get healthing in your inbox with the morning checkup and weekender newsletter!

cancer

canada's lethal 'postal code lottery': why won't ontario and the atlantic provinces fund life-saving take-home cancer drugs?

the cancertainty coalition wants fair and equal access to cancer drugs regardless of where you live.

by robin roberts

published feb 25, 2022

9 minute read

join the conversation

9 minute read

join the conversation

why don't all provinces fund life-saving take-home cancer drugs?

"i’ve been one of the lucky ones; not many people live through this diagnosis with the time that i have," says rebecca grundy, who was diagnosed with an aggressive brain cancer just over three years ago. supplied

two out of five canadians will be diagnosed with cancer during their lifetime, and one out of four of us will die from it, according to the canadian cancer society. if you’ve drawn that lethal lottery, you may first feel shock, then fear, then anxiety. will i survive?, you’ll wonder. and if you live in ontario or atlantic canada, there’s a good chance that instead of spending your energy on survival and recovery, you’ll be wondering how to pay for your cancer medication — some of which can cost hundreds of thousands per year. it’s been called the “postal code lottery” for cancer drugs: if you live in quebec, a western province or northern territory, those live-saving treatments are funded by your province. if, however, you live in ontario or atlantic canada, don’t have adequate private insurance, and are under the age of 65, you’re on your own.

how is it possible that, in a rich country like canada, with its much-lauded universal health care, we have a system of provincial haves and have-nots?

rebecca grundy discovered this cold, hard reality when she was diagnosed with grade 4 glioblastoma, one of the most aggressive forms of brain cancer, just over three years ago.

the ontario native recalls that fateful day in september when, one minute she was visiting a friend in brampton, the next she was waking up on a stretcher in a hospital hallway. “i’d had three grand mal seizures, but didn’t remember any of it,” she says. “a ct scan showed a mass on the left frontal lobe of my brain about the size of my fist.”

the year before her diagnosis, she was — “coincidentally and ironically,” she says — working as a lobbyist for such patient advocacy groups as rethink breast cancer, where she was focused specifically on the issue of take-home cancer drugs for women under 65.

in addition, she was volunteering for the ontario progressive conservative party campaign in the run up to the 2018 general election.

“i was going at 110 per cent so i really had no time to decompress and maybe feel [any] symptoms” that might have signalled something was wrong, she says.

two months later, she underwent surgery to resect the tumour, which required a month of recovery, followed by radiation and a prescription for a take-home chemotherapy drug. and that’s when things got really challenging.

rebecca grundy after surgery for glioblastoma. “a ct scan showed a mass on the left frontal lobe of my brain about the size of my fist,” she says. supplied

in ontario and atlantic canada, intravenous drugs given in hospital are covered, take-home drugs in pill form are not if you’re under 65, and not on social assistance. since grundy was 28 at the time, she had to rely on her private insurance to cover temozolomide, the only drug approved by the province for treatment of glioblastoma — coverage that soon ran out given the medication’s hefty $7,ooo per month cost.

“unfortunately for me, i didn’t have a comprehensive plan,” says grundy. “i only had $5,000 of drug benefits per year up to 80 per cent of the drug, and because my drug cost around $7,000 a month, that got eaten up quite quickly, of course. you’d think that, when there’s only one form of treatment, it would automatically be covered, but that’s not the case.”

so she dove into a dizzying labyrinth of first, exhausting her private insurance, then her bank account, then attacking the layers of confusing paperwork and forms to apply to the ontario trillium drug program, which covers high-cost prescription drugs in relation to net household income. but even then, there are deductibles and co-pay requirements, which average $4,000 a year, not to mention delays of up to a month for approval.

“honestly, dealing with the diagnosis compared to the stress of finding a way to pay for my drugs and [juggling] my personal financials at a time when my brain was still healing . . . i had to spend more time and stressful nights and lack of sleep figuring out how to get my treatment than actually trying to make myself better,” she says. “and that’s not fair, especially for patients who are going through debilitating diseases like this. that’s not the ontario that people expect when they get a cancer diagnosis.”

how did this come to be and can it change?

in 2014, robert bick co-founded the cancertainty coalition, which represents more than 30 patient groups, charities and caregiver organizations, to attempt just that.

“it shouldn’t make any difference how a cancer treatment enters your body, whether it’s through an infusion needle at a clinic or in a pill that you pick up at the pharmacist, they should be funded the same,” says bick.

“it shouldn’t make any difference how a cancer treatment enters your body, whether it’s through an infusion needle at a clinic or in a pill that you pick up at the pharmacist,” says robert bick, co-founder of the cancertainty coalition. supplied

until about 2004 or 2005, he says, most pharmacological treatments for cancer were given intravenously. when new targeted therapies were developed — a lot of them in a pill or capsule — they didn’t fit into the funding paradigm that ontario had designed for cancer treatment.

“instead, they fell under the pharmacare program for pharmacy products,” bick says. “that’s how they split cancer treatments. it wasn’t intentional, that’s just how treatments were funded in ontario historically.”

he believes that when ontario decided on a pharmacare program, a stand-alone system that funded pharmaceuticals for people over 65 was built, under the premise that they were the most vulnerable. this was in addition to other social programs to assist low-income populations. but there remains a gap.

“drugs are getting more and more expensive, particularly cancer therapeutics,” says bick. “so if you happen to be in that population that’s under the age of 65, either without private insurance or very poor private insurance, you could be subject not just to significant expenditures. but extraordinary delays in accessing these treatments.”

mj decoteau, founder and executive director of rethink breast cancer and a member of the cancertainty coalition, experienced the same frustrations. having initially formed her organization to raise awareness among young people (young women have higher rates of metastatic breast cancer), rethink began providing breast health education, information on clinical trials, and fundraising efforts for research.

‘a crisis of loss’

“we started experiencing almost a crisis of loss with metastatic breast cancer [in] the community,” says decoteau. “so we got involved in metastatic issues and advocacy that would touch all ages.”

“finally, [the treatments] get approved for funding and you think, amazing!” says mj decoteau, founder and executive director of rethink cancer. “only to realize you live in ontario and you’re under 65.” supplied

she describes hearing about a new class of treatments called cdk4/6 inhibitors — a hormone-driven treatment for metastatic breast cancer that was shown to drastically improve survival.

“it was going to be a game-changing treatment and it came in a pill,” decoteau says. “it wasn’t in canada yet but we wanted to pave the way [once it was] to smooth access. unfortunately, it hasn’t been smooth, it’s been really challenging.”

getting the treatment approved for funding was not only a lengthy process, but there were seemingly endless negotiations between the manufacturer and the pan-canadian pharmaceutical alliance (pcpa) — an organization that was established to negotiate drug prices. and then the kicker: “finally, [the treatments] get approved for funding and you think, amazing!,” says decoteau. “only to realize you live in ontario and you’re under 65.”

the dreaded gap. but if those other provinces have figured this out, why not ontario?

“we are constantly meeting with the policy platform development people of all three major parties in ontario,” says bick. “over the years, we’ve met with opposition critics who have taken our message forward and advocated for us in the legislature. it’s been frustrating, because this is not a complicated issue to solve.”

decoteau said there were commitments from both the ndp and the pc party in the past, while the liberals were betting on the national pharmacare program to take care of it. now, with a june election fast approaching, cancertainty has redoubled its efforts — as of february 23, almost 5,000 people had signed a petition in support of equal access to take-home cancer drugs for ontario cancer patients.

‘cancer doesn’t care about government administration’

“we want those commitments from all parties,” says decoteau, who fears a wave of later-stage diagnoses because of the pandemic. “a study came out in the british medical journal that showed that even a four-week delay in cancer treatment increases your risk of death by about 10 per cent, and i believe that was in the context of the backlogs [due to] covid. but cancer doesn’t care about backlogs or government administration; it’s going to be the same outcome. so if not now, when?”

on february 11, bick submitted a budget proposal to peter bethlenfalvy, ontario minister of finance (mof), laying out a roadmap for equal access to take-home cancer drugs. in an emailed response to a request for comment on that proposal, spokesperson scott blodgett replied, “as you can likely appreciate, the ministry of finance receives hundreds of submissions during its pre-budget consultations. all submissions are looked at and carefully considered by policy staff here at mof. however, mof does not speculate as to what may or may not be in the budget, which will be tabled by the minister of finance in april.”

undaunted, bick remains optimistic. he points to the previous liberal government’s introduction of ohip+, which funds drugs for youth under 25. that narrowed the funding gap somewhat.

also, as a result of cancertainty’s advocacy, nova scotia introduced a take-home drug-funded program — but still, it isn’t without snags.

“they created another fund that people have to apply to, which the drug access navigators have to know about and direct patients to, and help them fill out paperwork,” says bick. “it’s an imperfect solution, but it certainly was progress.”

ultimately, he believes policy makers are listening and that the issue is under active review. “there is a huge opportunity, not only in the greater context of a $74 billion ontario health budget to spend a small amount to close the gap to solve this hardship people are having in accessing drugs,” says bick. “but there will also be some significant cost offsets which will help fund it because it’s such a highly inefficient system.”

the coalition’s research shows it would take just $30 million to close the gap. “to the general public that might sound like a lot, but it’s not that much in the grand scheme of a health care budget,” says decoteau. in fact, it amounts to one-tenth of one per cent of the 2020 ontario health budget. “it’s what the province is spending for nine days of pcr tests,” she says. “of course, we know that’s important and there are so many competing priorities. but just to give people a sense of the scale, that budget could make this issue go away for a whole year for cancer patients under 65.”

as for rebecca grundy, now 31, she eventually received assistance with her drug costs. she’s recovering well and back at work, albeit at far less than her before-cancer 110 per cent.

“i feel maybe i’m not as good at working as long hours doing multiple things, but at the same time i don’t want to do that,” she says. “so i have to give myself a break. i’ve been one of the lucky ones; not many people live through this diagnosis with the time that i have. i did everything that i could to make sure that i would beat this disease.”

now her province needs to do the rest.

to add your voice to advocating for fair and equal access to take-home cancer drugs, sign cancertainty’s petition at change.org.

don’t miss a thing: sign-up for healthing’s newsletter

thank you for your support. if you liked this story, please send it to a friend. every share counts.

robin roberts

canada's lethal 'postal code lottery': why won't ontario and the atlantic provinces fund life-saving take-home cancer drugs?

the cancertainty coalition wants fair and equal access to cancer drugs regardless of where you live.

'stem cell clinics are an area of risk': a conversation with peter zandstra, recently named to the order of canada

10 million people died of cancer in 2019: study

how did this come to be and can it change?

‘a crisis of loss’

‘cancer doesn’t care about government administration’

advertisement

canada's lethal 'postal code lottery': why won't ontario and the atlantic provinces fund life-saving take-home cancer drugs?

the cancertainty coalition wants fair and equal access to cancer drugs regardless of where you live.

related stories

'stem cell clinics are an area of risk': a conversation with peter zandstra, recently named to the order of canada

10 million people died of cancer in 2019: study

secondary losses: the impact of the pandemic on canadians with cancer

advertisement

advertisement

how did this come to be and can it change?

advertisement

advertisement

‘a crisis of loss’

advertisement

‘cancer doesn’t care about government administration’

advertisement

advertisement

share story