running out of time: innovative multiple myeloma treatments aren't reaching enough patients
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steve, here with his wife and daugthers, says he's lucky to have had the opportunity to go stateside to get care. for a lot of other canadians, it's not that easy.
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when steve first joined the fire service in markham, ontario, he quickly became part of the team. working in that type of job establishes a kind of camaraderie amongst colleagues that is closer to family than job associates, and when he learned that firefighters had a three to five times higher likelihood of developing cancer, he jumped in to support his team in any way he could.
“i thought i’d do my part to help the people that were ahead of me and working beside me,” he said. “it was more of a trying to look out for my brothers or brothers in arms.”
he and his work family worked toward getting legislation passed that would help cover firefighters for cancers, since their job of saving lives put them at a higher risk than the general population.
that was 23 years ago.
flash forward to today, and steve now has a new person to advocate for: himself.
three years ago, he was diagnosed with multiple myeloma, a type of blood cancer that begins in the bone marrow. he started his treatment with various rounds, only to come up short at the end, realizing that everything that he’d tried would not provide him with the healing he needed.
“nothing (was) really working to the point where one of the oncologists that i’ve been working with kind of told me to get my affairs in order. that’s what we were talking about going into one of those homes where they take care of you for your last session type thing. so, things were looking pretty bleak for a bit, and that was not a comfortable place to be,” he said.
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steve, facing a terminal cancer diagnosis, wanted to do whatever he could to make sure his wife and kids weren’t going to lose their dad, and he spent as much time as possible “trying to keep things as normal as possible.”
steve’s wife, who was incredibly supportive throughout, began researching new therapies, looking for anything that could help after all other treatments had failed. that’s when she stumbled upon car-t cell therapy, a form of immunotherapy that uses genetically engineered cells from the patient to kill cancer cells, offering a more targeted approach.
finding a way through multiple myeloma
being involved in all of steve’s care, doing research and joining different groups herself helped steve’s wife learn about car-t cell therapy, and she brought it up to his doctor to see if it was an option.
all the studies and research showed promise, and with no options left, steve and his family were willing to continue finding a new way to heal.
unfortunately, though, steve didn’t qualify for the trials that were taking place in canada because of the unique presentation of his cancer. but there was a solution.
“over in the states, they had already approved car-t as an option for people and because i had coverage through insurance wsib, because myeloma is one of the cancers that’s recognized as being likely caused through fire service, pre-emptive legislation kind of paved the way for me to get treatment,” said steve.
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and although he and his wife had found a viable option, the decision to go ahead with it wasn’t an easy one.
“one of the things that did concern me about going stateside to get treatment was, if things go wrong, i am stateside and got to figure out how they’re going to get my body back home,” he said. “so, leaving the country to do it, being away from my family to do it, i wasn’t particularly keen on that side of things.”
he and his family weighed the options and went for it. he was told he fit into a category of people who typically get nine to 12 months, but 17 months later, he’s “still going strong.”
“it feels pretty awesome to be able to be still here, still making my bad jokes and still getting the rolled eyes and all that sort of stuff,” he said.
while things have worked out for steve, other canadians facing the same fate aren’t as lucky.
car-t cell therapy approval in canada
access to car-t cell therapy in canada is available, but only those with certain blood cancers and who meet specific criteria can access it. for those with multiple myeloma, approval has passed, but there have been ongoing negotiations by the pan-canadian pharmaceutical alliance surrounding coverage for specific types of drugs that recently stalled, leaving people in the country without the means to access it or the funds to pay for it in the lurch.
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while innovation breeds hope, “innovation is only as good as you can get access to it,” said martine elias, ceo of myeloma canada.
“if you can’t get access to it, then what’s innovation? nothing.”
the time it takes to get from creation to the patient’s body is far too long, often surpassing the time people with multiple myeloma have left to wait.
steve notes that one of his wife’s friends from a group she was involved in had gone through all the available treatments, with car-t cell therapy being their last-ditch effort.
“they ended up passing away before getting that opportunity,” said steve. “so for people to miss out on it just because of timing … the fact they’ve passed away in the window from when it was approved to when it was going to be made available due to funding, that’s a bit of a kick.”
steve said that’s the only person he’s known of it happening to, but that he “can’t imagine how many” others are going through that same situation, “watching their loved one taken away from them before they have more time that could have been afforded to them.”
drawn-out system between approval and access
martine notes that for approved drugs to make it to patients, they have to pass through five different agencies, each of which takes time to assess it in different ways. from safety and efficacy to value and pharma economics, the administrative process drags on while patients wait at the finish line, hoping that by the time it gets there, they’ll still be able to run the race.
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“there’s so many different layers of review that occur from the time the drug is ready for review for approval to the time it gets to patients, so if we could, in sort of terms of a solution, if it could shrink that into one big review, it would solve many problems i would hope,” she said.
the one specific drug, carvykti, that’s at the heart of the issue, is currently available and reimbursed in 15 other countries, but canada has yet to join that group because of the recent failure of negotiations. this drug is also highly innovative, showing in research to provide as many as 33 per cent of patients a survival rate of five years.
“these were very heavily treated patients, so you know, very sick,” said martine. “so when patients hear that, it’s like, ‘wow, this is amazing’ … still alive five years later when you were pretty much at the end of your rope in terms of what was available to you. and it’s a one-time deal, so you know, it’s quite impactful when patients hear these kinds of results, but then can’t get to it.”
the frustration advocates and patient organizations feel is just the tip of the iceberg compared to what patients go through when they can see the solution, but it’s just inches out of reach. it also leaves patients to gamble with their lives, which “isn’t right,” according to martine.
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“one patient, her doctor had said it was time for her to go to car-t cell therapy, and he was waiting for it to be available,” said martine, noting that day never came because the negotiations stopped. “she’s now looking at a clinical trial as an option … but the clinical trial is comparing standard of therapy versus car-t, so she’s taking 50 per cent of chance of getting on the car-t, which is really what she would need at this point based on where she’s at with her treatment.”
advocating for change to give people more time
myeloma canada has launched a letter-writing campaign that allows people to add their voices to the fight for faster, more accessible access to viable, effective drugs. its primary objective is to show the powers that be that these drugs and access to these drugs aren’t just important; it can mean the difference between life and death.
“behind every data point, there’s a patient, there’s a life in there,” said martine. “we need to take that into consideration, and we hope that they (the pan-canadian pharmaceutical alliance) will then sort of understand our issues and bring the parties back to the table so they can find a solution.”
she notes that with more people calling on the parties to be brought back to the table, those calls will fall on listening ears because “keeping our voice strong and making sure that our issue doesn’t get forgotten or doesn’t sort of fade away, because if it fades away, people will die.”
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steve, who feels lucky to have had great support from his family and coverage to go to the states through his firefighting career, continues to be a voice for others who may not be as blessed.
he notes that they need to shorten the process so that people don’t have to wait as long, because as it stands now, the time it takes from approval to access it is “a little bit extreme.”
“anything that they can do to prolong and extend people’s lives and help people to the point where they’d be able to get closure, that’s what would be advantageous,” he said.
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