Sally Nix was furious when her health insurance company refused to pay for the infusions she needs to ease her chronic pain and fatigue.

Nix has struggled with a combination of autoimmune diseases since 2011. Brain and spinal surgeries didn’t ease her symptoms. Nothing worked, she said, until she started intravenous immunoglobulin infusions late last year. Commonly called IVIG, the treatment bolsters her compromised immune system with healthy antibodies from other people’s blood plasma.

“IVIG turned out to be my great hope,” she said.

That’s why, when Nix’s health insurer started denying payment for the treatment, she turned to Facebook and Instagram to vent her outrage.

“I was raising Cain about it,” said Nix, 53, of Statesville, North Carolina, who said she was forced to pause treatment because she couldn’t afford to pay more than $13,000 out of pocket every four weeks. “There are times when you simply must call out wrongdoings,” she wrote on Instagram. “This is one of those times.”

Prior authorization is a common cost-cutting tool used by health insurers that requires patients and doctors to secure approval before moving forward with many tests, procedures, and prescription medications. Insurers say the process helps them control costs by preventing medically unnecessary care. But patients say the often time-consuming and frustrating rules create hurdles that delay or deny access to the treatments they need. In some cases, delays and denials equal death, doctors say.

That’s why desperate patients like Nix — and even some physicians — say they have turned to publicly shaming insurance companies on social media to get tests, drugs, and treatments approved.

“Unfortunately, this has become a routine practice for us to resort to if we don’t get any headway,” said Shehzad Saeed, a pediatric gastroenterologist at Dayton’s Children’s Hospital in Ohio. In March, he tweeted a photo of an oozing skin rash, blaming Anthem for denying the biologic treatment his patient needed to ease her Crohn’s disease symptoms.

In July, Eunice Stallman, a psychiatrist based in Idaho, joined X, formerly known as Twitter, for the first time to share how her 9-month-old daughter, Zoey, had been denied prior authorization for a $225 pill she needs to take twice a day to shrink a large brain tumor. “This should not be how it’s done,” Stallman said.

The federal government has proposed ways to reform prior authorization that would require insurance companies to provide more transparency about denials and to speed up their response times. If finalized, those federal changes would be implemented in 2026. But even then, the rules would apply only to some categories of health insurance, including Medicare, Medicare Advantage, and Medicaid plans, but not employer-sponsored health plans. That means roughly half of all Americans wouldn’t benefit from the changes.

The 2010 Patient Protection and Affordable Care Act prohibits health insurance plans from denying or canceling coverage to patients due to their preexisting conditions. AHIP, an industry trade group formerly called America’s Health Insurance Plans, did not respond to a request for comment.

But some patient advocates and health policy experts question whether insurers are using prior authorization as “a possible loophole” to this prohibition, as a way of denying care to patients with the highest health care costs, explained Kaye Pestaina, a KFF vice president and the co-director of its Program on Patient and Consumer Protections.

“They take in premiums and don’t pay claims. That’s how they make money,” said Linda Peeno, a health care consultant and retired Kentucky physician who was employed as a medical reviewer by Humana in the 1980s and later became a whistleblower. “They just delay and delay and delay until you die. And you’re absolutely helpless as a patient.”

But there’s reason to hope things may get marginally better. Some major insurers are voluntarily revamping their prior authorization rules to ease preapproval mandates for doctors and patients. And many states are passing laws to rein in the use of prior authorization.

“Nobody is saying we should get rid of it entirely,” said Todd Askew, senior vice president for advocacy at the American Medical Association, in advance of the group’s annual meeting in June. “But it needs to be right-sized, it needs to be simplified, it needs to be less friction between the patient and accessing their benefits.”

Customers are increasingly using social media to air their complaints across all industries, and companies are paying attention. Nearly two-thirds of complainants reported receiving some sort of response to their online post, according to the 2023 “National Consumer Rage Survey,” conducted by Customer Care Measurement & Consulting in collaboration with Arizona State University.

Some research suggests companies are better off engaging with unhappy customers offline, rather than responding to public social media posts. But many patients and doctors believe venting online is an effective strategy, though it remains unclear how often this tactic works in reversing prior authorization denials.

“It’s not even a joke. The fact that that’s how we’re trying to get these medications is just sad,” said Brad Constant, an inflammatory bowel disease specialist who has published research on prior authorization. His work found that prior authorizations are associated with an increased likelihood that children with inflammatory bowel disease will be hospitalized.

Saeed said the day after he posted the picture of the skin rash, the case was marked for a peer-to-peer review, meaning the prior authorization denial would get a closer look by someone at the insurance company with a medical background. Eventually, the biologic medicine Saeed’s patient needed was approved.

Stallman, who is insured through her employer, said she and her husband were prepared to pay out of pocket if Blue Cross of Idaho didn’t reverse the denial for the drug Zoey needed.

Bret Rumbeck, a spokesperson for the insurer, said Zoey’s medication was approved on July 14 after the company consulted an outside specialist and obtained more information from Zoey’s doctor.

Stallman posted details about the ordeal online only after the insurer approved the drug, in part, she said, to prevent them from denying the treatment again when it comes up for a 90-day insurance review in October. “The power of the social media has been huge,” she said.

Nix had been insured by Blue Cross Blue Shield of Illinois through her husband’s employer for almost two decades. Dave Van de Walle, a spokesperson for the company, did not specifically address Nix’s case. But in a prepared statement, the company said it provides administrative services for many large employers who design and fund their own health insurance plans.

Nix said an “escalation specialist” from the insurance company reached out after she posted her complaints on social media, but the specialist couldn’t help.

Then, in July, after KFF Health News contacted Blue Cross Blue Shield of Illinois, Nix logged in to the insurer’s online portal and found that $36,000 of her outstanding claims had been marked “paid.” No one from the company had contacted her to explain why or what had changed. She also said she was informed by her hospital that the insurer will no longer require her to obtain prior authorization before her infusions, which she restarted in late July.

“I’m thrilled,” she said. But “it just should never have happened this way.”

The post Doctors and Patients Try to Shame Insurers Online to Reverse Prior Authorization Denials appeared first on Medika Life.

CHARLESTON, S.C. — Melanie Gray Miller, a 30-year-old physician, wiped away tears as she described the isolation she felt after losing a beloved patient.

“It was at the end of a night shift, when it seems like bad things always happen,” said Miller, who is training to become a pediatrician.

The infant had been sick for months in the Medical University of South Carolina’s pediatric intensive care unit and the possibility that he might not improve was obvious, Miller recalled during an April meeting with physicians and hospital administrators. But the suddenness of his death still caught her off guard.

“I have family and friends that I talk to about things,” she said. “But no one truly understands.”

Doctors don’t typically take time to grieve at work. But during that recent meeting, Miller and her colleagues opened up about the insomnia, emotional exhaustion, trauma, and burnout they experienced from their time in the pediatric ICU.

“This is not a normal place,” Grant Goodrich, the hospital system’s director of ethics, said to the group, acknowledging an occupational hazard the industry often downplays. “Most people don’t see kids die.”

The recurring conversation, scheduled for early-career doctors coming off monthlong pediatric ICU rotations, is one way the hospital helps staffers cope with stress, according to Alyssa Rheingold, a licensed clinical psychologist who leads its resiliency program.

“Often the focus is to teach somebody how to do yoga and take a bath,” she said. “That’s not at all what well-being is about.”

Burnout in the health care industry is a widespread problem that long predates the covid-19 pandemic, though the chaos introduced by the coronavirus’s spread made things worse, physicians and psychologists said. Health systems across the country are trying to boost morale and keep clinicians from quitting or retiring early, but the stakes are higher than workforce shortages.

Rates of physician suicide, partly fueled by burnout, have been a concern for decades. And while burnout occurs across medical specialties, some studies have shown that primary care doctors, such as pediatricians and family physicians, may run a higher risk.

“Why go into primary care when you can make twice the money doing something with half the stress?” said Daniel Crummett, a retired primary care doctor who lives in North Carolina. “I don’t know why anyone would go into primary care.”

Doctors say they are fed up with demands imposed by hospital administrators and health insurance companies, and they’re concerned about the notoriously grueling shifts assigned to medical residents during the early years of their careers. A long-standing stigma keeps physicians from prioritizing their own mental health, while their jobs require them to routinely grapple with death, grief, and trauma. The culture of medicine encourages them to simply bear it.

“Resiliency is a cringe word for me,” Miller said. “In medicine, we’re just expected to be resilient 24/7. I don’t love that culture.”

And though the pipeline of physicians entering the profession is strong, the ranks of doctors in the U.S. aren’t growing fast enough to meet future demand, according to the American Medical Association. That’s why burnout exacerbates workforce shortages and, if it continues, may limit the ability of some patients to access even basic care. A 2021 report published by the Association of American Medical Colleges projects the U.S. will be short as many as 48,000 primary care physicians by 2034, a higher number than any other single medical specialty.

A survey published last year by The Physicians Foundation, a nonprofit focused on improving health care, found more than half of the 1,501 responding doctors didn’t have positive feelings about the current or future state of the medical profession. More than 20% said they wanted to retire within a year.

Similarly, in a 2022 AMA survey of 11,000 doctors and other medical professionals, more than half reported feeling burned out and indicated they were experiencing a great deal of stress.

Those numbers appear to be even higher in primary care. Even before the pandemic, 70% of primary care providers and 89% of primary care residents reported feelings of burnout.

“Everyone in health care feels overworked,” said Gregg Coodley, a primary care physician in Portland, Oregon, and author of the 2022 book “Patients in Peril: The Demise of Primary Care in America.”

“I’m not saying there aren’t issues for other specialists, too, but in primary care, it’s the worst problem,” he said.

The high level of student debt most medical school graduates carry, combined with salaries more than four times as high as the average, deter many physicians from quitting medicine midcareer. Even primary care doctors, whose salaries are among the lowest of all medical specialties, are paid significantly more than the average American worker. That’s why, instead of leaving the profession in their 30s or 40s, doctors often stay in their jobs but retire early.

“We go into medicine to help people, to take care of people, to do good in the world,” said Crummett, who retired from the Duke University hospital system in 2020 when he turned 65.

Crummett said he would have enjoyed working until he was 70, if not for the bureaucratic burdens of practicing medicine, including needing to get prior authorization from insurance companies before providing care, navigating cumbersome electronic health record platforms, and logging hours of administrative work outside the exam room.

“I enjoyed seeing patients. I really enjoyed my co-workers,” he said. “The administration was certainly a major factor in burnout.”

Jean Antonucci, a primary care doctor in rural Maine who retired from full-time work at 66, said she, too, would have kept working if not for the hassle of dealing with hospital administrators and insurance companies.

Once, Antonucci said, she had to call an insurance company — by landline and cellphone simultaneously, with one phone on each ear — to get prior authorization to conduct a CT scan, while her patient in need of an appendectomy waited in pain. The hospital wouldn’t conduct the scan without insurance approval.

“It was just infuriating,” said Antonucci, who now practices medicine only one day a week. “I could have kept working. I just got tired.”

Providers’ collective exhaustion is a crisis kept hidden by design, said Whitney Marvin, a pediatrician who works in the pediatric ICU at the Medical University of South Carolina. She said hospital culture implicitly teaches doctors to tamp down their emotions and to “keep moving.”

“I’m not supposed to be weak, and I’m not supposed to cry, and I’m not supposed to have all these emotions, because then maybe I’m not good enough at my job,” said Marvin, describing the way doctors have historically thought about their mental health.

This mentality prevents many doctors from seeking the help they need, which can lead to burnout — and much worse. An estimated 300 physicians die by suicide every year, according to the American Foundation for Suicide Prevention. The problem is particularly pronounced among female physicians, who die by suicide at a significantly higher rate than women in other professions.

A March report from Medscape found, of more than 9,000 doctors surveyed, 9% of male physicians and 11% of female physicians said they have had suicidal thoughts. But the problem isn’t new, the report noted. Elevated rates of suicide among physicians have been documented for 150 years.

“Ironically, it’s happening to a group of people who should have the easiest access to mental health care,” said Gary Price, a Connecticut surgeon and president of The Physicians Foundation.

But the reluctance to seek help isn’t unfounded, said Corey Feist, president of the Dr. Lorna Breen Heroes’ Foundation.

“There’s something known in residency as the ‘silent curriculum,’” Feist said in describing an often-unspoken understanding among doctors that seeking mental health treatment could jeopardize their livelihood.

Feist’s sister-in-law, emergency room physician Lorna Breen, died by suicide during the early months of the pandemic. Breen sought inpatient treatment for mental health once, Feist said, but feared that her medical license could be revoked for doing so.

The foundation works to change laws across the country to prohibit medical boards and hospitals from asking doctors invasive mental health questions on employment or license applications.

“These people need to be taken care of by us, because really, no one’s looking out for them,” Feist said.

In Charleston, psychologists are made available to physicians during group meetings like the one Miller attended, as part of the resiliency program.

But fixing the burnout problem also requires a cultural change, especially among older physicians.

“They had it worse and we know that. But it’s still not good,” Miller said. “Until that changes, we’re just going to continue burning out physicians within the first three years of their career.”

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