About a year ago, I walked in my bathroom, opened my mouth, and shone a light into the back of my throat. Some white spots had showed up unannounced and Dr. Google informed me that I had strep throat. The process was simple. I went to the doctor, picked up a prescription, walked into a local CVS and paid for the medicine that made it go away. Easy enough, right?
Over the past few years, insurance and pharmaceutical companies have changed the way some patients receive their monthly tyrosine kinase inhibitors (CML oral chemotherapy). Instead of walking into a neighborhood CVS with a prescription and having medication in your hand 20 minutes later, you set up a time and a place to have recurring shipments sent to your residence or place of business. It sounds convenient, but it’s not.
Today, I found out that I’ll begin receiving Ponatinib via mail order. As a patient, I wasn’t happy about not being given an option. Here’s are 6 reasons why the decision to mail-order medication is a bad idea.
1. Convenience isn’t always convenient
The first thing anyone from a specialty pharmacy/insurance/pharmaceutical company will tell you is that shipping medication to your house is convenient for the patient. In theory, I agree. But theories don’t sign for mail and they’re unable to provide you with a nice, stationary job so that you can receive packages even if you’re not home. In other words, theories sometimes suck. It’s not convenient to miss a medication delivery three days in a row and make time between another business’ hours — which are always inevitably identical to yours — to drive 20 miles away to pick up something you could have otherwise waited in a 20 minute line to get.
2. Unnecessary stress and anxiety is not cool
Too many times, I have witnessed or heard about a shipment of medication being delayed or deterred for a reason out of the patient’s control. Bad weather and holidays are usually the culprit. Whatever the case may be, people affected by cancer don’t need another reason to experience stress. It’s difficult enough trying to navigate through hospital bills and insurance. Unless your neighborhood pharmacy is sponsoring a Xanax drive, we could do without the unnecessary anxiety as well.
3. We lose more control
The whole cancer experience is about a loss of control. You don’t know what caused your cancer, how effective your treatment will be, how you’ll be able to manage side effects, and if you’ll ever feel as secure in your job and life as you once did. When we’re not given the option to choose the method of our medication delivery, we’ve lost yet another element of control, one that at least creates the illusion that we’re making a difference in our own treatment. It’s okay for a company to stop pretending they know what’s best for everyone.
4. Shipping in extreme weather ruins medication
Last summer, I heard numerous horror stories about patients receiving medication in shipping packages that didn’t contain ice packs. It was over 100 degrees in some places and even hotter in the cargo area of a FedEx truck. TKI’s, like most medication, require room temperature storage. When they’re exposed to extreme heat, the medication is compromised. Lives are affected. I don’t want to leave my doctors office thinking I did something wrong when, in reality, my oral chemo simply wasn’t as effective as it could have been. And I sure as heck don’t want to have to wait for another overnight shipment. See #1.
5. We have lives
The service industry is notorious for giving you an eight hour window. Somehow, somebody thought this was okay. “Your <fill in the blank> will be there in the a.m.” means that since breakfast at Denny’s is still served in the afternoon, afternoon can be referred to as the morning. Contrary to the convenience theory, I don’t have time to sit around and stare out the window all day. I go to school and then to work. Please, for all that is good and holy, understand this.
6. To the middle men, we’re just a number
I have a friend who has written about her specialty pharmacy horror stories. I’ve had some of the same experiences. To the middle men, we’re just a number. When they’re missing information to process an order, they’ll act like they owe you money. You’ll never hear from them. Can we get a break from being another number? At least at the local pharmacy I get to talk and form a relationship with the pharmacist. He’ll even remember me after I pay a $3,057 deductible.
The reality is that a decision was made somewhere down the line to ship Ponatinib to the patients who need it. It was probably made by a team of executives who have never had to be home to sign for their medication, executives who probably pick up their medications at the local CVS or Walgreens just like everyone else. I’m sure this method of shipping medication to homes is a great option for some, but not for people like me. And you have to remember, this isn’t just a one month thing. This is essentially for the rest of my life.