Specialty Medication Struggles Take Two
1/29/2021
As I write this, I’ve been sitting on hold for 30 minutes with our specialty medication pharmacy. I’ve already struggled this month trying to get this medication refilled because they wanted to bill us a copay and they wouldn’t ship it unless I placed a credit card on file. Yes it’s the beginning of the year and deductibles must be met, however, since Holden now has three insurances we have never had to pay a copay for medications. One time we were charged a copay and I learned this game the hard way. We spent 6 months trying to be reimbursed. And when they finally did, they filled the check out to the wrong person. (Same last name, different first name) You know what they told me? That this was the name on my insurance card in their file and that we need to contact our insurance company to have a new card; this was obviously and most definitely not true. I spent months going back and forth with them. Being told an address to send my information to only to have it returned to sender. Calling again and getting a different address and having my letter again returned to sender. I had to pay for certified mail to have proof it was sent to them and again it came back returned to sender. I ended up having to pay for certified mail with signature confirmation. I don’t know why things have to be so complicated.
But I digressed from our topic, sorry about that. This month something happened to us that has never happened before in the almost 4 years that he has been taking Sabril. Each month we are to receive 180 packets of this special little gem. It always comes in three boxes of 50 packets and one baggie of 30 packets. The delivery comes, and all appears correct. So imagine my complete shock when I open one of the boxes and there are only 20 packets inside! This seems like a pretty simple error. Someone obviously counted out the 30 packets to place in the bag and incorrectly gave us the half emptied box instead of a new one. The constant stress that we already go through to get this medication is ridiculous. Opening this box sent me into a complete panic and I immediately wanted to cry. I had to use all of my coping skills of deep breathing and counting exercises to keep the tears from flowing. The nurse in me counted all of my packets five thousand times to make sure I was not mistaken. (Okay okay, it was five times, not five thousand) I called my husband to make sure he hadn’t removed any of the packets for some reason. And once all of this was confirmed the rest of the panic and frustration set in. Wide eyed, tight chested, heart racing, fingers trembling, stomach in my throat and head in my hands. I’m already dreading this phone call because I know I’m just an ant standing at a 6 foot fence trying to get up and over it. It shouldn’t have to be this hard to advocate for your child. You shouldn’t be filled with stress because you already know this will be multiple phone calls. So much time, effort and emotion gets dumped into issues like this.
(Time for some alias name fun!)
At 54 minutes of still being on hold, I’ve decided to go get my husbands phone and call from his as well. Rupunzel answers the phone and she seems alright, she transfers me to King Candy and it’s not a long hold. I plead my case to the King and he confirms that he does see my other call on hold still. (Ain’t that special?) With my other phone on hold for a grand total of one hour, King Candy confirms that he will resolve this issue and that there will be no more call transfers so I can hang up my other phone. Apparently two formal complaints must be filed and a pharmacist must review the error and call back by the end of the day. I can rest semi easy with the kindness of the King and hope I’ll receive the phone call and everything will be corrected. So we spent a grand total of one hour and twelve minutes attempting to correct this error; so far.
Thank you for sharing your time to read my blog. I find it very therapeutic to be able to vent these struggles and I also hope it helps to spread awareness of the ins and outs of just what it takes to advocate for a child with multiple needs.
Update:
Surprise surprise, no one called me back….. onto another phone call……
Update 2:
I was privileged of having another four phone calls with the company.
First phone call I sat on hold for 23 minutes before I was hung up on.
Second call I was hung up on as soon as I was transferred.
Third phone call was about 9 minutes long and I spoke to a very pleasant lady who was able to at least tell me that things were in process. Complaint claim was filed, supervisor assigned case to pharmacist, pharmacist sends claim to logistics specialist.
Fourth phone call logistics specialist called me!! She was very thorough and said everything is video recorded and it will take a few days for the full investigation to be completed to see what went wrong where before they approve to send out missing 5 days of medication. (That’s just over $4,000 worth of medication)
That puts us at a total of one hour and fifty-three minutes on the phone, so far. Hopefully the issue is resolved soon.