Parkinson’s is a movement disorder that does not have a one-size-fits-all treatment plan. Each patient’s symptoms differ, and it is crucial to find the most effective medications to manage them. It requires trial and error, but finding the best protocol creates a sense of empowerment in an otherwise powerless situation. Which is why an insurance provider requiring a medication change can be devastating.
There is a need for cost-saving measures, and insurance companies utilize Step Therapy or Fail First to control rising costs, especially prescription medications. According to the American Hospital Association, Step Therapy “requires patients to try and fail certain treatments — generally less expensive — before the insurer will authorize more costly treatments, even if it is against expert medical opinion.”
While these measures can control costs, they can also delay treatment. They are both a benefit and a detriment. As patients, we can share our experiences and provide insights to encourage reform and improve the process. This is my story…
Six years ago, my Movement Disorder Specialist (MDS) added a standard dopamine replacement drug to my treatment plan. Unfortunately, it did not effectively manage my symptoms. I experienced adverse side effects of dyskinesia (uncontrolled movements and longer “off” times. My doctor suggested Rytary, a dopamine replacement but an extended-release formula that lasts longer. She submitted the new prescription and the paperwork supporting that my first medication “failed” and Rytary was approved.
I was doing well – until life threw some curveballs, and my insurance provider changed. Suddenly, I was reading a letter explaining that my Rytary was denied, and I was required to try a less expensive drug on their approved formulary list. The new provider implemented Step Therapy. My doctor filed the paperwork necessary for Rytary, and I tried a less expensive option from the medication list that was a variation of the same medication I took six years ago. I hoped for better results, but they were worse.
I met with my MDS, and we discussed my symptoms:
- My dyskinesia (involuntary movements) had been mild, primarily my curling toes and dancing feet, but now my whole body was affected.
- I suffered panic attacks triggered by intense inner tremors throughout the night.
- My “off-times” were more frequent and pronounced, with Bradykinesia and rigidity noticeably affecting my movement.
My MDS filed an appeal based on the side effects, and I contacted the insurance provider, which started the re-authorization process. However, my Rytary was denied again, and I was required to try another drug on the list.
Changing medications is physically and mentally demanding. I decided to research “discount” plans for Rytary, but they were unsustainable. I was stuck; this was my new normal until life intervened again and returned me to the original insurance provider. They had my history and used it.
I am back on Rytary and doing better, but why did this happen? What went wrong?
The disconnect was in the process. My medical history indicated that I had already met the “step” requirements for Rytary, and I tried a less expensive option that “failed” again. That should have been enough. Overall, there were (2) authorizations submitted by my doctor, (6) phone calls, and several emails by me without any resolution. It was a delay in my treatment and a time constraint on my overburdened healthcare team.
This was one story, and the takeaway is about the patient community. There are 8.5 million people with Parkinson’s, which means 8.5 million stories to share, to amplify, and to make a difference.
