When KFF Health News published an article in August<\/a> about the \u201cprior authorization hell\u201d Sally Nix said she went through to secure approval from her insurance company for the expensive monthly infusions she needs, we thought her story had a happy ending.<\/p>\n

That\u2019s because, after KFF Health News sent questions to Nix\u2019s insurance company, Blue Cross Blue Shield of Illinois, it retroactively approved $36,000 worth of treatments she thought she owed. Even better, she also learned she would qualify for the infusions moving forward.<\/p>\n

Good news all around \u2014 except it didn\u2019t last for long. After all, this is the U.S. health care system, where even patients with good insurance aren\u2019t guaranteed affordable care.<\/p>\n

To recap: For more than a decade, Nix has suffered from autoimmune diseases, chronic pain, and fatigue, as well as a condition called trigeminal neuralgia, which is marked by bouts of electric shock-like pain that\u2019s so intense it\u2019s commonly known as the \u201c suicide disease<\/a>.\u201d<\/p>\n

\u201cIt is a pain that sends me to my knees,\u201d Nix said in October. \u201cMy entire family\u2019s life is controlled by the betrayal of my body. We haven\u2019t lived normally in 10 years.\u201d<\/p>\n

Sally Nix said she went through \u201cprior authorization hell\u201d to secure approval from her insurance company for the expensive monthly infusions she needs to manage a pain disorder. So, it felt like whiplash when she learned the approval was being withheld again. In September, she called out the insurer\u2019s tactics in a Change.org campaign that has garnered more than 21,000 signatures.(Logan Cyrus for KFF Health News)<\/span><\/figcaption><\/figure>\n

Late in 2022, Nix started receiving intravenous immunoglobulin infusions to treat her diseases. She started walking two miles a day with her service dog. She could picture herself celebrating, free from pain, at her daughter\u2019s summer 2024 wedding.<\/p>\n

\u201cI was so hopeful,\u201d she said.<\/p>\n

But a few months after starting those infusions, she found out that her insurance company wouldn\u2019t cover their cost anymore. That\u2019s when she started \u201craising Cain about it\u201d on Instagram and Facebook.<\/p>\n

You probably know someone like Sally Nix \u2014 someone with a chronic or life-threatening illness whose doctor says they need a drug, procedure, or scan, and whose insurance company has replied: No.<\/p>\n

Prior authorization was conceived decades ago to rein in health care costs by eliminating duplicative and ineffective treatment. Not only does overtreatment waste billions of dollars<\/a> every year, but doctors acknowledge<\/a> it also potentially harms patients.<\/p>\n

However, critics worry that prior authorization has now become a way for health insurance companies to save money, sometimes at the expense of patients\u2019 lives<\/a>. KFF Health News has heard from hundreds of people in the past year relating their prior authorization horror stories.<\/p>\n

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When we first met Nix, she was battling her insurance company to regain authorization for her infusions. She\u2019d been forced to pause her treatments, unable to afford $13,000 out-of-pocket for each infusion.<\/p>\n
Finally, it seemed like months of her hard work had paid off. In July, Nix was told by staff at both her doctor\u2019s office and her hospital that Blue Cross Blue Shield of Illinois would allow her to restart treatment. Her balance was marked \u201cpaid\u201d and disappeared from the insurer\u2019s online portal.<\/p>\n
But the day after the KFF Health News story was published, Nix said, she learned the message had changed. After restarting treatment, she received a letter from the insurer saying her diagnoses didn\u2019t actually qualify her for the infusions. It felt like health insurance whiplash.<\/p>\n
\u201cThey\u2019re robbing me of my life,\u201d she said. \u201cThey\u2019re robbing me of so much, all because of profit.\u201d<\/p>\n
Dave Van de Walle, a spokesperson for Blue Cross Blue Shield of Illinois, said the company would not discuss individual patients\u2019 cases.<\/p>\n
\u201cPrior authorization is often a requirement for certain treatments,\u201d Van de Walle said in a written statement, \u201cand BCBSIL administers benefits according to medical policy and the employer\u2019s benefit.\u201d<\/p>\n
But Nix is a Southern woman of the \u201cSteel Magnolia\u201d variety. In other words, she\u2019s not going down without a fight.<\/p>\n
In September, she called out her insurance company\u2019s tactics in a Change.org campaign<\/a> that has garnered more than 21,000 signatures. She has also filed complaints against her insurance company with the U.S. Department of Health and Human Services, U.S. Department of Labor, Illinois Department of Insurance, and Illinois attorney general.<\/p>\n
Even so, Nix said, she feels defeated.<\/p>\n
Not only is she still waiting for prior authorization to restart her immunoglobulin infusions, but her insurance company recently required Nix to secure preapproval for another treatment \u2014 routine numbing injections she has received for nearly 10 years to treat the nerve pain caused by trigeminal neuralgia.<\/p>\n
\u201cIt is reprehensible what they\u2019re doing. But they\u2019re not only doing it to me,\u201d said Nix, who is now reluctantly taking prescription opioids to ease her pain. \u201cThey\u2019re doing it to other patients. And it\u2019s got to stop.\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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