FINAL WORD: PRIOR AUTHORIZATION HURTS PATIENTS

Prior authorization hurts patients like me

Robin Mulroney

My story is about what goes wrong when health insurance company bureaucracy prevents patients like me from getting the medical care we need. My hope is that by sharing the nightmare I have gone through, the Colorado General Assembly will be motivated to act to spare others from having to endure similar care denials.

I was in my late 20s when I was diagnosed with Essential Tremor, a movement disorder more common but less well known than Parkinson’s Disease that causes involuntary, rhythmic shaking in the body and gets progressively worse over time. The shaking began in my hands and over 30 years worsened to affect my face, tongue and vocal chords. I tried every medication I could, every medical device. I switched to weighted utensils so I could feed myself. Nothing worked, and my independence and quality of life were slipping away.

It was a huge leap for me to agree to deep brain stimulation (DBS) surgery. It begins with an MRI under anesthesia to map the brain and is followed by a surgery to implant the leads (wires) into the brain. After a few weeks of healing comes the second surgery, to implant batteries and make small incisions behind the ears to connect the leads to the power source, which acts like a pacemaker to stimulate the brain and hopefully lessen the shaking after some adjustments.

I knew this was going to be a difficult journey – but at age 62 and with plenty of life left, I decided to go through with the procedure. I discussed this with my neurologist and in December 2021 we made a plan. My doctor’s office submitted the required paperwork to my insurance company for approval, a process called “prior authorization.” In January I underwent the first part of the procedure by getting the MRI and having the surgery to implant the leads in my brain. A few days later I suffered a stroke that made me very weak and required that the final surgery be postposed by two weeks.

Days before my second surgery, I received notification from my insurance company that they were denying the final surgery to place and connect

the generators. Even though they had approved the first surgery, they stated the second surgery was “medically unnecessary.” I was aghast and very emotional given the toll the first surgery had taken on me.

My doctor and his staff were stunned. They appealed the denial. It was denied a second time. An appeal was sent to a third party and was denied again. I just fell apart. My doctor requested a peerto-peer review; he gave the insurance company his personal cell phone number to discuss my case. They never contacted him. His staff spent hours on the phone, being transferred from person to person. I also spent hours on hold, with wires in my brain not connected to anything, told by the insurance company that they would not authorize a surgery for “just a twitch,” and I would be responsible for paying for any additional claims they received related to this procedure.

The day before the second surgery, my doctor’s scheduler spent the entire business day on the phone with the insurance company and my doctor asked the hospital to keep an operating room open for me just in case. They were doing everything they could to follow the mind-boggling health plan rules and get me the very best care possible. It was after business hours and still I waited to hear if I would be undergoing surgery or continuing to plead my case.

At this point I felt like I had done something wrong. It was as if I were a prisoner on death row waiting for clemency. Finally, at 7:30 p.m. the night before the surgery, the insurance company finally granted approval on exception, still insisting it was not medical necessary.

I am grateful that the second surgery was successful and after two calibrations I am seeing results. I celebrate the small but significant victories that others take for granted: I can eat soup using a bowl and spoon instead of drinking it out of a cup; I can eat with a fork and not have the food fall off; I can brush my teeth without jabbing my face or gums; the list goes on.

My experience was stressful and, in some ways, humiliating, yet I am quite certain that it is common and more people are out there suffering like I did. This should not be tolerated. I am choosing to move forward to heal and share my story so we can change things. The Colorado legislature can make a difference by voting “yes” on a Senate Bill 22-078, which will lessen the burden of prior authorization on patients like me. ■ Our work continues

This article was written in April 2022 as Robin was preparing to testify in support of SB22-078. Unfortunately, time ran out on the session before this bill could pass. CMS will continue to work to reform prior authorization as we know Robin's story is not unique. If you know of a patient who has had a similar experience, please contact

amy_goodman@cms.org to add to our arsenal for next session. ■

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