January

January first is a time of reflection of the past year and anticipation of what lies ahead in the coming one for many. For families with medically fragile children it’s also a time to hold your breath for all the flaming hoops you’ll have to jump through. This year took the cake for the worst yet…

In November Ailbe started a new med. It took quite some time to get her to qualify for but she finally did (two year process). It was wonderful, shipped to our door and at a great price. Same thing happened in December. This is great, pharmacy #1 has a person who’s nice and calls and checks in and gives you the feeling you’re in the right place, life is great…

JANUARY “we’re sorry the medication now has to be filled at #2 speciality pharmacy.” “Okay no problem I’ll set that up.” I call get everything arranged give all her prior health and set up a shipment. Day of planned shipment… we are sorry there’s an issue with your prescription please call us. Call #2 speciality pharmacy, we’re sorry your insurance no long wants you to use this pharmacy. Call the insurance. No real explanation here other than lots of changes have occurred and we need you to use #3 pharmacy. Call the doctor get a new script and prior authorization for #3. While waiting I get a letter in the mail stating insurance no longer covers this medication. There are no exceptions and no prior authorization approval available. Call insurance company again and this time I’m told to fill out a 10 page waiver for patient assistance (that we know you won’t qualify for but we need a denial letter to then move on to the next step). Two days until medication runs out now. Call secondary insurance. Yes we can cover the medication but we need a pharmacy to run it to your primary and we will then pick it up. Can’t be billed just to us. Call insurance to try and get the pharmacy. Again remind them my child has a LIFE THREATENING condition and switching seizure medications without taper is very dangerous. Told, yes ma’am I already spoke with you and we are working on it. Get a script to #3 for an emergency shipment. Call doctor to send script. Said they did. Weekend wait…Prescription wasn’t received at #3 pharmacy. Call #2 pharmacy to transfer, three hours on the phone (with a very kind person) who tried everything she called the primary insurance, secondary, doctor, new pharmacy and really tried to help me, assured me, told me to hang up and call #3 pharmacy directly and they’ll have it all there to set up delivery. Thank her. Call #3. NO SCRIPT. Past date of medication. Cry to the pharmacist at #3 tell him I was told to speak to this pharmacist…”she’s gone for the day.” He hears me audibly gasp and says “I’m on it.” He calls me back and says, “I’ve got it but since you’re running through your secondary insurance it’s not this pharmacy #3 it’s actually going to be #4 Speciality pharmacy.” OMG at this point I’m going to need to go to the hospital myself. SEVEN days have passed. Call #4 pharmacy the next day. Set up the delivery. Give prior health history. I’m not on the contact list (what in the actual) and apparently it’ll be delivered tomorrow. Confirm, say “okay so we are all set nothing can go wrong?” Reply “Well… you could have a billing issue.”Two hours later, billing issue. “Would you like to pay $1750 your insurance denied the medication”, OMG. “Yes I’m sorry you’re the 17th person I’ve spoken to so I apologize if I’m rude but yes I’m well aware the insurance isn’t covering it but she has a secondary that will cover it.” Pharmacy rep…I “don’t have any of that information.” Mind blown at this point. “Okay found it. $0. Oh wait I see here since you’re using this insurance you now have to get it from another site and they’re out of stock.” At this point I’m floating. At least I felt like I was. Crying into the phone. “Miss, you okay?” Praise God someone calling me miss not ma’am. “Let me check hold on.”Calls dispensing center…. Long wait. “You still there?” “I’m here.” “We got it. It’ll be there tomorrow between 8-3.” “I’ll wait by the door.” Waited all day, no knock. Papa sees UPS truck and yells. We run out see sticker on the door. Yell. Driver.,.”you don’t have a doorbell,” (it was charging) “I didn’t knock.”

The knock never came but we got it. 9 days passed the regular delivery.

If my husband didn’t have a job and we didn’t have primary insurance Ailbe would’ve received her medication with no lapse, NINE days ago, for free. Make that make sense.

It’s unacceptable that there is so little care for the MOST vulnerable population. She has; No school. No friends. No groups. No community. No teams. No check ins.

Let’s draw the line at No Medication.