Since the fatal shooting of the UnitedHealthcare CEO, Brian Thompson, polarised discussions about the US health insurance system have not abated, with thousands of Americans continuing to share their struggles in having their healthcare covered.

Hundreds of people from across the US shared their frustrations with the Guardian, too, explaining how their lives had been shaped by their experiences of trying to access healthcare in the US.

While many reported that their health coverage had worsened in recent years, particularly in 2024, Elizabeth, a 64-year-old retiree from Maryland, already experienced the system’s brutality more than 20 years ago, when she lived in California and was involved in a serious car accident during a business trip to another state in 2002.

“I was treated at a trauma hospital for three days,” she recalled. “My insurer denied coverage because the care had not been pre-approved, and because the accident was not in California. It was insane.”

Only repeated calls by her employer’s head of HR persuaded her insurer to eventually partly cover her treatment, she said. “I was very, very lucky,” Elizabeth said. “Health insurance in the US is a constant battle. You’re always trying to get stuff covered, you’re always told that things are being denied.”

The same insurance company later denied coverage for a standard chemotherapy drug with which her oncologist wanted to treat her stage 3 breast cancer, she said.

“My doctor persuaded the drug representative to donate the medication,” Elizabeth said. “I was very sick for two years, but I had to keep working. My husband had just been laid off and I had health insurance.”

After adding her husband to her policy, Elizabeth’s insurance cost more than doubled, while the chemo made her so nauseous that she threw up in coffee cups and in her car after work, she recalled. “It was very hard. After surviving cancer, I decided I had to find a job with a university because they would have to provide health insurance, whereas a small business or non-profit might not.”

She took two master’s degrees off her CV to get hired for a university job she was overqualified for, accepting a hefty career downgrade as well as a substantial pay cut she never made up again. “I know a lot of people who have wrecked their careers in this way – just to get health insurance,” she said.

People from all states, ages and backgrounds shared how coverage for prescribed, often critical treatments had been denied, or only been approved after lengthy delays and months or years of arguing with the insurer, and often only with the help of legal counsel.

Scores of people reported that their insurer had sent them automated rejections, ignored correspondence for months, or changed the rules for coverage arbitrarily and frequently, moves they perceived as efforts to evade paying out for claims.

“The exploitation of our system has been so consistent and universal that most of us have long ago settled into a kind of learned helplessness,” said Liz, 43, a physician from Minnesota.

“I work in healthcare and have ‘good’ insurance – we pay $10,000 per year in premiums. We barely use it, so it’s been a pretty good deal for my insurance company. Still, they didn’t hesitate to charge me $600 extra when my son broke his arm last month.”

Seven years ago, Liz’s husband was denied a cervical spine decompression surgery because he was not in pain, she recalled. “I appealed twice through the standard appeal process and was denied twice more. Eventually, I got the surgery approved after calling and crying on the phone. A humiliating process, clearly built to wear us down until we give up, while we and our loved ones suffer.”

Although some people felt their healthcare was decent, usually thanks to generous workplace health insurance, the vast majority of respondents said getting coverage and accessing treatment was perpetually difficult.

Dozens of people said they had had to foot costly medical bills despite having insurance, among them Stephanie Maughan, 68, from Boston, who said she had been saddled with thousands in debt after her insurer denied covering medical costs of about $20,000 last year.

“It’s been a nightmare,” Maughan said. “I broke my finger and needed some occupational therapy. My husband needed hearing aids. It was all ‘that’s not covered’, ‘you’re out of network’ and ‘you have to meet your $2,500 deductible’. It adds up, we had to take out a loan. We’re not poor, but as far as I’m concerned we have no health insurance, despite paying about $400 a month for a premium policy. It didn’t used to be like this. This country is in big trouble.”

Scores of respondents who have been navigating the US healthcare system for many years felt that corporate greed had progressively made the system less accessible, less safe, more exhausting due to mounting bureaucratic hurdles and more expensive over the past few decades.

“More and more hospitals are run by corporations today,” said 64-year-old Thesia, from Houston. “There was profit before, now they want bigger profits, continual growth. It’s a bit like the story about the frog in the water, and someone slowly bringing up the temperature while the frog doesn’t notice.”

Nearly a quarter of US hospitals are now run by for-profit entities, and by 2021, 5,779 physician practices were owned by private equity, up from 816 in 2012.

Thesia, who enjoys a high-end insurance policy his employer heavily subsidizes, feels he is getting “a good deal” by paying about $5,000 annually for a preferred provider organization (PPO) plan covering himself and his wife, given the standard of care they have been receiving while being able to freely choose their doctor.

“For that, the insurance pays 80% and I have to come up with the other 20%,” he said. “This year we paid between $6,000 and $8,000 out of pocket, and I think that’s fair.”

Some years ago, however, when his wife was really sick, she was refused coverage for an MRI, based on the recommendation of a doctor working for the insurer. “I found out who the doctor was. Not only was he not a specialist, he was not licensed to practice medicine in our state. I reported this to the insurer. They didn’t respond, they just approved the MRI,” Thesia recalled, an experience that chimed with that of many other respondents.

Barack Obama’s Affordable Care Act (ACA), also known as Obamacare, Thesia felt, had improved health insurance access for some groups of people, particularly those with pre-existing medical conditions. Others noted the landmark reforms did not go far enough, complaining about the high cost of Obamacare plans, the need for referrals by a primary care physician and the overwhelming complexity of the medical billing system.

“Even after the ACA, health coverage is still difficult,” said a 59-year-old data scientist from New Hampshire. “I’ve had to change from my longtime doctor because that office stopped taking any ACA plans. But even now that I have a non-ACA plan through my employer, I’ve had to change prescriptions because insurers choose what they cover. A visit to the emergency room costs over $1,000 and I avoid getting any extra medical tests because they’re not always covered.”

For-profit healthcare providers, he felt, were always trying to find additional ways to increase billing and reduce coverage, for instance by having out-of-network specialist providers within hospitals that are in-network.

“Every single time I have used my health insurance other than for an annual checkup I’ve paid my portion and then they decided they were covering less and I was met with a surprise bill months later,” said Marcus, from Texas, who was among many who complained about hidden costs and unexpected bills surfacing long after they accessed healthcare, ranging from teeth cleanings to pre-approved surgeries.

Many reported that they struggled finding a doctor after their previous one had dropped out of their insurer’s network due to untenable new terms imposed on them by the insurer, with various people saying their insurer had asked them to travel for an hour or longer to see a doctor they would cover.

Several people said they had been unable to find a doctor who was accepting new patients, and many said unexpected costs now made them avoid seeking medical help.

Marta, a 31-year-old from North Carolina, was among a number of people who critically compared the US system with their experience of healthcare and insurance abroad.

“In Germany we were paying way more as a family for insurance, because of our high income,” she said. “Here, as a relatively healthy family, we actually end up paying less, even with each visit costing about $200.”

Like others, Marta conceded that waiting times to see a doctor in other countries – the UK, Germany and Poland in her case – were usually significantly longer than in the US.

Lisa Markey, a Briton living in New York, described her experience of using the UK’s NHS recently as “a disaster”. In the UK, she said, she could not access treatment for her retinopathy and nearly lost her eyesight as a result. It was fixed swiftly, she said, upon her return to the US, where she experienced “extraordinary coverage” while she had corporate insurance through her employer.

The lack of upfront pricing information in the US, however, compared unfavourably with experiences of healthcare abroad. “The first time I went to a doctor here, I thought, ‘Great, I only pay my copay,’” Marta said. “Two months later I got a bill for $400. It’s a gamble. I’m grateful that we’re well off enough not to have to worry about the cost when going to a doctor, but if I was earning less, I’d think five times before getting medical help.”

Seth Polansky, 52, a solicitor from Washington DC who has a take-home annual salary of about $80,000 and currently pays approximately $800 monthly for his health plan, said he had been with his insurer, one of the largest in the country and considered to be one of the cheapest, for years.

“They get worse every year,” he said. “Until 2018, I’d been on the same dosage of my medication for two decades. Then they decided I could only have two pills a day instead of three – no matter what my doctor argued. This year, they completely removed my medication from coverage.”

Two of his long-term doctors, Polansky said, had recently moved out of his insurer’s network, because the insurer had changed its contract terms. “I already have to pay deductible fees of $8,000 per year on top of my premiums just to be able to use my insurance, but I went out of pocket to see my old doctor who knows me.

“I’m probably going to delay my retirement because of these expenses. Last year, [UnitedHealth Group] had over $20bn in profits. How much is enough?”