About 27.5 million Americans live without health insurance, leaving them vulnerable to high out-of-pocket costs for medical, dental, and vision care. But having insurance in our current system doesn’t mean you’ll avoid exorbitant fees—regardless of how high your premiums and copays are. Americans can pay upwards of $4,000 a year just for healthcare coverage, and, still, their insurance plans might not cover mental healthcare, dental, or life-saving surgeries that insurance companies deem “elective.” The cost isn’t just monetary—Americans who have private insurance spend an inordinate amount of time collecting documentation, submitting claims, following up on claims, and arguing with their insurance companies.
I am insured through a PPO plan that most would consider “good insurance,” but I’ve been fighting my insurer for coverage of medically necessary mental healthcare for the past five months. (The issue I'm currently dealing with is after they’d refused to cover a registered dietitian to treat my eating disorder, forcing me to pay out of pocket.) This fight has cost me so much time and money. A lot of my debt comes from medical bills.
I’m not alone in that regard. Roughly 137 million Americans have medical debt. This is so common that the leading cause of declaring bankruptcy in the United States is medical bills. Sixty-three percent of people with medical debt had health insurance when treatment began.
Since the number of Americans with medical debt is far higher than the number of uninsured people in this country, we can see that private insurance plans—which we’re already paying for—are not protecting us against incurring high costs when we need procedures, prescriptions, or treatments.
Despite this, Vice President Joe Biden Biden thinks that Americans want to maintain their private insurance, proposing a plan similar to former candidate Mayor Pete Buttigieg’s "Medicare for All who want it," but the private healthcare system remains a barrier to care for many Americans. That’s probably why the majority of Americans support Medicare for All.
VICE asked people to tell us about their shocking, infuriating, and straight-up terrible experiences with their insurance companies to see how private coverage often works in the U.S..
Answers edited for length and clarity.
Anna Holmes, 30, Everett, WA
My husband and I flew to California to visit my parents and planned to drive their car back up with all my childhood belongings in it. As I was driving through Nevada, the car hit a patch of black ice and flipped over into a ravine. My spine broke on impact. (My husband was OK, aside from breaking his glasses.)
I was taken to a tiny hospital in Ely, where I was immediately pumped full of drugs and sent to get X-rays. Since the doctor couldn’t tell whether the break was stable or not from the X-rays, the doctor gave my shaken husband the choice of flying me to Salt Lake City or Las Vegas for an MRI, since the test, which would have been a four-hour drive. We flew to Las Vegas within an hour, where I had numerous tests done.
At some point in my morphine haze, a lady came through to explain my insurance while my husband was out getting new glasses. None of this registered because of the medication I was on.
Imagine our surprise when we got back home to a $60,000 bill. We knew it would be a lot, but not that much. Our insurance, Blue Cross Blue Shield, decided that the plane trip was “elective,” saying that I could have taken the four-hour ground ambulance ride. We appealed that decision four times, during which the ER doctor clarified that the air ambulance was medically necessary--which was why they never offered a ground ambulance as a choice. While the appeals were happening, the bill gathered interest and grew to $75,000 for just the air ambulance—including the exams and four days in the hospital, the debt was far over $75,000. All four appeals were denied. We decided declaring bankruptcy was our only option.
Kam Burns, 24, Brooklyn, NY
In order for someone to get any sort of gender-affirming surgery, World Professional Association for Transgender Health (WPATH) standards require months of advanced planning. Before even getting to planning my top surgery, I had to navigate finding an in-network therapist and primary care physician because I, like anyone else seeking gender-related surgery, needed letters from a physician and a mental health professional, both of whom I had to have been seeing for at least six months.
After I got the required letters diagnosing me with gender dysphoria, I called in-network surgeons. (There are only a handful in New York who take insurance and perform top surgery.) The first call I made was in December 2018. Her first appointment was in November 2019—and that was just for the consultation. After a few more calls to in-network surgeons’ offices, I decided I would look into out-of-network options, as my insurance had good out-of-network coverage—it was meant to cover 60 percent of costs for out-of-network care.
A private-practice surgeon was able to see me the same week I called. I was feeling really optimistic after meeting with him—his results gallery looked great, and he was really well-versed in working with trans patients. Then things got really complicated.
My insurance company said they wouldn't cover the surgery because the doctor wasn't in-network. I had to get documented proof that I couldn't, as they put it, “reasonably” find an in-network doctor to perform the procedure within a “reasonable” window of time—what that meant was unclear. My insurance company kept suggesting surgeons for me that were either not in the city or had never performed top surgery before. The entire time, I was being deadnamed, and referred to as "ma'am" and "Ms. Burns."
After finally getting together all of the needed documentation over the course of four months, my insurance did end up covering almost all of my top surgery just weeks before the scheduled surgery. But, four months after surgery, I randomly got an unclear bill in the mail for $2,000, plus two “final notice” emails. I’m still in the process of fighting that. Because my surgeon’s office has been impossible to reach since I received this bill, I’ve scheduled an appointment to get some answers face-to-face.
Caroline Reilly, 26, Boston, MA
I have endometriosis, a chronic reproductive health condition that can cause pain, fatigue, organ damage, and infertility. After an ineffective ablation surgery—where endometriosis lesions are essentially burned off—I found out that excision surgery, where lesions are cut away and removed completely by a specialist, is the gold standard in endometriosis care. There are only a small number of surgeons nationwide skilled enough to perform a successful excision surgery, meaning I would have to locate a qualified surgeon and then travel for care. Most of these surgeons operated out-of-network, due to difficulties in doctors getting fairly reimbursed for complex surgeries. Ablation and excision are coded the same for insurers, meaning a trained specialist is reimbursed the same for excision—which can be an eight-hour surgery—as an unskilled surgeon performing a much quicker and easier procedure. Because of this, most people with endometriosis are looking at tens of thousands in out-of-pocket costs.
I found a surgeon in Maine, about two hours from me. Getting the insurance coverage for the hospital itself was a nightmare. The insurance company was trying not to cover the hospital, which was in-network care. My surgeon was literally on the phone with insurers at the airport while on vacation with his family, fighting to make sure I wouldn’t be charged tens of thousands for my hospital care. The company ultimately covered my hospital care after we fought hard for those promised benefits, but I still paid thousands out of pocket for my surgeon's care, as well as hundreds for consults and office visits. I have friends who aren't on insurance plans that cover hospital fees, as mine did, and some are out tens of thousands of dollars for surgeries that saved their quality of life.
Amber Ulinger, 25, Sacramento, CA
In June 2019, I underwent gender confirmation surgery. Under my provider, Health Net's benefits, the procedure should be covered, but I couldn't find a doctor who could perform the surgery within Health Net's network of providers. At the behest of member services, I chose an out-of-network surgeon, with the understanding that a letter of agreement between Health Net and the surgeon would allow the surgery to be conducted as an in-network benefit. Informed by prior research, I found a doctor who was willing to work with my insurance.
Once I had a surgery date, I began to prepare. My mother planned to care for me for the first few weeks after my operation and, accordingly, took time off work. I bought supplies for post-operative care, quit my job, and traveled for surgery. The day before, after I had already fasted for several days and taken a bowel-preparing medication, I received a call from the hospital informing me that this surgery would not be covered. I had two choices: cancel the surgery for which I had quit my job and spent two years researching and preparing for; or give up on surgery, as there were no in-network providers I could work with.
I chose to undergo surgery, paying nearly $4,000 upfront. I am now stuck with nearly $20,000 of medical debt that I have little recourse for, other than bankruptcy. Should the procedure have been covered in-network, I would have reached my out-of-pocket maximum of about $4,000 and paid no more.
My insurance blamed this on the lack of in-network providers for gender-affirming care, but if an insurance company says that they cover a service, and there are no in-network providers, this service is rendered utterly inaccessible without plunging yourself into debilitating debt.
Adrie Rose, 26, Pittsburgh, PA
I went from functionally flat-chested to a D cup at age 12. After years of continued growth, the back pain from having large breasts got bad enough that I was enrolled in physical therapy once a week. I went to so many PT sessions that my insurance stopped paying for it and told me to see an orthopaedic surgeon, who told me I needed a breast reduction. My insurance wouldn’t cover the surgery unless I lost 40 pounds, even though I was recovering from an eating disorder, so I gave up.
Between the ages of 24 and 25, I went up another cup size. My back hurt all the time, my fingers would go numb because of pinched nerves, and I was sleeping on the floor because I couldn’t find a mattress hard enough to support my spine.
Desperate, I asked my doctor if she would refer me to a plastic surgeon for a reduction consultation. The surgeon and the resident only examined me for about five minutes before he started rattling off symptoms: permanent rash, upper and lower back pain, pinched nerves in the shoulders, numbness in the hands and fingers, inconsistent weight because cardio is impossible, migrating breast tissue because there’s no more space for it on my chest, etc. My insurance company denied the request to fund the surgery, so the surgeon had me come in to take pictures of the indentations in my shoulders from bras and the purple bruise that covered my rib cage.
Because of the pictures, my insurance company told me the reduction surgery was deemed “medically necessary,” but it would only cover 75 percent of the cost. After 14 years of back pain, I decided to scrape together the almost $7,000 and make it work. I don’t regret anything about the surgery. While my meds were covered, surgical bras were not—I wore the post-op bra I left the hospital in. I’m still recovering financially more than a year later.
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This article originally appeared on VICE US.