My Monthly “One Moment” with the Specialty Pharmacy

Filling Parker’s SPECIALTY meds is really a very special kind of experience…I know you all want to see through my lens for a moment…don’t you?!

You know, because Parker is extra SPECIAL, his meds can’t be filled at the local walk-in kind of pharmacy…on no…they are mailed on ice in these little white styro-foam coolers…and every month, I think, how many igloos are now in our landfills.  And I think we have more ice-packs than food.

A call to this very “special” pharmacy goes a little like this…

I dial, then hit the many prompted numbers to get a person, then the kind voice on the other end asks how they can help…thinking they can…but I know that they can’t…and I am about to cycle through at least 3 people…but today was an extra kind of special.  I got to talk to 9 people  … most of who were totally helpless…because their system is BROKEN.

So the first person says “one moment” and puts me on hold…and I get to listen to their jazzy little beat (ba-da-ba-da…bit-dit-dit…bit –dit- dit…do-wa).  That little loop is 30 seconds and it loops and loops over and over.

So I put my phone on speaker and go about my business because I know it will be anywhere from 5 minutes to 10 minutes before the first person will begin assisting.   But I get to listen to that jazzy little bit…

I get the second person and I explain again that I need to speak with someone who can fill HyQvia from the IVIG team (because I know that with this script on the list, even though there are 2 others for today, I can’t "pass go" until this one is filled.).  I hear “one moment please”…cue 5-10 minutes of jazzy little bit loop…

“Hi, who am I speaking with?”  I run through name, parent name, DOB, address… “I see you need to fill Ilaris, Otezla, and HyQvia, but I need to get you to the team that can help you.”  I ask what team I am with and am told, Rheumatology.  I tell her “wait, you can fill the Ilaris and Otezla”.  She replies, “No mam, I need to get you to the correct department, I can’t fill the HyQvia. One moment please.”  Cue jazzy little bit….

This time, about 15 minutes later, I get a grumpy lady who is asking questions at a quick time speed of that jazzy bit.  She fills the med and is acting like she is done…I am like “wait…there are supplies too”.  I hear “what do you want”…I kindly explain that all the supplies that I got last month were wrong and luckily I had extra supplies on hand and was still able to administer the infusion.  But I must get the right supplies this round because I don’t have spares.  I ask her to fill the same as December’s supplies.  Again she acts like she is done and wants off with me as quick as possible…”oh, I am not done…I need to fill 2 more meds”  and I explain I need to be transferred back to the rheumatology team.  “one moment please”….cue jazzy little bit for another 5 minutes….

I get the next person and they can’t help out at all…”This is a specialty med mam, I need to transfer you to the team who can help. One moment please”…by now I am laughing because I just have to…(ba-da-ba-da…bit-dit-dit…bit –dit- dit…do…….silence……disconnected).  Here I go…onto repeat mode all over again.

I dial and literally get to go through this all again.  I explain what I am calling to refill and that the HyQvia has been completed and to PLEASE transfer me to the rheumatology team….”One moment please.”  Ok, let’s be real, we all know by now that it will most certainly not be “one moment” and I now officially hate jazz.

And… even though I had explained that I already filled the HyQvia, they transferred me there again.  Guess what, I start laughing because this is too funny not to laugh at (45 minutes later from my initial call).  I get the guy to laugh and he transfers me to who can help, with a sweet “one moment please”.  Cue jazzy irritating bit…

Oh the poor woman who picked up the line…we both didn’t know that I had had enough “moments”…She was with the main refill line, not the rheumatology team and when she said “one moment please”…I said “No, wait.  I really don’t have any more moments to spend trying to fill these scripts.  I need to speak with a supervisor.”  I know I took her off guard.  Because she said “I can’t fill these meds.  They are specialty meds.  I need to get you to the team that can help."  I tell her that I have been trying to fill these scripts for an hour now.  She says..."an hour?"  I explained and then tell her that my son is on a lot of “specialty meds” because he is one special kid and I work full time and I am a mom who is trying to help my child.  And I demanded that she get me to a person who can actually help me complete this order.  She apologizes in a very flustered manner.  I actually feel a little sorry for her, but I stand firm and say I need to speak to a supervisor.  Poor thing…she said “one moment please”….jazzy bit plays and I am now an hour into this.

When she finally comes back on 10 minutes later she says, “I have someone who can assist you”…I say I so hope so and we both wait…silence…I say “hello?”  and the poor soul I let have it says, “Oh my gosh, we were disconnected.”  And she sounds like she is going to cry.  I find myself counseling her, saying it is not her fault and that their system is broken and I don’t know how any of them can work there.  She says she WILL get someone to help me and she told me to hang up, and she would have someone call me back so I wouldn’t have to be on hold.  Halleluiah…No more moments with that dreadful jazzy bit…

John call me back, fills the final meds.  Then explains to me that Parker’s in a very special group of patients with a lot of meds and supplies and there is a note on his file that says “don’t fill, send calls to the IVIG team”…I explain that I already know this and no matter how much I try to help them on the other end of the line to do this correctly, by first going to the IVIG team, and then to the rheumatology team, I always speak to at least 4 people… but today he was my 9^th.  We got through the order and then he said I could set up his records on-line and do his orders over the internet.  SIGN-ME-UP…But…I will still have to call for the IVIG and new scripts.  Well, at least this is improvement…right?

I tell him that I am thankful for this partial solution and then he gives me his direct number for the future and says that if this starts happening again when I call in, that I can call him direct or even have the team text him; and he will call me back and help me fill scripts efficiently, so that I can work and take care of my son.  I tell him I look forward to him helping me in the future … and we both knew that this was probably true because their system doesn’t work in our favor and we will likely talk again.  He admitted that patients like this fall through the cracks and that it is wrong and he hopes to correct it.

I know this is a long rant…but I want other caregivers out there to know that there is this solution. Also I want those with healthy children to be grateful that all you need to do when your kid has a need for a pharmacy is drive down the street.  That is truly a gift.  1 hour and 45 minutes later, I am grateful for these meds that keep our child ALIVE!