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Woman Petitions Health Insurer After Company Approves Then Rejects Her Infusions

When 窪蹋勛圖厙 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.

Thats because, after 窪蹋勛圖厙 News sent questions to Nixs 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 didnt last for long. After all, this is the U.S. health care system, where even patients with good insurance arent guaranteed affordable care.

To recap: For more than a decade, Nix, of Statesville, North Carolina, 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 thats so intense its commonly known as the .

It is a pain that sends me to my knees, Nix said in October. My entire familys life is controlled by the betrayal of my body. We havent lived normally in 10 years.

A photograph of Sally Nix sitting beside her service dog in her home.
Sally Nix said she went through prior authorization hell 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 insurers tactics in a Change.org campaign that has garnered more than 21,000 signatures. (Logan Cyrus for 窪蹋勛圖厙 News)

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 daughters summer 2024 wedding.

I was so hopeful, she said.

But a few months after starting those infusions, she found out that her insurance company wouldnt cover their cost anymore. Thats 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 every year, but 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. 窪蹋勛圖厙 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. Shed 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 doctors 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 insurers online portal.

But the day after the 窪蹋勛圖厙 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 didnt actually qualify her for the infusions. It felt like health insurance whiplash.

Theyre robbing me of my life, she said. Theyre 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 employers benefit.

But Nix is a Southern woman of the Steel Magnolia variety. In other words, shes not going down without a fight.

In September, she called out her insurance companys tactics in 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.

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 theyre doing. But theyre not only doing it to me, said Nix, who is now reluctantly taking prescription opioids to ease her pain. Theyre doing it to other patients. And its got to stop.

Do you have an experience with prior authorization youd like to share? to tell your story.

窪蹋勛圖厙 News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFFan independent source of health policy research, polling, and journalism. Learn more about .

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