Jenn Coffey was sick, on several medications, and in and out of the hospital around 2016 when she made a decision that she has come to regret.
Having fought off breast cancer, the former emergency medical technician faced numerous complications, and was diagnosed with two rare diseases: complex regional pain syndrome and small fiber neuropathy.
“I was terrified,” she said. “I went into the hospital as a fully functional EMT and came out in a wheelchair, to go on disability income, and I lost everything. I lost my house, I lost everything.”
Coffey, 52, had been selling her belongings and raising money on GoFundMe to cover her medical care. To make things cheaper, she shifted her disability plan from traditional Medicare – a government-run health insurance program for older and disabled people – to Medicare Advantage, a program under which private health insurers contract with the Medicare program to provide health benefits.
With monthly premiums of $18.50 per month on average, Medicare Advantage often looks like a frugal alternative. However, private insurers keep premiums low by limiting providers and using byzantine cost containment tools such as prior authorization.
For Coffey, switching proved more expensive, as her Medicare Advantage provider, UnitedHealthcare, denied requests to cover treatments, medications and infusions she required.
Coffey used to be a Republican state representative in New Hampshire. “I changed a lot over these years,” she said. “I used to think we could fix healthcare.”
Her experience with Medicare Advantage is not unusual. Private insurers now cover roughly half of the nation’s 68 million Medicare beneficiaries. Their dominance of this space has grown rapidly over the past two decades – at the expense of patient care, according to healthcare activists and patients, as corporations often deny medical care directed by doctors.
•••
“I was stunned,” said Gloria Bent, of the first time her husband, Gary, was denied coverage for his brain surgery. It was only the start of their issues with Medicare Advantage.
Gary – a retired physicist professor in Connecticut – fought two types of cancer over six years, before passing away in March 2023. He had been put on a Medicare Advantage plan as part of his retirement health coverage, through the University of Connecticut.
Gloria, and Gary’s daughter, Megan, spent the final months and years of his life battling with NaviHealth – his Medicare Advantage plan’s software, through UnitedHealthcare – which constantly denied covering Gary’s medical care and treatment, contrary to doctor recommendations.
Each denial forced them to either cover the costs themselves – such as a wheelchair, for $2,000 – or consistently file appeal after appeal.
“You’re worried about your loved one who is in a medical crisis, you are trying to get there to support them every day, and you’re having to fight these online battles with the health insurance company to try to keep them there,” said Gloria. “It’s just a horrendous additional stress.”
She was informed by both her husband’s doctors, and other experts she contacted for assistance, that the modus operandi of Medicare Advantage private insurers was to deny medical care coverage.
“It just felt so cruel,” added Megan. “Like they weren’t thinking of my dad as a person, they were just thinking about him in terms of profit or dollars and cents.”
Gary “was really upset at the way he was being treated”, she recalled, “and “stressed about money”.
•••
Concern about the prevalence of such cases is growing. Older adults with Medicare Advantage are significantly more likely to struggle with medical bills or debt than those under traditional Medicare plans, according to a 2023 report by the Commonwealth Fund.
On 3 June, Senator Elizabeth Warren of Massachusetts is hosting a webinar on the barriers faced by patients with Medicare Advantage plans.
The late healthcare activist Ady Barkan became concerned about Medicare Advantage in 2022, according to Carmen Rhodes, policy director for Be a Hero, the advocacy organization he founded.
The private program’s surge in enrollment “is not going to be good for the American people”, said Rhodes, “because it will be a system that consistently delays and denies people care for profit, and continues to give away billions of dollars to corporations that are actually not best positioned to decide on our healthcare”.
But the expansion of Medicare Advantage has been immensely profitable for private health insurers tied to the program, who enjoy high-gross margins compared with other plans. Over the next 10 years, Medicare Advantage insurers are expected to receive more than $7tn in payments from the federal government.
Private insurers have spent millions of dollars on advertising, marketing and hiring insurance brokers to sell Medicare Advantage plans to beneficiaries. In 2023, brokers received $601 per new enrollee for most Medicare Advantage plans, significantly higher than commissions for traditional Medicare plans.
“I don’t think when it comes down to it that most people realize the extent to which private equity and privatization is moving into Medicare and Medicare Advantage,” said Rose Roach, executive director of the Minnesota Nurses Association. “They are buying up pieces of the entire healthcare system in this country.”
Project 2025, a conservative set of policy proposals to reshape the federal government if former president Donald Trump wins November’s presidential election, includes a call to make Medicare Advantage “the default enrollment option” for Medicare.
Medicare Advantage plans were initially added to Medicare based on claims that they would provide savings for the federal government.
However, in a March 2022 report to Congress, the Medicare Payment Advisory Commission noted that “the many iterations of full-risk contracting with private plans have never yielded aggregate savings for the Medicare program. Throughout the history of Medicare managed care, the program has paid more – sometimes much more – than it would have paid for beneficiaries” otherwise.
Healthcare activists, patients and their families have claimed that the quality of Medicare Advantage plans were poor when they needed them most.
“They’re taking in more money and providing less care. That’s the formula. That’s how you make profit,” said Megan Essaheb, director of federal affairs at People’s Action, a progressive advocacy group. “As Medicare Advantage takes over the market and traps people in it, then they’re able to worsen their care.”
Some beneficiaries say they were enticed to enroll in a Medicare Advantage plan due to cheap premiums. Carly Morton of Beaver, Pennsylvania, switched through UnitedHealthcare for the additional benefits and cheap premiums. She was not able to work due to a disability.
“It was a disaster that took a really huge toll on me,” said Morton, who launched a public campaign for UnitedHealthcare to cover a lifesaving surgery to treat her rare vascular condition, neurogenic median arcuate ligament syndrome.
“Not getting the surgery would mean either dying or being very, very sick for the rest of my life,” she recalled. “I got really depressed for a while because I thought that was what was going to happen to me.”
Employers have increasingly been enrolling retirees into Medicare Advantage plans to save themselves money, too, with the federal government paying more. More than half of big employers offering retiree health benefits were estimated to do so for at least some patients through Medicare Advantage in 2023, up from 26% in 2017.
•••
Coffey, the former emergency medical technician, does not expect to switch from Medicare Advantage for at least another decade – until she turns 65, and can requalify for traditional Medicare based on age, rather than disability.
In 2022, she decided to start rationing her treatment infusions because insurance still wasn’t covering them, along with several medications.
“The infusions make the difference for me being able to walk around, cook myself a meal, to have a semblance of dignity in life,” Coffey explained. “Spreading them out takes away that dignity. It makes it difficult to walk to the bathroom. It causes a progressive decline.
“I don’t want to die. If I can’t access my medications and treatments, if I can’t stay on top of everything, I decline and I’m not ready for that.”
In 2023, Coffey said UnitedHealthcare – her Medicare Advantage provider – reached out to her after she went public with her story. But she has still found herself pushing for insurance to cover her treatments, seeking prior authorization for care and going through appeals over denials.
According to Coffey, she has had prior authorizations accepted by UnitedHealthcare only for the insurer to not follow through with paying for the care, forcing her to regularly spend hours on the phone speaking with customer service representatives, or on hold, trying to resolve the issues.
“It’s ridiculous and disgusting that an insurance company has the power to tell my doctor: ‘No, you can’t give that patient that, no, you can’t have that drug that might help you live,’” she said. “It’s disgusting that we allow it, and insurance companies do nothing to increase positive outcomes in healthcare. Nothing. All they are is a middleman who gets to make a shit ton of money off of us.”
Medicare Advantage “works well until it doesn’t”, reflected Gloria Bent, whose husband, Gary, died last March. “And when it begins to not work well is when you most need it, when you are in a medical crisis and need advanced care.
“These companies, as I understand it, are given a certain amount of money for every client they cover who is on Medicare. What they don’t spend of that is their profit.”
• This article was amended on 5 June 2024. Due to an editing error, an earlier version incorrectly said that most Americans will pay $679 a month just for hospital and medical coverage. This has been removed.
