inspiring canadians to live better.

healthing leaf

inspiring canadians to live better.

healthing leaf
get healthing in your inbox with the morning checkup and weekender newsletter!
home / diseases & conditions / cancer / blood cancer

machado: it's time to dismantle a system that makes survival too expensive

gleevec, the "miracle" drug for chronic myelogenous leukemia, helped kick off the trend of expensive precision medicine. are unaffordable medications leaving patients — and their doctors — to make treatment decisions based on cost?

by lisa machado
published sep 05, 2023
read time 6 minute read
join the conversation
read time 6 minute read
join the conversation
gleevec kickstarted the trend toward expensive precision medicine
we need to stop squeezing patients into treatment plans based on costs that are driven by corporate profits and complex pricing systems. getty
“do patients want doctors’ recommendations based on science or economics?” this was one of the questions that came out of an online chat group in response to an opinion piece recently published in the lancet, a top medical journal.
written by three doctors from the university of texas md anderson cancer centre, the three-page “viewpoint” piece proposed looking at the treatment decisions for a rare blood cancer — chronic myeloid leukemia (cml) — through the lens of financial impact, instead of science. or arguably, what’s best for the patient.
amid an exploration of more affordable generics and dosage reductions, the authors share their observations of the complicated and costly u.s. drug and insurance infrastructure, where drug prices “can be 200 to 300 per cent higher than in europe.” they suggest that, in cases where the cost of lifelong daily oral treatment (known as tyrosine kinase inhibitors, or tkis) reaches a certain threshold, clinicians should consider guiding patients towards what they called a “one-off” allogenic stem cell transplant (sct), a gruelling procedure aimed at achieving a cure, but which is also not always successful, has a long recovery period and comes with significant risks, including death.
powered by
the leukemia & lymphoma society of canada (llsc)
story continues below
certainly, it’s not the first time it’s been suggested that decisions on how to treat be based on dollars. these debates have been happening among healthcare regulators for decades. and though things get cloudy when you talk business models, tangible value and cost-effectiveness, let’s be clear: what these discussions are really about is putting a price on survival. how much should we pay to keep someone alive and well? how much is a life worth?
cml was fatal up until a little more than two decades ago. now, patients  have a solid stable of therapies that, for the most part, keep the cancer at bay — therapies that are not only abhorrently expensive in the u.s. as the md anderson docs point out, but also ridiculously pricey elsewhere in the world. if they don’t live up to their end of the bargain — and only if — the next and last option is an sct.
i was diagnosed eight years after treatment became available for this once-killer cancer. fifteen years later, i am still taking the very first drug approved for cml, imatinib — forever to be known as a “miracle drug.” but these types of miracles don’t come for free. back then, my life, the ability to be a mom, to work, to get out of bed every morning, cost about $4500 each month. cheap when compared to many other cancer medications, but enough to make a first-timer catch their breath trying to figure out where the heck that money was going to come from.
story continues below
yearly, it was going to be a tidy $54,000 for the rest of my days. thankfully, a clinical trial tied me over until my insurance company got around to throwing me a life-saving bone under the category of catastrophic coverage. assuming this medication gets me a normal life expectancy — promised by all the doctors — 84 years old, according to statistics canada, that’s a lifetime cost of almost $2.6 million dollars. (fun fact: u.s. government agencies have said that it’s reasonable to spend about $7 to $10 million to protect a person’s life and health.)
if i were a quant guy, i might say that was bananas. if i were that guy comparing the cost of keeping one person with cml alive, versus, say, the three million canadians taking cholesterol-reducing statins at an individual annual cost of roughly $1500, it’s not hard to understand why, using only this criteria, one might (as regulators are wont to do) consider readjusting the drug-spending ledger. except that patients deserve so much more than being slid into a spreadsheet of haves and have-nots, just based on what hurts the pocketbook most. instead, more than ever, we need decision-makers, and experts like the md anderson docs, to dig deeper and stop wasting time and energy finding ways to squeeze us into impossible financial models that are largely driven by corporate profits and complex pricing systems. instead, let’s do the right thing. make those financial models fit the needs — and lives — of patients, and finally, take aim at the real crux of this entire debate: why the heck are these treatments so expensive in the first place?
story continues below
in the meantime though, we are left with not-good-enough perspectives like the ones from the md anderson docs. they acknowledge expensive drug costs, and concede that it’s good clinical practice for doctors to help u.s. patients access the most affordable generic cml treatments. yay. but in the next breath, a little willy-nilly, if you ask me, they throw in the stem cell transplant (remember the serious risks, plus chance of death) card effortlessly as an alternate, viable and cheaper treatment option. they go as far as to call it an “affordable, curative later-line therapy” when “cost considerations are important to the patient and the regional health-care system.”

a stem cell transplant is onerous and difficult

have we forgotten though, that a stem cell transplant is not a treatment in the same way that daily medication is? it is an option, a procedure so onerous and so difficult that it’s usually only advised in cases where the disease is progressing despite trying various medications first. it’s a do-or-die contingency measure, literally. not to be confused with a cost-savings measure. it’s also worth pointing out that there’s no mention of an sct treatment decision as a budget booster anywhere in cml management guidelines.
story continues below
that the md anderson docs make no mention of the physical and emotional price the patient who undergoes a stem cell transplant will pay is one thing. but the numbers they reference are also misleading. they write that a transplant “might cost as little as $20,000 to $40,000 (e.g., in mexico or india), compared with $250,000 to $1.3 million per year for continuous treatment with third-generation tkis in the u.sa.”
certainly, there’s no reason to use numbers from countries like mexico and india. in the u.s., an sct and the associated expenses, like medications, can cost about $350,000 — still a lot less, on paper at least, than lifelong cml treatment. what’s glaringly missing from these calculations though, are the costs that don’t make it to the balance sheet: the expense of finding a donor, hospital admissions, ongoing medical care, medications, lost wages due to illness, among other things.
then there are the physical costs to the patient: the preparatory chemotherapy and possibly radiation are extremely hard on the body and come with their own risks. common side effects after a transplant include hair loss, mouth sores and vomiting (among others); long-term side effects can take the form of organ damage, blindness, or another cancer. there’s also the good chance of developing graft-versus-host disease, where the donor’s stem cells’ immune cells attack the skin, liver, gastrointestinal (gi) tract, mouth, or other organs.
story continues below

how much does the risk of death cost?

obviously, it’s hard to put a price on rashes and loss of smell, which are two more post-sct possibilities. and who knows how much the risk of death costs. still, once you take the time to consider all that a stem cell transplant entails and the impacts on the healthcare system as well as the patient, it’s a fair guess that, cumulatively, daily oral medication wins the value proposition hands-down on multiple levels.
clearly, there’s so much more to this expert-written opinion piece than a fuzzy measure of treatment value. there’s the critical underlying ask of clinicians to reconsider disease management decisions without acknowledging the whole patient experience. it’s also misleading for patients. do we want our doctors to make decisions based on dollars, or science? and if our treatment plan is being built with cost as a primary consideration, we should know that, right? 
perhaps the md anderson docs should consider a do-over. instead of putting forth a cost-savings perspective that potentially puts patients at risk, start a discussion about financial toxicity and the economic impact of cancer care. set out with a plan to dismantle a system that sometimes makes survival too expensive and where cost can determine quality of treatment, and instead, turn it into a framework that gets medication to everyone who needs it. 
story continues below
after all, today’s treatments offer life to so many. it’s time to recognize that this is, actually, priceless.
lisa machado is the executive producer of healthing.ca.
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.
lisa machado
lisa machado

lisa machado began her journalism career as a financial reporter with investor's digest and then rogers media. after a few years editing and writing for a financial magazine, she tried her hand at custom publishing and then left to launch a canadian women's magazine with a colleague. after being diagnosed with a rare blood cancer, lisa founded the canadian cml network and shifted her focus to healthcare advocacy and education.

read more about the author

comments

postmedia is committed to maintaining a lively but civil forum for discussion and encourage all readers to share their views on our articles. comments may take up to an hour for moderation before appearing on the site. we ask you to keep your comments relevant and respectful. we have enabled email notifications—you will now receive an email if you receive a reply to your comment, there is an update to a comment thread you follow or if a user you follow comments. visit our community guidelines for more information and details on how to adjust your email settings.

you may also like
doctor during consultation held in his hand and shows patient laboratory tube with blood. counseling of transfusion, blood and hematologic diseases and pathology like anemias, cell cancer, hemophilia
blood cancer in canada: stats, impact and resources 
portrait of handsome young man preparing for blood donation at med center with nurse helping
how anemia could signal a rare blood cancer
black businessman donating blood for people in need in bright hospital. female nurse with tablet computer coming in to check progress and well-being of donor. donation for heart surgery patients.
blood cancer
rinat avitzur posing for a photo with her family of three daughters and husband.
what it feels like: 'i will find ways to make cancer easier for people like myself’
frustrated woman sits in a hospital corridor, the room is light and clean
blood cancer treatment becomes first to benefit from canada's drug agency fast-track program
you may also like
doctor during consultation held in his hand and shows patient laboratory tube with blood. counseling of transfusion, blood and hematologic diseases and pathology like anemias, cell cancer, hemophilia
blood cancer in canada: stats, impact and resources 
portrait of handsome young man preparing for blood donation at med center with nurse helping
how anemia could signal a rare blood cancer
black businessman donating blood for people in need in bright hospital. female nurse with tablet computer coming in to check progress and well-being of donor. donation for heart surgery patients.
blood cancer
rinat avitzur posing for a photo with her family of three daughters and husband.
what it feels like: 'i will find ways to make cancer easier for people like myself’
you may also like
doctor during consultation held in his hand and shows patient laboratory tube with blood. counseling of transfusion, blood and hematologic diseases and pathology like anemias, cell cancer, hemophilia
blood cancer in canada: stats, impact and resources 
portrait of handsome young man preparing for blood donation at med center with nurse helping
how anemia could signal a rare blood cancer