Sally Nix was furious when her health insurance company refused to pay for the injections she needed to relieve her chronic pain and fatigue.
Nix has suffered from a range of autoimmune diseases since 2011. Brain and spine surgeries did not relieve her symptoms. It didn’t work out, she said, until she started injecting immune globulin intravenously late last year. The treatment, known as IVIG, boosts her damaged immune system with healthy antibodies from other people’s blood plasma.
“IVIG turned out to be my great hope,” she said.
Which is why, when Knicks’ health insurance company began refusing to pay for treatment, she turned to Facebook and Instagram to vent her anger.
“I teased Cain about it,” said Nix, 53, of Statesville, North Carolina, who said she had to pause treatment because she was unable to pay more than $13,000 out of pocket every four weeks. “There are times when you simply have to lash out for wrongdoing,” she wrote on Instagram. “This is one of those times.”
Pre-authorization is a common cost-cutting tool used by health insurers that requires patients and physicians to obtain consent before moving forward with many prescribed tests, procedures, and medications. Insurance companies say the process helps them control costs by preventing medically unnecessary care. But patients say frustrating and often time-consuming rules create hurdles that delay or prevent access to the treatments they need. Doctors say that in some cases, delay and denial equal death.
That’s why desperate patients like Nix — and even some doctors — say they’ve turned to publicly shaming insurance companies on social media to get approval for tests, drugs, and treatments.
“Unfortunately, this has become a routine practice for us to turn to if we’re not making any progress,” said Shehzad Saeed, MD, a pediatric gastroenterologist at Dayton Children’s Hospital in Ohio. In March, he tweeted a photo of an oozing rash, blaming Anthem for denying him the biologic therapy his patient needed to relieve her Crohn’s disease symptoms.
In July, Eunice Stallman, a psychiatrist based in Idaho, joined Company X, formerly known as Twitter, for the first time to share how her 9-month-old daughter, Zoe, was denied prior authorization to purchase a $225 pill she needed. to ingest it. Twice a day to shrink a large brain tumor. “It shouldn’t be done that way,” Stallman said.
The federal government has proposed ways to reform pre-authorization that would require insurers to provide more transparency about denials and speed up response times. If these federal changes are finalized, they will be implemented in 2026. But until then, the rules will only apply to certain categories of health insurance, including Medicare plans, Medicare benefits, and Medicaid plans, but not sponsored health plans. Employer. This means that nearly half of Americans will not benefit from the changes.
The Patient Protection and Affordable Care Act of 2010 prohibits health insurance plans from denying or canceling coverage to patients because of their pre-existing conditions. AHIP, an industry trade group formerly called American Health Insurance Plans, did not respond to a request for comment.
But some patient advocates and health policy experts question whether insurance companies are using pre-authorization as a “potential loophole” to the ban, as a way to deny healthcare to patients who pay the highest health care costs, explained Kai Bestaina, vice president of the KFF Foundation and the World Health Organization. . Co-Director of the Patient and Consumer Protection Program.
“They take premiums and don’t pay claims. That’s how they make money,” said Linda Pino, a healthcare consultant and retired physician from Kentucky who worked as a medical reviewer for Humana in the 1980s and later became a whistleblower. “They delay and delay and delay until you die. And you are completely helpless as a patient.”
But there is reason to hope that things will improve slightly. Some major insurers are voluntarily revamping pre-authorization rules to make pre-approval easier for doctors and patients. Many states pass laws to restrict the use of prior authorization.
“No one 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 group’s annual meeting in June. “But it has to be sized appropriately, it has to be streamlined, and there has to be less friction between the patient and getting the benefits.”
Customers are increasingly using social media to voice their grievances across all industries, and companies are paying attention. Nearly two-thirds of complainants report receiving some kind of response to their online posts, according to the 2023 National Consumer Anger Survey, conducted by Customer Care Measurement & Consulting in collaboration with Arizona State University.
Some research suggests that companies are better off dealing with unhappy customers offline, rather than responding to public social media posts. But many patients and doctors believe online venting is an effective strategy, though it remains unclear how well this tactic reverses prior authorization denial.
“It’s no joke. The fact that we’re trying to get these drugs in this way is sad,” said Brad Constant, a specialist in inflammatory bowel diseases who published the paper with prior authorization. His work found that prior authorizations are associated with an increased likelihood of hospitalization for children with IBD.
The day after the rash photo was posted, Saeed said, the case was flagged for peer-to-peer review, meaning the pre-authorization denial would get a closer look by someone at the insurance company with a medical background. Eventually, the biological drug a happy patient needed was approved.
Stallman, who is insured through her employer, said she and her husband are willing to pay out of pocket if Blue Cross, Idaho, doesn’t back down on its refusal to get Zoe the medication she needs.
Brett Rumbek, a spokesperson for the insurance company, said Zoe’s drug was approved on July 14 after the company consulted an outside specialist and obtained more information from Zoe’s doctor.
Stallman only posted details of the ordeal online after the drug was approved by the insurance company, in part, she said, to prevent them from refusing treatment again when the 90-day insurance review is due in October. “The power of social media has been enormous,” she said.
Nix was insured by Blue Cross Blue Shield of Illinois through her husband’s employer for nearly two decades. Dave Van de Wael, a spokesman for the company, did not specifically address the Nix case. But in a prepared statement, the company said it provides administrative services to many large employers who design and fund their own health insurance plans.
Nix said an “escalation specialist” from the insurance company reached out to them after she posted her complaints on social media, but the specialist was unable to help.
Then, in July, after KFF Health News contacted Blue Cross Blue Shield of Illinois, Nix logged into the insurance company’s online portal and found that $36,000 of her outstanding claims had been classified as “paid.” No one from the company contacted her to explain the reason or what had changed. She also said the hospital told her the insurance company would no longer require her to obtain prior authorization before her injections, which she resumed in late July.
“I feel so happy,” she said. But “it should never have happened this way.”
This article is reprinted from khn.org Courtesy of the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization not affiliated with Kaiser Permanente.