Sally Nix was furious when her health insurance company refused to pay for the infusions she needs to ease her chronic pain and fatigue.<\/p>\n

Nix has struggled with a combination of autoimmune diseases since 2011. Brain and spinal surgeries didn\u2019t ease her symptoms. Nothing worked, she said, until she started intravenous immunoglobulin infusions<\/a> late last year. Commonly called IVIG, the treatment bolsters her compromised immune system with healthy antibodies from other people\u2019s blood plasma.<\/p>\n

\u201cIVIG turned out to be my great hope,\u201d she said.<\/p>\n

That\u2019s why, when Nix\u2019s health insurer started denying payment for the treatment, she turned to Facebook and Instagram to vent her outrage.<\/p>\n

\u201cI was raising Cain about it,\u201d said Nix, 53, of Statesville, North Carolina, who said she was forced to pause treatment because she couldn\u2019t afford to pay more than $13,000 out of pocket every four weeks. \u201cThere are times when you simply must call out wrongdoings,\u201d she wrote on Instagram. \u201cThis is one of those times.\u201d<\/p>\n

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<\/a>.<\/p>\n

That\u2019s why desperate patients like Nix \u2014 and even some physicians \u2014 say they have turned to publicly shaming insurance companies on social media to get tests, drugs, and treatments approved.<\/p>\n

\u201cUnfortunately, this has become a routine practice for us to resort to if we don\u2019t get any headway,\u201d said Shehzad Saeed, a pediatric gastroenterologist at Dayton\u2019s Children\u2019s Hospital in Ohio. In March, he tweeted a photo of an oozing skin rash<\/a>, blaming Anthem for denying the biologic treatment his patient needed to ease her Crohn\u2019s disease symptoms.<\/p>\n

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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<\/a>, Zoey, had been denied prior authorization for a $225 pill she needs to take twice a day to shrink a large brain tumor. \u201cThis should not be how it\u2019s done,\u201d Stallman said.<\/p>\n
The federal government has proposed ways to reform prior authorization<\/a> 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<\/a> wouldn\u2019t benefit from the changes.<\/p>\n
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\u2019s Health Insurance Plans, did not respond to a request for comment.<\/p>\n
But some patient advocates and health policy experts question whether insurers are using prior authorization as \u201ca possible loophole\u201d 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.<\/p>\n
\u201cThey take in premiums and don\u2019t pay claims. That\u2019s how they make money,\u201d 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<\/a>. \u201cThey just delay and delay and delay until you die. And you\u2019re absolutely helpless as a patient.\u201d<\/p>\n
But there\u2019s reason to hope things may get marginally better. Some major insurers are voluntarily revamping their prior authorization rules<\/a> to ease preapproval mandates for doctors and patients. And many states are passing laws<\/a> to rein in the use of prior authorization.<\/p>\n
\u201cNobody is saying we should get rid of it entirely,\u201d said Todd Askew, senior vice president for advocacy at the American Medical Association, in advance of the group\u2019s annual meeting in June<\/a>. \u201cBut it needs to be right-sized, it needs to be simplified, it needs to be less friction between the patient and accessing their benefits.\u201d<\/p>\n
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 \u201cNational Consumer Rage Survey,\u201d conducted by Customer Care Measurement & Consulting in collaboration with Arizona State University.<\/p>\n
Some research suggests<\/a> 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.<\/p>\n
\u201cIt\u2019s not even a joke. The fact that that\u2019s how we\u2019re trying to get these medications is just sad,\u201d said Brad Constant, an inflammatory bowel disease specialist who has published research on prior authorization. His work found<\/a> that prior authorizations are associated with an increased likelihood that children with inflammatory bowel disease will be hospitalized.<\/p>\n
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\u2019s patient needed was approved.<\/p>\n
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\u2019t reverse the denial for the drug Zoey needed.<\/p>\n
Bret Rumbeck, a spokesperson for the insurer, said Zoey\u2019s medication was approved on July 14 after the company consulted an outside specialist and obtained more information from Zoey\u2019s doctor.<\/p>\n
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. \u201cThe power of the social media has been huge,\u201d she said.<\/p>\n
Sally Nix lies on the couch with her service dog, Jon Snow, at home in Statesville, North Carolina.(Logan Cyrus for KFF Health News)<\/span><\/figcaption><\/figure>\n
Nix had been insured by Blue Cross Blue Shield of Illinois through her husband\u2019s employer for almost two decades. Dave Van de Walle, a spokesperson for the company, did not specifically address Nix\u2019s 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.<\/p>\n
Nix said an \u201cescalation specialist\u201d from the insurance company reached out after she posted her complaints on social media, but the specialist couldn\u2019t help.<\/p>\n
Then, in July, after KFF Health News contacted Blue Cross Blue Shield of Illinois, Nix logged in to the insurer\u2019s online portal and found that $36,000 of her outstanding claims had been marked \u201cpaid.\u201d 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.<\/p>\n
\u201cI\u2019m thrilled,\u201d she said. But \u201cit just should never have happened this way.\u201d<\/p>\n
Do you have an experience with prior authorization you\u2019d like to share? <\/em>Click here<\/em><\/a> to tell your story.<\/em><\/p>\n
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