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This is an edition of Up for Debate, a newsletter by Conor Friedersdorf. On Wednesdays, he rounds up timely conversations and solicits reader responses to one thought-provoking question. Later, he publishes some thoughtful replies. Sign up for the newsletter here.
Last week I asked, “What’s been your experience with the health-care system and what lessons have you drawn?”
Dennis kicks us off with a near-death experience:
I was young and foolish. I drove a motorcycle into the side of a car in 1980. After four-plus operations, [losing] 80-plus pints of blood, the removal of my gall bladder and most of my liver, two and a half months in the hospital, lots of infections and complications, and several more months of care, I recovered. It was intense and amazing, and since my union-member parents’ insurance paid for it, possible. I turned 23 in the hospital. I have never lost a scar contest.
The American health-care system saved my life. But my experience shows that it is not the best system in North America. I moved to Canada at 40. Now I can see my doctor at will and at no cost. Thankfully I have not needed the level of care in Canada that I required 42 years ago, but I know several cancer survivors who have had serious needs, and all have been well served, no worries about the cost. It’s better, it’s fair, it’s less stressful, and overall, it’s cheaper.
Since I’m now over 65, I’d be covered in the U.S. under a roughly equivalent system, Medicare. There is no good reason for Americans to wait 65 years each to get publicly funded health care.
Jaleelah gives harsher reviews to Canada’s health-care system:
Last fall, I struggled with disordered eating. After moving cities, I ate less than one meal a day. I experienced overwhelming nausea at the thought of cooking breakfast or going to dinner with friends. As a result, it became hard to live my life. I barely had enough energy to get out of bed, let alone attend my classes or see my friends. I entered a feedback loop where my lack of energy for grocery shopping and cooking made me eat less. My mental state worsened. When I told my family, they urged me to see my doctor.
I tried scheduling an appointment. “Due to COVID,” they were only scheduling phone consults. I booked one anyway. The office instructed me to wait for the doctor to call me at the scheduled time. When the appointment came around, I waited for three hours but I received no call. I phoned the office. They told me they would remind the doctor to call. I waited the whole afternoon and evening with no luck. I finally got a call the next day.
I talked about my symptoms. I described the toll they were taking on my academic career and my mental health. When I asked about my options, the doctor ordered blood work and told me to come back if the issue was still around in a few months. I didn’t actually get examined for another six months. Meanwhile, I tried to schedule appointments multiple times only to be met with voicemail and instructed to try again later. I failed a class. I lost nearly 20 pounds. The people around me were bewildered by my decision not to see a doctor. I kept having to explain that it was the doctor who refused to see me.
Canada’s health-care system is severely understaffed. There is an extreme shortage of family doctors in almost every region. This is more the fault of the government (which, until recently, made no effort to attract foreign professionals) than my ghosting-prone doctor.
But there are other issues at play. The medical system has been incredibly slow to bounce back from pandemic-era limitations. Only when I finally got a hold of the doctor and gave them a number value on how much weight I’d lost was I able to schedule an in-person appointment—set for two months later. The reason was listed as “weight loss,” even though I’d spent far more time describing the debilitating effects on my energy and my life. I worked hard to gradually eat more and turned to my social support system for help. That was my only real option. Under a veil of ignorance, I’d still prefer Canada’s health-care system to America’s. Doctors are dismissive everywhere and long wait times are preferable to the possibility of dying due to lack of insurance.
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Rachel has spent her teens, her 20s, and now her early 30s “navigating and bumbling my way through the byzantine U.S. health-care system as a chronic-illness patient” since being diagnosed at 17 with chronic fatigue syndrome and fibromyalgia, “a complex chronic condition for which modern Western academic medicine gives little to no explanation.” She has advice:
I now see hordes of long COVID patients wading through the same long, confusing slog as they try to manage care for something that exceeds the limits of our current medical capacity. And I see it as a health coach, as I work with clients who are largely plagued by the typical Western cardio and metabolic diseases (diabetes, high blood pressure, cardiovascular disease, etc.) or lead reasonably normal, healthy-ish lives and yet fall prey to poor care, misdiagnoses, and a general lack of guidance around lifestyle medicine.
We have a weird paradox in the U.S. where many patients like their doctors but hate the overall health-care system. I’d imagine most doctors and providers feel the same way. And so while there is a lot of antagonism between chronic-illness patients and the medical establishment, I’m not sure this is a fair take as we have a system that has a number of really weird and perverse incentives. Every patient gets reduced to a set of CPT billing codes. And for conditions that are marked by nonspecific symptoms and nebulous origins, the problems get exacerbated. In the absence of biomarkers and clear disease etiology, the common denominator is the patient, who either gets outright blamed for her symptoms or patronizingly referred to psych (therapy is great, obviously, but not sufficient).
Like many patients, I have sought answers outside the norm. I’ve spent almost a decade and a half going everywhere from major medical centers to borderline witchcraft. My favorite doctors have been those who are honest and treat me with respect; they know their limits and value my experience as a patient. I had a PCP tell me in my initial appointment, “You’ve been through a lot. How can I support you in this?” I still tear up thinking of that moment, and how rare that kind of exchange is. I’ve since established a good care team with my primary-care doctor, some specialists, and a Chinese medicine doctor who is an absolute godsend. My out-of-pocket costs could probably fund a trophy wife’s Hermès obsession, but who really needs that many Birkins when you can spend your days having acupuncture needles jammed in your body?
Lessons learned are numerous:
1. Learn how to advocate for yourself. Know what your lab tests mean, understand your medications, keep track of your symptoms and health questions, and use this information to help you prepare for your doctor appointments. Ask for explanations and take notes.
2. Building on that, know your body and take reasonable measures to track your health. This doesn’t have to be an obsessive pursuit but merely enough to help you understand if things are helping or not. Unfortunately, data in this area is quite messy.
3. Health habits, like most habits, are heavily influenced by your surroundings. Cultivating a community of people with shared values around well-being is a worthwhile investment of your time and energy.
4. You have a surprising amount of agency with respect to your health. But you don’t have control over everything. Knowing the difference gives you freedom from beating yourself up over health outcomes that aren’t your fault.
5. Western medicine does a really great job at managing acute care. It’s less equipped to handle chronic conditions.
6. Chinese medicine is amazing and highly underrated. Unfortunately it’s heavily practitioner-dependent, which means there is lots of mediocrity happening.
7. Having a chronic illness is basically a full-time job with abysmal pay and few benefits. Learning to monetize your existential crisis (writing, coaching, mentoring, hell—even tweeting) will go a long way toward bringing a sense of purpose to an otherwise lonely existence.
Sharon agrees that patients must advocate for themselves to thrive in the American system:
I find you have to be very persistent; do your homework on many fronts. I was denied a drug with many qualifications stated for rationale. I dug up all the records to show that blood tests validated the chemistry they required—and they approved the drug. But I didn’t depend on my physician’s office to do this. It would have never gotten done. The few hospitalizations I’ve had went pretty well. I wasn’t strong enough physically or mentally to have an endoscopy until a few days after it was recommended. I got it, but later, so knowing your own strength and sticking to what you know of your own body is very important.
VH has impressions of health care in Australia:
Aside from long waiting lists in the public sector, care is good. In theory, regardless of whether you are private or public, the care should be the same, right? The only differences should be the “perks” of private care. Granted, long waiting lists are problematic, but if something is acute you are seen immediately, and the public, tertiary hospitals are where you’d want to be. They are the best equipped and most experienced.
Last month I learned I had a heart issue. I went private—it was expensive, about $2,500 for all the tests needed—so that I could find out quickly what was wrong. If I’d gone public, I probably wouldn’t have even had one test yet. This was the first time I really thought about the broadening inequity in Australia. I’m lucky, in that while it’s expensive, if I need to spend that much on health care, I can. What about others who can’t? Why are public systems not better funded? One issue is that people who can afford private care and have private health insurance choose to instead take up a public bed. In my opinion, if you can afford to go private and therefore let someone who can’t afford the same to have better access, you should. It’s about being a good person and doing the right thing. But when I mention that to people, they get really defensive about it.
I see it as one small way I can positively contribute to society. I just wish people would focus on the fact that we all deserve good health care, regardless of what we can afford, and make it a genuine not-for-profit industry. The drug companies in the U.S. sound horrific. Profiteering off people’s poor health is incomprehensible. The larger lesson I’ve drawn? You only deserve the best care if you can pay for it. Your life is only worth how much money you can spend. And that is NOT a lesson I want my daughter to learn. The life of someone who’s rich is not more important than that of someone who is poor.
Christopher describes the American health-care system as “confusing, costly, and unchanging.” He writes:
I’ve never been to a doctor, since I was a teenager, with whom I felt a connection and the impression of care. I feel like I’m at the deli counter being served as the next customer. I usually have no idea what medical care is going to cost (to me) until I’m sitting in the office. I don’t know of anything else I buy where that occurs. For significant procedures planned in advance, the providers won’t provide the cost to me in advance, even though they know what the price will be, because they’ve done it 500 times. Then, when it’s over, a confusing set of bills is sent, along with separate insurance [explanations of benefits], all seemingly for the singular purpose of inflating a price to arrive at a final number.
It’s broken; everyone knows it’s broken, and they know most of the solutions too, but health care is like a mountain of stone. Everyone I know says it sucks (except for those covered by Cadillac plans, and for them it’s only a matter of time before they become Medicare’s problem). Even people I know who criticized the Affordable Care Act still think the system is broken yet seem opposed to the obvious fixes. The incentives given to providers are all backwards and wrong. They should be incentivized to keep you healthy, not find expensive ways to try to fix a problem that could have been avoided.
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M. describes the unnerving way that health-care outlays can affect even the financial well-being of the relatively affluent––so much so that he plans on leaving the United States entirely:
I make a good living. I should have a larger retirement portfolio than I do, as my husband and I keep our living expenses within bounds, and I am a moderately successful self-employed professional. However, every few years, or sometimes a few years in a row, I find our household being bankrupted by the medical-industrial complex.
This year has been uniquely devastating. My husband is a 75-year-old bone-cancer survivor. Two years of radical chemotherapy left him with a suppressed immune system, which means for most of the pandemic we’ve been hiding from people the way Gremlins hide from sunlight.
A few years ago he had a two-year bout of C. diff, for which the drugs cost thousands. He finally beat it.
A long-term result of the C. diff left him with bacteria in his teeth and gums, which resulted in him needing $25,000 worth of dental work. He lost his upper teeth, now has upper dentures, and had serious gum work done on all his bottom teeth. Medicare covered a tiny bit of this. Dental work is not considered worthy of proper insurance in this country. And without the dental care he would have developed sepsis and died.
This cost was on top of his Medicare deduction from his Social Security and his $471-per-month drug-plan copay.
We’ve had some truly INCOMPETENT primary-care physicians over the years. We found a great doctor in 2006. He was an independent. Didn’t take insurance. Fee for service. Had studied at Loma Linda hospital. Great credentials. Finally a great primary-care physician. His wife, a Harvard-trained attorney who had retired from the law, ran his practice. Well, with the COVID pandemic, his wife burned out on medical administration, partly from all of the death they had to deal with. And she had a few COVID deaths in her own family. With his wife retiring from medical administration, he joined a boutique primary-care practice starting January 1, 2022. He’s no longer fee-for-service. He went concierge. He takes insurance now. But the annual “concierge fee” for 2022 was $3,000 per patient per year. It is going up to $4,000 per patient for 2023.
Then there are MY medical costs. My insurance is $1,189 per month for second-from-top-level insurance. It goes up 14 percent next year. I have arthritic knees from being a 10-to-15-mile-a-week runner from my late teens to early 30s. At 6 foot 1, I am a knee-replacement candidate. Prednisone made me put on weight, and I was already heavy, so I had to get off of it. Humira had all the effects of a sugar pill. I am immune to the benefit. So my arthritis doctor prescribed a biologic drug infusion.
Those treatments, of which I had three, had a copay of $1,468 each. And to boot, they did absolutely nothing! I was fired by my arthritis doctor when I told him that it was professionally irresponsible of him and his staff to prescribe such an expensive treatment without first notifying me of the cost. They felt that it wasn’t their job.
Next year I will have the knee replacement. I am living on pain meds and toradol (an injectable anti-inflammatory) and can’t wait until 65 when Medicare picks up the full tab. The out-of-pocket cap on my health insurance is $8,800. I’ll hit that. And I have a tooth that’s going and needs to be replaced with an implant. That’s another $4,000 next year.
There is a silver lining in all of this. My husband is a French citizen. He has family all over that country. Lovely people. In 2024 we are selling our home and moving to the southwest of France. As it turns out, with the world having gone virtual during the pandemic, I can service my clients from anywhere. And as it is, over a third of my practice is out of the region where I live. With the equity in our home, we can buy a lovely home in the Dordogne with cash left over. Our taxes will go up only slightly. Our medical costs will plummet by more than two-thirds, and that‘s if we opt for top-tier health care. I really do love this country. I just can’t afford the medical care here anymore.
Paul prefers his home country’s system to the American system:
Having lived in both the United States and the United Kingdom, I do not understand why Americans tolerate their expensive, divisive, and dangerously inefficient system. While in the U.S., my family had (at great expense to me and my employer) insurance through the University of Texas system, among the best available. We were subjected to repeated unnecessary testing, but the fragmented nature of the system meant that crucial indicators were missed. When we returned to the U.K., my wife was rapidly diagnosed through our taxpayer-funded system with angina and coronary artery constriction, which, if we had stayed in the U.S., would have killed her, and which was promptly and expertly treated by bypass surgery. And that’s top end, for an articulate, educated, health-conscious individual.
Errol emphasizes the role of individuals in their health outcomes:
I do agree that there needs to be coverage for everyone so that people don’t face crippling debts after accidents, but part of me feels as if this is a “banning assault weapons will stop mass shootings” argument. The leading causes of death in our country related to health are mostly preventable with exercise, diet, and [avoiding harmful] choices such as alcohol and smoking; cancer screenings and preventive treatments, such as yearly checkups, are not expensive in the system we have now. Individual responsibility for your own health needs to be priority No. 1. Let’s focus on getting Americans to be more active and more conscientious of what they put in their bodies and then see where we’re at. It’s great that we finally have a law that lowers the costs of life-saving prescription medicines, but we need to focus on getting Americans off of pill popping and injections. The best medicine is prevention, and we don’t focus on that in this country.
Also, it’s relatively easy for other countries such as Canada and the U.K. to implement cheaper forms of universal health care when they replicate the life-saving technologies and medicines made in America. I worry that if we adopt their methods then we’ll see a large dip in medicinal advancement due to a lack of incentive for private companies to push the envelope.
Ted writes from the West Coast, where he finds that health care is a mess:
We retired and moved to a relatively prosperous, well-educated locale—the central coast of California, where the insurance companies do not compensate local providers at a level that attracts physicians, dentists, optometrists, and others. Thus a one-year wait to see a dermatologist, a four-month wait to see my regular doc. For optometry we didn’t even try––we drive two and a half hours to our old providers. This was the same condition in the Central Valley until the largest employers rebelled and demanded more options for their employees. When the insurance companies raised their compensation to match Los Angeles’s, the clinician shortage went away.
My spouse has Federal retiree insurance; I am on her policy and on Medicare. The options, permutations, preferred-provider lists, and gotchas are endlessly staggering. My dear wife carefully researches all the different plans every year to see what might be most beneficial for us. Our medical needs are very ordinary—probably dull. Yet every year, the choices look more and more like a minefield than a straightforward set of choices.
MR urges a “laboratory of democracies” approach to reforming health care:
As with pretty much anything, society must make choices. But there is no consensus on what the big-picture future state should look like. When those on one side push a one-size-fits-all, state-owned-and-run, no profit-motive solution (which does not work anywhere in the world) and the other [endorses] zero government involvement with constraints that are aligned to social views, not medical solutions, you can’t move to a rational framework.
Drugs take time and money to develop and test, doctors take time and money to educate and train, and anything free will be valued as such and overused, but overcharging for preventive medicine increases long-run costs and results in poor outcomes. Both Europe and the U.S. could do with more flexibility and experimentation as to potential solutions. Although it is made fun of in today’s climate, the idea that the U.S. has 50 different experiments going on is a plus, not a flaw, in its system. We should try and use it [for health care].