care" in other countries, but isn't available in Canada, Sehdev said.

"We're all faced with a moral dilemma," he said. "[It] causes us great anguish when we have a drug we know will help them that we can't get for them."

He blames bureaucracy for the delay.

"Our processes to renew drugs are very rigorous, but the speed is the main problem."

Timelines vary between provinces

Stuart Edmonds, executive vice-president of mission, research and advocacy at the Canadian Cancer Society, said delays often occur as provinces and territories determine whether they have the budget to cover certain drugs. Timelines for approval vary from one jurisdiction to another, he said.

"The fact that there are differences I think is concerning," he said. "We actually want a situation where all Canadians, no matter where they live, get access to the same drugs."

Costs can also vary widely based on which drugs a patient needs. Even when the drugs are covered, the cost of travel to treatment centres can be too much for some patients in remote communities.

In a report released late last year, the Canadian Cancer Society placed the average cost to each patient at $33,000.

Sehdev said even with the slow approvals process, there's often a solution for patients.

"We will always tell them they should never be frightened they're not getting the best care," he said. "With our patchwork of clinical trials [and] compassionate programs, we usually do find a way."