Updated December 06, 2024 at 15:05 PM ET
Yolonda Wilson is one of many people who shared painful stories about health insurance gone wrong on social media this week.
Her insurer, UnitedHealthcare, denied coverage for a surgery about two days before it was scheduled, back in January. She finally got it approved, in the nick of time, with a lot of unnecessary stress and tears. "I did not know until Wednesday afternoon whether I would be able to have surgery Thursday morning," she told NPR.
Wilson, a professor of Health Care Ethics at Saint Louis University in Missouri, noted that she was telling her personal story, not speaking on behalf of the university.
The shocking, targeted killing of UnitedHealthcare CEO Brian Thompson Wednesday struck a nerve on social media, triggering an outpouring of negative experiences with the tangled health care system in the U.S.
Many people shared searing stories of health care denials from health insurers. One person said his mom's scan to check on her stage IV lung cancer was recently denied. In another post, a dad shared the letter UHC sent him denying a wheelchair for his son with cerebral palsy.
"A lot of people are in deep pain, and maybe didn't have anywhere to put that pain," Wilson says.
Wilson says she's not celebrating that a man was killed, though certainly some people on social media were. She calls that a "dark impulse" that might stem from people's unresolved feelings of hurt and helplessness.
"Health care is deeply personal," Wilson says. "We don't often have ways to kind of talk about our frustrations. And so I think that this became that moment — like, something was struck in this moment."
UnitedHealthcare has not yet responded to a request for comment on Wilson's case, but its parent company, UnitedHealth Group released a statement late Thursday, saying, "We, at UnitedHealth Group, will continue to be there for those who depend upon us for their health care."
UnitedHealthcare is the biggest private health insurer in the U.S., with an outsized market share in both the commercial insurance and Medicare Advantage markets. UnitedHealth Group reported $371.6 billion in revenue last year and faces an antitrust lawsuit to block its $3.3 billion acquisition of a rival home health and hospice service.
Americans generally say they're pretty happy with their health insurance, according to survey data from health policy research organization KFF — unless they're sick. Those with "fair" or "poor" health are nearly twice as likely to be displeased with their insurance compared to those with "good" health.
Health policy research going back decades shows the American health care system is uniquely maddening to deal with.
Pam Herd, a professor of social policy at the University of Michigan who studies administrative burdens involved in accessing government services, says barriers to health care access are especially painful.
"It's one thing to be frustrated at the DMV because you have a ton of paperwork to fill out or you have to spend an hour in line," she says. "It's a whole other thing to face those barriers when they are the difference between whether you're going to get life-saving care or not."
Herd's research shows how barriers in the health care system can affect people's actual health — whether it's calling several times to just get an appointment or trying to find an in-network specialist or fighting to get a procedure covered.
"It's not just time," she says. "It's also these sort of other psychological costs that people experience in those encounters: stress, fear, frustration, anxiety."
She says it's the complexity of the whole U.S. health system and its sky-high costs overwhelms people — health insurance is just one part of that. It's something that comes into relief when Americans visit or live in other countries, she adds.
"We focus a lot, right, on the cost of U.S. health care, generic access, rates of uninsurance — and those things are really, really important, to be clear," she says. "But I think sometimes what slips under the radar is just how difficult, time consuming, frustrating it is for people to navigate our system."
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