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Special education teacher Robin Ginkel has spent nearly two years fighting with her insurance company to try to pay for back surgery that her doctors recommended after a work injury left her with a herniated disc and excruciating pain.
The plan was not seen as “ridiculous”, he said: “I am asking to get medical help so that I can return to a normal life and return to work.”
After initially being rejected, the 43-year-old Minnesota native spent hours appealing the decision – even going so far as to file a complaint with the state – only to see his claim rejected three times.
Now he is preparing for the battle to begin again, having decided on the best way to try his luck with a new insurance company.
“It’s boring,” he said. “I can’t go on like this.”
Ms Ginkel is not alone in throwing up her hands.
About one in five Americans with health insurance reported that a provider refused to pay for a doctor-recommended treatment in the past year, according to a study by the Health Policy foundation KFF.
Brian Mulhern, 54, of Rhode Island, said his health insurance company recently denied a request to pay for a colonoscopy after polyps were found in his colon — prompting his doctor to recommend a follow-up exam within three. years instead of five.
Faced with a $900 out-of-pocket expense, Mulhern put the project on hold.
Long-standing anger over insurance policy decisions came to the fore earlier this month after UnitedHealthcare CEO Brian Thompson was killed — and the killing sparked a surprising public outcry at the industry.
The case threw the system into disarray, prompting one insurance company to reverse a controversial proposal to reduce surgical coverage, and hit the share prices of major companies.
Despite the fact that the review forced a change, experts said that overcoming the frustration may require action from Washington, where there is no sign of immediate change.
In fact: in the past few weeks, Congress has also failed to advance long-stalled measures to make it easier for people with government-sponsored insurance plans to file claims.
Many aides are worried about the growing crisis, now that Donald Trump is back in the White House.
The president-elect has promised to protect Medicare, which is the government’s health insurance for people over 65 and some young people. He is known for his long-standing criticism of certain aspects of health care, such as high drug prices.
But he also vowed to liberalize regulations, enforce privacy and add work requirements to publicly available insurance and cut government spending, of which health care is a big part.
“The way things are today, Medicare is important,” said David Lipschutz, director of the Center for Medicare Advocacy, a nonprofit organization that seeks to improve Medicare coverage.
“They’re going to try to take away people’s health insurance or limit people’s access and that’s going to be the opposite of some of these frustrations and it’s only going to add to the problems.”
Republicans, who control Congress, have supported historic reforms aimed at making health care systems more transparent, reducing regulations and reducing government responsibilities.
“When you get the federal government out of health care and have a relationship with the doctor, it’s good for everybody,” House Speaker Mike Johnson said. in a video obtained by NBC News last month. “Effective, effective,” he said. “That’s the free market. Trump will be the free market.”
Dissatisfaction with the health system for a long time in the US, where experts – including at KFF – show that care is more expensive than in other countries and the service is worse on basic parameters such as life expectancy, infant mortality and safety during childbirth.
The US will spend more than $12,000 (£9,600) per person on healthcare in 2022 – almost double the amount of other rich countries, according to the Peter G Peterson Foundation.
The last major reform, under former President Barack Obama in 2010, focused on expanding health insurance in hopes of making care more accessible.
The law also included measures to increase eligibility for Medicaid, another federal program that helps pay medical bills for low-income people. It also prohibits insurers from rejecting patients with “pre-existing conditions”, effectively reducing the share of the uninsured from about 15% to 8%.
Today, about 40% of the population in the US receives insurance from taxpayer-funded public health plans – mainly Medicare and Medicaid – that are provided by private companies.
The rest is covered by plans from private companies, which are often chosen by employers and paid for by a mix of their own contributions and employer funds.
Although more people have been covered than ever before, disappointments are still everywhere. In a recent Gallup pollOnly 28% of respondents rated healthcare as good or good, the lowest level since 2008.
Public data on the rate of insurance denials — which can happen after care is received, leaving patients with significant liabilities — is scarce.
But surveys of patients and medical professionals show that insurance companies want “prior authorization” to do it – and the pushback from insurance companies is on the rise.
For example, in the state of Maryland, the number of claims denied by insurers has increased more than 70% in five years, according to reports from the state attorney general’s office.
“The fact that we pay into the system and then when we need it, we can’t get the care we need doesn’t make sense,” Ginkel said. “When I was doing this, it was going well for me [the insurance companies] do this on purpose and hope you stop.”
Brian Mulhern, a Rhode Islander who gave up his colonoscopy, likened the industry to a “legal mafia” – providing protection “but in proportion”. He added: “It seems you can pay more and get nothing.”
AHIP, an advocacy group for health insurance companies, says claim denials often reflect mistakes made by doctors, or arbitrary decisions about what to do by regulators and employers.
UnitedHealthcare did not respond to the BBC’s request for comment on the matter. But in an opinion written after the death of CEO Brian Thompson, Andrew Witty, the CEO of the company’s parent company, defended the company’s decisions.
He said it was based on “substantial and continuously updated evidence about achieving good health outcomes and ensuring patient safety”.
But critics complain that the for-profit healthcare system is always focused on shareholders and the bottom line, and have linked the rise in denials to the rise of the use of artificial intelligence (AI) to review claims.
One software developer said last year that its AI tool wasn’t used to inform decisions — just to help guide agents on how to best care for patients.
Derrick Crowe, director of digital communications for People’s Action, a nonprofit that advocates for insurance reform, said he believes the fatal shock will force changes in the industry.
“This is the moment to take a moment of private pain and turn it into a public movement so that companies stop denying our care,” he said.
It is not known whether the killings will strengthen the will to change things.
Politicians from both parties in Washington have expressed interest in initiatives that could shake up the industry, such as tighter oversight of algorithms and regulations that would require the demise of large firms.
But there is little sign that these ideas have any meaning.
Trump’s nominee to run the Centers for Medicare & Medicaid Services (CMS), TV doctor Mehmet Oz, has already endorsed the expansion of Medicare Advantage – which provides Medicare health plans through private companies.
“These goals are popular among seniors, they provide consistently good care and the necessary incentive to keep costs down,” he said in 2022.
Prof Buntin said the findings of the Republican election show that the US is about to embrace another approach – a public-run approach like the UK’s National Health Service – sooner rather than later.
“There’s a distrust of people who seem to be benefiting or benefiting from disease — yet that’s the foundation of the American system,” he said.