Care Denied: The Dirty Secret Behind Medicare Advantage

Jenn Coffey was so tired of having her care denied by her Medicare Advantage insurer that she considered signing a do-not-resuscitate order. “There was no more hope,” she said. “There was nothing left for me to hope for.”

Coffey, a former EMT from Manchester, New Hampshire, went on Medicare, the government health insurance program for seniors and others with disabilities, after a breast cancer diagnosis left her unable to work. Like an increasing number of Medicare beneficiaries, she ended up on a for-profit Medicare Advantage plan; a marketer directed her to an option administered by UnitedHealth Group, a $450 billion insurer.

But instead of finding the program a relief, Coffey, 51, says UnitedHeath constantly rejected or second-guessed the care options her doctors suggested for her cancer recovery and for a rare and painful secondary disease that has no standard treatment plan. “There’s lots of ways that they deny stuff that you need,” she said. “So many times that I had the opportunity to try different treatments and medications, the response was, ‘They won’t cover.’”

UnitedHealth’s routine denials led Coffey to frequently end up in the emergency room, and she eventually became so sick of struggling through the system that she nearly waived her right to be resuscitated if her condition was irrecoverable. “Mentally, it was very destructive,” she said. “I have been an EMT and worked in a hospital, knew there were treatments, but never thought about not having access.”

Coffey’s experience with Medicare Advantage transformed her views. Coffey is a former two-term Republican state representative in New Hampshire who, like many GOP faithfuls, believed private insurers could solve the health care crisis if they were allowed to do things like sell policies across state lines.

“Now I’ve realized that you can’t fix or repair the system,” she said. “The insurance companies don’t offer anything. They serve as a roadblock… The only way forward is Medicare for All.”

Coffey is not alone. As the privatization of Medicare via insurer-owned Medicare Advantage plans expands to half of Medicare beneficiaries — 31 million people — care denials by Medicare Advantage insurers are threatening the foundational premise of the government’s health care safety net for seniors and people with disabilities: that people in Medicare should get the care that is recommended by a doctor.

A 2022 investigation by the Inspector General of the Department of Health and Human Services found that in 2019, 13 percent of the total prior authorization requests denied by Medicare Advantage plans would have been covered under traditional Medicare, leading to an estimated 85,000 additional care denials. That year, Medicare Advantage plans also wrongly denied 18 percent of payment claims — covering an estimated 1.5 million claims — reducing the likelihood that doctors will recommend the costliest yet often most effective care, for fear of not being paid.

In the subsequent two years, as total Medicare Advantage enrollment increased from 22 million to 27 million, such denials have reportedly skyrocketed. A February report from the Kaiser Family Foundation found that two million prior authorization requests had been denied by Medicare Advantage in 2021, more than triple the 640,000 prior authorization requests these plans denied in 2019, according to an estimate in the Inspector General’s report.

These care denials are helping to drive record insurer profits — Coffey’s insurer, UnitedHealth Group, made more than $14 billion in profits in 2022, and the other three largest for-profit Medicare Advantage insurers pulled in an additional $10 billion. But these denials have disastrous impacts for ordinary people’s lives, as detailed in numerous patient stories shared with The Lever. And the total instances of denied care are likely vastly understated.

Kip Sullivan, an independent health care policy analyst active in Medicare for All advocacy groups, told The Lever that denied care in Medicare Advantage was “a grossly understudied problem” and that many instances go entirely unnoticed.

“It’s a primary reason for why we should terminate the Medicare Advantage program,” said Sullivan. “There are just not enough cops with nursing degrees stationed in emergency rooms across the country to detect this kind of abuse.”

“Physical And Mental Pain”

Coffey’s story is not unique.

Bob White, a 56-year-old former blue-collar worker living in Texas, spent a few months a decade ago working at a construction company, where he worked with toxic chemicals without proper protective equipment. The exposure left him with severe chronic pain — agony so significant he’s elected to have significant outpatient procedures done without anesthesia, since the pain of the procedures matched his normal levels.

He’s been enrolled in a Medicare Advantage plan administered by the insurance giant Humana for the past 10 years, since he became eligible for Medicare due to his disability.

Prior to White moving from Minnesota to Texas, doctors had put White on a pain pump, a medical device that continually administers pain meds directly to his spinal cord — but to have it installed, he had to travel back to Minnesota for an insurance-approved provider.

Because White’s pain pump kept failing, he needed a solution for his pain problem closer to home — and found a ketamine clinic recommended by doctors as an alternative solution. “I thought it was hocus-pocus,” he said of the ketamine treatments. “[But] within a week it was working better than anything has since I got hurt. The best I ever got on Fentanyl was to an eight on the pain scale, and ketamine got me down to a six.”

Traditional Medicare covers ketamine infusions for severe chronic pain, compensating ketamine providers $300 per session under standard Medicare rates. According to White, Humana had pledged that they would cover his infusions — but then he said the insurer abruptly stopped covering the treatments.

“When Humana pulled their stunt and said they weren’t going to cover it, my blood pressure went through the roof,” he said. “Now I’m stuck on fentanyl again.”

Care denials are a feature, not a bug of Medicare Advantage plans. Traditional Medicare was founded on the principle that seniors and disabled people would get the care they need because it covers care without an insurer middleman, instead making set payments directly to health care providers. But by creating Medicare Advantage, Congress inserted private insurers into Medicare, who have an inherent incentive to deny care. The less medical attention they provide beneficiaries, the more government money they can pocket as profits.

Medicare Advantage options also limit critical care by requiring pre-authorization for an array of services.

Richard Gilfillan, the former CEO of the nonprofit hospital conglomerate Trinity Health, said that prior authorization has led to built-in delays in care, resulting in far worse prognoses for patients. “We’ve built into our whole system of care that we’re going to have to give insurers a week or two to pre-authorize care,” he said.

White said he is appalled by Humana's “need to line their pockets and to cause such physical and mental pain to do so.” And he fears for the potential end result. “I wonder how much it’s going to cost Humana if I had a stroke?” asked White. “It’s going to be a hell of a lot less to give me the ketamine.”

Humana made $2.8 billion in profits in 2022, and its CEO made over $17 million that year.

“I Am Pretty Much Trapped”

In late 2020, Rick Timmins, 75, a retired veterinarian from the Seattle area, discovered a small discolored lump on his ear. His primary care provider referred him to a dermatologist to conduct a standard biopsy — but he faced unexpected obstacles, thanks to Premera Blue Cross, his Medicare Advantage plan.

Unlike traditional Medicare, Medicare Advantage plans are based around provider networks that force patients to choose health care providers selected by the insurance company, or else they face potentially enormous financial penalties. That meant that rather than getting the best care from the most experienced doctors of his choice, Timmins’ plan outsourced its claims processing and determinations to a health services company called Optum, which is a subsidiary of UnitedHealth.

Optum repeatedly gave Timmins the runaround, turning a minor diagnosis into a serious health problem. “I would call every week, and the customer service agent would say that Optum was having some problems,” he said. “This little lump almost tripled in size, very painful. It was malignant melanoma that had become pretty aggressive.” Seven months passed before Timmins was treated.

In a statement, Premera said, “It is always our goal to ensure our members can access quality care that best fits their needs in a timely manner. We are disappointed this member’s experience did not meet those expectations.”

Now in remission, Timmins is facing a new challenge for his recovery, as Premera may no longer cover his doctors at the UW Medicine healthcare system. “I just got a letter from Premera that says [they] were in contract negotiations, [and I] better be prepared to find a new provider.”

Premera concluded negotiations with the UW in early June, but because Medicare Advantage plans always use provider networks, there are no guarantees that future contract negotiations will ensure that UW doctors remain available to patients with Premera.

Timmins pointed to another major issue with Medicare Advantage. Patients on traditional Medicare nearly always purchase Medigap plans, which provide full supplementary coverage to Medicare, as traditional Medicare covers just 80 percent of care costs. But in most states, Medigap plan insurers are allowed to reject patients or discriminate against them by charging them far higher premiums on the basis of preexisting conditions after they have elected for a Medicare Advantage plan, due to a loophole in federal law. So once a patient enters the Medicare Advantage system, they typically cannot afford to leave.

“I’m stuck,” Timmins said. “I can’t change to another Medicare Advantage plan at this stage. I can’t go back to traditional Medicare because there’s no way they’d accept me for Medigap, so it would be outrageously expensive. I’m pretty much trapped.”

“People Are Dying”

In May, the Senate’s Permanent Subcommittee on Investigations held a hearing to investigate the pattern of claims denials and delays in Medicare Advantage, requesting information from the three biggest providers: UnitedHealth, CVS Aetna, and Humana.

The month before, in April, the Center for Medicare and Medicaid Services released a proposed rule that would rein in prior-authorization abuses. The rule emphasizes “continuity of care,” meaning that Medicare Advantage plans would be prohibited from denying care in the middle of a patient’s care plan, and provides that Medicare Advantage will not use additional factors beyond basic Medicare guidelines, such as the opinions of insurer-employed doctors, to deny care.

The reforms are an important step forward. But it is likely that billions will still flow into the pockets of private insurance corporations, further destabilizing the Medicare trust fund (the $409 billion pot used to provide Medicare, funded by payroll tax receipts), and preparing the ground for potential cuts to Medicare down the road.

It’s why Coffey, the former Republican representative from New Hampshire, is now an avid supporter of Medicare for All. By expanding more Medicare services to seniors and the general population, Medicare for All would eliminate the need for Medicare Advantage.

Medicare for All legislation was reintroduced in May with 100 co-sponsors in the House, a record level of support. And a 2022 report from the nonpartisan Congressional Budget Office found that “longevity and labor productivity would increase as people’s health outcomes improved,” if the U.S. implemented a single-payer health care system.

“The way to fix it and open up access for people across the country is Medicare for All,” concluded Coffey. “Every day we are living like this, more people are dying.”

EDITOR’S NOTE: This story has been updated with information provided by Premera to reflect their latest contract negotiations, and to correctly describe Jenn Coffey’s thought process behind signing a do-not-resuscitate order. She considered signing such an order, but did not actually do so.