The treacherous terrain of health and prescription drug insurance

Navigating Parkinson's is hard enough without having to fight for drug coverage

Jamie Askari avatar

by Jamie Askari |

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I love doing one kind act for a stranger each day. I have done this for as long as I can remember. It was quite a challenge during the COVID-19 pandemic, though, since I didn’t often encounter strangers in my living room.

These small acts of kindness usually take place in the checkout line at the store. If I notice that a shopper behind me has a small load, I’ll always insist they go ahead of me. Or I’ll make pleasant conversation with the cashier to brighten their day.

That being said, I am genuinely struggling when it comes to being patient and kind (as well as looking for the bright side) when dealing with things like medication approvals and refills, medical insurance claims, and the daily complications that life presents to me these days.

For those of you who are new to my column, my husband, Arman, was diagnosed in 2009 with early-onset Parkinson’s disease at the age of 38. At the start of 2024, Arman needed to change his health insurance plan because his former plan no longer covered one of his Parkinson’s medications.

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It shouldn’t be this hard

I didn’t realize that a “simple” change of an insurance plan would cause such a flurry — actually more like a blizzard — of epic proportions. On paper, it seemed that the new plan would cover all of his other medications. Guess again! When we submitted a refill request to our local pharmacy, we were notified that all of the medications needed prior authorization. Really?! I was told that the medicines would be covered, and now I need to jump through hoops to get them authorized. This was not starting out well!

A few of the medications Arman uses are long-acting and do not have a generic, less costly alternative. He has been taking these therapies for many years and is tolerating them well. The insurance company stated that he would need to switch to short-acting, generic versions before they’d consider covering the long-acting ones.

I don’t know if they understand the nightmare we’d face if we switched several of his medications at once. What would the new dosages be? How often would he need them? Would there be any negative medication interactions? Would his dyskinesia return because of the inconsistency of the short-acting medicines? We were feeling overwhelmed, lost, and completely out of control.

Unfortunately, for the several representatives I encountered on the phone in the past few weeks, I couldn’t produce even an ounce of kindness or pleasantries during our calls. If one of you happens to be reading this, please accept my apology!

When your life revolves around a chronic illness, you hope and pray that other things in your life will run smoothly. You hope that maybe you’ll catch a break here and there. You hope that if you are kind and patient with the world, it might come back to you in unexpected places.

In the end, we were finally able to get a few of his medications approved. Hallelujah! It took a lot of time, energy, and patience, and I felt a strong sense of accomplishment when we received notification of the approval. We are still waiting on the appeal of one more medicine, and I’m trying to remain calm and composed.

My current life goals include extending patience, kindness, and gratitude to all, especially to the customer service representatives who are just trying to do their jobs. I will continue to seek out ways to bring a smile to strangers and offer grace to myself when navigating through stressful times.

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.


Don Harris avatar

Don Harris

I am sorry to see that unnecessary complications are added to dealing with Parkinson's. Here in Australia it is hard to imagine that US health insurance companies do not cover all necessary medications.
Our system is quite different. Most drugs are heavily government subsidised and, subject to a generous threashold, are further reduced to about $6 per prescription. The price of non government subsidised medications are capped for members of a health fund.

Jamie Askari avatar

Jamie Askari

Hi Don! That is amazing that your medication is so very affordable, unfortunately this is a huge issue in the US. Many patients cannot afford their medications and have to go without. It is refreshing to hear how well your country handles this, I wish it were the same here. Thanks for sharing this information!


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