Please Hold

Before I had kids, I worked in a bank doing customer service and sales. It was awful and I had a terrible flare that medication couldn’t fix and ended up on disability leave, until eventually quitting when my leave ran out. I spent several years in college as a hostess, and about six months folding shirts at the Gap. So, when I say what I am about to say, please know I am familiar with customer service work and empathize with the folks who do it for a living.

Having said all that, most healthcare customer service reps can eat shit. The entire staff of every gastroenterologist I’ve ever had, the specialty pharmacy that ships my shots to my house, and worst of all — health insurance customer service. Obviously, in a lot of cases these people are just the messengers for shitty policies and can’t help that their bosses are also shitty, but for the sake of having someone to blame, here we are.

There is a very special concierge service through my health insurance for people with a serious diagnosis called Nurse Consultation. There are nurses who will chat with you all hours of the day if you have concerns, and if you don’t call them, they will call you once a quarter to talk about your health. At first, I felt taken care of and comforted by the phone call that seemed like a helpful check-in. But after the third call it became clear the nurses are not assigned patients based on their specific knowledge, since the third nurse asked me to explain Crohn’s Disease to her. I have an incurable disease that I have to think about every day. I see multiple doctors, nurses, administrative staff, and pharmacists on a regular basis. Please do not call me to share your complete lack of knowledge re: my every day saga. I once asked the nurse an actual medical question and she said, “I don’t know, can you Google it?” and now I am on the Do Not Fucking Call Me Ever Again List.

Behold my collection

I got a new prescription for the same drug I have been taking for over five years (each prescription is only good for a year) and since the moment it was sent in to be filled, the entire healthcare system has broken down all around me. I’m getting calls from my insurance company, from the pharmacy, from a second pharmacy that got the prescription from my doctor in error, from my doctor, from his assistant, and from a nurse who works at my insurance company just for good measure. Looks like there has been a gap in your medication and now we can’t give you any more because maybe you forgot how to take it. There has been no gap, the last prescription was mistakenly written (by an imbecile) for double the amount so it lasted me twice as long. This strange change in events has caused us to forget all your insurance information! I have had the same insurance and the same specialty pharmacy for four and a half years. Okay have a nice day. Wait, am I getting more? Maybe! Can you tell me when? Nope! Thank you for choosing our pharmacy byeee! I didn’t choose you! You were assigned to me by my health insurance company! Click. &%$#@

Every time I have to call my doctor, I am reminded of the Seinfeld episode where George has to pay to cancel a doctor visit, but the next day when the doctor blows off work to go skiing, she doesn’t have to compensate him, and he rants about the disparity, calling the doctor a “delicate genius” whose time is so much more valuable than his own. Doctors do invest a lot of time and money into their position and should be valued for that, but when they fill their office with incompetent staff, what is the point? In many cases, the doctor himself is fairly incompetent and in order to get a real visit and actual medical solutions, you need to meet with their Physician’s Assistant. The PA actually reads your file and makes suggestions that lead me to believe they have some knowledge of my case. They distill my information into a brief summary for my doctor, who promptly ignores it and spends my whole appointment staring at my file and asking me which disease I have.

I switched doctors last year because the last one was so abysmal he couldn’t be saved by his hard-working PA. The new guy was recommended by the Crohn’s and Colitis Foundation of America and I had to jump through numerous flaming hoops to get onto his books This guy is such a big shot he requires references from other gastroenterologists and you have to have already been diagnosed with a substantial illness, so don’t bother applying if you just have something boring like indigestion. After all the effort I put in to get an appointment, the pandemic hit and my first visit, booked months out, was over the phone. Now, none of us are at our best on the phone, but this guy absolutely needs a hearing aid, and he had at least one other person on the line to take notes for him. Delicate genius, indeed. I had to repeat every sentence in my lengthy medical history, and at the end he asked me what my diagnosis was, after several minutes of talking about my Crohn’s Disease. Then, the truly alarming part: he had never heard of my medication.

I take Humira, and if you’ve ever watched television you have seen commercials for it. It is prescribed for rheumatoid arthritis, psoriasis, ulcerative colitis, and Crohn’s Disease, among other things, and their commercials are everywhere. It is one of the main drugs used to treat stubborn Crohn’s Disease and Ulcerative Colitis that hasn’t responded to simpler meds, and my doctor who specializes in those diseases has never heard of it. I was diagnosed at the very end of 2008, and having had experience with numerous doctors since then, I’ve tried to become an informed patient so I am prepared to answer my doctor’s questions quickly and efficiently, as I know he sees a lot of patients every day and I want to make the most of my time in front of a medical professional. My time is also very valuable, and after getting all my kids to school and daycare and driving forty-five minutes to the doctor’s office, I want to make sure I get the most out of each appointment. So when my virtual appointment was two and a half hours late, I already knew it was going to be bad.

After slowly and clearly spelling out my medication, dosage, pharmacy information, current symptoms, reason for taking this specific drug (the long list of drugs that had failed), how long I had taken it, and side effects I experience, I hear the assistant say, “yeah yeah I got it.” I was feeling pretty good about sorting this out three months before I would officially run out of medication, until I called in January to get my meds delivered and surprise! No prescription existed. I called the doctor in a panic and after waiting two weeks for a reply, they resent the script. To the wrong place. Again. The end of my meds is rapidly approaching at this point, so I call yet again and confirm that there will be a prescription sent ASAP to the correct pharmacy or else I will run out of medication and end up in the hospital.

The pharmacy called to tell me they had received a prescription but couldn’t fill it, could I please call my doctor? He wrote “syringe” but it’s a pen, like an EPI Pen, so the pharmacy couldn’t ship anything to me at all until that was sorted out. Having painstakingly gone over every detail of this medication, including several explanations for how it is administered, I felt like throwing my phone into the garbage disposal and flipping the switch. I called the doctor, waited a couple days for the return call, at which point the assistant asked, “so… is it an infusion? What infusion center do you use?” MOTHER&%$#@!#$^%.

Now, I suppose I understand why I can’t just call a specialty pharmacy, place an order myself, and bill it to my insurance company, but this is absolute anarchy. With some exceptions, including my father-in-law who is an excellent doctor, medical staff DO. NOT. LISTEN. TO. PATIENTS. I gave these clowns the exact phone number and address for my pharmacy and that asshat had the nerve to give me a “yeah yeah I got it” when he AIN’T GOT SHIT. Now, after a zillion phone calls sorting out the pharmacy, the pen vs syringe, the “gap in treatment”, and re-entering all my insurance information, I got one month’s worth in the mail. Neat. So even though the prescription is for a year’s supply, my insurance won’t give me more than a month at a time because it’s “new” but it is ABSOLUTELY NOT NEW and I’m super excited to have all these same conversations with new customer service people again in like three weeks.

There is a very special concierge service through my health insurance for people with a serious diagnosis called Nurse Consultation. There are nurses who will chat with you all hours of the day if you have concerns, and if you don’t call them, they will call you once a quarter to talk about your health. At first, I felt taken care of and comforted by the phone call that seemed like a helpful check-in. But after the third call it became clear the nurses are not assigned patients based on their specific knowledge, since the third nurse asked me to explain Crohn’s Disease to her. I have an incurable disease that I have to think about every day. I see multiple doctors, nurses, administrative staff, and pharmacists on a regular basis. Please do not call me to share your complete lack of knowledge re: my every day saga. I once asked the nurse an actual medical question and she said, “I don’t know, can you Google it?” and now I am on the Do Not Fucking Call Me Ever Again List.

In the midst of all this, my Nespresso machine started leaking coffee all over my kitchen counter. I called customer service, who walked me through some checks and possible fixes, and when those didn’t work she sent me a special box with packing materials for my machine and scheduled a free doorstep pickup to ship it to the team that fixes coffee machines. It will be back in my possession in 7-10 days. Now, she did try to sell me some new coffee while I was on the phone, but that isn’t something I’d recommend for the medical folks.

“Alright Mrs. Davis, we are shipping you three months worth of Humira, but before you go, can I interest you in some Norco?”

2 thoughts on “Please Hold

Add yours

  1. I have never found anything that so perfectly captures the Circle of Hell that is trying to get specialty medication through these “specialty pharmacies.” Why is such a high stakes operation so uniquely incompetent? I have PTSD from accidentally waiting too long to order a refill (loved going through the process as a “new patient” for medication I had been on for 10+ years) or the time I had to get a replacement order when my shipment was delayed and the ice packs had melted. And I still don’t understand how the “copay card” system works — I’m convinced I’m going to wake up in 5 years owing someone thousands of dollars. I am fortunate to have finally found a good rheumatologist for my RA but my jaw hit the floor when your famous doctor hadn’t heard of Humira. (I’m a Humira newbie this year, after many years on Enbrel). From another spoonie, this blog was cathartic!

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