Americans Are Sharing Their Health Insurance Horror Stories, And Something's Gotta Change

Note: This post contains mentions of pregnancy loss, disordered eating, and suicidal ideation.

Last week, a major health insurance company's CEO was fatally shot on the streets of Manhattan, sparking a lot of conversation about the problems with the American healthcare industry. We obviously don't condone violence, but this is an important conversation that needs to be had. So, we asked members of the BuzzFeed Community to share their health insurance horror stories to shed some light on why so many Americans are so angry with these companies. Here's what they had to say:

1."I experienced a miscarriage and then became pregnant again years later. During that second pregnancy, I began having the same symptoms I had during the first miscarriage and went to get checked up. An ultrasound confirmed the baby was still doing okay, and the doctors agreed that it was good to come in since I recognized symptoms and was being proactive to make sure it wasn't happening again. Because the baby was okay, the insurance company deemed the visit and ultrasound to have been unnecessary and sent me a large bill. Apparently, I should have ignored the warning signs, I guess."

2."Having a rare autoimmune disorder myself, I have many insurance horror stories. One that is a continuing nightmare is a battle for this monthly infusion called IVIG. This infusion is one of the few things that actually helps me. Since my disorder is rare, there's only one medication out there approved for it. This means any other medications that help are "off-label," so typically, insurance won't cover it. You can appeal and fight their decision. This sometimes works. With the IVIG infusions, my doctor and I won our appeal about 7 years ago. Everything was going well with getting it as an outpatient until last year."

"The insurance company stopped paying for my infusions, which I wasn't even made aware of until the company that supplied it to me contacted me for an outstanding balance I didn't know I had.

When I contacted my insurance company, they informed me that my infusions were no longer covered because of my diagnosis. Now, mind you, nothing had changed on my end as far as my diagnosis, symptoms, doctor, literally NOTHING. The people at the insurance company couldn't and still can't give me an actual explanation as to why.

My doctor and I have spent countless hours appealing their decision to no avail. And one of the most baffling kickers is that my insurance does cover the IVIG infusions if I'm hospitalized! I'm hospitalized about once a month due to the severity of my disorder. If I don't get the IVIG, then it's even more frequent. So, the insurance company would rather pay more money for me to be hospitalized and get the infusions than just paying for me to receive it way cheaper as an outpatient. At least make it make sense!!!"

—mhilts44

3."I was in a motorcycle wreck in which I badly damaged my femur at my knee. I was on the waiting list for a cadaver replacement. When there was finally a match and I went for clearance, I had a cold. My doctor found it was pneumonia. Given that the surgery from the donor part was time-sensitive, my anesthesiologist used a combination of sedatives that were safe given the pneumonia. My health insurance company insisted the anesthesia was not medically necessary — during a surgery in which my knee was being cut open and my femur was being operated on. I appealed, but I lost. Got stuck with an $11k bill."

—Sarah, New Orleans

4."Once, I had to be taken by ambulance to the ER. The closest and in-network ER was full and rerouting patients. I got hit with a higher ambulance bill for having to travel farther to get to a more rural hospital, and my visit wasn’t covered because it was now out-of-network."

5."I have incredible insurance — it’s $800 each month for me and my family. Know that going in. When I had my first baby, I was in labor for 33 hours, then had an unplanned C-section, and then my son had to be in the NICU for 5 days. Overall, it was $66,000 for my stay and $125,000 for my son’s. Again, I have very robust insurance with high monthly costs, low deductibles, and low out-of-pocket max. My deductible was $750 and my out-of-pocket max was $3,500 (which you fulfill over the course of the year; easy to do when you have prenatal care). A month or so after we got home, I received a huge bill saying I owed $15,000."

"This was shocking because I had met my out-of-pocket. I called the insurance company, and they gave me a simple, 'Whoops, oh, sorry, fixed it.' I didn’t have to pay anything.

The issue? How many times do people assume that they actually DO owe these charges? What if I hadn’t been more skeptical and called? What if I had just paid it? Is this how they profit? By making a little 'whoops' now and again? I’ve just lost trust in the system. I’m skeptical."

—Emily, Washington

6."I am an RN who works in prior authorization for a hospital. Basically, I get authorization from insurance plans for patients to have procedures and/or hospital stays. The reasons that health plans try to deny these stays and procedures border on insane. We have had patients who need open heart surgery or have been transferred from a small rural hospital after suffering a cardiac arrest and being resuscitated, and their insurance company denies their stay, saying it’s not medically necessary."

"We then have to pull in our physicians or another company (at extra expense) to override the denial. I often wonder who is making these decisions. My teenager could tell you these stays are medically necessary. It makes me physically sick some days, but I feel like someone has to advocate for these patients."

—Alexis, Kansas

7."When I was a teenager, my mom had brain cancer and was being put in for an MRI scan. The health insurance refused to pay for it, y’know, so she couldn’t see how her multiple brain cancer tumors were doing under treatment. As if she didn’t have enough stress already. She did end up winning against the health insurance and has now made a healthy recovery. By the way, she says hi and hopes you all have a nice day."

8."During my senior year of college and my husband's grad school year, he ended up in the hospital because of pneumothorax. That means there was a pocket of air outside his lungs that could've killed him. He was in the hospital for five days, couldn't even get out of bed on his own, and wasn't allowed to do any work of any kind for his student-teaching or master's project for a full month after being released from the hospital. He was only 23 and was only a student-teacher so he was still on his father's insurance. The insurance company didn't want to cover the pain medications he took while they CUT OPEN HIS DIAPHRAGM AND INSERTED A PLASTIC TUBE INTO HIS CHEST!"

"He wasn't even put under anesthesia for that! They also didn't want to cover the X-rays and scans they did on him! We went back and forth for months with them.

It wasn't until my mom, who is an attorney herself, called with me and basically threatened to use her career as an attorney to finally get them to cover his hospital stay. We were broke kids back then. We barely had enough money to afford our apartment and our tuition. We would've been screwed if my mom hadn't stood up for us!"

—Emmy, Virginia

9."I was born with a 90% hearing loss, which they didn't discover until I was 2 because I wasn't really talking yet. My doctors figured out the issue (which is a whole other story), and I could get most of my hearing back with surgery. I was on a very good insurance plan from my dad's job at the time. My mom had to fight for months, delaying the surgery, with the insurance company because, and I quote, 'hearing in both ears is a luxury,' and they wanted my mom to pick which ear I was going to have the surgery on."

"She finally got it approved for both after months of back and forth and appeals and denials. Legend has it that she was once talking with someone high up in the insurance company and asked him which one of his kid's ears he would choose and asked if he could come here and tell me which ear I get the luxury of hearing out of. I'm a musician and dabble in audio engineering now. I can't imagine how different my life would've been if the insurance company had gotten away with that."

—Ben, New York

10."When my baby was just 3 weeks old, she tested positive for RSV. As many people know, RSV in a newborn can be very dangerous because they have almost no immune system, and they can’t cough up mucus — making it hard for them to breathe. She was extremely congested, would often gasp for air, and her oxygen levels were low. On top of that, she was struggling to eat. Her pediatrician immediately sent us to a children’s hospital, where she was admitted to the NICU."

11."I developed an eating disorder when I was 13. My parent's insurance had a clause saying they didn't cover treatment for eating disorders. It was 'good' insurance, too, for federal employees. I got sicker and sicker and sicker for 14 more years until I went to graduate school in Montreal. There, I enrolled in a free treatment program at my school. I received care from a therapist, doctor, psychiatrist, nutritionist, and a special group where we practiced eating together. In three semesters, I was in total remission."

"I went from going days without eating, purging, and binging multiple times a day for more than a decade to making food for myself, even eating birthday cake at my best friend's party in less than 18 months. Why did Canada care about my wellness when the United States was willing to let me die?"

—Jesse, Oregon

12."In 2023, I was diagnosed with a rare form of cancer. After surgery and radiation, I’m thankfully in remission, but my treatment plan includes staying on a hormone blocker long-term because my cancer was hormone-sensitive. Because of how rare my cancer is, I’ve seen five different oncologists in three states —they all agree that the hormone-blocking medicine is an essential part of my treatment. The few articles that are published about my cancer also explain that hormone blocking is an important part of preventing recurrence after surgery. My insurance company denied my life-saving medication for multiple weeks, through several appeals, because they claimed that the treatment wasn’t 'medically indicated.'"

"They truly thought they knew better than five specialists and all of the published research on this condition. Finally, they approved the treatment after my doctor called multiple times to request a peer-to-peer discussion, but in the meantime, I spent two weeks terrified that I would have a recurrence and helpless to change anything about my situation."

—Leslie, Minnesota

13."My pacemaker surgery in 2018 cost $285,000. Even though I paid handsomely for insurance that was supposed to cover 100%, Blue Cross Blue Shield denied the claim. I had no choice but to fight them. My advocate at work was awesome. She persuaded them to pay it all. They wouldn’t have done that for me; they gave me the run around on the phone. It took about six months to resolve it, and I was stressed the entire time. No way I could ever pay that. The stories of what others have been through are heartbreaking. I know how hopeless and angry they feel."

14."Our 12-year-old daughter needed surgery on her spine to help with severe scoliosis. We had been told by the orthopedic surgeon that if the surgery wasn’t completed within a year, she would need to use a wheelchair for the rest of her life. The insurance company denied the claim, listing it as 'elective.' We had to go through the appeal process twice before it was approved. She had the surgery and recovered. Unfortunately, she will most likely need additional surgeries in the future."

—Jean, Oklahoma

15."I was three weeks postpartum from birth and a pregnancy that I almost died from due to complications. I submitted a request to extend my leave because I could not sit up in bed without extreme pain and had a kidney infection that would not subside with basic medications, so I was almost in kidney failure and sepsis. My company and insurance only covered six weeks of unpaid leave unless an extension to 12 weeks was 'medically necessary,' which an employee of the insurance company decided."

"My Dr provided detailed notes which my state (Massachusetts) accepted immediately as medically necessary to continue to be on leave, but my company would not approve the leave without the insurance company accepting it.

So, I had to return to work, or I would have lost my job. I am the breadwinner, and my job is what provides my whole family healthcare. Four weeks into work, I needed to submit a short-term disability claim due to having a plan to commit suicide due to the pain, diagnosis of insomnia (in addition to normal ‘no sleep’ of the newborn phase), working 40 hours a week, and finally being diagnosed with postpartum psychosis and bipolar disorder (which I did not have before pregnancy and birth).

Now, I have a lifelong mental disorder due to not being able to rest and recover appropriately from a complication-ridden pregnancy, birth, and postpartum period."

—Jessica, Massachusetts

16."Cancer survivor here. I found out TWO YEARS after my double mastectomy with reconstruction that some element of it was denied, and I was on the hook. It took months of constant phone calls, submissions, and trying to prove repeatedly that we hit our out-of-pocket maximum that year and to no avail. Finally negotiated it down to a few hundred dollars. We paid it just to make it go away, which is what I think they were hoping for all along, even though we legally could have kept fighting. This was with Cigna, and I hate them forever now."

17."My 3-year-old son is currently being denied one of his medications for his metabolic disorder. The main ingredient in his medication is actually approved, but the compounding component is not (I was told the compounding is the expensive part of his medication). As I said, he is 3 and, therefore, has not learned the skill of swallowing a pill, so the compounded medication is necessary. He needs the medicine in order to help keep his ammonia levels from rising, which, if raised, can cause a myriad of symptoms as severe as brain damage or death."

"He has been without his medicine now for six weeks and was admitted to the hospital with raised ammonia levels. He had to stay two nights until the doctors could give him his medication (which is available if inpatient) and stabilize his ammonia levels. I fully believe that had he had his medication at home, the hospital visit would not have been necessary. We are still fighting to get his medication approved and are crossing our fingers that it will happen before we have to go back to the hospital."

—Sarah, Michigan

18."My son and I both have asthma. United Healthcare wouldn’t cover any of the costs related to rescue inhalers or preventative inhalers. The preventative inhaler was about $200 per person per month, and the rescue inhaler was about $40 per person per month. At the time, we were a family of four surviving on one income, so preventative inhalers were cut from the budget, and the rescue inhalers were shared. I had a horrible asthma attack and used the last of the rescue inhaler. I had to go to the ER for a breathing treatment."

"I was released once my breathing was under control. A few hours later, I was back in the ER for another breathing treatment. We weren’t able to stabilize my breathing, and I ended up staying in the hospital for an entire week. I thought I was going to die. It was the scariest experience of my life, and it really pisses me off that it could’ve been prevented. UHC covered the ER trips and the week-long stay, but they didn’t cover a single medication the hospital prescribed once I was released. It’s insane to me that I pay $400/ month for insurance, and they wouldn’t cover a life-saving medication."

—Mary, Arkansas

Do you have a health insurance horror story to share? Tell us what happened in the comments.