As Crohn’s Patient switches insurance, the denials keep piling up
Katie
State: New Hampshire
Congressional District: NH02
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Diseases
Gastrointestinal Disease, Mental Health
Issues and Challenges
Katie has encountered: Access to Medicine, Prior Authorization
My Story
During the dark days of the pandemic, I turned to social media to try and find an online community to connect with. I created my instagram handle, Badass with a Bad Ass, to help form my own community, and later on my own business. After years of being scared to take the risk to fully work for myself due to changing insurance plans, my fears turned unfortunately turned into reality quickly after taking the leap.
I was diagnosed with Crohn’s Disease when I was 10 years old, which is now 20 years ago. Back in 2019 I developed perianal Crohn’s, which resulted in three fistulas and a horseshoe shaped abscess around my spine. My instagram handle is an ode and play on this new chapter of my CD (Crohn’s Disease).
With the development of this community, I saw just how much the connection with each other not only helped us during hard times, like a pandemic. But it was also necessary for many of us to find out more on our disease, or for advocacy help and resources. I continued to pour my heart out into connecting with fellow baddies (as I fondly refer to anyone in the chronic illness community) and provide advocacy help where possible, and raise awareness through my social media posts on my own experiences. All while working my full time corporate jobs, and balancing my own CD.
Realizing that something had to give, especially since my corporate job was becoming more and more of a toxic environment due to my accommodations being honored, but not socially accepted on the team. I quit my job to take on full time patient advocacy with Badass with a Bad Ass.
Why is changing insurance plans such a fear when living with chronic illness? Being denied current treatments that are working is the main reason, but for me it was also the amount of medical admin I knew it would create for myself. Once we switch insurance plans we have to start the prior authorization process for our treatments—even if we have already been on them for a long time, and I dreaded the process entirely.
I had been on Skyrizi for close to 2 years at the time of me switching insurance plans in September 2024. I was staying with Blue Cross Blue Shield, the only thing changing was my prescriptions benefits manager. I originally had CVS Caremark, and now it was Optum RX, who then moved my PAs (prior authorizations) to RX Benefits to handle.
When I went to order my first dose on the new plan, I was told there were no records of me ever being on the medication, and that I would need to take the starter dose if I wanted to take it at all. My GI doctor had already sent over all of my required records to RX Benefits, and had already filed 5 appeals by the time when I got this message. The fight continued through my specialty pharmacy team at my doctor’s office, but it was not won. I ended up having to turn to the pharmaceutical company to get an emergency dose of medication, and to then have them fill my prescriptions going forward.
During this, my CD was starting to flare in symptoms and my GI decided to add in Rinvoq to my treatment plan. My insurance, and PBM (prescription benefits manager) denied it almost instantly. The reason: there was not enough evidence in my medical records that I had CD. I was shattered at this point and took it upon myself to call RX Benefits. 3 hours of my own phone calls and many tears later, I got them to finally read my records and therefore approve my Rinvoq.
My self esteem took a hit during this process, I had just wanted to follow my dream of being able to work for myself and help other chronic illness baddies. But instead I kept having to manage denial after denial, from changing insurance plans, and listen to these corporations determine my eligibility for my treatments. All because they COULD say no. Why do I as the patient get to suffer because I wanted to make a career change? It shouldn’t be like this.
My Motivation and Inspiration
I keep going because I want to continue educating others on IBD, and be able to share my story to influence changes in the medical system. My main focus at the moment is helping others through their PBM appeals, and helping navigate the work accommodation process.
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