When KFF Health News published an article in August about the “prior authorization hell” 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.

That’s because, after KFF Health News sent questions to Nix’s 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.

Good news all around — except it didn’t last for long. After all, this is the U.S. health care system, where even patients with good insurance aren’t guaranteed affordable care.

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’s so intense it’s commonly known as the “suicide disease.”

“It is a pain that sends me to my knees,” Nix said in October. “My entire family’s life is controlled by the betrayal of my body. We haven’t lived normally in 10 years.”

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’s summer 2024 wedding.

“I was so hopeful,” she said.

But a few months after starting those infusions, she found out that her insurance company wouldn’t cover their cost anymore. That’s when she started “raising Cain about it” on Instagram and Facebook.

You probably know someone like Sally Nix — 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.

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 every year, but doctors acknowledge it also potentially harms patients.

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

When we first met Nix, she was battling her insurance company to regain authorization for her infusions. She’d been forced to pause her treatments, unable to afford $13,000 out-of-pocket for each infusion.

Finally, it seemed like months of her hard work had paid off. In July, Nix was told by staff at both her doctor’s office and her hospital that Blue Cross Blue Shield of Illinois would allow her to restart treatment. Her balance was marked “paid” and disappeared from the insurer’s online portal.

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’t actually qualify her for the infusions. It felt like health insurance whiplash.

“They’re robbing me of my life,” she said. “They’re robbing me of so much, all because of profit.”

Dave Van de Walle, a spokesperson for Blue Cross Blue Shield of Illinois, said the company would not discuss individual patients’ cases.

“Prior authorization is often a requirement for certain treatments,” Van de Walle said in a written statement, “and BCBSIL administers benefits according to medical policy and the employer’s benefit.”

But Nix is a Southern woman of the “Steel Magnolia” variety. In other words, she’s not going down without a fight.

In September, she called out her insurance company’s tactics in a Change.org campaign 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.

Even so, Nix said, she feels defeated.

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 — routine numbing injections she has received for nearly 10 years to treat the nerve pain caused by trigeminal neuralgia.

“It is reprehensible what they’re doing. But they’re not only doing it to me,” said Nix, who is now reluctantly taking prescription opioids to ease her pain. “They’re doing it to other patients. And it’s got to stop.”

Do you have an experience with prior authorization you’d like to share? Click here to tell your story.

By Lauren Sausser
Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation, which is not affiliated with Kaiser Permanente.