Of Poverty, Cancer, Bureaucracy, and Death

Em Carpenter

Em was one of those argumentative children who was sarcastically encouraged to become a lawyer, so she did. She is a proud life-long West Virginian, and, paradoxically, a liberal. In addition to writing about society, politics and culture, she enjoys cooking, podcasts, reading, and pretending to be a runner. She will correct your grammar. You can find her on Twitter.

Related Post Roulette

80 Responses

  1. fillyjonk says:

    This is so horrible and I am embarrassed (but not surprised) at my adopted state. I knew it was hard to be a poor person here (despite our having a great many) and I am sure that a lot of people who did not have an aggressive advocate (like you were for your sister) probably just give up. Hell, I have more resources and I would be tempted to give up if getting treatment were made so hard.

    I hope her hospice people are good, and that her eventual end is as peaceful as possible. It sucks mightily that sometimes the best thing you can pray for for a person is a quick and relatively painless death, and I have been in that situation with friends or family four times in the last four years and it never gets easier. All the good thoughts for you.Report

    • Em Carpenter in reply to fillyjonk says:

      Thank you. Yes one thing I can say about WV, despite being very red right now, it does at least recognize how poor its citizens are. We have relatively robust human services programs. Of course taking the expansion happened under Dem leadership and one of the first things the Red team did when they took over was implement restrictions (work requirements for ABAWDS, which admittedly are not strenuous). Either way, she would have been covered here.Report

  2. Jaybird says:

    An awful, awful story. This sucks.Report

  3. I’m so sorry to read this, Em. Wishing you all as easy a journey as is possible.Report

  4. Chip Daniels says:

    Everyone reading this blog is a participant in this story.

    We aren’t passive bystanders. This isn’t a story where we read and cluck our tongues and wonder how such a thing could happen.

    All of us, each and every person, is a citizen and tasked with the responsibility for the governance of our nation. We all participate in the biannual elections where decisions about health care are made. Even not voting is itself a conscious act.

    We talk and argue and debate about esoteric abstract ideas here, but this is where the rubber meets the road, where our words actually translate into actions that determine life and death for real actual people. People who die for lack of coverage, children put in camps, marijuana users put in prison.

    I said yesterday that the American people are given a test every two years. A test of our priorities and values, of our character. This story is the result of our choices and frankly we’ve failed.

    And yes, this must be noted:
    The Administration opens the door to Medicaid cuts

    We have a choice in front of us.Report

    • JoeSal in reply to Chip Daniels says:

      If i am tasked to participate, then i am tasked with teaching the outcomes of economic decisions. Teaching only works when there are people willing to learn. The history of people learning economics at OT is skewed and tedious.Report

      • Jaybird in reply to JoeSal says:

        Joe, don’t argue with Chip here. (I’m not saying “in general”, I’m saying “here”.)

        Tell Em that you read this and you don’t know what to say (or if you can come up with something to say, say that).Report

        • Chip Daniels in reply to Jaybird says:

          I wish someone would.

          Seriously, I wish we lived in a world where both parties competed strenuously to put forward ambitious plans to make sure no one died for lack of funds. Where think tanks spent their time trying to formulate plans for making the lives of all Americans better.

          1984 Chip, an enthusiastic Reagan supporter, would have made an argument here. Something about freeing the medical industry from onerous regulation and fostering a robust network of private charity and so on.

          Maybe it would have been nonsense, but it would have been a good faith effort to grapple with the issue. It would have accepted the premise that we are all connected and that the central role of governance, everything from protecting the borders to policing the streets is to provide for the general welfare of the citizens.

          I’m just not hearing that sort of thinking anymore. I’m hearing the shrug of indifference, a bitter sneer of nihilism and monotonous chant that nothing can be done or even attempted.Report

          • InMD in reply to Chip Daniels says:

            I don’t think market solutions need to go out the door. One of the biggest problems with our system is that we’ve drawn a bunch of increasingly random and arbitrary lines around risk sharing, shrinking markets we should be expanding, and having those lines enforced by separate sovereigns and interests. The people not being served (at least in any consistent way) is the citizenry.

            Stories like this are awful, and it shows that contra right wing talking points we do ration care, put life and death decisions in the hands of petty bureaucrats, and importantly there’s no evidence that eliminating public financing would ameliorate it (and plenty that the opposite would occur).

            The point that I think everyone should remember is that even the more comfortable of us are only a corporate downsize or Wall Street hiccup (hell or keystroke of an insurance administrator) away from an outcome like Em’s sister. Fixing that shouldn’t be looked at as charity, it should be seen as suring up the systems we all rely on, whether we acknowledge it or not.Report

            • LeeEsq in reply to InMD says:

              There might be room for market mechanisms but market advocates are so freaking certain about themselves and so overbearing with their market worship that they make horrible advocates for their own cause. They never once question why one would be skeptical about their market anarchy but treat the state as an alien force. There is a palpable racism and sexism in their beliefs since non-total market anarchists are treated with contempt and associated with people of color and women.Report

              • greginak in reply to LeeEsq says:

                It’s not like there aren’t a number of successful models for national health care we could look at. There are even ones with universal, accessible health care that use insurance companies. Highly regulated and with the gov as backstop but the good working examples are right there.Report

              • Em Carpenter in reply to greginak says:

                I’m intrigued by the Singapore model, personally. I don’t see it ever being palatable to Americans though.Report

        • JoeSal in reply to Jaybird says:

          You are right Jay, this is the wrong place. I really don’t like the way this place drags the personal into the political and the political into the personal, demands participation then one side has to sit on the bench.

          I’m out of here for another year.Report

          • Em Carpenter in reply to JoeSal says:

            Absolutely no one demanded participation. Report

            • DensityDuck in reply to Em Carpenter says:

              Everyone reading this blog is a participant in this story.

              We aren’t passive bystanders. This isn’t a story where we read and cluck our tongues and wonder how such a thing could happen.

              All of us, each and every person, is a citizen and tasked with the responsibility for the governance of our nation. We all participate in the biannual elections where decisions about health care are made. Even not voting is itself a conscious act.Report

      • Em Carpenter in reply to JoeSal says:

        You are not tasked to participate. You really aren’t.Report

  5. Slade the Leveller says:

    I’ve been following this on Twitter, and it’s just heartbreaking. I wish your sister, and you, all the best.

    My wife’s story is the polar opposite outcome of your sister’s, though the bureaucracy is still just as maddening. Here’s what happens when you do have health insurance:

    2002: Diagnosed with breast cancer. Have lumpectomy, chemo, and radiation. Go off the Pill and leave behind its overdose of hormones. Financial impact is burdensome, but bearable.

    2007: Breast cancer pops back up. Oopherectomhy. Same financial outcome.

    2011: Metastasized breast cancer in the brain. Radiation. Same financial outcome.

    2013: Another breast cancer recurrence. Double mastectomy. Same financial outcome.

    My wife has received the best care available, and her quality of life is about as good as can be expected, all thanks to at least one of us having a steady job with an employer who provided group health insurance.

    Postscript to all that is a diagnosis of glioblastoma about a year ago. More radiation, and now an electrical device she wears on her head that works to retard cancer cell division. Subsequent MRI’s post-radiation have shown near complete tumor shrinkage. The device is incredibly expensive ($21,000/mo.) but our insurer picks that up. Like most pharma companies, they have a financial aid dept. that will determine your max monthly payment in the event insurance doesn’t take care of it. Ours is an easily done pittance of that $21K.

    Wouldn’t it be great if everyone got that kind of treatment? I’m reminded of a Frontline documentary about health care costs worldwide. Everyone outside the U.S. was absolutely incredulous that medical bills could drive someone to bankruptcy.Report

    • Em Carpenter in reply to Slade the Leveller says:

      I’m so glad your wife is doing well! I think the worst part was my sister’s inability to do the follow ups, which may have caught this and bought her some time while the bureaucracy did its thing, and then maybe she would’ve received some treatment and possibly beat it back into submission. Report

    • Slade the Leveller in reply to Slade the Leveller says:

      Another story related to this is the saga (not really) of the Social Security disability application and aftermath. While my wife was in the hospital recovering from the brain biopsy which revealed the GBM diagnosis, she was told by her long time oncologist that she should apply for SSD and get her affairs in order.

      When we got home, I filled out the application online, which was a 3 hour odyssey. I had to run a copy of her medical records up to the local SSA office. GBM gets you to the top of the list for review, and the application was approved in early March 2019.

      There is a mandatory 5 full month waiting period for benefits to start, and due to the vagaries of the direct deposit system, the first payment arrived in mid-September. We don’t need the money, but it’s nice to get, and helps defray the doctor bills. What if we did though? Who would have paid our bills? I’m sure our mortgage holder would be less than forgiving.

      Why the wait? To ensure only those with long-term disabilities get paid. Which you would think would be taken care of by the people reviewing the application. The whole system just reeks of someone in Congress bleating about waste, fraud, and abuse, and it’s really kind of sickening.Report

    • greginak in reply to Slade the Leveller says:

      My wife has MS and some other chronic problems. I work for state gov so i have good insurance. Her monthly cost for meds is over 10k per month and she needs MRI’s and various other procedures. She has been a medical social worker. Of course that all means the process is still convoluted, purposely unclear and maddening. She has got the answer from the phone reps that they can’t formally authorize a procedure but she should go ahead with it and the doc will be told its a go. Then, of course, wait to see if it is officially authorized once the bills start to come. Oh goody, can’t see how that could be a problem.

      Then there is the denials of payment with an appeals procedure. Sure we know if we keep appealing they will almost certainly pay. Pay in a few months after a couple rounds of appeals with company knowing plenty of people will just give up.Report

    • I really, really do not want to quibble in this thread but as someone who HAS health insurance and yet still cannot seem to get a basic level of health care for reasons that have far more to do with bureaucracy than a lack of insurance coverage, it’s not as easy as you and Chip seem to be making it.

      Elaborating upon that is a subject for another thread, not this one, and I wish you and your wife, and Em’s family, all the very best.Report

      • Slade the Leveller in reply to Kristin Devine says:

        That stinks. As a point of anecdata, no insurance company has ever denied a claim for my wife (yet), and they are absolutely losing their shirts on the coverage.Report

      • DensityDuck in reply to Kristin Devine says:

        The thing about health insurance is that more things are covered than you might think, but they aren’t always covered under the ICD diagnosis code that the doctor wrote on the claim form. And neither doctors nor their staff are going to be able to tell you what diagnosis will cover the thing the insurance says isn’t covered. In fact, neither can the insurance agent, usually; you have to get them to tell you what documents describe what things are covered for which diagnoses, then do that search yourself to find which diagnosis both fits you and covers the thing, and then tell the doctor to re-submit the claim with that diagnosis.

        And yeah, that requires time and access to the information, as well as the confidence that you’re smart and capable enough to handle a document analysis like that, and not everyone has that.

        I mean, it seems to me that one of the big benefits of single-payer / medicare-for-all is just that there will only be one bureaucracy to deal with, instead of tens or dozens of them, and that means office staff can learn those codes and what the cover, instead of throwing up their hands and saying they can’t handle it.Report

        • One of the interesting things about Kaiser Permanente, who is both insurer and provider, is that their software knows. When the specialist ordered an MRI, he knew it was covered (although not the specific dollar amount). When my wife scheduled the MRI, the woman doing the scheduling could tell my wife what our cost would be based on the specific policy. She also offered to connect my wife to one of the finance people to arrange a payment schedule if that was necessary (it wasn’t).

          There are complaints you can make about Kaiser, but lack of information or billing surprises are not on that list.Report

          • Chip Daniels in reply to Michael Cain says:

            I can’t help but wonder how much of the total manpower expended on healthcare by doctors, nurses, technicians and soon is dedicated to actual healing, and how much of it is expended on the massive edifice of insurance billing and claims paperwork.

            And most of it is predicated on the fear that someone somewhere will be given a liver biopsy or spinal tap they are not entitled to.

            Like, if it were not for this zealous army of claims specialists, greedy people would flood doctors offices demanding a free appendectomy or shot of chemotherapy and extra dose of radiation.Report

          • DensityDuck in reply to Michael Cain says:

            Our experience has been tests that were Absolutely Definitely Most Certainly NOT COVERED Under Our Poli–(resubmit)–Covered One Hundred Percent, Thank You For Being An Insuricare Customer!Report

  6. greginak says:

    I’ve been following on twitter and i wish you and your family peace.Report

  7. Sterling Crews says:

    This is awful. I’m sorry you and your sister have to go through this. I hope the remaining time you have with her is as peaceful and painless as possible for her and your entire family.Report

  8. DensityDuck says:

    A great-aunt died of lingering complications from an injury sustained in a fall. I visited her once while she was in her hospice, and the part that struck hardest (and I still remember) is her sobbing from being in pain. And there wasn’t anything she or anyone could do about it, other than wait for her to die so she wasn’t in pain anymore. She’d taken all the drugs she was allowed (more of them would have probably killed her, and honestly that might not have been the worst thing) and there weren’t any others to try, so, all she could do was lie there and hurt.Report

    • Em Carpenter in reply to DensityDuck says:

      My sis has fractures in her back and from the cancer in her bones. She cannot get comfortable. She has a fentanyl patch and an RX for Oxy. She’s in a kind of agony that I can’t fathom. Intravenous morphine when she was inpatient seemed to help most. Maybe if she ever gets a bed at the hospice, they’ll give her that. Report

  9. Jay L Gischer says:

    So sorry. My wife went through cancer, but it was a very different story, since we had insurance. (She’s passed the 5-year remission mark). Reading this makes me cringe, since it so easily could have been me instead of you, Em.Report

  10. Mark says:

    My heartfelt sympathies; my mother died of breast cancer, and my family has been in similar circumstances.

    The USA spends substantially more on healthcare than other nations, but gets mediocre outcomes on almost all measures. The healthcare system is heavily regulated with a thousand rules, laws, regulations, licensing requirements, patents, and trademarks. It is totally the opposite of a market system. The current system is the outcome of all of these regulations. It is my conclusion that the laws, rules, etc, are intended to benefit the healthcare system and not the larger community of patients and soon to be patients.Report

  11. I’ve been following this on Twitter and expressing sympathy there but wanted to do so here as well. I can’t imagine how awful and frustrating this is for you (and for your mother). I’ve been there with my late sister. She broke her back many years ago and they implanted an electronic device to ease the pain. But it broke. And my dad had let her insurance lapse. And so it sat there in her back sending out random electrical jolts. And it took forever for Medicaid to decide she was eligible by which time other things had gone wrong.

    (Ironically, one thing that helped her was Obamacare, which my parents still said was awful even though it insured her for a period of time.)

    You’re incredibly strong, Em, and you’ll get you and your family through this. In the meantime, know you have the support of everyone at OT.Report

  12. Em Carpenter says:

    Let me say this.
    I welcome debate. I did not post this indictment of the American health care system without expecting a robust commentary in response.
    I don’t expect everyone to shower me with sympathy – a few of you actively dislike me, nothing new to me – or to suddenly demand Medicare for All because of one sad story.
    Please, take this opportunity to tell me your ideas, your plan, and how you think they would have helped my sister, how it would have been different for her if we did things your way.
    What I don’t want to hear is how my sister deserves her fate because of her own “choices” or that she is acceptable collateral damage.
    A commenter takes issue with how some folks here “drag the personal into the political and the political into the personal”… Guilty as charged. It’s almost as if political issues and decisions have significant impacts on the lives of actual people. How do you ever separate them?
    “The personal is political.”Report

    • Jaybird in reply to Em Carpenter says:

      Okay, fair enough.

      Sorry to white knight you.Report

      • Em Carpenter in reply to Jaybird says:

        No apologies necessary- I appreciate it more than you know! I just don’t want to be accused of using my sister’s story to stifle debate and win political points. I think the debate can be had without being rude and unfeeling, though. So I appreciate a good white knight.Report

      • Jaybird in reply to Jaybird says:

        (And I realize I should apologize to Joe and Duck as well. Sorry guys.)Report

    • DensityDuck in reply to Em Carpenter says:

      Did your sister live with anyone? Have any friends who she knew closely enough to talk with them about medical issues (or who might have said “hey, you don’t look so good, what’s up?”) Anyone to help her at all?

      And this isn’t cash-money help, this is “how do I fill out this form”, this is “who do I call at the doctor’s office”, this is “what documents do I need to get together”, this is “can you talk this over with me and be a second set of eyes on my plan”.

      It is, when you get down to it, acting as a partner.

      If your sister was an adult living alone, that’s not something that any sort of healthcare reform is going to fix. This is one of those Deaths Of Despair, of loneliness, of alienation, and it’s hidden by being categorized as a healthcare issue — which it is, but it’s not actually about the healthcare, it’s about managing all the demands placed on adults in modern society, and there are a lot of these, and it’s hard to get the energy and resources to do all that alone.

      “You’re saying my sister should have got a man, you’re saying she was a failure because she wasn’t married and she deserves to die for that” no, what I’m saying is that healthcare specifically is maybe not the problem here, maybe the issue is the way modern American society just kind of assumes you’re going to make friends and can’t really figure out what to do with people who aren’t naturally inclined or talented that way.

      I remember finding it very difficult to get services — cable install, plumbers, deliveries, even going to the post office — when I was single, because the entire service apparatus is set up with the idea that you’re married and your wife doesn’t work outside the house, and she can just take care of all that stuff during the day.

      I remember also a sad story of a sad women who lived in Palo Alto in her RV because her husband died and she couldn’t figure out how to pay the bills or the mortgage (he’d always handled the checks and the money) and she just couldn’t figure out how to find another place or even where to throw away her trash, so she just drove from parking lot to parking lot in her truck filled with garbage, and the story was supposed to say “this is why we need laws allowing homeless people to sleep in the parking lots”, but my thought was “if this lady had anyone else in her life she’d be quite happy and safe and we wouldn’t be reading about her in the newspaper, but nobody’s ever going to say that”.Report

      • Em Carpenter in reply to DensityDuck says:

        My sister skipped her annual cancer followups because they refused to schedule her without payment up front. That is the long and short of it, that’s how she could have found out what was going on earlier and maybe had a shot at remission again. Until December, her only symptoms were back pain, which she attributed to her job.
        She lives alone, but has a grown son and had a very active social life. (Nobody meeting her would have thought she was 50- you might see what I mean by the pic attached to the post.) She is a life of the party type, everyone is drawn to her. She was always out with friends, at their houses, had them over. She had a boyfriend. She was not lonely or alienated. She just didn’t look or feel sick.
        It was the bad “chest cold” she thought she had in December that sent her to the ER. They diagnosed bilateral pleural effusion and pneumonia, gave her meds and sent her home. When it didn’t resolve three weeks later, that’s when she went back in and they found the real diagnosis.
        This was not a “loneliness” problem, or a confused by forms problem.
        It was a no money to go to a doctor problem, plain and simple.
        Had she called me and said she needed money to go to her check-ups, i would have given it to her. Maybe her friends would have, if she’d told them. Either way, the bottom line is she didn’t get needed medical care because she had no way to pay for it.Report

      • fillyjonk in reply to DensityDuck says:

        This. I live alone and while I have more resources than many, there have been days I’ve been reduced to tears because negotiating this world alone can be HARD. Even simple stuff like getting an electrician in to fix a broken outlet.

        I don’t know why it has to be this way but it is.

        I check in on my mom a lot more now (via phone because I’m 700 miles away) now that she’s a widow. She’s doing OK but she had to take care of a lot of things in the last years of my dad’s life, and she has good friends and good neighbors to help her. But I still worry.

        And I worry about myself; I am not good at “letting people in” the way my mom is and I am probably more alone than is good for me, but I don’t know how to change that. I have friends but I worry that their own lives are sufficiently complex that they don’t need the burden of helping some rando, either.Report

  13. Chip Daniels says:

    What strikes me as bizarre is the view of health care as if it were a consumer good, where people just freely opt in or out of the marketplace.

    Everyone reading these words is going to (barring an accident or tragedy) grow old, get sick, and face medical bills beyond anyone’s ability to pay. The details will vary but the pattern is the same for everyone.
    You don’t get to choose the overall pattern. Eating right, staying fit, planning your finances carefully are all things that help, but only at the margins. The basic pattern is that almost all the medical expenses you will ever incur will happen in the last couple years of your life.

    Yet there is this persistent attempt to portray sickness as some freakish black swan event, outside our ability to predict or cope with.

    Financial planners have all sorts of metrics and frameworks for how landlords cope with expected maintenance and scheduled repairs, how businesses plan for eventual change and retirement of leaders, and how individuals plan for their inevitable aging.

    Yet the idea that we as a nation and a people should plan for the predictable effects of aging and sickness is still seen as, I don’t know, strange somehow.

    I don’t know why this is.Report

    • Aaron David in reply to Chip Daniels says:

      Yes, totally unlike Food. And Shelter. Which we treat, correctly, as consumer goods. Ask any grocer. Or architech. And we can see the crap that happens everytime there is a gov’t created shortage of either. Just look at all those city planners in SF or NY and see how the planned houseing has gone. Ghettos and homeless. Famines caused by central planners around the world every time that is tried. But, health care will be totes different. Why? Because you say it is different?

      I suffer from MS, and know the daily costs of healthcare. I long for the day when the evils that the shortages created by artifical controls are removed and we have the free market to increase supply and reduse cost.

      It has worked with every. single. other. field. But some people still insist that this time it will be different. Because fiat.Report

      • greginak in reply to Aaron David says:

        There are many examples of successful government directed universal health systems that provide high quality of coverage to all citizens. There are three basic styles: single payer ( like canada), gov directly owning/running health care ( ex NHS in Britain) and German/Swiss style with heavily regulated insurance companies with strong gov support. All have proven to work and none are market based. There is no uni HC system that is market based. In fact there is no market based coverage for people with pre existing conditions better known as shit that is really expensive/risky. If i’ve missed something let me know.Report

        • Aaron David in reply to greginak says:

          And they all work by rationing care. Ours works by both rationing (by price) and artificially restricting supply, both increasing scarcity and further raising prices. But, as you and I both know how important MRI’s are, check out the wait periods for UK (approx 12 month wait) and Canada (approx 18 month wait). Now, compare them to the US (took me about 1/2 hour. Yes I was billed, but I will take that anyday.) Free market cost vs. gov’t fiat.

          Health care by central planners is no different than rent control. I am not ruling out gov’t intervention in case of need, but how that is handled is of great importance. Gov’t is good at sending out checks, so lets keep it at that. Inject more competition (removing certificates of need and other limits on the amount of heath care facilities, remove AMA restrictions on numbers of Doctors, pump up numbers of nurse practioners), increase the numbers of Med schools, and so on. What I am driving at is remove the central planning that hinders competion and restricts numbers of practioners. At all levels. But this idiocy of placing healthcare on some sort of pedistal by thinking it is not a consumer good is one (among many) things driving up cost.

          And, yes there is a market for pre-existing conditions. It is called cash. Is it expensive? Well,so are a lot of things. Such as running over a pedestian with a car or train, an airplain crashing. But this is why we (or at least I) have umbrella insurance policies. So, yes we can take care of these things, but that takes forethought and planning.Report

          • InMD in reply to Aaron David says:

            One of the biggest things not on your list is admission of insurance at the state level. There is no reason we should have 50 markets for insurance, arbitrarily skewed towards whatever the local politics on the subject happen to be, instead of a single national one. This is a big reason people fall through the cracks.Report

            • Michael Siegel in reply to InMD says:

              I’ve come around on this issue to supporting universal healthcare although I oppose single payer. And the state markets is on of the things I oppose. It means that many states effectively have one insurance company. And for all the talk about how single payer will reduce costs, it has actually *increased* them because there is no competition and they can simply pass on costs to the employer (and, invisibly, to the employee).

              We’ve already established a national standard for insurance for the exchanges. No reason we couldn’t create a national market for insurance with set minimum benefits.Report

              • InMD in reply to Michael Siegel says:

                I think path dependency makes the idea of eliminating private insurance… we’ll say unserious. No one with any sense would go out intentionally to build the system we have the way it is but we aren’t able to restart from scratch and pulling out a giant, load bearing column or critical cable is dangerous under the best of circumstances.

                But yes, I think our path to getting to universal coverage, if there is one, involves turning the insurers into something more like utilities, with minimal required coverages and participation. Eventually maybe we end up somewhere on the Singapore-Germany spectrum.Report

              • Stillwater in reply to InMD says:

                The one insurmountable problem with healthcare reform in the US is the quality of the citizenry whose assent is required. The very best we can realistically hope for (IMO) is a two-tier system expandeding Medicaid and Medicare to include people with higher incomes and lower ages, respectively. But even *that* minimalist proposal would make Red Staters heads explode.Report

          • Chip Daniels in reply to Aaron David says:

            The argument for some sort of free market health care system suffers from two problems.
            One,it exists only in our imagination. There isn’t a working model anywhere in the world we can look at.
            By itself, that wouldn’t be a problem since everything was imaginary at one point.

            But the other problem is that the proponents never seem to be able to construct a credible suggestion of what it would look like. It always seems to be a flurry of “Create a free market, then ????? then affordable healthcare for everyone!”

            It’s sort of the “Come The Revolution” stuff from Marxists.

            For example, what sort of marketplace would make chemotherapy affordable for someone earning minimum wage? There isn’t any argument for this which isn’t preposterous.

            Or worse, there is the fallback of admitting that there will need to be socialized provision of healthcare to the indigent. But this gives away the entire game.
            Because even a middle class person will become indigent very quickly in the face of something like cancer.

            So what that means is the ‘free market” healthcare system will be essentially the status quo where there are two tiers, one private and one socialized for those who have exhausted all their financial resources.

            Except presumably, it would work better somehow.Report

            • Aaron David in reply to Chip Daniels says:

              Free Market – volentary exchange of goods and services. Seriously, we have know what that is for years. When I buy insureance, a financial product that has been around for centuries longer than the idea gov’t healthcare, I made sure that cancer was covered. That is priced into the final contract. Not unlike my house, which because it is of a vintage that uses non-current timbers, costs me more. I do this as I plan for things. Same with life insureance, which takes into account my MS and prices it accordingly. Again, this is nothing new. What is new(er) is the decree that one person can make all the heath decisions for an entire coutry. And as we have seen time and time again how disastorous this has been in every field it is tried.

              NHS hospitals ordered to cancel all routine operations in January as flu spike and bed shortages lead to A&E crisis

              That was just one month, and it was shutting down over the flu for christsakes. What was missed, who died because of this, who was in greater pain? And so on. Every time we use this scheme we become greater prisoners of politics. Why? Because each action is a line item in the gov’t budget, and with a change in admin there is a reordering of priorities.

              I do not want my disease to be a line item. I take Glatiramir Acetate three times a week. I fear that by becomeing a line item I am forced to take a lesser drug on a reduced schedule . And I am sure it is the same for chemo, as it was for my FIL and my MIL.

              But as long as we keep treating Healthcare as something that can be covered by the Magic Beans of socialism it will continue to become more and more expensive, while the Top. Men. will stand around and keep repeating the failures of the last time they tried central planning.Report

              • Oscar Gordon in reply to Aaron David says:

                A big part of the problem is that for anyone who get’s their insurance through work, those kinds of decisions are made for them. If your work plan doesn’t cover X, and offers no options for you to buy a rider for X, getting a separate policy for X is difficult.

                As screwed up and not-a-free-market our health care system is, our health insurance system is more so.Report

              • Stillwater in reply to Oscar Gordon says:

                I’d note that Aaron’s conception of a free-market healthcare system is the insurance-based model we currently have. You know, the one which, as you say, is worse than a fee-for-service model (I guess).Report

              • Aaron David in reply to Stillwater says:

                No, it isn’t.

                My concept is pay-for-play. If someone wanted to self-insure, that would be fine as it is another way to plan for the future. But the rank stupidity of requiring insurance (along with mandating certain things which in any logical insurance program would be optional) if people feel that they are fine without it, is a major fail of the Obama regime. One among many.

                But it is telling how much the ideas of free-market only seem to be misconstrued by advocates worse systems.Report

              • Oscar Gordon in reply to Stillwater says:

                As I’ve said before, the fact that we continue a tax and insurance regulatory scheme that creates strong incentives for employers to provide health insurance rather than financial compensation prevents any kind of customer facing market to really form.Report

            • LeeEsq in reply to Chip Daniels says:

              From what I gather, this is piecing together different things, a free market in health care is supposed to resemble like what exists for consumer products. The doctors and providers will openly list the prices for different treatments, procedures, and drugs and people will go around making inquiries in non-emergency situations.

              So lets say that you need some minor surgery. Nothing threatening but it needs to be done. You would then begin to make inquiries at different hospitals that provide this surgery and find out about payment, etc. You then select your provider and get what needs to be done.

              The free market healthcare advocates point to medical tourism as an example of this being done. Medical tourism is still a niche market though. I’m not sure if this can scale up millions or billions of people. Most people really don’t want to think that much about healthcare. They just want to go to the doctor and get treated rather than having to shop around.Report

              • greginak in reply to LeeEsq says:

                The medical tourism example is also terrible since few people can afford the time to travel for regular medical care. Traveling is stressful for many people especially if you have a medical problem, doesn’t account for the need for support ( can your spouse/family travel with you) or caring for kids and having time off at work. MT is a niche that supporters are bragging on w/o a clue about it’s scalabiity.Report

              • LeeEsq in reply to greginak says:

                Another reason why a free market in healthcare probably won’t work. There are also going to be differences in providers based on the area. Somebody living in a major metropolitan area will have lots of choices when they go shopping around. People who do not will be much more limited, especially if they don’t have the time and money to travel far.

                The idea that free market healthcare can work is what you call a faith based argument though. Nothing will dissuade them otherwise.Report

              • Chip Daniels in reply to LeeEsq says:

                The free market proposal is written from a narrow perspective, that of someone gainfully employed and financially secure who is facing a minor procedure.Report

              • North in reply to Chip Daniels says:

                What is especially ironic about this debate, which is a perennial favorite here around OT, is that the purported right wing/libertarian wing side of the argument is entirely disconnected from reality as a matter of politics. The classic tropes of this debate are familiar: the left wings make assorted arguments for government involvement in the provision of healthcare; the right wings cry out about dynamism, statism and free markets; then back and forth it goes.

                But 2016 makes this familiar form obsolete as a practical matter. The libertarian/traditional right wing internet debaters position on health care is shared by virtually no voting constituency in the country. Donald Trump got the nomination, and indeed the Presidency, partially by promising that he would have absolutely no truck with the libertarian/GOP orthodoxy on health care. He promised that he would not cut state provided healthcare benefits and while he did decry the Obama’s healthcare plan it was only coupled with a promise that he would provide a state provided healthcare plan that was more generous and would cost less.

                It isn’t clear what the new right wing/republican position on health care actually is. We could be charitable and say that they don’t really know what they support beyond opposing anything that comes from Democrats and Liberals (if Trump repealed the ACA and then passed the exact same bill again as Trumpcare his supporters would no doubt laud it as salvation). We could be uncharitable and say the right only cares about providing healthcare for elderly people. Ultimately I don’t think we on the left nor they on the right have any clue what the current right wing voting electorate actually thinks on the matter of healthcare.

                But when we’re doing our perennial dance about healthcare it probably bears noting that that we’re dancing with a corpse here. Maybe that corpse will reanimate- the republitarian/libertarian position is logically coherent and strongly supported by the wealthy few so they could potentially reanimate it with enough money when/if the Trump era shambles to a close but right now the market healthcare position isn’t pining for the fjords- it’s a political carcass.Report

              • LeeEsq in reply to North says:

                Trump seems to be intent on cutting Medicaid benefits if he gets elected. To balance the budget of course. The Rightist position is that their should be universal healthcare for the in-group but not the out-group. The elite rightist position is that we should cut government spending without much of a replacement plan.

                We keep going back to the familiar bugbears because a lot of the online right still talks about free markets and statism when it comes to discussing healthcare online. Since the Rightists don’t know what their actual position is and we don’t have many non-free market types to debate, we end up going to the old discussions even if they are un-connected to real world political activity.Report

              • North in reply to LeeEsq says:

                Oh I get it, absolutely. I just felt, I dunno, a strong urge to bring that point up because I haven’t seen it mentioned. The free market foot soldiers are battling for a few inches on the Somme front while Paris has fallen behind them.Report

              • LeeEsq in reply to North says:

                The free marketers are ideologues. Nothing will convince them that they are wrong.Report

              • LeeEsq in reply to Chip Daniels says:

                I mean yes. They really aren’t going to be able to explain what the free market has to offer to down on their luck parents with a kid with cancer.Report

              • Em Carpenter in reply to LeeEsq says:

                Of course, those situations exist. I don’t want to downplay it. But I want to point out that Medicaid exists for those children. The income limit in Oklahoma for a family of four is about $51,000. In WV it’s only about $34K. The general guideline is Medicaid coverage exists for eligible families earning less than 100 to 200% of the poverty level (varies by state).
                It is those like my sister, the “ABAWDS” nobody can seem to find it in their hearts to want to help. People like her are not eligible in many states, regardless of income, unless she is disabled, pregnant, or the mother of a minor child. It is the deserving vs. undeserving poor argument.
                My sister has always worked, whether it was at a makeup counter, a grocery store, or a bar. She worked full time or as close to full time as her employers would allow (to avoid providing her insurance). And then she got her massage therapy license, got jobs in her field – and was still in poverty.
                The free market has nothing for her. If you make 1200 a month, pay $550 rent, $400 for utilities, and plan on eating every day, there really isn’t any way left to participate in the free market.
                I am following this discussion with an open mind, but still no one has spelled out for me how their preferred system would have helped her.Report

          • Adam in reply to Aaron David says:

            Beg your pardon Aaron, where did you get data for UK wait times?

            A quick google of the NHS indicates +6 week wait times for a MRI was the case for 2.0% of patients in 2018 (table 4.1.3). Failed the standard of 1%, so they certainly aren’t meeting their own targets, but a ~12 month wait seems a bit of an urban legend.


  14. Burt Likko says:

    I’ve no thought here about what public policy decisions can be made to provide for better stories than this. Another day, maybe. There’s an election on, and maybe it’s enough to evaluate candidates’ proposals with this story in mind.

    Tonight, I read of pain and frustration and grief striking the family of a friend. This pains and frustrates and grieves me as well.

    May your sister’s remaining time be as free from pain as possible and may your family come together in harmony and love to get through your mourning. Let me know if you want some pinch hitting support for Wednesday Writs or anything else.Report

  15. jason says:

    Sorry–grieving and dealing with this must be a special kind of hell. My sister in law died in 2018–complications from chemo kept her in a med-induced coma for a few weeks and she recovered from that and then the cancer took her. Fortunately, they had insurance.

    I don’t have answers but I know that our system sucks.Report

  16. Rufus F. says:

    I moved to Canada about 16 years ago and people will often ask me “Do you ever think of returning to the states?” Truthfully? All the time. I love southern food and sunlight and the people and the culture. I really do. And my family is mostly there. But, I’ve put down roots here and, to be totally honest, at 45, I really don’t want to grow older worried that something like eye surgery or a cancer diagnosis could bankrupt me, or worse. This is exactly the sort of thing we all think about up here when we think about American health care.

    This story is heartbreaking and I’m terribly sorry that your family and sister are going through it.Report

  17. North says:

    I am so terribly sorry for what has befallen your sister Em. My heart aches for you and I hope that she finds surcease for her suffering soon.

    I live in the US for love of my American husband and out of affection for the country that I have half ancestry for but there simple is no comparing its healthcare system with that of my other country to the north. My Grandmother died of lung cancer and my father died of leukemia. Both of their deaths were drawn out, protracted and grueling (but not, thank the agnostic gods and goddesses, terribly bad as the perverse spectrum of cancer deaths go); but the financial cost of their treatment never arose as a particular issue. As they moved from doctors to hospitals and finally to eternity the Canadian healthcare system handled the money question unobtrusively.
    Americans have advantages over Canada in several areas but they are lapped by the Canadians several times on the question of provision of healthcare.Report

  18. Oscar Gordon says:

    This echoes my moms final journey with breast cancer. She found the lump in her breast right after I turned 18 and moved out, and because my father had just been told he was getting laid off, the doctor she saw about the lump couldn’t be bothered to help her find financial assistance for a biopsy, and just told her to keep an eye on it. Seven years later, she noticed it getting bigger and finally went in, and then sat on the information she got.

    When my parents finally told me, my wife and I got her into the U-Wisconsin Breast Center and they got her financial assistance with Badger Care, which was something she could have used 7 years previously, but was unaware of.

    We got her 6 more years, before she had to stop taking the drugs and the cancer came back with a vengeance (went straight to her brain, lungs, and bones).

    Had her or my dad just told me about it when she first found the lump…Report

  19. veronica d says:

    This is gut wrenching. I’m so sorry.Report

  20. Fish says:

    Enraging and horrifying and…I am so sorry, Em.Report

  21. Note: Em’s sister, the subject of this piece, died this evening, Feb 4th. Report