“I had no idea.”

“How can that be?”

“Just doesn’t make any sense.”

“But even if it keeps you alive?”

These are just some of the responses I heard from neighbours and acquaintances a few years ago after a local paper quoted me in a story on cancer drug funding. In the article, I discussed the high cost of cancer medications and how there was no funding in Ontario for oral take-home drugs, such as my $4,500-per-month leukemia medication.

It was fascinating how many people assumed that if they were to develop cancer, they’d be able to get the medicine they needed. Many painted a rosy picture of strolling into their local pharmacy and leaving with their life-saving drug in hand, having paid nothing or just a small token fee courtesy of their private plan.

Read: A look at workplace support for employees with cancer

The truth is, while some private health plans cover certain cancer medications, we’re seeing this less and less, as payers buckle under the huge price tags of these drugs that become even more burdensome in light of the increasing numbers of employees who need them.

Access was the overwhelming theme of the Benefits Canada‘s 2017 Employers Cancer Care Summit in Toronto in February. It was a particularly intriguing debate because no one was debating. Where a decade ago, you may have heard some squawking about the need to rein in drug coverage that was affecting a company’s bottom line, the audience’s energy was more about acceptance and searching for solutions.

And while it was refreshing as a patient advocate to see plan sponsors taking an honest shot at figuring out drug-funding issues and improving outcomes for patients, it highlighted the fact that while these discussions may have moved forward in recent years, member perceptions of these funding issues mostly haven’t

There’s still some degree of expectation that plans will pay for life-saving therapies, a misunderstanding that takes the crisis of a cancer diagnosis and kicks it up an almost unmanageable notch.

Read: Canada saw more than 137,000 new cancer diagnoses in 2014: Stats Can

Thankfully, there are systems in place to help take the edge off. Many of Canada’s cancer centres have oncology drug access navigators who work closely with patients, families and patient organizations to do the best they can to ensure everyone gets the drugs they need to live. That often means calls to employer plans to determine coverage, helping patients navigate government programs and even negotiating with drug manufacturers to secure some kind of assistance.

Despite those support measures, the fact still remains that until someone becomes a patient, health coverage is simply background noise in a busy life or, possibly, an employment perk. And who really cares how much it all costs or which drugs a plan covers? Until someone is a patient facing yearly drug expenses that exceed a down payment on a costly home, cost is all people can think about.

Read: Getting plan members the right drugs at the right time

The bottom line is something has to give. And as a presenter at the cancer event, Dr. Jeffrey Rothenstein, put it: “We all need to work together.” This means we all play a role in making good health care sustainable, from plan sponsors and government programs, to hospitals and doctors, right down to plan members.

Perhaps a good starting point is the way plan sponsors communicate with members. It’s about more than just telling members what their plan does and doesn’t give them. Maybe it’s going one step further and helping them understand what makes their plan great, teaching them how to prepare for a potential health event and making them realize the value of their benefits. One of the most effective ways to do that is to use people — through real-life stories of members for whom their health plan was key to getting through an unexpected health crisis — because we know storytelling reaches people, as it did with my situation and it did time and time again during the Employers Cancer Care Summit.

Dr. Paul Wheatley-Price, an oncologist at the Ottawa Hospital Cancer Centre, was third in a line of speakers who recounted stories of people facing aggressive cancers with limited life expectancy. Wheatley-Price, who’s also the president of Lung Cancer Canada, had just finished talking about a 25-year-old lung cancer patient who was seeing some success with a promising new therapy, when someone asked if she would live. His answer?

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“I don’t think her young son will remember her.”

A quiet understanding seemed to settle on the room. We’ll all be patients at some point. And all of us — employers, consultants, pharmaceutical representatives, consultants — want to have the best chance at being remembered.

But how will we get there? Maybe all we need is a good story.

Lisa Machado is a benefits plan communications consultant at PatientSpeak and the founder of the Canadian CML Network.

Copyright © 2018 Transcontinental Media G.P. Originally published on benefitscanada.com

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