My health insurance covered nearly $900K after 26 days in the ICU, but the real financial battle started after I left the hospital

• Stella Shon experienced burn-like wounds all over her body from an allergic reaction to medication.
• One insurance provider paid almost $900K for the ICU. Her follow-up claims have been rejected.
• Shon has paid over $20,000 out of pocket for related medical expenses since her hospitalization.

Editor's note: Business Insider has verified all medical expenses and payments mentioned in this article.

I'll never forget the day I opened my UnitedHealthcare app and saw nearly $900,000 in hospital charges.

In August 2022, what started as flu-like symptoms rapidly escalated into a life-threatening emergency, and I was diagnosed with Stevens-Johnson Syndrome, a rare, severe allergic reaction to medication.

After taking over-the-counter pain relievers and antibiotics, a rash spread across my body, and I was rushed to the ER with burn-like wounds, requiring immediate intubation in the burn ICU.

Nearly a month later, I was discharged from the hospital. It was a turning point in my life — not because I'd survived the ICU, but because the battle was far from over.

Long-term complications come with a cost

Over 26 harrowing days in the hospital, I lost my vision and developed raw wounds from my head to my torso. Just as my condition began to improve, I developed sepsis. Ironically, the treatment included a monthlong course of IV antibiotics — the same type of medication that likely triggered this nightmare.

In the first year of my illness, I attended over 50 follow-up appointments with specialists in ophthalmology, dermatology, gynecology, and infectious diseases and received a deluge of medical bills.

Overall, I was extremely fortunate that UHC fully covered the $885,855 cost of my hospital stay, except for my $5,100 out-of-pocket maximum. However, my ICU stay was only the beginning of the costs I would face in managing the long-term complications of the disease.

Prior to this incident, I had a flawless medical record. In the two years since I left the ICU, I've spent an average of $8,500 a year on health insurance, $11,000 on lenses to protect my damaged corneas, $1,400 on prescription eye drops, $3,000 on glaucoma surgery, and more than $5,000 on follow-up appointments with various specialists.

I've realized the cost of ongoing medical appointments and necessary treatments will become a lifelong financial burden.

My eyes were permanently damaged

Two weeks into my ICU stay, which happened to be my 24th birthday, I was taken off of a ventilator. I vividly recall the first time I tried to open my eyes and had to shut them immediately due to unbearable, searing pain. The condition left permanent scars on my corneas and meibomian glands, which are responsible for tear production. As my vision gradually returned — a miracle in itself, given that many SJS survivors lose their sight permanently — my doctor delivered a sobering prognosis: The damage to my eyes was permanent, with little hope for improvement.

I refused to give up on my eyesight. Fortunately, my cornea specialist referred me to an optometrist who offered a glimmer of hope: scleral lenses. Unlike regular contact lenses, these dome-shaped lenses are filled with saline, creating a protective fluid layer over the eye. This design helps treat corneal and ocular surface conditions like SJS and costs $11,000 for both eyes.

In addition to the initial cost for the lenses, there were ongoing expenses to consider. Supplies, such as preservative-free saline and cleaning solutions, added about $100 a month to my budget.

Insurance providers denied coverage for my treatment

The next hurdle? UnitedHealthcare did not consider these lenses a medically necessary emergency and denied coverage. If I wanted a chance at reclaiming my life, I had to shoulder the entire cost up front.

I called customer service many times to appeal my claim, with documented proof from my optometrist and the cornea specialists who treated me, saying I needed these scleral lenses. Weeks passed, and I remained in pain. I felt my only choice was to pay for the full cost of the lenses while continuing to fight my insurance — ultimately without success.

It's not just a UnitedHealthcare issue, though. I've submitted five insurance claims related to my eyes, specialty contact lenses, prescriptions, and burn scars to various other insurance providers, and they've all been denied.

My friends created a GoFundMe to help me cover living and medical expenses

I'm deeply grateful for the support of my best friends, who stood by my side every day in the ICU and started a GoFundMe while I was intubated. This fund became a crucial lifeline, covering my out-of-pocket maximum and the cost of the life-altering scleral lenses that now allow me to live a relatively normal life.

The financial strain was unimaginable and extended far beyond medical bills — rent payments, along with other living expenses, continued to pile up.

I spent a few months on long-term disability leave before leaving my corporate job by the end of the year. At the beginning of 2023, I shifted to a freelance writing and editing career instead, which afforded me greater flexibility to attend follow-up appointments and address my long-term needs. The main drawback, however, was losing employer-sponsored health insurance.

I'm self-employed now, and it's clear the healthcare system needs to change

My experience raised the question of whether coverage denials are specific to certain insurance companies or indicative of a broader systemic issue.

I'm now a self-employed writer and no longer have employer-sponsored insurance through UnitedHealthcare. Over the past few years, I've been covered by Blue Cross Blue Shield, Cigna, and now the University of Utah Health Plans through the Affordable Care Act, which comes with substantial out-of-pocket costs. And I've continued to face coverage denials for a variety of reasons. For example, my autologous serum eye drops — which are derived from my own blood and provide significant relief for my dry eyes — aren't covered by insurance because they lack FDA approval and are labeled "experimental." I pay $660 for a three-month supply.

While most of the scars have faded with time, many are still visible on my face and upper body. Last year, I had a series of laser treatments at the dermatologist, each costing me $250. These claims were denied by my new plan — highlighting that this issue isn't unique to one insurer.

After my experience, I understand why so much anger and frustration toward healthcare companies has bubbled up online since the murder of UnitedHealthcare CEO Brian Thompson. It was a shocking crime, but the conversations it has raised have helped me process the desperation and powerlessness I've felt in my two-year struggle to appeal my claims.

I recognize how fortunate I am to have regained my vision and avoided financial debt from my ICU stay. However, one thing is abundantly clear: Meaningful changes to the healthcare system are long overdue.

A UnitedHealthcare spokesperson sent the following statement to Business Insider:

Ms. Shon's plan was self-funded, and therefore, her employer was responsible for payment of covered claims. In assisting her employer in processing these claims, we requested information from one of her providers, but we received no response.