Bill aims to minimize treatment delays for North Dakota patients

The first thing that came to people’s minds about Shanna was her smile. It was warm, inviting and just the right amount of mischievous. 

Her family didn’t think much of her fall in September; maybe she missed a step off the deck. She had a headache but nothing so bad that it needed medical treatment.

That changed on Sept. 19 when Shanna was life-flighted from Carrington to Fargo with stroke symptoms. After imaging, a neurosurgeon performed an emergency craniotomy, removing part of a tumor applying pressure to the brain. They saw three more inoperable spots. Initial reports determined it was likely lymphoma, but her care team was optimistic. 

She was a healthy 40-year-old mother, and lymphoma is treatable. I finished my own cancer treatment a year prior. It was breast cancer spread to lymph nodes, so not the same certainly, but I became fiercely protective of my cousin. I was ready to be involved however she needed me to be.

We lost my cousin Shanna Barone on Feb. 6, less than five months after the first sign of trouble. It was grueling and heartbreaking and perhaps there was nothing that could have been done to save her life, but dealing with the insurance company’s prior authorization requirements certainly cost us time in a process where – aside from cancer — time was perhaps our greatest adversary.

Prior authorization is a practice in which physicians must obtain approval from insurers before prescribing medication or moving forward with treatment for their patients. Insurers use this, in part, to contain costs. Physicians report the process can lead to significant delays in care, contributing to negative outcomes in patients, including abandoned treatment. The process was once used sparingly to determine whether costly medical procedures or medications were needed but now providers often must get approval to prescribe even the most routine medications and procedures. 

This is why I have testified in support of North Dakota Senate Bill 2280, which will place limits on the amount of time insurers can take to make prior authorization decisions. Such limits could have curtailed at least some of the delays faced by Shanna. 

Her team of oncologists submitted prior authorization requests for aggressive chemotherapy and a PET scan upon admittance. She didn’t get approval and receive those services until Oct. 3 – an 11-day wait. The PET scan determined a mass in her abdomen, so a prior authorization request was sent for another chemotherapy regimen that would address that as well. She wasn’t approved until Oct. 11 – eight days.

Her oncologists remained vigilant and switched the plan on Nov. 18. They wanted a better response, so they switched to R-ICE, a combination of four chemotherapy drugs given over several days. They would follow with CAR-T cell therapy, a process that usually takes between three and four weeks to complete.

On Jan. 2, Shanna’s oncologists submitted the prior authorization request for CAR-T because they knew she would need it sooner than later. Her symptoms increased daily. She lost vision in her left eye, then movement and feeling on that side, then her speech. Her skull skin was so tight around the growing tumor it was shiny. 

Radiation began then also to buy time waiting for approval. By Jan. 5, she was admitted to the hospital and would never leave. 

On Jan. 10 – two weeks after the initial physician request — Shanna got “soft approval” for CAR-T from the insurance company, but they “couldn’t” sign off by the end of the business day and told us to wait until the next week. Formal approval was received on Jan. 14 and the lab processes were completed by Jan. 29. 

By then, she had declined, so she had to undergo another surgery to place a shunt in her skull to relieve pressure. We were so encouraged by her response — she was responsive and spoke clearly for the first time in weeks. But two days later she declined again. Additional cancer cells had been allowed to grow during the period she waited for approval. 

Shanna passed away Feb. 6, 10 days after her 41st birthday. 

Shanna knew her battle would be hard, but she went into it with fiery determination, an intelligent, compassionate care team and family support.

Her life depended on decisions she didn’t get to make, ones that increased suffering and anxiety in the interim. If a simple set of laws can prevent this situation from happening to another North Dakotan, the decision to pass this bill is an easy one.