Special education teacher Robin Ginkel fought for nearly two years with her insurance company to get funding for back surgery recommended by her doctors after she suffered a herniated disc and debilitating pain from a work-related accident.
The plan is not “ridiculous,” she said: “I demand medical care to return to a normal quality of life and to work.”
Initially denied, the 43-year-old from Minnesota spent hours appealing the decision — even filing a complaint with the state — but her claims were denied three times.
Now she prepares for the battle to begin again after deciding her best option is to try her luck with a new insurance company.
“It’s tiring,” she said. “I can’t carry on like this.”
Ms. Ginkel isn’t the only one throwing up her hands.
About one in five Americans with private health insurance said their provider refused to pay for treatment recommended by a doctor last year. According to a survey by the health policy foundation KFF.
Brian Mulhern, a 54-year-old from Rhode Island, said his health insurance company recently rejected a request for reimbursement for a colonoscopy after polyps were discovered in his colon – a discovery that prompted his doctor to request a follow-up examination within three years advisable years instead of the usual five.
Faced with costs of $900, Mr Mulhern postponed the proceedings.
Long-simmering anger over insurance decisions came to the fore earlier this month after the assassination of UnitedHealthcare CEO Brian Thompson — and the killing unleashed a shocking wave of public outrage against the industry.
The crime shook the system and caused an insurance company to reverse a controversial plan to limit anesthesia coverage, negatively impacting the stock prices of major companies.
Although the response raised the possibility that scrutiny could force change, experts said addressing the frustration would require action from Washington, where there is little sign of changing dynamics.
On the contrary, in recent weeks in particular, Congress has once again failed to move forward with long-delayed measures aimed at making it easier for people with certain government-sponsored insurance plans to have their claims approved.
Many advocates also fear that the problems will worsen if Donald Trump returns to the White House.
The president-elect has pledged to protect Medicare, the government health insurance for those over 65 and some younger people. He is known for his long-standing criticism of parts of the healthcare industry, such as the high prices for medicines.
But he has also vowed to loosen regulation, advance privatization, add work requirements to publicly available insurance and cut government spending, of which health care is a large part.
“As things stand today, health care is a target,” said David Lipschutz, co-director of the Center for Medicare Advocacy, a nonprofit that seeks to promote comprehensive Medicare coverage.
“They will try to take away people’s health insurance or limit access to it, and that goes in the opposite direction of some of these frustrations and would only make the problems worse.”
Republicans who control Congress have historically supported reforms aimed at making the health care system more transparent, cutting regulation and limiting the government’s role.
“If you take government bureaucrats out of health care and have a doctor-patient relationship, it’s better for everyone,” said House Speaker Mike Johnson in a video from NBC News last month. “More efficient, more effective,” he said. “This is the free market. Trump will be pro-free market.”
There has long been dissatisfaction with the health care system in the United States, where experts – including from KFF – point out that health care is more expensive than in other countries and performance on basic metrics such as life expectancy, infant mortality and safety during childbirth is worse.
The US spent more than $12,000 (£9,600) per person on healthcare in 2022 – almost twice the average for other wealthy 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 the hopes of making health care more accessible.
The law included measures to expand eligibility for Medicaid, another federal program that helps cover medical costs for people with limited incomes. It also prohibited insurers from refusing patients with “pre-existing conditions,” successfully reducing the proportion of the population without insurance from about 15% to about 8%.
Today, about 40% of the U.S. population is insured through government-funded, taxpayer-funded plans—mainly Medicare and Medicaid—with coverage increasingly being contracted out to private companies.
The rest are enrolled in private company plans, typically selected by employers and paid for with a mix of personal contributions and employer funds.
Even though more people are insured than ever before, frustration remains widespread. In a recent Gallup pollOnly 28% of respondents rated health care as excellent or good, the lowest level since 2008.
There is limited public data on the rate of insurance denials, which can occur even after treatment and leave patients with high bills.
But surveys of patients and medical professionals suggest that insurance companies are requiring more “pre-authorizations” for procedures — and denials by insurance companies are increasing.
For example, in the state of Maryland, the number of claim denials disclosed by insurers has increased by more than 70% in five years, according to reports from the Attorney General’s Office.
“The fact that we pay into the system and then when we need it we don’t have access to the care we need makes no sense,” Ms Ginkel said. “As I went through the process, I felt more and more that (insurance companies) were doing this on purpose in the hope that you would give up.”
Brian Mulhern, the Rhode Island resident who postponed his colonoscopy, likened the industry to the “legal mafia” that offers protection “but on their terms.” He added: “It increasingly seems that you can pay more and more and get nothing.”
AHIP, a lobbying group for health insurers, said denials of claims often result from incorrect applications from doctors or predetermined decisions by regulators and employers about what benefits should be covered.
UnitedHealthcare did not respond to a BBC request for comment for this article. But in an opinion piece written after the assassination of its CEO Brian Thompson, Andrew Witty, head of the company’s parent company, defended the industry’s decision-making.
He said it was based on “comprehensive and constantly updated clinical evidence aimed at achieving the best health outcomes and ensuring patient safety”.
But critics say a for-profit health system is always focused on its shareholders and bottom line, and they link the rise in claims denials to the increasing use of supposedly error-prone artificial intelligence (AI) to review claims.
A developer said last year that its AI tool would not be used to inform coverage decisions, but only to help providers help patients.
Derrick Crowe, communications and digital director for People’s Action, a nonprofit that advocates for insurance reform, said he is confident the shock of the murder will force changes in the industry.
“This is the moment to transform a moment of private pain into public collective power to ensure corporations stop denying our care,” he said.
It remains to be seen whether the murder will strengthen the will to reform.
Politicians from both parties in Washington have expressed interest in efforts that could rein in the industry, such as stricter oversight of algorithms and rules that would require breaking up large companies.
However, there is little evidence that the proposals are having a meaningful impact.
Trump’s nominee to lead the powerful Centers for Medicare & Medicaid Services (CMS), television doctor Mehmet Oz, has previously advocated expanding coverage through Medicare Advantage – which offers Medicare health plans through private companies.
“These plans are popular with seniors, consistently provide high-quality care and provide the incentive needed to keep costs down,” he explained in 2022.
Prof Buntin said Republican electoral gains suggest the US will not accept the alternative – a public system like Britain’s National Health Service – any time soon.
“There is a distrust of people who seem to benefit from disease — and yet that is the foundation of the American system,” she said.
