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  • My husband was diagnosed with ulcerative colitis in his early 40s. There was a medication that kept his symptoms more or less in control.

    Then he lost his job. The meds ran out and it turns out they cost thousands of dollars without his work insurance plan. This was just before Obamacare, and there was no way we could afford unsubsidized insurance for him on my salary.

    His colitis got exponentially worse, and was treated only spotadically when I could scrape together a few hundred dollars for the doctor visit, where he might be able to get enough free samples of the med or a round of steroids to reduce the gut inflammation.

    One night as we were lying in bed winding down to sleep, I heard him drop his magazine on the floor and start what I now know was agonal breathing. I called 911 and did my best with CPR, but his heart had stopped and in all likelihood he was dead before the paramedics arrived. He was 53 years old.

    I found out from his death certificate that he had severe ischemic heart disease. It was undiagnosed because he hadn't had regular medical care for years because of the vicious circle of unmedicated symptoms/inability to work/no insurance.

    That's my horror story. There's also my 4+year quest to be diagnosed with MS, being told by multiple doctors that if I lost weight I wouldn't be so fatigued I could barely move, or have vertigo, or fall down for no reason, or whatever symptom I had at the time. But hey, at least that story eventually ended with diagnosis and treatment... as long as I have my job and insurance, anyway.

  • I used to live in China, where socialized medicine was in theory available for everyone, but in practice most everyone who had a decent job had private insurance from their employer not unlike in the US, which was my situation. It was...fine, but I was a healthy young adult and didn't have much going on medically. I've heard some horror stories from others about the degree of care they received, and had one experience where my doctor simply attributed my migraines to my "unhealthy American lifestyle", but I never had to worry about coverage.

    When I moved back home to Massachusetts a few years later, I didn't have a job lined up right away, but I did gain immediate coverage through MassHealth (the system the Affordable Care Act was based upon) and it was very cheap. I didn't have to pay for coverage, but did have a couple copays here and there which weren't anything crazy.

    I started up one job, was laid off after just a couple months when the pandemic happened, and MassHealth was still there to give me some peace of mind. It's not a perfect system, but it beats running the risk of suffering a health episode that leaves you financially destitute for years and years. I don't know how well I would have managed elsewhere.

    I eventually landed a more stable-long term career and get employer-provided insurance through Tufts. And it's okay, but I recently had to fight a months-long prolonged battle to get a prior authorization approved for a med I had been taking for years that they just decided out of the blue I didn't need to take anymore. And it took a lot of back and forth from my doctor to really stress that I needed to stay on this med before they eventually caved and gave me a 1-year approval, but now I'm worried I'll have to go through this whole song and dance again when that time elapses in a few more months.

    I think it's just a bit ridiculous that the insurance company can simply decide they know my health situation better than myself or my doctor who I've been seeing for years now, and out of the blue make life-changing decisions without even having spoken to me or my doctor first.

  • I'm intersex and have both male and female anatomy. US healthcare "insurance" isn't coded for people like me. It assumes a sex binary when the facts of reality show otherwise.

    Back at my old job, I had full premium health insurance. However, they kept denying each and every claim, denying literally everything. They unofficially recognized my intersex condition and used it against me.

    Whenever I filed a claim as female, they'd deny it and claim I was male and thus the claim was incorrectly filled out. When I filed as male, they'd pull the exact same stunt now claiming I'm female and thus the claim was incorrectly filled out. Whatever the claim, large or small, it was always the wrong sex on the paperwork.

    It was a "heads I win, tails you lose" situation. I have a better job with the government and with a different insurance company, but they too are starting to pull the same stunt. I hate this country for allowing such corruption to thrive.

  • I've got cluster headache. Only medication that had any noticeable effect was Prednisone. Not even that expensive of a drug, but more than I could afford out of pocket. Insurance wouldn't cover it because they considered an oxygen mask to be a more appropriate treatment, even though I'd been using them for months with no improvement, and O2 only works for a small percent of people with cluster headache, anyway.

    Couldn't afford to get the meds. Not legally, at least. A coworker was taking Prednisone for a different condition, and managed to convince his doctor to double his dosage, and I paid him for the difference, until he stopped taking it altogether. Ended up having attacks again, and missed enough work because of them to get fired. Between the pain and losing my job, that was easily one of the lowest points in my life.

    I wouldn't wish our healthcare system on my worst enemies.

  • I could not walk for more than 5 minutes without excruciating pain. I finally asked to be taken to the hospital after a back spasm that had me bash my face after a fall.

    Went to the hospital. Was diagnosed with "mild scoliosis" and "anxiety" and sent home with stronger than average Tylenol. Was bedridden for nearly 2 months. Lost my job. Got other appointments for GP. Looked and said I needed a specialist. I could not afford a specialist, as I was now out of money. They shrugged and wished me luck.

    I was forced to stay like this for nearly 2 full years.

    When I was on the verge of killing myself, someone offered to pay for a chiropractor. I didn't care. I had nothing to lose.

    Anyhow, long story short, guy found that my spine had been forcefully lodged into my pelvis and stuck there. Dude had me healed in week.

    This is NOT an endorsement for chiropractors— this is a testament to the failure of the healthcare system. I could not see anyone, so my desperation led me there.

    I still have back issues. But I can walk again and be touched without pain.

  • I transferred to a new college and learned the first week of class that they required a few vaccinations I was missing. No problem, the on campus health center can provide them. I confirm with them that they accept my insurance, so I go get the shots.

    A few months later, I get a bill in the mail for over $3000. Apparently the health center wasn't in-network, so I have no idea what they meant by "we accept your insurance." I layer learned that if I had driven 10 minutes west across the state border, there was an in-network office where those two vaccinations would've been completely covered.

    I still haven't paid a penny towards that bill, fuck them. I get daily phone calls from an unknown number, it's probably collections, but I don't know for sure since I never answer it. This was years ago and my credit score never took a hit. I'd rather die than reward these parasites with my money.

    I'm pretty sure I have a tumor growing on my hip too. I'd get it checked, but between student loans, insane cost of living, and rising costs of literally everything else, I can't afford to right now. I'm a childless engineer with "great" health insurance and a roommate, so I'm relatively well off. I have no idea why shit hasn't boiled over yet. Makes me want to depose some CEOs too.

    • Get that tumor checked, now. If it's something malignant, chances are "can't afford" is the least of your worries.

      What's the worst thing that can happen to the bill? Another collections call you never answer? Beats a premature death.

  • I have Premera (which is apparently considered pretty good for an insurance company if there is such a thing). I herniated a disc really bad in my back nearly two years ago. When I injured it I knew right away that it was a herniated disc, again but way worse than last time. Luckily, the doctors in my system are way too familiar with all the tricks for insurance to avoid coverage and I wouldn’t have been able to navigate the system by myself, a few examples.

    1. I initially reached directly out to my spinal doc instead of primary care first, they told me to go through primary care first or insurance will not pay, but tell me after it’s too late because it’ll take months for them to determine final coverage. This saved me about $60k.
    2. Don’t get the MRI at the hospital that is in my network, for some reason they will find a reason to not pay because they use a newer MRI machine or something, instead go to this weird third party company.
    3. have the people in the docs office help you fill out the paperwork and always always always say that “this prevents me from doing my job or affects job performance” even if it doesn’t . One thing the insurance company likes is a paying customer, if you get fired or have to quit, you are no longer a paying customer.
    4. don’t do the bare minimum for coverage, if you are only required to do 12 weeks of PT for surgery approval, do 16 instead. Insurance will always make a way for 12 to actually only be 10 and void any support for your surgery. If you only need one doctors visit, do 3.
    5. you will get sent several forms via mail. Fill every single one out no matter how ridiculous. I had one asking me about pregnancy health, and I’m a guy, docs office said if I didn’t fill it out that the insurance would deny my claim. Also, take a picture each time and make sure you answer the same way every time. Don’t say in one form “I injured myself in my back yard” then in the next form say “I injured myself at home”. They will find a way to say you are talking about two separate injuries and that voids the claims.

    Probably a bunch of other stuff I can’t think of

  • I work in healthcare, and the response from the workers in my hospital to the UHC CEO assassination has been... pretty much the same as the response here on Lemmy!

    Couple morale-high-horse folks pearl clutching about no one deserves to die or some shit; but 99% of us are on team Luigi.

    We fucking hate parts of this industry, with a strong emphasis on insurance bullshit.

    My two cents from the inside.

  • Worked in insurance for a few months and saw someone with an $8000 deductible.

    Was denied life-changing, medically necessary weight loss surgery because my company has less than 50 people employed.

    I had to live with a failed gallbladder for a month and a half while the insurance decided if they were gonna pay for surgery. I lost 20lbs in that time because I couldn't keep anything in my body. I almost died.

    One health care facility near me doesn't accept patients who work at or have previously worked at their competition.

    Had my ankle reconstructed last year and the surgery alone billed for $16,000. A piece of foam for my walking boot billed for $150.

    My headache medicine would cost me around $1000/month if I didn't have insurance. With insurance it's $40/month. My pharmacist helped me sign up for a discount card through the manufacturer so now it's only $5/month somehow

    Got some medical bills sent to collections before the bills ever reached me. By email or paper mail. Haven't paid any of them and I don't plan on ever paying them because fuck the people who just sent that shit to collections. Also medical debt is dumb and you just don't have to pay that shit. They eventually stop bugging you about it and I haven't seen it reflect on my credit score ever.

    A 20 min ambulance ride, with amazing insurance was billed for $575.

    My sister almost broke her spinal cord and the insurance gave us the runaround after the corrective vertebrae surgery.

    The VA didn't want to cover the cost of my grandfather's leg amputations that were a direct result of contact with agent orange in Vietnam.

    The VA doesn't want to cover a coworker's therapy and medication for PTSD caused by being stationed in the middle east for 4 years.

    The VA won't release my mom's army medical records because she was part of experimental vaccines when she was in the army. She thinks it was anthrax vaccines, but can't be sure because nobody will tell her.

    • If anyone still needs help with the VA you can reach out to your local American legion or other veterans organization and they can help break through some of the red tape.

  • I have health insurance through my employer. I haven't found a general practitioner doctor that will take my insurance that is within a two hours' drive. So I haven't been to a doctor for a regular checkup in years. I've just been going to Urgent Clinics when something bad happens. This is not sustainable.

    My obgyn retired two years ago. I haven't been able to find a replacement.

    I will likely need a hysterectomy within the next 5-10 years, assuming I follow the pattern of all older sisters, mom, and aunts and cousins on maternal side. That is my greatest medical concern right now; I'm not sure it will even be legal to get it by the time I need it. Getting it done now is not medically necessary so it won't be covered by insurance.

    I was in a car crash just over a year ago and am still waiting in line for physical therapy. There are places I could go sooner, but they aren't covered by my insurance.

  • 'group bargaining' is a giant lie in the united states. the idea that groups of insured people can bargain for cheaper healthcare. a complete fabrication.

    my monthly insurance costs were cut by 75% when i dumped my corporate health insurance program and signed on to my wifes plan, where she makes far less than i do but the benefits are amazing. because its a government job.

    and i work in the healthcare industry!

    its all a giant fucking scam designed to rape the american people of money.

    private insurance companies only profit when human beings suffer. how many other industries get to do that?!

    • Group bargaining works, it's just that people heard "we're going to use our position to lower consumer costs", but what they said was "we're going to use our position to lower costs". They have no motivation to pass those savings on, considering you probably get a plan partially subsidized by your employer so it's cheaper than what you can get alone, and you're legally obligated to buy insurance.

      Look at what the government can essentially dictate as the procedure costs because they're big enough that their "accept our terms or don't see our patients" is a compelling threat, particularly when backed by the tax ramifications of saying no. They've got leverage and no particular profit motive, so they can tell a hospital "a surgery suite costs you $250 an hour, the surgeon $150, staff another $500, and material $100, with recovery costing another $250. We'll pay 80% and you can bill the patient the remaining $250. If they have gap insurance they'll pay and they can't dispute because we payed". And the hospitals invariably just accept it, rather than lose tax status and ~60% of their patients.

      only profit when human beings suffer. how many other industries get to do that?!

      Defense contractors, daytime talk shows, and reality TV. 😛

  • Once upon a time there was a man who was very, very, very, very, very glad he never had to deal with the American healthcare system. He lived happily ever after.

  • I went for surgery that was to repair a urethral stricture, with the expressly stated reason for doing it as being able to be catheterized in a future spinal fusion procedure. I told every single member of my care team this information, and all knew about the spine instability. A Spondylolisthesis diagnosed by their same hospital system.

    I woke up in agony screaming before I could see. They put me in a position that allowed my back instability to shift. I was screaming to drop the bed. The nurse told me to calm down.

    When I was finally laid flat, I noted I could not feel my genitals and I could not feel about half of my legs or any of my feet. Totally numb.

    I was discharged from the hospital 3 days later with a walker because I couldn’t feel my feet and needed assistance to walk for a proc sure that never should have required it.

    They billed me $250 for the walker, and never followed my requests to ascertain why I was paying for a walker that was the resulting need of malpractice. This was sent to collections.

    I get phone calls weekly about a walker I should never have needed, and should not have been billed for as “outside of network” because it was not pre-approved for an urology procedure.

    Who in the fuck assumed a loss of leg function from an urology surgery? Who gets that pre-approved?

    Fucking cunts.

  • First one:

    About ten years ago my husband got a job and our health insurance changed providers (very common here). My second child needed a refill on his control inhaler for asthma. He'd been on the same one since he was initially diagnosed at 2 years old. Insurance denied covering that brand (which was older and therefore cheaper) until he tried expensive brand. Expensive brand was $80 out of pocket, and I am still livid that they fucked around with his health like that. The only way they'd consider covering the original one was if we tried expensive brand and it didn't work. For a six year old. With asthma. Thankfully, it did work but it still pisses me off.

    Second one:

    Shit happened and my kids and I ended up on state Medicaid for almost a year. My state privatized it and they declined to cover every. single. visit. and now, years later, I'm still fighting for them to retroactively cover visits so I'm not on the hook for thousands of dollars.

  • A pediatric neurologist told me definitively that my oldest son did not have autism. After a year of no improvement and assuming he was a particularly hard to diagnose, I got on the wait-list at the local university medical hospital. They were able to diagnose him quickly (apparently he's pretty text book, but the pediatric neurologist didn't ask the right questions). But he had been without supporting therapies and help in school for years as a result of the misdiagnosis.

    My other kid (also autistic) had an ear ache. The urgent care doc was unfamiliar with how to deal with an autistic kid and assumed he didn't have an ear infection. The next day his ear drum burst and we ended up at the big children's hospital.

    In both cases we had huge delays in appropriate care and had to pay twice.

  • Where's the one guy who had "good" insurance but still almost died because his employer was being bought out when he got sick

  • Shitty physical therapist twice raised what I owed per visit because of their clerk's incompetence. Not just for future visits but retroactively for visits I already had. (Edit: I should say this was possibly fraud and if I had a lawyer it may have been worth pursuing).

    I knew I was screwed when the clerk pronounced tier as tire. Oh well, lesson also learned for me: Always conduct a three-way, recorded conference call with provider and your insurer before provided service.

    Another fun fact; Per KFF, 50% of Americans forego medical attention for free of medical debt. Naturally, this snowballs leading to them inevitably going anyway for a more costly, complex procedure. Our system is top-heavy with specialists for this reason, lacking adequate preventative care and rapid accessibility.

  • it was seemingly resolved but I did get a $1600 bill years after getting some bloodwork done due to one of the myriad tests “not being pre authorized” After a millions backs and fourths between the billing department at the hospital and my insurance it was determined that what had happened was the 3rd party company that “authorizes” blood work (after a doctor orders it and insurance reviews it and the patient gets the blood stolen) had changed names and somehow the idiots in the billing department at the hospital that deals with this company on a daily basis somehow didn’t know this. Why was I the one who had to figure this out and not the people paid to do that? Only Brian Thompson knows.

    Related, my insurance changed its name this July, let everyone know repeatedly for months, but that didnt stop some clerical agent at my drs. office to message me and say they don’t take my insurance and are beginning the offboarding process until I told them its literally the same company. Their response was basically the Ah, Eto… BLEGH meme.

    I feel like these companies will change their names constantly just as another attempt to not pay out what they are supposed to.

  • It's been nearly two months since Publix filled my prescription. At the one month mark I sent my refill to CVS instead and they filled it the next day. I have no fucking clue what's wrong.

  • ProPublica is doing a story and was asking for these on Bluesky at least. Wanted people to share their stories.

100 comments