by Carolyn Thomas ♥ @HeartSisters
Here in the Lotus Land that is Canada’s beautiful west coast, my total hospital bill after my heart attack was ZERO. The costs of my Emergency Department visits, all cardiac diagnostic tests/procedures/treatments, my hospital bed, physician/nursing care – plus all follow-up appointments with a cardiologist – are entirely funded by our provincial government health plan. Unlike so many of the American heart patients I’ve encountered since my own heart attack, I left the hospital without ever worrying how I was going to pay for my medical care.
Yet I’m highly aware that cardiac patients far less fortunate than I am often leave their hospitals not only worried about their hearts, but now worried about paying catastrophic bills. Medical researchers call this financial toxicity. .
A study called “Financial Burden, Distress, and Toxicity in Cardiovascular Disease” published in the American Heart Journal described this problem for heart patients as “a major source of financial burden and distress:” 1
“Overall, for many families living with a cardiac diagnosis, nearly 16% of the household income is spent on out‐of‐pocket healthcare expenditures.”
Another study on financial toxicity in the Journal of the American Heart Association reported more discouraging statistics on the scope of this problem in America.2
For example, one in eight – or 2.7 million – American households that include a family member living with atherosclerotic cardiovascular disease (coronary artery disease, our leading cause of death) reported extreme financial hardship due to that diagnosis. Over one million U.S. families reported catastrophic health expenditures (defined by the World Bank as out‐of‐pocket healthcare expenses exceeding 40% of their post-subsistence income). Overall, high insurance premiums and prescription medications were prominent costs, but even among those with good health insurance, shifting the costs of treatment expenses to patients, such as high deductibles, co-pays, and co-insurance, has become a disturbing and growing trend in the U.S.
The Kaiser Family Foundation also found that 41% of U.S. citizens are carrying medical debt, and 24% were considering personal bankruptcy to solve a medical debt crisis.
Researchers listed these predictable outcomes of financial toxicity:
- psychological distress
- not following important but unaffordable care instructions (like deciding to take half a pill every other day instead of one daily pill as prescribed)
- deferring plans for unaffordable medical treatments (not showing up for guideline-recommended follow-up visits)
- tradeoffs with basic non-medical household needs of the family (needing to choose between paying rent and paying for meds)
And here in Canada (also known to some of my American friends as “Commie-pinko land of socialized medicine”), we’re seeing more private for-profit clinics that provide medical services. For example, earlier this month the Ontario provincial government approved Bill 60, which allows these private for-profit treatment clinics. But unlike my government-funded medical care, some clinics offer “free” colonoscopy tests but require a $200 cash payment up front for a pre-test appointment with one of their dietitians in order to book the colonoscopy sooner than the free tests our publicly-funded healthcare system can arrange. The $200 is essentially a bribe that these for-profit clinics demand for an unnecessary appointment in order to avoid breaching the Canada Health Act (which forbids doctors from extra-billing patients additional fees for our medical treatment) – as if seeing a dietitian before your colonoscopy were a medical necessity.
Many of us see this trend as the slippery slope toward American-style for-profit health care – or what Mayo Clinic’s Dr. Victor Montori labels as industrialized health care. An opinion piece on his visionary work published by two Yale physicians in the British Medical Journal (BMJ) takes direct aim at what they call the U.S. healthcare industry’s “profit motive”: 3
“Along with its American stepchildren, ‘competition’ and ‘innovation’, this has resulted in a massive industry of physician practices, hospital groups, insurers, drug manufacturers, contractors and subcontractors (the list goes on) united by the goal of maximizing returns. Alleviating human suffering, ostensibly the purpose of any healthcare system, has taken a back seat.”
Both those who are alarmed by this slippery slope and those who are deliberate participants in industrializing health care for maximum profit (including government regulators, hospital executives, and physicians on the take from industry as so-called“key opinion leaders”) should be reading Montori’s important book, “Why We Revolt: A Patient Revolution for Careful and Kind Care”. The book may not unharden the culprits’ hearts, but it might slow down the greed.
Consider the latest findings of this Commonwealth Fund report which compared American healthcare to that available in other high-income countries worldwide:
- Per capita public spending on U.S. healthcare exceeds $10,000, more than two times higher than in Australia, France, Canada, New Zealand, and the U.K.
- The U.S. rate of avoidable death was two times higher than in Switzerland, France, Norway, and Australia. “This poor performance suggests the U.S. has worse access to primary care, prevention and chronic disease management compared to peer nations.”
- Despite the highest spending, Americans experience worse health outcomes than their international peers.
We know that for heart patients, some of the costs of getting sick can often be more than dollars spent directly on medical care, such as: financial loss from absenteeism, lower wages based on your cardiac disease status, lost productivity or rapidly depleted savings. Each can be as financially devastating to families as a frighteningly large bill.
And even here in Canada, the determination of which care costs will be covered and which won’t can seem uneven. For example, our B.C. provincial government will spend millions of dollars for expensive cardiac diagnostics, equipment, procedures, surgeries, hospital care and the massive facilities to provide that care – but then refuse to fund cardiac rehabilitation programs prescribed by cardiologists (in my case, that cost was about $400). Keep in mind that cardiac rehab is considered by all cardiology societies worldwide as a Class 1 guideline-based recommendation for optimal cardiac recuperation – meaning that high-quality published research endorses this life-saving recommendation.
With or without any extended health insurance coverage from work, my medical care here would be free. Before my heart attack, I was lucky to be working in the same hospital where I was ultimately admitted, which means I did have excellent extended health employee insurance benefits that covered many extras beyond hospital care (like massage, eyeglasses, dental care, physiotherapy, etc.) – but for some inexplicable reason did NOT cover my cardiac rehab expense, despite appeal applications to our Blue Cross employee insurance plan – that were denied by the insurance company.
Our healthcare system in Canada is not perfect – far from it! – but it’s far better than what I hear about every day from my American readers – unless of course you are independently wealthy.
Meanwhile, U.S. researchers have proposed these steps to reduce financial toxicity in cardiovascular care:2
- policymakers can expand health insurance coverage and curtail under-insurance
- healthcare systems can limit expenditure on low-benefit, high-cost treatments while developing services for high-risk individuals
- community-based initiatives can support patients with system navigation and financial coping
- physicians can engage in shared-decision-making for high-cost interventions
Just look at that list! Such changes would require a seismic shift in how American healthcare is run from the top down. For example, several sources – including a 2020 commentary written by cardiologists for the journal Circulation – stress the need for physicians to openly discuss treatment costs BEFORE costs are incurred.4 But these discussions may be rare, despite patients eager to talk about costs in advance, in the same way that you would never buy a boat or bicycle or baby crib before knowing the cost. As the cardiologists wrote in Circulation:
“The byzantine nature of the American health system means that most physicians do not exactly know what the specific costs facing the patient might be. As one patient described, clinicians ‘write the prescription, they send it down, you go pick it up, and that’s when the surprise comes!‘ ”
Why would physicians deliberately “surprise” their patients about costs?
And those grass roots community-based initiatives? They’re indeed important, but they also remind me of how patients are often the ones expected to do the heavy lifting in addressing systemic issues around gaps in their health care. Shouldn’t those who created the systemic mess be tasked with cleaning up their mess?
Originally identified as a serious issue among cancer patients, financial toxicity is in early stages of being addressed in a way that will actually help heart patients and their families.
There’s a staggeringly long way to go.
Image: Pixabay
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Samuel D. Slavin et al. “Financial burden, distress, and toxicity in cardiovascular disease”. American Heart Journal, Volume 238, 2021, p 75-84. August 2021
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Rohan Khera et al. “Financial Toxicity in Atherosclerotic Cardiovascular Disease in the United States: Current State and Future Directions” Journal of the American Heart Association. 2020.
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Akshay Pendyal, Joseph Ross, “Victor Montori’s ‘Why We Revolt’ is a clarion call to physicians and patients alike”, BMJ, February 2019.
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H. Warraich et al. “Financial Toxicity with Cardiovascular Disease Management”. Circulation: Cardiovascular Quality and Outcomes. December 2020.
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Q: How have you been impacted by the high cost of medical care in your family?
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NOTE FROM CAROLYN: I wrote much more about the many ways patients must learn to adapt to life after a cardiac diagnosis in my book A Woman’s Guide to Living with Heart Disease (Johns Hopkins University Press). You can ask for this book at your local library, your favourite bookshop (please support your independent booksellers) or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from Johns Hopkins University Press (and if you use their code HTWN, you can save 30% off the list price when you order).
See also:
– More from Dr. Victor Montori and his Mayo Clinic-based team at the KER Unit (Knowledge & Evaluation Research ) on the innovative concept of Minimally Disruptive Medicine.
Heart Sisters 
This is truly a great post with a lot of good points, Carolyn.
On February 21st my husband and I went to the ER at about 2am because he was having pains in his chest and abdomen. He had eaten greasy food earlier and it seemed to me that his symptoms were classic gallbladder; I’ve had those and my son has had his removed so I’m pretty familiar with this. I have no idea what was going on in the ER itself; they were apparently remodeling or something because we sat in the waiting room all night and he never even got into a room. They took him back for tests and returned him to the waiting room. After all night like this they still had no conclusive cause for his pain, although they did rule out cardiac.
A few weeks ago I got the bill for this. $4,888.05! I just about had a heart attack when I saw this. He had had a CT scan that they charged over $8,000 for. We’ve had many CT scans and I don’t remember them ever being that high. When I called to arrange a payment plan I even asked if this was a mistake, because one other time they did make a big mistake on an ER bill a few years ago that they did correct. No mistake this time.
His insurance had already adjusted the bill and paid, hence we owed less than half of the overall bill. But he had also had another scan done later that I thought must cost more than the first; it was actually a lot cheaper and that bill was added in on top of this and we agreed on a payment plan. The woman on the phone was truly wonderful in her helpfulness. It does help to speak up!
The good news was that he’s met his total out-of-pocket costs for the rest of the year and we only have to pay this bill. The frustration is that for all that he never even saw a room in the ER!
Our local hospital/healthcare center has built new office buildings, new outpatient care centers, and expanded into other communities. I find this disturbing. I think they should concentrate on improving patient care. I have trouble trusting the ER ever since they misdiagnosed my daughter’s blood clots in her leg and lungs as sciatica during the pandemic – when she couldn’t have anyone there to advocate for her, and they sent her home without even doing an examination. I was furious over this for months. She ended up spending the next few days in a different hospital where thankfully she was taken good care of.
Recently my cardiologist was concerned about my cholesterol, which was so whacked that my family nurse practitioner called me when she saw the results; she had never seen numbers like mine. (I recall that my good cholesterol level was 9.) I was prescribed a fish oil capsule that I hesitated to take, but my cardiologist assured me I wouldn’t burp up fish. My husband happened to pick this medication up before I could go in and talk to the pharmacist — $94 for fish oil! I took one and burped up gross fish all day. Forget that. $94 down the drain.
And I don’t know what my cholesterol will be like now, procrastinating on getting the follow-up labs done, I dread telling my doctor that I’m not taking that. This office is great but never any samples to try out. That would help so much.
The last time I went to the pharmacy I spent over $500 for medications. The amount of pills my husband and I both take is phenomenal — I take 12 oral medications a day plus an injectible (heart disease and diabetes) and his round is similar. I can’t even store them in my kitchen and the bottles are everywhere. I’m on Medicare now and I can’t say it’s helped much cost-wise, and my husband will be on Medicare soon too.
I will say that my endocrinologist told me that when considering what medication to prescribe to a patient, the first thing he takes into consideration is cost. He is great. But I still take a medication he prescribed that costs me about $142 a month. If it weren’t the one that finally dropped my A1C, I would stop taking it.
What can a patient do to fight back? Do we really need all this — the CT scan, the medications? The aggravation of sitting in the ER waiting room for no diagnosis?
Thank you for posting this and allowing us to vent a little — sure do appreciate you, Carolyn!
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Hello Meghan – those numbers are shocking! $4,800+ for an overnight spent sitting in the Emergency waiting room?!?! For many families, payment plan or not, that would be an impossible debt. No wonder some families believe they simply cannot go to the Emergency Department even during an emergency.
But for wealthy American families with stellar insurance coverage at concierge-level hospitals, money isn’t an issue.
Do Emergency physicians know that the CT scan they’re ordering costs $8,000? Do they know what the patient’s insurance will or will not cover when they order the test?
Your endocrinologist who considers drug costs first should be the norm. When patients can’t afford prescribed meds, they won’t take them – and those patients are labeled “non-compliant”.
I recall when the PCKS-9 inhibitor cholesterol drugs were first approved, the patient cost was about $14,000 per year. The College of Family Physicians of Canada stated that the drug “decreases new cardiovascular disease events for an additional 1 in 65 patients compared with placebo over about 2.5 years. Routine use of these agents is not currently cost-effective.” – which was hardly a ringing endorsement of this shiny new drug – and 65 people would have to be treated with this drug for 2.5 years to prevent just one of them from having a cardiac event.
Because U.S. healthcare is essentially run by a powerful insurance industry/lobby, improvements must start from the top down. The only improvement recommended by the researchers I quoted here that might be able to start with patients is “physicians can engage in shared-decision-making for high-cost interventions”. This happens only if patients are able to convince those physicians to “engage in shared-decision-making” – yet patients are often the people in the room who are sick and overwhelmed, thus the least appropriate ones to be asked to convince doctors that their quality of life is as important as the expensive options being ordered.
Take care, Meghan. I hope you and your husband are able to avoid expensive Emergency Department visits for a long time. . . ♥
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True and tragic and immoral. I’ve been advocating for universal health care for a long time, envious of Canadians.
For years I sang with the Raging Grannies, songs like “follow the money” and satires calling for universal health care. The Raging Grannies originated in British Columbia. Singing for peace and justice. Not my group in Madison, Wisconsin but represents.
We had a lot of fun while making statements.
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Hi Sara – I LOVE the Raging Grannies!
For any readers who aren’t yet familiar with the RGs: Grannies began here in my town (Victoria, British Columbia) in 1986 – and now they have chapters all over the world. A wonderful non-profit organization that describes its members like this:
“The delights of grannying include: dressing like innocent little old ladies so we can get close to our ‘target’, writing songs from old favourites that skewer modern wrongs, satirizing evil-doing in public and getting everyone singing about it, watching a wrong back down and turn tail and run, sharing a history with other women who know who they are and what they’re about…”
They may be the only force that can actually get for-profit healthcare straightened out at last as they watch “wrong back down and turn tail and run”!
Thanks Sara for this reminder!! ♥
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Hello Carolyn,
I cringe at what healthcare has become in America. As a caring health professional, I am embarrassed that my country is literally causing more suffering than it is healing.
When my physician tried every other medicine to get my cholesterol down he offered Repatha and said, ”But I know it’s expensive.” The same when he added Nexletol as a recommendation. He looked embarrassed that he even had to mention it.
I have a low enough income that Kaiser HMO offered me medical financial assistance and I am now able to get all my medications for free. My LDL is now down to 34!
America offers Medicare to those over 65 but it only pays 80% of the bills HOWEVER, Medicare demands that to be reimbursed, the doctor or hospital has to follow their pricing guidelines.
Example: My open heart surgery at 64 was billed at approximately $100,000. The same open heart surgery repeated at age 65, on Medicare, was billed at $30,000.
I applaud socialized medicine and in no way see it as “commie-pinko” . The guru I have studied with in India has a philosophy that health care along with food and shelter are basic human rights. He has opened multiple, high quality, hospitals in India that charge patients nothing. Six of them are hospitals specializing in cutting edge pediatric cardiac surgery. He just recently inaugurated the first entirely free Medical College in the world in order to bring students from rural areas of India to train and to return to rural areas as MDs.
Change is slow, drawing attention to the problems in America needs to be done. Our system of health care needs a complete overhaul.
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Hi Jill – yikes! That comparison between your two open heart surgeries is an eye-opener! One year apart, same surgery – SEVENTY THOUSAND DOLLARS difference!
It sounds like if you’re very wealthy or very NOT wealthy, you can get covered appropriately. What if your income had not been “low” enough however? It’s those working poor in the middle who are most squeezed.
Meanwhile, there are good people like your guru in India who rise up in stark contrast to the “profit motive” that drives so much of American health care.
Change is indeed slow, Jill.
Take care, keep well. . . ♥
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Thank you for sharing Financial Toxicity. Since my cardio hell nine years ago, I continue to pay $300/month for my Medicare supplemental health insurance.
I never ever want to see another $1.5 million hospital bill.
Roz
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Hello Roslyn – $1.5 MILLION hospital bill?!?!? That’s mind-boggling!
♥
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A staggeringly long way to go is right!
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Hello Abigail – we’re in early days, when healthcare professionals are just now noticing what patients have been going through for decades.
Take care. . . ♥
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