UPDATE: Yesterday (7/3/18) Rasagiline cost me only $2 a pill! Whoo hoo!! (And it was still high enough where the clerk pointed out the high cost. LOL) Fingers crossed the price stays that way. Still, the lesson below is worth reading…
UPDATE 2!!!: Picked up my monthly set of Rasagiline pills and… now they are only $!0 for the whole month. So, what happened? I have no idea. I think I’ll write another blog complaining about the high cost of living in California. Maybe the cost will magically go down! In all seriousness, why was a pill $10 a piece, then two months later, $0.30 each? Thank goodness I decided to take the $10 pills or I may not have known about the price drop. Such volatility in health care costs… Remind me again why people love our system so dearly?
Since being diagnosed with Parkinson’s Disease, I’ve spent a lot of time picking up pills from my pharmacist. I swallow at least 4 pills, three times a day. I suppose I should look at this as a blessing. At least there are pills to take that help. But, there is a price to pay. And, there is one pill… It’s Rasagiline. No, there are no side affects that I’m aware of. And, no offense to the researchers that developed it. No offense to the drug company that produces it. Heck, it could be a miracle for me. But, I it was months before I bought and then it was weeks before I’d swallow it…
It started innocently enough. My current drug levels were masking my symptoms pretty well. The neurologist was pleased as punch to have a patient that was working so hard, practicing Tai Chi every day, walking an hour, every day. “You should give motivational talks.” “Well…” I tell him, “I don’t think I’d do very well with those. I do it all out of fear. I’m only 50 years old and I have Parkinson’s. I’m scared. The fear is a very powerful motivator, but not exactly inspiring.”
(But… thinking about it, maybe using your fear as a motivational tool is worth sharing. I wake up every morning, get scared, get up, and off I go. How’s that strike you? Inspiring? Maybe…)
That reminds me… of the secrets I have now. They are piling up all over the place. At work, they don’t know my diagnosis. They know I don’t ride my bike to work anymore nor play golf, but not why. The neurologist doesn’t know I had a blog posted on the Fox Foundation website. I totally lied to the optometrist about my diagnosis and drug intake. It’s softball season and I’m playing better than I have for a couple of years. I had two weeks in a row of great play. 8 straight hits, including a game winner in the bottom oft the last inning and an inside the park home run. And, my teammates have no idea what a miracle this is. They don’t know how so impossible it would be without my hard work and the drugs.
When I have good days, I barely mention it. When I have bad days, I never mention it. As I type this, I’m having trouble typing with my right hand because I haven’t had my evening pills like I should. But… I won’t tell you that. Everyone is on a ‘need to know basis’. Is this healthy? I doubt it. But…. really, do I have to run around telling everyone everything all the time? Well… I never claimed to be perfect.
OK….back to the drug: The Dr announces he’s got a new drug for me. One that slows the onset of Parkinson’s. “How does that sound?” I had not realized there was such a drug. Instead of screaming, “WHY AM I NOT ON THIS DRUG??? Why did we not start with this???”, I say, “Sounds good to me.” So he types up the prescription and sends it to the pharmacist like the drug dealer that he is. By now, I know to take all these drugs with a grain of salt. Every person is different. There is no telling if it’ll work. But, it’s worth trying. And, I’m feeling a little more hopeful than I’ve been for a long time.
Every time I pick up pills, I fear the price. Will this be the time my insurance decides to stop covering this pill? But, this is a new pill. What will this one cost? The clerk comes back with my drug. She focuses on the price and nervously points out the price to me. I look at the bag. 300. I look at it again. $3.00? No… $300. I look at the bag… there is no way there is 300 pills in there. Not 200. Not 100. 30. THIRTY!?! My heart sinks… I pay for it and blankly walk to my car.
Living with Parkinson’s, I’m always an inch away from a panic attack. I get in my car, turn the radio up and I’m reeling. My eyes water. My face frowns… My ring finger in between my two knuckles starts to weirdly hurt, like it always does when I’m upset. I hate it. That stupid finger. What the hell is that? Makes me more upset.
In my panic, I fail the math and visions of taking a $30 pill every day for that rest of my life fills me with despair. $30 dollars a day? I can’t do it. I can’t doom my family by taking $30 pills every day for the rest of my life. They won’t have any money for anything else.
Eventually, I calm down enough to remember math again. $10 a day. $3650 a year for a drug that might work. MIGHT. And really, there is no way to know if it is working since the disease is different for everyone. Ten years from now, did it slow the progression of my symptoms? No one can say.
I stare at the bag two days later… unopened. I hate it. At that price, the insurance company must not cover that drug at all. I check around and that’s the price. My contact at Fox tells me the drugs that they aren’t sure work are super expensive. So, I’m trapped. $10 every day or risk not slowing the progression of the symptoms as much as possible. Thoughts of not taking any pills and wasting away invade. How’s that for inspirational?
Days pass…. I stare at the unopened bag every time I go to bed.
Of course I am internalizing all this because that’s just what I do. I act normal at home, at work, but I’m stressed and full of worry. Then, I tell my confidant at last. We are walking in the early morning, and I tell my wife. $3650 every year for a might work pill. Can I do that? That’s every year for the rest of my life. EVERY YEAR.
And she responds: “You are so worth $10 a day. Take the pills.” She knows I’m still doubtful. This is not the only pill. And the cost for doctors…etc etc. So, she stops me. Looks me in the eye… “You are worth it,” nodding reassuringly. “You are worth it… take the pills.”
I stood there like the idiot that I am. And, it dawns on me at last. It’s not all about me. It is never all about me. But I forget this all the time. I don’t have to be controlling everyone by withholding parts of my life. And, all the exercise, pills, Tai Chi, etc are at least as much about my family as they are about me. Because… well, we are a family. We are in it together.
So, the $10 pill…is swallowed every day, just like all my other weapons against the progression of this disease. Do, I like it? No. Does it help? Maybe. But, every time it goes down my throat, I’m telling my family that I love them and I’m doing everything I can. And, every time I go to the pharmacy and they point out the price, I’m reminded that my family, my wife, loves me and believes that I’m worth it.
There… that’s an inspirational thought.
No matter what mountain stands in your way….
Battle on. Every day.