All the favors in pharmacy land

For most of my adult life, I have had the feeling that I didn’t have any money. I worked full time in college, and two full time jobs in grad school. I worked full time for a biotech company after I graduated, while also working side jobs. I certainly worked a lot for not having money.

At some point, I sat down and went through all my finances in detail. I looked at years of bank statements, credit card statements and student loan agreements. I tallied how much I spent on gas, on car repairs, on food, on fun. But none of those were the issue. I had one expense that was more than all of those put together: medical bills.

I literally just sighed as I typed that sentence. And you know what? I bet all the sick kids reading this sighed along with me. I don’t even get mad about it anymore. I am just resigned. Sigh.

I accepted a temporary position at my current company about two years ago. After six months as a contractor, I accepted a full time position. My contractor insurance was garbage and I needed comprehensive coverage badly. I eagerly flipped through the insurance information packets, basking in the golden glow of great medical coverage. It was overwhelming and wonderful. It was also a little sad that I was barely 30 years old and so excited about copayments and yearly out-of-pocket maximum costs that only had three zeros at the end.

I signed up for PPO insurance, which for our non-American readers means I can pick which doctors I see without being referred by my primary care physician (PCP, usually called general practitioner in other countries). There are caveats to PPO plans, but it is overall less restrictive and therefore desirable for me, as I often need specialist appointments on short notice.

In the US, it is not unusual for your medical insurance (doctor visits, hospital stays, medical supplies) to be managed by a different and completely separate company from your prescription coverage. So when I picked my PPO insurance, I also had to pick a large prescription carrier that forced upon the unwitting masses the bane of my existence: mail-order prescriptions.

I worked in pharmacy for about ten years. In that time, prescription insurance companies directly caused most of the issues that made my job frustrating and difficult. The prescription carrier I got along with my (amazing, approves everything) PPO is well known for rejecting claims for stupid reasons. But I needed a PPO and this was the corresponding prescription insurance. I didn’t have a choice.

So I got my new prescription insurance card and used it to fill my monthly medications at my local pharmacy. That went okay for a couple of months. Then I got a notification that my insurance would only pay for three fills of a maintenance medication (one that is taken all the time as part of your baseline care). Any fills after that would have to be filled with a mail order pharmacy.

Because I need a million strange things, I called my health insurance case manager. She sympathized but had nothing to do with pharmacy benefits. I told her that I had called the prescription company and asked for a case manager. They wouldn’t give me one. She couldn’t do anything.

The mail order pharmacy got new prescriptions for my meds from my doctors. They filled them and shipped them out to me. I opened the first huge box of meds and immediately knew something was wrong. I take ondansetron (zofran) 8mg three times a day every day. I have done this for years. I have tried to decrease and it always goes very badly. I have a prior authorization done every year to approve for 270 tablets/90 days for four total fills to coverage three a day dosing for the entire year. The pharmacy received a prescription that said that.

Except the person filling the prescription looked at it and thought, nobody takes three of these a day every day. Surely this is a mistake! And bless their hearts, they did me the huge favor of correcting that prescription from 270 with 3 refills to 27 with 30 refills. That’s much better.

So I had nine days of zofran. I called them and told them what happened. I was on the phone for two hours. They told me it was all set and they were sending the rest. Three days later, a package arrived. It had one bottle of 27 ondansetron.

I’m not going to bore you with the sordid details because I bet you all know where this is going. You know, right? Yup. Nine phone calls and every single one of them went exactly the same way except by the ninth, I was crying in frustration. I was out of my medication and every time I called, they told me it was all set and they fixed the error. And then nine more tablets would show up and we would start all over again.

This is a repeating cycle. The mail-order pharmacy is forever filling my 270 tablet (insurance approval obtained) prescription for 27 tablets.

So, mail order pharmacies are difficult. I don’t think that is surprising anyone here. But at the same time as this was going on in what I assume was a distant state where everyone is brainwashed to reassure me that they are fixing my problem right before they throw my precious bottles of ondansetron into a bottomless pit, I started having some problems closer to home.

I still got some prescriptions filled at my local pharmacy (this is entirely at the discretion of the pharmacy insurance.) There were only three I got filled locally regularly – prednisone, fluticasone nasal spray, and Epipens. Last October, I was counting out my prednisone 1mg tablets to put into my pill organizer when I realized there were a bunch of 5mg tablets mixed in with the 1mg tablets. I had been sick for three weeks and wondering why I felt decent one day and miserable the next. That would be because I was dispensed two strengths of a medication for which 1mg differences matter a lot. So that sucked. I called the pharmacist and she apologized and filled my script with 1mg tablets instead of both and I got on with my life. I understand that mistakes get made sometimes. It’s fine.

Then in December, this same pharmacy lost a prescription from my PCP. In May, they lost a prescription for prednisone for premedication before surgery. I had called the previous week to make sure it was there and sent my mother to pick it up on the Monday before my Wednesday surgery. It was gone. So that was quite a circus getting that straightened out the day before major surgery. The district pharmacy supervisor called me and we had a long conversation about my weird diseases and surgery and she apologized and I needed to go have surgery so I just let it go.

Two weeks ago, I called to get my Epipens filled. I had a new prescription that was on file from March. Guess what, guys? GUESS WHAT. That prescription was gone, too.

At this point, I just hung up the phone because I was about to start screaming. I called the district pharmacy supervisor on Monday and she went by the pharmacy to pull the original prescription book from the day it was sent over in March. It was there. It was filled, returned to stock and never put on hold. This was three prescriptions, all from different offices, in under a year, with a dispensing error right off the top.

While I was dealing with the Epipen situation, I ordered refills for all of my mail order meds and GUESS HOW MANY ONDANSETRON CAME IN MY ORDER. JUST. GUESS.

I called the poor nurse at my PCP’s office who does all my prior authorizations and I literally sobbed over how sick I was of fighting for things like meds to not vomit up everything I eat. This woman is a saint and she tag teams my insurance company with me to get things taken care of. To demonstrate my gratitude, I hereby bestow upon her the internet moniker of Nurse Amazing.

In the last two weeks, Nurse Amazing and I made over a dozen phone calls between us and had the same conversation over a dozen times. After one particularly hopeless day, she asked if my IV meds were covered under my medical benefit. They are. “If we have to, maybe we can just call in enough IV Zofran to get you through.” HOW DO I LIVE IN A WORLD WHERE IT IS EASIER TO GET IV MEDS THAN NON-CONTROL SUBSTANCE TABLETS WITH NO POTENTIAL FOR ABUSE? HOW IS THE WORLD LIKE THIS?

The Universe cut me a break this time. I finally got the rest of my ondansetron delivered Saturday.

While Nurse Amazing was on the phone with my insurance, she noticed my Enbrel prescription was about to expire so she gave them a new one over the phone. “She hasn’t taken this since last year,” the agent told the nurse so apparently they are also throwing away any record of my monthly order for this (refrigerated, requires signature and scheduled delivery) medication. My Enbrel arrived expediently with no paperwork of any kind. Just a labelled box of prefilled syringes, an ice pack and nothing else.

I just went to pick up my Epipens. The pharmacist did not apologize and did not look the least bit like she gave a shit that I have spent over 65 hours in the last three weeks trying to fill my medications at SIX pharmacies as required by insurance (for those keeping score: retail pharmacy, mail order pharmacy, specialty mail order pharmacy for Enbrel, a second retail pharmacy that stocks one of my harder to source meds, compounding pharmacy for ketotifen, IV pharmacy for IV push meds/infusions). And you know what? It’s one thing to make consecutive mistakes, and it’s another thing to make consecutive mistakes and act like I am an asshole for expecting my medications to be filled and tracked correctly.

“This copay is high but I can only charge you half because of what happened,” she said. Where ‘what happened’ meant they lost the prescription for my lifesaving epinephrine autoinjectors.

“I would appreciate it if you would waive the copay in light of all the time spent getting this straightened out,” I said in my most exhausted voice both because I am so exhausted and also because it was either exhaustion or screaming vulgarities.

“Fine,” she said. You know that voice people use when they think they’re doing you a favor, like they’re giving you something that you shouldn’t expect? It was that voice. “Fine.” In that voice. I signed, took my Epipens and left.

On my way home, I remembered that I got shorted needles by my IV pharmacy (which has never made a mistake with my meds or supplies.) I stopped by the other pharmacy in walking distance because I just did not want to go back to the one where the pharmacist was doing me favors.

In Massachusetts, you can buy syringes without a prescription if you’re over 18. I walked up to the counter with my license out and prepared myself for the inevitable condescension that usually accompanies buying syringes without a prescription.

The technician came right over. “I need twenty syringes, inch long needle, any gauge you want,” I said.

“Okay,” she said, smiling. “Any specific volume?”

“It doesn’t really matter. My infusion pharmacy just didn’t send me enough for this week.”

“Well, that’s not okay,” she said and you know what? SHE ACTUALLY MEANT IT. “I’ll bring over a few and you can pick.”

She brought over a few types and I picked the one I wanted and she rang me out.

As a demonstration of my appreciation for her smile and sympathy, she shall hereafter be known as Technician Amazing throughout all the lands. I have a dream that one day she will be successively promoted to the position of Supreme Pharmacy Ruler and she will decree that it shall be illegal to provide any less than 270 tablets of ondansetron when the prescription says 270 tablets of ondansetron.

Probably won’t happen like that. But it’s okay to dream.