It's all fun and games until someone's meds get ruined
So, we've been here in Hawaii for just over a week, and have 1.5 days left in our vacation. Now, as you would rightly assume, we've had a pretty good time here - nice weather, gorgeous scenery, too much food. Rough life. Yes, a few wrinkles here and there, but overall - not too shabby. ;-)
Except for one thing.
tl;dr - I have spent WAY too much time on hold on the phone during this trip.
The medication I currently take for my Crohn's disease, Stelara, is a self-administered injection I do every 8 weeks. The medication gets overnighted to me a week or two before I need to take it because it doesn't have a long shelf life, so I can't receive it any earlier than that. It also must be refrigerated (hence the overnighting - ice packs are involved). However, I recently learned that you CAN take the medication out of the fridge and keep it at room temp for up to a week, as long as you don't re-refrigerate it once it's been removed. This was handy because we left on a Tues, and I wasn't due to take my shot until 2 days later. But I took it out of the fridge, toted it along with us to Hawaii, and planned to take it Thurs. On Wed night, I took it out of my bag and set it on the kitchen counter (we had rented a condo) so I would see it in the morning, as a reminder.
Thurs morning comes, and we're getting ready to leave on our day's adventure, when I remember - ah, meds! MiniPlu pulls it out of the fridge for me and ... hey wait. "Mom, wasn't this supposed to stay out of the fridge?" Turns out, Two saw it on the counter on Wed night, thought I'd made a mistake, and without checking, dutifully put it back in the fridge for me.
I spent some time on the phone with both my mail-order pharmacy (Walgreens Prime) and the manufacturer (Jansen - they make Stelara and a couple other similar meds) trying to verify that the meds were, in fact, spoiled. Even the science department at Jansen couldn't tell me what happened to the meds that were re-refrigerated. Did they become ineffective? Cause actual harm? What? No one seemed to have that on record anywhere. But we did have to conclude I shouldn't take the meds. After some further back-and-forth, it sounded like Jansen would send their approval over to Walgreens Prime in the next day or so, so I should check back the next day. Finally, a good 90 mins after we intended to leave, we were finally on our way up Mt. Haleakala, where I didn't have signal for several hours. Because all these companies are on the East Coast (US), that's a 6 hour time difference, which meant each day I really could only talk to people during my morning. So by the time we were done on Haleakala, definitely nothing further could be done until Fri. But I was hopeful they could ship the meds to me and I could get them by Mon, maybe Tues. I left a message for my doctor telling him what had happened and he said 4 days late was ok.
I was really upset about what had happened to my meds, especially as Two is not a generally apologetic person. Will made him come apologize to me and give me a quick hug, but I could tell he didn't really grasp the impact his mistake had made, and wasn't at all remotely sorry for his well-intentioned but SERIOUSLY awful mistake.
Fri I was back on the phone with Walgreens Prime. Alas, they did not yet have the approval from Jansen to send over the replacement. We drove to Hana that day, which meant, again, I had little to no signal for hours. I probably should have tried over the weekend, but I assumed that nobody would answer. (As it turned out, Walgreens Prime, at least, is open for part of Sat.)
Monday I went for a long walk with Will in the early morning and spent half of that on hold with Walgreens Prime because they STILL did not have the approval from Jansen. Things seemed like they were getting promising, and I was told a person from Jansen would be calling me later that day. Nothing happened.
Tuesday I spent more time on hold with Walgreens Prime. Eventually the man I was speaking to came back on the line and said that Jansen apparently had ONE (!!!) person in the entire f'ing company who did approvals for replacements like this, and they were going to be out of the office until Thurs. Which is just ... what? She said when I called back to ask for the Logistics Dept - which is basically their "I'd like to speak to the manager" team, only much bitchier - they'd keep lighting a fire under Jansen until we got results.
Today (Wed) I missed a call because my volume was turned off for the night. In it, a rep from Walgreens Prime said they'd finally heard back from Jansen ... and that Jansen had denied the claim and said it wasn't their job and that I had to talk to insurance. Which was a big ol' WTF from me. I spent some time on the phone with a woman from Jansen who tried to tell me my file had been closed the previous day (??) because "you've used up your replacement requests". (Nope, try again. I have never asked for a replacement before, ever.) Because you waited too long to call it in. (Also nope.) Plus there was the whole "Nobody will be in to approve this until Thurs" which clearly wasn't true if someone was around to DENY it sooner than that. You get the idea. Finally I asked for a supervisor, because maybe the information was above this person's pay grade, which is fine, but I was GOING to get answers from someone. Unfortunately, as the supervisor put it, the replacement is a "courtesy" - and not guaranteed. Which nobody had ever said. And similarly, nobody - either Jansen or Walgreens Prime - had suggested I get in touch with my insurance company for an emergency override on the refills, just in case the courtesy was denied. Nobody had told me that approvals sometimes take 7-10 business days, given that both sides clearly seemed to be acting like this could be handled in a day or two. And when I expressed disbelief that something as crucial as medication could be delayed in red tape THAT LONG, I was told that pharmacies sometimes will just hand out the new meds immediately, and trust that it will get replaced by the manufacturer (or insurance) after the fact, which clearly Walgreens Prime did not do. (Which ... fine, whatever, if that's not their thing, but don't you think all of this should have been explained by someone during the MANY MANY phone conversations going on between me, Walgreens Prime and Jansen? The person was apologetic, but I was absolutely devastated to have been waiting for SIX DAYS only to have a complete switcheroo pulled on me like this. I said that I hoped this call would be used as a training lesson for others so that nobody else had to be given such crappy information (or lack thereof) in future. And that was that.
I threw myself on the bed in tears (I almost NEVER cry, but this was all just too fucking much), and asked Will to take Two down to the beach/pool (MiniPlu had gone down at the beginning of this whole debacle) because I couldn't even stand to look at him in that moment. I mean, this entire time, all six days, he remained totally blase about the whole thing, and even while he was there in the room, listening to me duke it out with Jansen, he couldn't have cared less. Will took him down to his sister and came back up. By then I had been on the phone with insurance, and they had thankfully put in the override right away without question. And then they patched me back through to Walgreens Prime so I could place the order.
Unfortunately, I entered the Walgreens Prime phone system at a different point than what I get when I call them directly, and I almost immediately got caught in a phone tree loop, and had to hang up and start over again. I got someone and explained the whole situation. It took a few tries before she grasped that I ALREADY had the override and not that I still had to get it. I was put in hold for ages while she went to check on the status of that ... and then the call was disconnected.
Called AGAIN. Got a different person. She, too, put me on hold to look into the override, at which point the first person called me back. Put Person B on hold while I answered Person A. She assured me she had found everything to be in order, then got off the phone so I could return to my call with Person B - who by then was finally back on the line - and confirmed that everything was in order. Which meant, at last, I could reorder my medication. At this point it's being sent to my house, not my hotel, because the soonest it could arrive was Friday, and we arrive home Sat morning. So: NINE days later, I should finally have my meds. The woman was a bit on the slow side filling out the necessary forms for shipment, but I didn't care because she was nice and the job was finally getting DONE.
By the time I got off the phone, I'd been at it for TWO HOURS. And I was still on the verge of tears, furious at my son for not giving a shit that I'd had to deal with this when I could have been having fun in Hawaii, terrified that this disruption will result in a relapse and just ... ugh.
So, yes, there have been beaches and a luau and gorgeous scenery and, yes, some grumpy travel issues here and there. But also this huge thing that has dominated almost our entire trip. Not fun. At all.
Except for one thing.
tl;dr - I have spent WAY too much time on hold on the phone during this trip.
The medication I currently take for my Crohn's disease, Stelara, is a self-administered injection I do every 8 weeks. The medication gets overnighted to me a week or two before I need to take it because it doesn't have a long shelf life, so I can't receive it any earlier than that. It also must be refrigerated (hence the overnighting - ice packs are involved). However, I recently learned that you CAN take the medication out of the fridge and keep it at room temp for up to a week, as long as you don't re-refrigerate it once it's been removed. This was handy because we left on a Tues, and I wasn't due to take my shot until 2 days later. But I took it out of the fridge, toted it along with us to Hawaii, and planned to take it Thurs. On Wed night, I took it out of my bag and set it on the kitchen counter (we had rented a condo) so I would see it in the morning, as a reminder.
Thurs morning comes, and we're getting ready to leave on our day's adventure, when I remember - ah, meds! MiniPlu pulls it out of the fridge for me and ... hey wait. "Mom, wasn't this supposed to stay out of the fridge?" Turns out, Two saw it on the counter on Wed night, thought I'd made a mistake, and without checking, dutifully put it back in the fridge for me.
I spent some time on the phone with both my mail-order pharmacy (Walgreens Prime) and the manufacturer (Jansen - they make Stelara and a couple other similar meds) trying to verify that the meds were, in fact, spoiled. Even the science department at Jansen couldn't tell me what happened to the meds that were re-refrigerated. Did they become ineffective? Cause actual harm? What? No one seemed to have that on record anywhere. But we did have to conclude I shouldn't take the meds. After some further back-and-forth, it sounded like Jansen would send their approval over to Walgreens Prime in the next day or so, so I should check back the next day. Finally, a good 90 mins after we intended to leave, we were finally on our way up Mt. Haleakala, where I didn't have signal for several hours. Because all these companies are on the East Coast (US), that's a 6 hour time difference, which meant each day I really could only talk to people during my morning. So by the time we were done on Haleakala, definitely nothing further could be done until Fri. But I was hopeful they could ship the meds to me and I could get them by Mon, maybe Tues. I left a message for my doctor telling him what had happened and he said 4 days late was ok.
I was really upset about what had happened to my meds, especially as Two is not a generally apologetic person. Will made him come apologize to me and give me a quick hug, but I could tell he didn't really grasp the impact his mistake had made, and wasn't at all remotely sorry for his well-intentioned but SERIOUSLY awful mistake.
Fri I was back on the phone with Walgreens Prime. Alas, they did not yet have the approval from Jansen to send over the replacement. We drove to Hana that day, which meant, again, I had little to no signal for hours. I probably should have tried over the weekend, but I assumed that nobody would answer. (As it turned out, Walgreens Prime, at least, is open for part of Sat.)
Monday I went for a long walk with Will in the early morning and spent half of that on hold with Walgreens Prime because they STILL did not have the approval from Jansen. Things seemed like they were getting promising, and I was told a person from Jansen would be calling me later that day. Nothing happened.
Tuesday I spent more time on hold with Walgreens Prime. Eventually the man I was speaking to came back on the line and said that Jansen apparently had ONE (!!!) person in the entire f'ing company who did approvals for replacements like this, and they were going to be out of the office until Thurs. Which is just ... what? She said when I called back to ask for the Logistics Dept - which is basically their "I'd like to speak to the manager" team, only much bitchier - they'd keep lighting a fire under Jansen until we got results.
Today (Wed) I missed a call because my volume was turned off for the night. In it, a rep from Walgreens Prime said they'd finally heard back from Jansen ... and that Jansen had denied the claim and said it wasn't their job and that I had to talk to insurance. Which was a big ol' WTF from me. I spent some time on the phone with a woman from Jansen who tried to tell me my file had been closed the previous day (??) because "you've used up your replacement requests". (Nope, try again. I have never asked for a replacement before, ever.) Because you waited too long to call it in. (Also nope.) Plus there was the whole "Nobody will be in to approve this until Thurs" which clearly wasn't true if someone was around to DENY it sooner than that. You get the idea. Finally I asked for a supervisor, because maybe the information was above this person's pay grade, which is fine, but I was GOING to get answers from someone. Unfortunately, as the supervisor put it, the replacement is a "courtesy" - and not guaranteed. Which nobody had ever said. And similarly, nobody - either Jansen or Walgreens Prime - had suggested I get in touch with my insurance company for an emergency override on the refills, just in case the courtesy was denied. Nobody had told me that approvals sometimes take 7-10 business days, given that both sides clearly seemed to be acting like this could be handled in a day or two. And when I expressed disbelief that something as crucial as medication could be delayed in red tape THAT LONG, I was told that pharmacies sometimes will just hand out the new meds immediately, and trust that it will get replaced by the manufacturer (or insurance) after the fact, which clearly Walgreens Prime did not do. (Which ... fine, whatever, if that's not their thing, but don't you think all of this should have been explained by someone during the MANY MANY phone conversations going on between me, Walgreens Prime and Jansen? The person was apologetic, but I was absolutely devastated to have been waiting for SIX DAYS only to have a complete switcheroo pulled on me like this. I said that I hoped this call would be used as a training lesson for others so that nobody else had to be given such crappy information (or lack thereof) in future. And that was that.
I threw myself on the bed in tears (I almost NEVER cry, but this was all just too fucking much), and asked Will to take Two down to the beach/pool (MiniPlu had gone down at the beginning of this whole debacle) because I couldn't even stand to look at him in that moment. I mean, this entire time, all six days, he remained totally blase about the whole thing, and even while he was there in the room, listening to me duke it out with Jansen, he couldn't have cared less. Will took him down to his sister and came back up. By then I had been on the phone with insurance, and they had thankfully put in the override right away without question. And then they patched me back through to Walgreens Prime so I could place the order.
Unfortunately, I entered the Walgreens Prime phone system at a different point than what I get when I call them directly, and I almost immediately got caught in a phone tree loop, and had to hang up and start over again. I got someone and explained the whole situation. It took a few tries before she grasped that I ALREADY had the override and not that I still had to get it. I was put in hold for ages while she went to check on the status of that ... and then the call was disconnected.
Called AGAIN. Got a different person. She, too, put me on hold to look into the override, at which point the first person called me back. Put Person B on hold while I answered Person A. She assured me she had found everything to be in order, then got off the phone so I could return to my call with Person B - who by then was finally back on the line - and confirmed that everything was in order. Which meant, at last, I could reorder my medication. At this point it's being sent to my house, not my hotel, because the soonest it could arrive was Friday, and we arrive home Sat morning. So: NINE days later, I should finally have my meds. The woman was a bit on the slow side filling out the necessary forms for shipment, but I didn't care because she was nice and the job was finally getting DONE.
By the time I got off the phone, I'd been at it for TWO HOURS. And I was still on the verge of tears, furious at my son for not giving a shit that I'd had to deal with this when I could have been having fun in Hawaii, terrified that this disruption will result in a relapse and just ... ugh.
So, yes, there have been beaches and a luau and gorgeous scenery and, yes, some grumpy travel issues here and there. But also this huge thing that has dominated almost our entire trip. Not fun. At all.