Cured… just kidding!
I clearly remember the GI’s voice when she said, “Cure” while discussing my upcoming surgery. I remember the weight that lifted from my chest. I pictured myself running after my toddler in the park without complication. I can still feel the smile on my face and the squeeze of my mother’s hand. The GI continued, “You will never ever have to take medication again. You can eat whatever you want.” Cured. I would be cured of IBD. Pain free for the rest of my days. My mommy life was about to be completely changed and revamped. I was excited for surgery. I was excited for my new life.
Well, fast forward 6 years and I’m waiting for Remicade to leave my system so that I can begin Stelara. Oh, you didn’t get the memo? A total colectomy, removal of your colon, IS NOT A CURE FOR INFLAMMATORY BOWEL DISEASE! It’s a form of treatment, actually. And my personal treatment plan should have included a co-therapy immediately of some sort of biologic. Unfortunately, I didn’t realize that this should have been the plan. HOWEVER, I did eventually realize it, and started Remicade about 4 years ago. But biologic therapy is not a guarantee of remission. And after a while, Remicade stopped working for me. So the team came up with a plan to change my treatment plan. Sadly, I live in the United States and insurance companies are allowed to dictate to my doctors how they treat my condition. I have once again fallen victim to the ridiculous, Step Therapy, rule.
What is Step Therapy?
Step Therapy is a protection for insurers that force the patient to “fail” off of a certain mediation before moving on to the next medication. They also may force the patient to start with certain medications first that may be less affective for that particular patient, but are often the cheaper option for insurers. The idea sounds incredibly frustrating. Being forced into the protocol is physically & emotionally draining for the patient and their family. Although I live in California that has patient protections with the appeal process and emergency injunctions, I am still a patient who is considered, “cured” of her IBD. So trying to get approval for treatment is already a fight. And proving that although my levels for Remicade are not completely failing, I am not functioning at full capacity while on this medication. It’s not working like it use to. And it’s clear to my child and those who love me.
When I began this post, I was 44 days post Remicade infusion. I went from having an infusion every 4 weeks, with drop off at 3.5weeks, to nothing at all. My body began having a war with itself. Literally, every single autoimmune disease I have has bloomed over the past week. Like a reminder on why I need to continue treatment and stop playing. But I had to wait. Not because my GI wants me to, but because the insurance company apparently knows better. It’s absolutely ridiculous to think that I have to struggle to get through my everyday mommy duties because this country is in the business of investing in corporations and not it’s citizens.
It was 60 days before I began my new treatment. By the time I had the loading dose of Stelara, my body was on the verge of shutting down. I am 40 days post treatment and my body has slowly begun to heal. Taking the minor inflammation problems first and moving toward the big problems. Had I been allowed to go forward with my doctor’s prescribed course of action, I might have been saved physical, emotional and mental trauma. I might have been able to parent better and more efficiently. My quality of life would have improved instead of spiraling. No one should have to scrap the bottom of the barrel before they have a chance to get better.
What Can You Do?
Join me in supporting H.R. 2077: Restoring the Patient’s Voice Act. Both sponsors of the bill have won their re-elections bids, Rep. Raul Ruiz & Brad Wenstrub. Contact their offices asking what the next steps are for H.R. 2077 and how you can help get it to committee.