• 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.

• Holden Karau works in Big Tech during the day and builds her startup, Fight Health Insurance, at night.
• Karau said personal experiences with health insurance denials led her to create the platform.
• The platform uses AI and machine learning to streamline the insurance appeal process.

Holden Karau works as an open-source engineer in California — but just about every day after work, she's building Fight Health Insurance, a free AI-powered platform designed to help people appeal healthcare claim denials.

The 38-year-old Canadian has worked in the big data space for years, previously holding jobs at every FAANG company aside from Facebook.

Karau told Business Insider that while she had never worked on anything healthcare-related, her personal experiences with health insurance claim denials in the US led her to create an open-source tool to automate as much of the appeals process as possible.

Karau said that she's "seen different healthcare systems and the trade-offs," and the Canadian version isn't "perfect either." However, she grew increasingly frustrated with the US healthcare system while seeking out trans healthcare in California and recovering from a motorcycle crash.

Karau said denied claims lead to "a lot of suffering in the world today," and those challenges led her to start working on the AI project to help dispute health insurance denials.

"I'm not going to put up with this anymore. It's time to fight back," Karau said she told herself as she set out to build the tool. "And I think that's probably where the name came from."

She told BI that a later experience navigating her dog's pet insurance pushed her "over the edge" and made her determined to turn the proof of concept into a consumer product other people could use.

"I was like, I've had enough. This needs to not just be like a curiosity," Karau said. She wanted to "make it accessible to the average person," which factored into the decision to make it a free service.

Now, anyone in the US can generate an appeal with Fight Health Insurance by inserting some basic information, uploading a claim denial letter, and, if relevant, their plan documents.

The platform uses machine learning to identify and confirm details, and a fine-tuned large language model to pull data from PubMed, Karau said. The company uses an in-house AI tuned from a base model from Mistral AI, Karau said. To ensure patients' privacy, the system helps anonymize information by removing names and addresses.

Once the appeal is generated, users can review and edit it before mailing it off — or have the company fax it for $5. Karau said she added the faxing service after receiving emails from users saying they loved the platform but didn't have a printer and it was costly to get it printed somewhere else.

"It's a little weird working on an AI project and then going on to eBay to buy fax modems," Karau said. "But, hey, what is life if not a little weird?"

With insurers increasingly using AI to sift through claims, Karau said Fight Health Insurance offers a way to "level the AI playing field." She said while she wants doctors to make decisions about medications and diagnoses, she sees an opportunity for more AI tools to be used in the grunt work of dealing with insurance. Karau said AI could be useful in following up with patients after appointments, whether it be for reminders about surgery or to submit an out-of-network provider form.

The company now has two full-time staff and a few part-time contractors. Eventually, Karau said she plans to monetize the platform by building a professional version for hospital systems and medical vendors, who are also "feeling the pain from health insurance denials."

"Doctors are just super frustrated with all the time they spend dealing with insurance companies," Karau said.

Karau said that she plans to keep the consumer version free, aside from the $5 optional cost to have the company fax out an appeal.

"I think that it's really important that patients don't want to pay to use Fight Health Insurance because they already pay so much," Karau said.

Since launching the side project in August, Karau said over 1,000 have used the platform to help generate an appeal, and a handful have reached out to her to share success stories. She said just the other day she was talking to someone whose back surgery was successfully appealed using Fight Health Insurance.

"Now they're looking forward to getting back to riding motorcycles next year," Karau said.

Exactly how many of those appeals were successful isn't clear because users get responses directly from their health insurers rather than through the platform. The company also doesn't store user emails unless users opt-in, Karau said, so it currently doesn't have a way to follow up with people to learn the outcome unless they choose to share their contact information. However, she plans to incorporate replies from the platform in the future professional version to better track success stories.

In regard to recent conversations about the health insurance industry following the shooting of UnitedHealthcare CEO Brian Thompson, Karau said she understands the intensity of emotions surrounding what can sometimes be life-or-death treatment decisions made by insurance companies.

She also said there's been an increase in traffic to the Fight Health Insurance website in the wake of the larger discussion online about frustrations with the healthcare system in the US.

"I think consumers are hurting a lot in the health insurance space right now," Karau said.

• Warris Bokhari founded Claimable to tackle insurance-claim denials using AI technology.
• Bokhari says denial is a major issue in the US healthcare system, causing fear about getting help.
• Claimable's AI-driven platform boasts an 85% success rate in overturning claim denials.

After working in the insurance industry, Warris Bokhari saw that claim denial was a core issue in American healthcare.

So around two years ago, Bokhari started working on Claimable, an AI startup launched in October that aims to fight claim denials for a growing list of treatments.

"It's no wonder why people give up," the Claimable cofounder and CEO told Business Insider. "If you're a rational person, you would say this model was not fit for purpose."

Bokhari was raised in the UK and grew up with two disabled parents. Unlike people in the US, his parents never went bankrupt because of medical expenses, he said. He went on to work as an ICU doctor in the UK, where, he said, there was "never a time" when a necessary treatment was denied to a patient. When he came to the US, Bokhari continued working in the healthcare industry, including a two-year stint at insurance company Anthem.

In the US, he said, "there's no guarantee" of getting the medical care you need. Insurance companies can end up feeling like an obstacle, and that dynamic has created "fearfulness" about getting sick and seeking out help, Bokhari added.

The insurance industry has faced renewed scrutiny amid the fatal shooting of UnitedHealthcare CEO Brian Thompson. While the motive behind Thompson's killing is under investigation, many of the responses to his death online have disclosed deep frustrations with the insurance industry.

Bokhari said the company didn't support violence toward individuals. "That is not the productive solution," Bokhari said. "The productive solution is appealing."

Claim-denial rates have been increasing for more than a decade. The health policy and research firm KFF reported that 17% of in-network claims by HealthCare.gov insurers were denied in 2021. The same report found that 41% of appealed claims got overturned, though less than 1% of consumers went through the process. Recent criticism has also been directed toward insurance companies that can rely on algorithms to assist in claim decision-making.

Bokhari said that Claimable had helped file hundreds of appeals and that its success rate of overturning denials was about 85%. It joins several startups leveraging AI to improve the insurance process.

Patients start by describing their experience of living with the condition and what it would mean to get denied their requested treatment. The platform then uses AI to analyze millions of data points from clinical research, appeal precedents, policy details, and the individual's medical history to generate a customized appeal within minutes.

Most Claimable appeals cost patients $39.95, plus shipping.

Claimable supports claims appeals for more than 70 FDA-approved treatments for autoimmune and migraine sufferers, some of which may have been denied because of medical necessity or being out of network. In addition to faxing and mailing the appeal to the insurance company, Claimable also sends a copy to every regulator that would have oversight of the insurer.

"Regulators probably assume that these denial cases are occasional," Bokhari said. "They make big headlines, but they don't know that these very private tragedies happen every day in American life."

Bokhari said patients "have a right to be heard," and Claimable helps legitimize those patients' stories.

Claimable closed its seed round in March, backed by Walkabout Ventures, Humanrace Capital, and others. The company is a part of Nvidia's startup program and has a team of about 11 employees.