Sally Nix was enraged when her health insurance company refused to cover the infusions she required to alleviate her chronic pain and fatigue.
Nix has been afflicted with a number of autoimmune diseases since 2011. Her symptoms were not relieved by brain and spinal surgery. Nothing worked for her until she began intravenous immunoglobulin infusions late last year, she claimed. The treatment, known colloquially as IVIG, fortifies her weakened immune system with healthy antibodies derived from other people’s blood plasma.
“IVIG turned out to be my greatest hope,” she explained.
That’s why, when Nix’s health insurer refused to pay for the treatment, she took to social media to express her outrage.
“I was raising Cain about it,” said Nix, 53, of Statesville, North Carolina, who said she had to stop treatment because she couldn’t afford more than $13,000 out of pocket every four weeks. “There are times when you simply must call out wrongdoings,” she said on Instagram. “This is another one of those times.”
Prior authorization is a cost-cutting tool commonly used by health insurers that requires patients and doctors to obtain approval before proceeding with many tests, procedures, and prescription medications. According to insurers, the process helps them control costs by avoiding medically unnecessary care. Patients, on the other hand, claim that the often time-consuming and frustrating rules create roadblocks that delay or deny access to necessary treatments. Doctors say that in some cases, delays and denials equal death.
That’s why desperate patients like Nix — and even some doctors — have taken to publicly shaming insurance companies on social media in order 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,” Shehzad Saeed, a pediatric gastroenterologist at Dayton Children’s Hospital in Ohio, said. In March, he tweeted a photo of an oozing skin rash, accusing Anthem of denying his patient the biologic treatment she required to alleviate her Crohn’s disease symptoms.
Eunice Stallman, an Idaho-based psychiatrist, joined X for the first time in July 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 reforms to prior authorization that would require insurance companies to be more transparent about denials and to respond more quickly. If approved, the federal changes would go into effect in 2026. Even so, the rules would only apply to certain types of health insurance, such as Medicare, Medicare Advantage, and Medicaid plans, and not to employer-sponsored health plans. That means that the changes would not benefit roughly half of all Americans.
The Patient Protection and Affordable Care Act of 2010 prohibits health insurance companies from denying or canceling coverage based on a patient’s preexisting conditions. AHIP, formerly known as America’s Health Insurance Plans, did not respond to a request for comment.
However, some patient advocates and health policy experts question whether insurers are using prior authorization as a “possible loophole” to this prohibition in order to deny care to patients with the highest health-care costs, according to Kaye Pestaina, a KFF vice president and co-director of the organization’s Program on Patient and Consumer Protections.
“They collect premiums but do not pay claims.” “That’s how they make money,” said Linda Peeno, a retired Kentucky physician who worked as a medical reviewer for Humana in the 1980s and later became a whistleblower. “They just keep delaying you until you die.” And as a patient, you’re completely helpless.”
However, there is reason to believe that things will improve slightly. Some major insurers are voluntarily revising their prior authorization policies in order to make preapproval requirements easier for doctors and patients. In addition, many states are enacting legislation to limit the use of prior authorization.
“Nobody is saying we should get rid of it entirely,” Todd Askew, senior vice president for advocacy at the American Medical Association, said ahead of the organization’s annual meeting in June. “But it needs to be right-sized, simplified, and there needs to be less friction between the patient and accessing their benefits.”
Customers in all industries are increasingly using social media to air their grievances, and businesses are taking notice. According to the 2023 “National Consumer Rage Survey,” conducted by Customer Care Measurement & Consulting in collaboration with Arizona State University, nearly two-thirds of complainants received some sort of response to their online post.
According to some research, companies would be better off engaging with dissatisfied customers offline rather than responding to public social media posts. However, many patients and doctors believe that venting online is an effective strategy, though it is unknown how frequently this tactic works in reversing prior authorization denials.
“This isn’t even a joke. “It’s just sad that that’s how we’re trying to get these medications,” said Brad Constant, an inflammatory bowel disease specialist who has published prior authorization research.His research discovered that prior authorizations are associated with an increased likelihood of hospitalization in children with inflammatory bowel disease.
According to Saeed, the case was marked for a peer-to-peer review the day after he posted the picture of the skin rash, which means the prior authorization denial would be looked into further by someone at the insurance company with a medical background. The biologic medicine that Saeed’s patient required was eventually approved.
Stallman, who is covered by her employer, said she and her husband were prepared to pay out of pocket if Blue Cross of Idaho did not reverse the denial for Zoey’s medication.
According to Bret Rumbeck, an insurer spokesperson, Zoey’s medication was approved on July 14 after the company consulted an outside specialist and obtained additional information from Zoey’s doctor.
Stallman revealed the details of her ordeal only after the insurer approved the drug, partly to prevent them from denying it again when it comes up for a 90-day insurance review in October. “The power of social media has been huge,” she said.
For nearly two decades, Nix had been covered by Blue Cross Blue Shield of Illinois through her husband’s employer. A spokesperson for the company, Dave Van de Walle, did not specifically address Nix’s case. However, the company stated in a prepared statement that it provides administrative services to many large employers who design and fund their own health insurance plans.
Nix claimed that a “escalation specialist” from the insurance company contacted her after she posted her complaints on social media, but the specialist was unable to assist her.
After KFF Health News contacted Blue Cross Blue Shield of Illinois, Nix logged into the insurer’s online portal in July and discovered that $36,000 of her outstanding claims had been marked “paid.” Nobody had contacted her from the company to explain why or what had changed. She also stated that her hospital informed her that the insurer will no longer require her to obtain prior authorization prior to her infusions, which she resumed in late July.
“I’m thrilled,” she exclaimed. However, “it should never have happened this way.”