The Price is Right! Or Is It? Parkinson's Meds and Me

I take medications to control certain symptoms of Parkinson’s disease. I consider myself fortunate that there are generic forms of the drugs I take each day, which are Azilect, Requip and Sinemet.

Last night while I could not sleep and wanted something fruitful to do, I looked at how much I spent on Parkinson’s meds last year. I keep monthly records but never totaled all 12 months. Fruitful? Maybe. It was certainly eye opening.

Learning about Parkinson's medications

I knew nothing about Parkinson’s medications when first diagnosed. I read about levodopa, monoamine oxidase-B inhibitors, dopamine agonists, and catechol-O-methyltransferase inhibitors.

I watched online webinars and read information on the websites of several national foundations.

I found local folks taking these meds and talked to them. Some Parkinson’s medications may be regular, controlled release, or extended release. The type of medication and the effect each drug offers throughout the day will vary from person to person.

Communicating with your doctor

Variations occur in part by which medication is prescribed and how well instructions are followed. Your doctor, often a neurologist or movement disorder specialist, will discuss your symptoms and the medication options available to you before deciding which to prescribe.

I think it is very important to communicate well with your doctor. You want to be able to explain how you feel in general, what happens when a medication does not seem effective or as effective as in the past, and whether a drug seems to last until the next dose.

The cost of prescriptions

As for the cost of each prescription, it seems to me that out-of-pocket expenses vary based on such factors as where you live, whether you work or are retired, and are living on social security or such.

Other things to consider are your health insurance coverage, whether the drug is available as a generic, the tier in which it falls, if you have met your deductible and whether you qualify for, and receive, prescription assistance. There may be other factors, but you get the idea – it is complicated!

Now that I know the basics, I listen carefully if my doctor mentions a new drug. I also listen to a little voice inside my head that asks, "how much does it cost?" And then I wonder if my insurance covers it.

Addressing the price

So, yes, last night I added up my annual and monthly insurance expenses along with co-pays that vary before and after meeting my policy’s deductible. I thought about that money for a while, and to add insult to injury, I thought about how insurance premium and prescription costs rise faster than my retirement income.

I found myself wondering how paying for meds affects other persons with Parkinson’s (PWP). I despise the thought of a fellow PWP being forced to choose between picking up a prescription and buying food or paying for necessary medical or household expenses. And, I did not attempt to address PWP in countries where access to medications is extremely difficult or impossible.

I appreciate the fact that the medicine combo I take controls my symptoms for now. I am grateful they are available and I can currently afford them. I do not think I need to share the sum I spent on them last year but I will say this, my husband and I would have enjoyed a lovely vacation instead.