• 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.

• More than 3,600 older Americans have shared their financial and other regrets with Business Insider.
• Many said they regretted relying on government programs designed to keep them out of poverty.
• This is part of an ongoing series about older Americans' regrets.

America is getting older — and that shift is straining the federal programs meant to keep older people out of poverty.

Since mid-September, more than 3,600 older adults have shared their life regrets with Business Insider through reader surveys and direct emails. Many spoke about their struggles navigating programs like Social Security, the Supplemental Nutrition Assistance Program, and Medicare. This is part of a series on Americans' retirement regrets.

The overwhelming message was that these programs weren't enough to pay the bills. Retirees said they regretted not realizing this and not saving more to supplement their government checks.

BI followed up with several retirees and asked experts about the programs' performance and improvements they might need. Since most of the retirees rely on programs run by the federal government, the solutions discussed here mainly focus on the public sector. Others may have ideas for private or charitable solutions as well.

To be sure, many American retirees are doing just fine. Baby boomers have benefited from rising home and stock-market values over their lifetimes, and OECD data suggests the US's retirement system is doing well in some areas compared with those of other developed countries. Census data indicates roughly 11% of people 65 and older in the US lived in poverty in 2023, down from about 25% in 1976.

Still, many people are struggling, and the pressures are only likely to grow as the population ages and funding wanes. Some argue that such trends increase the need to preserve or bolster government programs designed to reduce poverty among older adults.

We want to hear from you. Are you an older American with any life regrets you'd be comfortable sharing with a reporter? Please fill out this quick form.

Americans increasingly rely on government checks like Social Security, and the program's funds are diminishing

Pamela Shields, 67, gets $1,470 a month in Social Security payments and an additional $600 from her jobs as a caregiver and a night-shift worker at her local grocery store. She had a long career in customer service and human resources, but she's dealt with unexpected medical expenses and two divorces, and she still provides her children with some financial support.

She said that Social Security wasn't enough to rely solely on and that she feared she wouldn't have enough to retire.

As with all beneficiaries, Shields' Social Security check amount is based on her earnings during her working years. But some major categories of spending — like housing, healthcare, and some utilities — have outpaced inflation in recent decades.

"I really want to be retired and not have to do all this stuff to make a living," Shields said. "But I don't see myself doing that."

Research from the bipartisan public-policy firm Economic Innovation Group suggests that US households like Wood's are increasingly reliant on government assistance like Social Security. EIG found that in 2022, Americans got an average of $11,500 in government payouts, representing 18% of the population's total personal income.

But Social Security may be in trouble, with payouts expected to start shrinking in the mid-2030s. As more baby boomers reach peak retirement age, the strain is expected to grow. Without a solution, they could be the last generation to receive full benefits.

"Social Security has been a very expensive program for a very long time, and it's more expensive particularly as we see upswells in the over-65 share of the population," said Benjamin Glasner, an economist at EIG.

One solution to extend the program's life is to start cutting benefits now. The US Government Accountability Office said in a report this summer that applying an across-the-board cut for all Social Security beneficiaries or cutting some spousal or widower benefits could increase longevity.

Of course, that would put people who are already struggling in an even tighter spot. Ultimately, Glasner said, the US needs more younger workers contributing to the Social Security fund through taxes. He argued that the US should invest more in helping people start and sustain families — the US's fertility rate hit a historic low this year.

"We will not be able to tax or cut our way out of this budgetary mess," he said. He also proposed consolidating various federal benefit programs, including Social Security, to reduce the administrative burden and reduce costs.

Another option is to turn up the nozzle on the program's funding sources: payroll taxes, interest on government securities, and taxes on benefits. Some Democrats, led by Sens. Bernie Sanders and Elizabeth Warren, have proposed raising payroll taxes on higher earners to help offset the cost of hiking benefits for everyone.

Gopi Shah Goda, the director of the Retirement Security Project at the center-left think tank Brookings Institution, said the US could consider how other countries address retirement programs, including using general tax revenue, like Australia, and focusing expenditures more on lower-income retirees, like Canada.

Because Social Security is among the federal government's biggest expenditures, some legislators are looking for cost-cutting strategies. House Republicans have proposed raising the age at which Americans become eligible for benefits. President-elect Donald Trump has suggested cutting Social Security income taxes for retirees, which could provide immediate relief but further imperil future funding for the program by reducing tax revenue overall.

Andrew Biggs, a senior fellow at the right-leaning American Enterprise Institute, has proposed capping monthly benefits at $2,050 beginning in 2033, arguing that this amount would keep more older Americans above the poverty line and keep benefits higher for longer than across-the-board cuts would when funding runs dry. This might mean smaller checks for higher earners, but he argued that Social Security is often inefficient for middle- and higher-income Americans because the safety net discourages them from working longer or saving more.

"Because of the taxes charged to fund those benefits, people tend to reduce their labor supply," Biggs said. "If I'm getting an extra $500 per month from Social Security, that's going to reduce the amount I save for retirement."

One way to help workers save more and extend the life of Social Security would be to increase access to employer-match 401(k)s at work. In a December fact sheet, AARP cited an estimate that 56 million Americans — the vast majority of whom earned less than $50,000 — lacked access to retirement savings plans through their employer.

A handful of BI's survey respondents mentioned wishing they had 401(k) matching at work or jobs that provided financial guidance for retirement.

Still, retirees' average Social Security benefits are over 40% higher than they were in the 1970s when accounting for inflation. Participation in — and contributions to — retirement plans has increased since the 1970s. People are also claiming Social Security slightly later in life.

Researchers said that delaying taking Social Security could substantially improve people's retirement security, provided they have other income sources.

Some Medicare and private insurance plans hike premiums on older people or don't cover some needs

Older Americans told BI that medical emergencies, the need for long-term care, or expensive prescriptions eroded their savings. Whether they have private or government insurance, out-of-pocket costs add up. For those on a budget, affording healthcare and other essentials can be challenging, especially if medical conditions keep them from working.

Ronda Nichols, 60, worked as a paralegal, but her career ended when she slipped on ice in 2008. Her emergency savings weren't enough to cover her surgery, which, with aftercare costs, cost well into the hundreds of thousands of dollars. Nichols, whose Medicare premium is paid for by Idaho, lives on about $1,100 in disability and $300 from her late husband's pension each month, much of which goes toward prescriptions and over-the-counter pain medications.

"Economically this injury has really impacted me, because every month I think if my Social Security doesn't come I'm screwed," Nichols said.

About 68 million people are enrolled in Medicare, which is divided into traditional Medicare and private insurance overseen by Medicare, such as Medicare Advantage plans.

Dr. Joel Shalowitz, a specialist in geriatric medicine who formerly taught at Northwestern University, said older people could save money on health-insurance premiums if private policies and Medicare Advantage health plans were forbidden from steeply hiking rates for older beneficiaries, as some policies on the Affordable Care Act Marketplace are.

Plus, he said, if all Medicare plans offered health savings accounts, older adults could build emergency funds for medical expenses and out-of-pocket costs.

Goda said many older Americans aren't aware that some Medicare plans don't cover long-term care, hearing aids, or dental care. "It's in a way impossible to know every possible outcome of what ailment you might have and how your health insurance will cover the resulting costs associated with that," Goda said.

She suggested that streamlining access to benefits and subsidizing services for people who need long-term care could improve the system. Goda added that an aging population doesn't always correspond to increased dependency. She argued that the US should invest in health throughout people's lives, citing research that childhood Medicaid eligibility for young people with disabilities was associated with higher employment and lower transfer-program costs decades later.

In a 2023 article, David Henderson, a research fellow at the right-leaning Hoover Institution, said that if Medicare cuts were to happen, Americans might value turning the program into a per capita benefit where each person receives a set amount to spend as they see fit and particularly sick people get double the allocation.

"Spending $900 billion on 65 million people would give each person $13,800," Henderson wrote. "The vast majority of people would value this $13,800 much more than they would value the amount that Medicare spent on their health care."

An outdated poverty line is preventing some older Americans from getting help

The poverty line, set at $15,060 annually for a single person, has been calculated nearly the same way since the 1960s, when housing was cheaper and groceries were a larger component of household budgets. Many government-assistance programs, like SNAP or Medicaid, base their eligibility criteria on this measure.

Older Americans told BI these programs didn't always provide enough aid to pay their bills. Mary and Steve Dacus, both in their late 60s in Robinson, Illinois, receive $23 in SNAP benefits and $2,140 in Social Security income a month. Mary previously told BI that she and her husband felt food insecure, and she called their limited SNAP allotment "pitiful."

Americans over 65 account for the largest increase in households classified as ALICE: asset-limited, income-constrained, employed. These Americans are still working and make too much to qualify for most government benefits but not enough to cover all their bills. Stephanie Hoopes, the national director of United For ALICE, said that removing complicated paperwork and verification steps could streamline applications for aid programs.

She said that raising the federal poverty threshold and expanding eligibility for government-assistance programs could also help many people access essentials. Of course, any safety-net expansion would have to be paid for by higher taxes or changes in state and federal budgets.

Hoopes added that benefits could be adjusted based on how inflation affects the costs of housing, childcare, food, transportation, healthcare, and technology, adding that this "would allow participants to keep up with the cost of their basic needs."

Still, changing the poverty line would most likely mean that government-assistance programs like SNAP would need more funding to operate, and it would increase the number of Americans considered to be in poverty — a politically unpopular move.

Are you an older American with any life regrets you'd be comfortable sharing with a reporter? Please fill out this quick form.

• Donald Trump will decide whether to renew subsidies that make the ACA marketplaces more affordable.
• Biden's enhanced ACA subsidies, which lowered premiums for the middle class, will expire in 2025.
• Ending the subsidies would save the government money, but increase premiums for many Americans.

Federal subsidies meant to make health insurance more affordable for low- and middle-income Americans could be on the chopping block when Donald Trump returns to the White House.

President Joe Biden's enhanced version of the Affordable Care Act subsidies — which provide lower premiums and reduced out-of-pocket costs for lower-earning Americans who don't get health insurance subsidized by their employer or a government program like Medicaid — are set to expire at the end of 2025. At some point next year, Trump and a Republican-led Congress will decide whether to renew or end the subsidies.

Ending the subsidies would save the government money but restrict healthcare options for the people and families who rely on them. If the subsidies are allowed to expire, the Congressional Budget Office estimated that nearly 4 million people would drop coverage in 2026. 

The president-elect has been inconsistent with his support for the Affordable Care Act and has previously proposed cuts to healthcare programs like Medicare and Medicaid. The Trump transition team did not respond to BI's inquiry about ACA subsidies but previously shared a statement that Trump would "protect Medicare" as president.

Trump has not publicly said whether he plans to let the enhanced ACA subsidies expire, but he has made cost-cutting a cornerstone of his second-term promises.

The Affordable Care Act — also known as Obamacare — was passed in 2010. The law introduced the ACA marketplaces, which were meant to make health insurance more affordable for lower-earning people whose incomes would be too high to qualify for Medicare and Medicaid. It also requires insurance companies to cover preexisting conditions, like diabetes and heart disease.

Biden's expansion increased the financial assistance for people already on ACA plans and lifted the income eligibility cap for those benefits. Some middle-class families had previously been priced out of health insurance.

Since 2020 — the year before the subsidies went into effect — the number of people with ACA marketplace coverage has grown by 88%, to 21.4 million people from 11.4 million, per KFF.

Gary Young, the director of Northeastern University's Center for Health Policy and Healthcare Research, told Business Insider that the ACA subsidy debate underlines a growing problem: America's healthcare costs are ballooning, and it's taking a toll on people's finances and federal budgets.

"We are having this debate at the same time that we are beginning to see healthcare costs ramp up," Young said.

How ending ACA subsidies would impact Americans and government spending

Ending subsidies would be cheaper for the government and taxpayers. Some Republicans like Vice President-elect JD Vance have said they want to inject needed competition into the health insurance marketplace. Young said a more robust marketplace could lead to more diverse insurance plans being available, allowing people to choose coverage that best fits their needs without the government footing the bill.

"There's concerns about whether the subsidies maybe went too far," Young said. "They're providing people with financial resources to purchase more extensive insurance than they otherwise would purchase, and it's not necessarily an efficient way of using federal resources."

Still, Young said letting the ACA subsidies expire would probably make healthcare more expensive for millions of people. Nearly all Americans on ACA plans would pay higher premiums, he said. KFF reported that low-income people would see the steepest increase in healthcare costs relative to their income.

Any move by Trump to change ACA policies would need congressional approval. Because insurers have to submit their plan proposals next summer for the 2026 enrollment period, Trump will probably need to decide early in his term whether to extend the enhanced ACA subsidy.

Trump's 2nd term has a cost-cutting agenda

The US government spent $6.75 trillion total in fiscal year 2024, which resulted in a national deficit. At $912 billion, the Department of Treasury reported that healthcare — programs like Medicaid, the Children's Health Insurance Program, the Centers for Disease Control and Prevention, and more — is a top government expenditure behind Social Security. Medicare costs add another $874 billion. If the enhanced ACA subsidies were to become permanent, the Congressional Budget Office and Joint Committee on Taxation estimate that it would cost $335 billion over the next 10 years.

Tesla CEO Elon Musk and former GOP presidential candidate Vivek Ramaswamy were tapped by Trump to co-lead a new Department of Government Efficiency. The pair plans to propose cuts for the government's most costly programs, but it's not yet clear if that will include healthcare programs.

Trump's nominees for the top healthcare positions are Robert F. Kennedy Jr. leading the Department of Health and Human Services and Dr. Mehmet Oz leading the Centers for Medicare and Medicaid Services. Neither Kennedy nor Oz has outlined a specific plan for affordable healthcare in 2025, and neither responded to a request for comment.

In an opinion piece published in 2020 on Forbes, Oz said he supports a universal healthcare plan, but the stance is likely to be at odds with the Trump administration's cost-cutting agenda.

Are you doing anything to prepare your finances or healthcare plan for Trump's second term? If so, please reach out to this reporter at [email protected].

Correction: December 2, 2024 — An earlier version of this story misstated who is eligible for the enhanced Affordable Care Act subsidies. The subsidies apply mostly to people who purchase health insurance on the Affordable Care Act marketplaces. Some Medicare recipients are also eligible, but not Medicaid recipients.