Your Health Insurance Nightmares Left Us Sick With Rage
First-person accounts on the frustrations of healthcare coverage, from all sides of this American nightmare.
I’m not sure how I could have thought having our readers send me their most maddening health insurance stories would be “cathartic.” No — I am livid and sick with rage.
You detailed the thousands of dollars that supposedly quality health insurance coverage has cost you, the hoops you’ve jumped through to get claim denials appealed, and the mental and emotional suffering that our lack of affordable healthcare has caused.
One reader who was once paid to fight this apparatus from the inside was kind enough to explain some of these cruel insurance claim practices, which you can also read below.
None of the people who wrote in shared any opinion on Luigi Mangione, who has been charged with murder as an act of terrorism following the assassination of United Healthcare CEO Brian Thompson. Perhaps more importantly, two people who wrote to us did mention their support for Bernie Sanders, who ran for president on a nationalized Medicare for All program.
That’s all to say, the excerpts below make two things abundantly clear: that the abject cruelty of American health insurance is intentional and widespread in reach and severity, and that a public healthcare system that prioritizes people over profits is long overdue.
So without further editorializing, here are some of the responses we received, anonymized or signed with pseudonyms, and edited for clarity. For those of you who’ve shared your contributions below, I cannot thank you enough for writing to us and for your honesty. I remain furious for you, and I hope that 2025 brings better news for us all, in healthcare and beyond.
The following stories mention physical and mental trauma, murder, and suicide.
“It took six months to force them into paying. I wouldn't be alive today without that operation.”
I had renal cell carcinoma when I was 21, which is a very young age for that very scary cancer. My insurance company declined to cover the surgery to remove it because the diagnosis was confidently presumed but not confirmed — and couldn't be confirmed until the surgery itself happened. It took six months to force them into paying. I wouldn't be alive today (20 years on) without that operation.
Since then I've been on some drugs to help manage some related symptoms, and they're so expensive that whenever my deductible would reset I had to pay the whole thing on my first refill.
A big shock to the wallet every time. For a long time that would max out my credit limit too. I'm sure people have way worse stories than that, but I wanted to participate too. Plus I had that cute picture of my dog in the screenshot. RIP Georgia.
-Peter
“I thankfully have health insurance as of a year and a half ago, but as is common in these cases, I can't afford to use it.”
Mine is, in the grand scheme of things, not the worst, but it still has informed my worldview. I was still living with my parents when I was 22. We were trying to see if it was possible for me to continue using my parents' insurance, which was TriCare, what the military gets. We were under the belief that, so long as I was still going to school, I could keep the insurance until 26. However, we only found out as I approached the age of 23 that that was not the case. It was possible for me to keep using TriCare, but I would essentially have to pay market value for it, which was something like $400/month, which I definitely couldn't afford.
So 23 came and went and I, for the first time in my life, had no health coverage. Now, I expected this to eventually blow up in my face, but I was shocked at how soon it happened. Less than two weeks after my 23rd birthday, one of my molars cracked open.
A month prior and I could have seen a dentist and potentially had this resolved. I'm 30 now and the situation is still unresolved. I thankfully have health insurance as of a year and half ago, but as is common in these cases, I can't afford to use it.
Things have thankfully turned for the better financially in the last 6 months, and I hope to finally get my teeth fixed in 2025, but it shouldn't have taken that long. I shouldn't have had to go six and a half years without health insurance, worried about if I ever get into a horrible car accident, slip down the stairs, or hit my head.
Going from probably the best healthcare you can get without being fabulously wealthy to nothing directly informed my support for the 2020 Bernie campaign. I had a taste of that public healthcare and desperately wanted everyone to experience it.
-Trevor
“I have no way of contacting that HR department and the issue is still not resolved to this day.”
I was let go from a job two years ago. Recently I found out that they randomly re-activated my previous health insurance plan and all of the claims I've submitted to my new plan were denied for “overlapping/duplicate coverage.” I called them about this and they told me I needed to contact my previous company's HR department to verify the end date of my coverage. I kept explaining that I never should have been re-started on the previous plan so the end date was irrelevant, but they didn't have any recourse for me. I have no way of contacting that HR department and the issue is still not resolved to this day.
-Anonymous
“The insurance company stopped paying ‘lifetime medical costs’ after less than two years. Calls got me nowhere. Promises to return calls to me went unfulfilled.”
When I was 18 I was crossing the road to my friend's house when I was struck by a speeding truck. I had a fractured skull, shattered pelvis, lacerated stomach and liver, and many other lesser injuries.
I spent a week in the ICU, a few weeks in the hospital total. I don't have a direct memory of any of this, since my traumatic brain injury caused anterograde amnesia — the inability to form new memories. This condition lasted for all but the last few days of hospitalization.
My father, who himself was an insurance exec (but not in claims) had me sign the first offer the driver's insurance company offered. I was supposed to have related medical costs covered for life. Two years later, I'd been in and out of the hospital for adhesions caused by the surgery from the accident (not uncommon). The last time, I suffered a total bowel obstruction which nearly killed me, and required emergency surgery again.
A few weeks later, I started getting calls from collections agencies. Months of bills were being denied by the insurance that was supposed to cover me. The insurance company (Farmers) stopped paying “lifetime medical costs” after less than two years. Calls got me nowhere. Promises to return calls to me went unfulfilled. They claimed that they would have to “search their archives, which are stored in another building” and things like that. With no funds to get a lawyer, I eventually had to give up.
I'm disabled as a result of my injuries. I lived with no income for years before Disability was awarded to me (this process takes years). I have lived just above the poverty line the majority of my adult life, because that's how Disability payments are calculated for me. My years of resulting medical costs, which were supposed to be covered by Farmers, are now covered by Medicare.
I'm one of the LUCKY ones, for that reason. I'm lucky to be disabled enough to get help.
“What's the point of covering it for dependents, but not the policyholder who doesn't have dependents?”
Not quite a horror story, but rather bewildering.
My United Healthcare dental insurance wouldn't cover orthodontics I needed. But they would have covered it for any dependents under 18 years old. I don't have kids or dependents on the plan, it was just me. United apparently thinks only kids have crooked teeth. I paid full price for my orthodontics. I appealed twice, and both times they denied me for not being my own child.
What's the point of covering it for dependents, but not the policyholder who doesn't have dependents? The price wasn't that much different than kids orthodontics, and this was the only dental option my employer offered.
-Saphira
“After 2024, we will have spent more than $80,000 for the past four years. How does one consider retiring?”
I am 67, I’ve been self-employed for 29 years, and my recent assignment as a personal assistant ended six months ago. My husband is 68, and he is working full-time.
We are on his insurance, we have the best plan his company offers, and it is a heavy monthly cost, but my prescriptions are too costly for us to move to Medicare. Per the Medicare experts and online listing for all medicines, it’s financially better that we stay with private insurance and pay out the $10,000 deductible each year plus the $9,600 annual total for health insurance.
This has been ongoing since 2021. After 2024, we will have spent $60,000 in medical expenses, plus the monthly $800/month or $9600/year. Essentially, we pay $20,000 per year for medical coverage. This does not include the co-pays for doctors appointments and prescriptions, nor does it pay for dental, hearing and eyeglasses — all necessary as we age.
That is more than $80,000 for the past four years. How does one consider retiring? I've been working since I was a young girl, when I began babysitting at age nine. We’re losing our retirement money while trying to keep up with medical expenses. We do not have that much to begin with, but we've always been working.
When I had a TIA [transient ischaemic attack], the pre-authorizations for hospital stays labeled “observation” weren’t covered by insurance. It’s a scam. Per our insurance, the labeling makes the patient liable for it all. We battle and appeal and try to get procedures paid — all for naught.
I am searching for work, but with scoliosis I am limited in working on my feet all day or lifting, and I am limited in working a full-time job with the many doctors appointments I have. Ageism is at play. Sad to say, employers have not embraced job share opportunities for seasoned and experienced people. Along with selling what I can on eBay, I hope to find babysitting job, back to where I started in my work career.
Absolutely ridiculous and shameful that this is where we are in our country. Without Kamala in the WH, I fear we will lose all of our assets.
-Anonymous
“I once had my entire checking account wiped out because United Healthcare ‘made an error.’”
I had two stories I wanted to share. One as a patient and one as a provider.
I'm epileptic and for a very long time, I was only ever able to take the brand name version of my medication. I had tried the generics and had breakthrough seizures. My insurance continued to turn down my claims saying that it wasn't medically necessary as generics existed. This is in spite of having two different letters from doctors saying otherwise.
The cost would have been $2,000/month. The only way they covered my meds was because I happened to get traction on Twitter with my story. I was lucky enough that a few accounts with big platforms retweeted me and it started doing numbers. An executive on the pharmacy end called me personally and basically told me that they would consider covering and “would be very grateful if I took down the post.” They ended up covering it through a “special exemption” once I agreed to delete it.
I'm also a therapist and I take insurance. More than once now, United Healthcare has deducted money from my bank account saying that claims were retroactively denied. When I called them, every single time they “did not know why” and after months of phone calls would occasionally return the money. People are understandably upset that therapists don't like to take insurance. But the fact of the matter is that these companies can just take money back, at any time, with no reason. I once had my entire checking account wiped out because United Healthcare “made an error.”
-Bill or Be Billed
“I wonder if my mother would still be alive with better funding and earlier interventions.”
I was all in on Bernie 2020 for numerous reasons, like what happened to me on New Year’s Day 2019. I sometimes wonder what my life would be like with a more functional healthcare system.
I found my mother murdered and her killer, my mom’s longterm partner, dead by his own hand. I’d been asleep when they got back from a New Year’s party. I don’t know how drunk he was when he came down to the basement to get the gun. The medication I was on at the time left me prone to waking in the middle of the night to use the bathroom. When I woke, it might have been from the noise above me. She’d had her knee replaced the previous October and her hip the previous April. I thought she might have fallen and needed help.
Mom had been planning on ending things with her longtime partner. They’d been together since 2006, and he was a father figure to me. She’d met someone on Words With Friends, who we later found out he was a romance scammer, so my mom died for nothing. Her partner found out, but they tried to work on their relationship. When mom and I talked about it, I expressed concern about him snapping and shooting her. I locked my door every night for weeks after. Haunts me to this day that I was right.
He was supposed to go to rehab for his alcoholism, but there was a waiting list until February. I wonder if my mother would still be alive with better funding and earlier interventions.
I was working for the local newspaper and the murder-suicide ended up costing me my job and my insurance. My FMLA got rejected. I’m not sure why — maybe my doctor didn’t fill it out correctly, or I downplayed the toll finding my mother took on me. As I was going to submit my revised FMLA, I found out the paper got sold, and I was advised that quitting was my best option. I wasn’t really in a state to progress anything, so I went along with what was clearly a ploy to avoid paying unemployment insurance. I wasn’t told to apply for medical unemployment. Maybe they meant Disability, or maybe it was a way to take me off their hands.
I was never offered COBRA and had to pay for my Effexor out of pocket for over a year. I gave it up cold turkey when the prescription ran out and they wanted me to come in for a doctor’s appointment to renew it. Eventually they relented, but I was far enough along in the process that I decided to continue on through the withdrawal process.
When I lost my job earlier this year, I lost my insurance and was not offered COBRA, and lost a therapist I’d been working on EMDR to help with my trauma. It has been ten months since I had a job and had insurance. I have been white knuckling it ever since.
-John Butler Train
“This only got paid because I was being paid by the hour to harass these demons. I could not today just take seven hours on a Tuesday to spend on hold to not end up $18,000 in debt!”
Just wanted to provide a “behind the scenes” perspective of how fucked up private insurance is.
I worked for [redacted] between 2015 and 2017 and my job was just to try to get insurance companies to pay claims they were supposed to pay. My team worked for [redacted] Hospital, and a ton of their patients are poor and/or elderly. We were just one part of a multibillion dollar industry that only exists because of how wasteful and predatory private insurance is. My job only existed because providers determined it was less expensive to contract out companies to recover some of these claims than take the hits or the labor on it themselves, because of how frequent a problem it is.
I was already progressive but this job was extremely radicalizing. We didn't just see a denied claim. We would have to dig into these peoples health records in Epic, including provider notes. It was day after day of reading, in extreme detail, about people suffering, often with tragic stories behind that suffering, and then seeing the payment for them trying to address that suffering be denied over and over, often for entirely arbitrary reasons, and sometimes literally no reason at all (insurers “had” to provide a reason code for a denial, but they still semi-regularly submitted denials and “forgot” to include a code).
There are laws in place that make it easier for these companies to do what they do. Because of those laws, it’s illegal to share some of what I’m sharing. For example, I am not legally allowed to tell anyone the breakdowns or differences in what each insurance company was billed for the same procedure, how much went to copays, etc. That’s negotiated between the provider and insurance company, and the insurance company usually had the leverage since patients are going to avoid out of network providers if they can for obvious financial reasons. So much for the whole “competition” aspect of capitalism, huh?
The appeals process is intentionally difficult, confusing, and inconsistent. Easily the most mentally draining aspect of the job was keeping up with slightly different appeal policies for each insurer, and they changed at least once a year. Sometimes you had to appeal each individual charge on a denied claim. It was random whether a company gave you 30/60/90/120 days to appeal, some from date of denial, some from date of initial billing, some from date of procedure.
They loved doing plausible deniability shit, where for some reason 9 times out of 10, the denial or appeal denial would come within a week or less remaining in the window of time to appeal it. Because of this, we required signatures for everything we mailed and would only fax things while actively on the phone with the person receiving the fax, all emails had read receipts, etc. It was always understood that you were dealing with a bad faith actor at all times.
(Very notable in the context of the greater discussion: Virtually none of these issues or practices applied to Medicaid/Medicare claims. They were our favorite claims because the phone wait times were longest, but they required no bullshit 99% of the time — it almost always came down to a coding or data entry issue/error, and was trivial to get corrected and paid. It is very difficult to overstate how much easier it was to deal with Medicaid and Medicare than it was to deal with any private insurer.)
One very specific thing that will always stick with me because of how petty and evil it was, was how Aetna handled electrocardiograms (EKGs). An EKG cost $28 with Aetna: the patient paid a $7 copay, Aetna paid $21. Except, Aetna quickly figured out that even in the best cases, it took people like us a minimum of 30-60 minutes to verify a single EKG claim and start an appeal. It wasn’t any less time consuming to confirm payment for a $600 CT scan claim, so in almost all cases it was mathematically not worth our time to investigate those denials; [the hospital] was paying us to recover as much as possible, and only ~$150 of EKG claims in an entire workday was not that.
Because of this, Aetna was notorious for simple mass denying EKG claims to the hospital and its providers. It was extremely common to see a patient in the ER with a heart attack and have every single EKG claim before discharge denied, which at that point doesn't even recoup much money for them, but would still cause some headache somewhere. In non-emergency situations, the $7 the patients with Aetna paid was all [the hospital] was going to get. Would the patient get some sort of refund or credit on their premium or deductible for being the only payment that occurred? Of course not, but the patient will eventually get a bill for the $21.
A more specific story: We had a woman in her 60s who had been admitted to the ER with heart failure and had to be revived at the hospital. An $18,000 claim, and a blanket denial as not medically necessary. I had only been out of training for two weeks and it seemed like a “great” claim — big price tag, easy peasy denial overturn. So I gave Blue Cross a call, thinking just talking to a human could get it paid (a thing that did happen sometimes for lower-priced claims, but maybe all those folks got fired after).
Instead, I ended up on that call for six and a half hours, transferred back and forth between a dozen people and put on hold, before FINALLY a “manager” sheepishly said the denial was due to “human error” and put through the approval. What is a normal person supposed to do in that situation? This only got paid because I was being paid by the hour to harass these demons. I could not today just take seven hours on a Tuesday to spend on hold to not end up $18,000 in debt!
-Anonymous