‘It didn’t use to be like this’: America’s sorry health care system exposed by the murder of CEOs

SSince the fatal shooting of UnitedHealthcare CEO Brian Thompson, polarized debate over America’s health insurance system has not subsided, with thousands of Americans continuing to share their struggle to get their health care covered.

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

While many reported that their health care had deteriorated in recent years, especially in 2024, Elizabeth, a 64-year-old retiree from Maryland, experienced the system’s brutality more than two decades ago when she lived in California and was involved in a serious car accident while on a business trip to another state in 2002.

“I was treated in a trauma hospital for three days,” she remembers. “My insurer denied coverage because the care was not pre-approved and because the accident did not occur in California. It was crazy.”

Only repeated calls from her employer’s head of HR convinced her insurer to finally partially cover her treatment, she said. “I was very lucky,” Elizabeth said. “Health insurance in the US is an ongoing battle. You always try to draw attention to things, you are always told that things are denied.

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

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

After adding her husband to her policy, Elizabeth’s insurance costs more than doubled, while the chemo made her so nauseous that she threw up in coffee cups and in her car after work, she recalls. “It was very difficult. After surviving cancer, I decided I needed to get a job at a university because they would have to provide health insurance, while a small business or nonprofit might not.”

She took two master’s degrees off her resume to get hired for a university job for which she was overqualified. She accepted a major career cut and a significant pay cut that she never recovered. “I know many people who have ruined their careers this way just to get health insurance,” she said.

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

Dozens of people reported that their insurers had sent them automated denials, ignored correspondence for months, or changed coverage rules arbitrarily and frequently, moves they saw as attempts to avoid paying for claims.

“The exploitation of our system has been so consistent and universal that most of us have long since fallen into a kind of learned helplessness,” says Liz, 43, a doctor from Minnesota.

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

Seven years ago, Liz’s husband was denied cervical spine decompression surgery because he was in no pain, she recalled. “I appealed twice through the standard appeals process, but was denied twice more. I finally 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.”

While some people felt their health care was decent, mostly due to generous workplace health insurance, the vast majority of respondents said obtaining coverage and accessing treatment was consistently difficult.

Dozens of people said they were left paying expensive medical bills despite having insurance, including Stephanie Maughan, 68, of Boston, who said she was saddled with thousands of debts after her insurer last year refused to cover medical bills of about $20,000. cover.

“It was a nightmare,” Maughan said. “I broke my finger and needed occupational therapy. My husband needed hearing aids. It was all “that’s not covered,” “you’re out of network,” and “you have to pay your $2,500 deductible.” It’s true that we had to take out a loan. We’re not poor, but as far as I’m concerned, we don’t have health insurance, despite paying about $400 a month for a premium policy. This was not the case in the past. This country is in big trouble.”

Dozens of respondents who have navigated the U.S. health care system for many years believed that corporate greed has made the system increasingly less accessible, less safe and more exhausting in recent decades due to increasing bureaucratic hurdles and more expensive.

“More and more hospitals are run by companies these days,” says 64-year-old Thesia from Houston. “Before there was profit, now they want bigger profits and continued growth. It’s a bit like the story about the frog in the water, and someone slowly increases the temperature while the frog doesn’t notice.”

Almost a quarter of U.S. hospitals are now run by for-profit organizations, and in 2021, 5,779 physician practices were privately owned, up from 816 in 2012.

Thesia, who enjoys a premium insurance policy that his employer heavily subsidizes, feels he is getting “a good deal” by paying about $5,000 annually for a Preferred Provider Organization (PPO) plan. to protect himself and his wife, given the quality of care they receive, while freely choosing their doctor.

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

However, several years ago, when his wife was seriously ill, she was denied coverage for an MRI, 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 echoed that of many other respondents.

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

“Even after the ACA, healthcare is still hard to reach,” says a 59-year-old data scientist from New Hampshire. “I had to change my old doctor because that office no longer accepted ACA plans. But even now that I have a non-ACA plan through my employer, I have had to change prescriptions as insurers choose what to cover. An emergency room visit costs more than a thousand dollars and I avoid additional medical tests because they are not always covered.”

He said for-profit health care providers always tried to find additional ways to increase billing and decrease coverage, such as by having out-of-network specialty providers within in-network hospitals.

“Every time I’ve used my health insurance, other than for an annual checkup, I’ve paid my share and then they decided they would reimburse less and months later I got a surprise bill,” says Marcus from Texas, who is among many who complained about hidden costs and unexpected bills that cropped up long after they had access to healthcare, ranging from dental cleanings to pre-approved surgeries.

Many reported having difficulty finding a doctor after their previous one dropped out of their insurer’s network due to untenable new terms imposed on them by the insurer. Several people said their insurer asked them to travel an hour or more to see a doctor. doctor who would treat them.

Several people said they had been unable to find a doctor who was taking new patients, and many said unexpected costs kept them from seeking medical care.

Marta, a 31-year-old from North Carolina, was among a number of people who critically compared the American system to their experiences with health care and insurance abroad.

“In Germany, as a family we paid much more for insurance, because of our high income,” she said. “Here, as a relatively healthy family, we end up paying less, even though each visit costs about $200.”

Like others, Marta admitted that wait times to see a doctor in other countries – Britain, Germany and Poland in her case – tended to be significantly longer than in the US.

Lisa Markey, a Briton living in New York, recently described her experience using the UK’s NHS as “a disaster”. In Britain, she said, she had no access to treatment for her retinopathy and almost lost her sight as a result. It was resolved quickly, she said, when she returned to the U.S., where she experienced “extraordinary coverage” while having company insurance through her employer.

However, the lack of advance pricing information in the US compares unfavorably with healthcare experiences abroad. “The first time I went to a doctor here, I thought, ‘Great, I’ll just pay my copay,’” Marta said. “Two months later I got a bill for $400. It’s a gamble. I am grateful that we are so well off that we don’t have to worry about the cost of going to the doctor, but if I made less money I would think five times before getting medical help.”

Seth Polansky, 52, a Washington DC attorney who has a net annual salary of about $80,000 and currently pays about $800 a month for his health plan, said he had been with his insurer, one of the largest in the country and considered one of the cheapest, for years.

“Every year they get worse,” he says. “Until 2018, I had been taking the same dosage of my medications for twenty years. Then they decided I could only take two pills a day instead of three – which is what my doctor argued. This year they completely removed my medication from coverage.”

Two of his regular doctors, Polansky said, had recently left his insurer’s network because the insurer changed contract terms. “I already have to pay an $8,000 per year deductible on top of my premiums to use my insurance, but I spent my own money to go to my old doctor who knows me.

“I will probably postpone my retirement because of these costs. Last year, UnitedHealth Group had a profit of more than $20 billion. How much is enough?”