From the Mind of Trevor Stone

My employer-sponsored health plan has a "specialty pharmacy" insurance which is separate from the ordinary pharmacy benefits. Painkillers for surgery post-op, antibiotics when you're sick, prescription NSAIDs for chronic inflammatory disease, and all those other medicines that come in an orange plastic container are reliably dispensed by my local King Soopers pharmacy with what I would describe as a high level of competency. Other than "we haven't filled it yet, can you come back in an hour" I haven't had any problems acquiring or paying for any of these medications for fifteen years.

The "biologic" disease-modifying drug I take for psoriatic arthritis, on the other hand, is considered a "specialty medication" which means it's paid for by CVS Specialty Insurance, filled and delivered by CVS Specialty Pharmacy, and picked up at my local CVS Pharmacy. Despite all having the word "CVS" in the name, as far as I can tell they're three separate entities who are almost incapable of coordinating with each other.

Drug manufacturers have learned that they can charge a lot of money for biologics. But if they charge too much money, patients with a 10% copay will balk at the price, avoid filling the prescription, and the drug company will miss out on the other 90% that would've been paid by insurance. So they came up with a way to hack the U.S. health payment system: offer patients a "co-pay assistance" card, which is basically a persistent coupon lowering your out-of-pocket costs to almost nothing. Patients will then keep filling the prescription because it's basically free, leading to something of a principal–agent problem where the person making buying decisions has no incentive to consider the cost of the item. My employer ends up footing the bill, but I'm only annoyed with this situation in principle: in practice I get free drugs. (My employer benefits too, because I was not very productive when my symptoms were causing problems and I wasn't taking the drugs.)

In late January or so of this year, I received notification that starting April 1st, our CVS Specialty Insurance plan would no longer cover Humira—the name-brand adalimumab—and would instead be covering Hyrimoz, a cheaper generic adalimumab. This seemed like a bit of an unfair move, since employees can only change decisions about health care plans near the end of the year, but as a fan of generic medicines this seems like a sensible choice. However, although this change was announced in January so people could start worrying about it, we couldn't actually take any action like getting a doctor to change prescriptions for more than a month. Come mid-March I called CVS Specialty Pharmacy to fill my new Hyrimoz prescription, but was told that since CVS Specialty Insurance didn't cover it until April 1st I couldn't actually place an order until April (including "place an order in March for April delivery"). This was rather inconvenient, since I was leaving town for two weeks starting April 1st and didn't want to spent my road trip vacation arguing with pharmacy customer service people when things would eventually go awry. The customer service rep did inform me that I could set up the co-pay assistance card in advance, though. After several attempts to use the drug manufacturer's website that had some technical hot mess I can't recall, I finally got a PDF that had two sets of discount code numbers on it, one "for NDC starting with 61314" and one "for NDC starting with 83457." As a health insurance policy holder I still have no idea what NDC stands for, nor how I would figure out which of those two apply to me. I relayed this to the person at CVS Specialty Pharmacy who suggested she take down both sets of numbers and put them both in their system so they could figure it out once the prescription actually gets filled.

Come April I was able to order a 3-month supply of Hyrimoz, plus a bag of alcohol wipes and a sharps container. I was somewhat surprised that the medication was delivered without much issue, given my prior experience of organizational incompetence ordering Humira. When I tried to pick everything up, though, the retail CVS Pharmacy folks were getting some indication in their system that they shouldn't hand over the sharps container and alcohol swabs, so I walked away with a couple thousand dollars of medicine and not ten dollars worth of common medical supplies ¯\_(ツ)_/¯ (It only took a day or two for them to realize I could take a sharps container to dispose of the future medical waste they handed me the previous day.)

A few weeks later, someone from CVS Specialty Pharmacy billing department called and informed me that I still hadn't paid my copay for that order. I was surprised, since I'd given them all the information on the card which claimed my copay would be zero dollars. I think we discovered that there wasn't a card on file, so I gave both sets of numbers again and the rep said she would rebill. Problem solved? Hardly. I don't recall the exact timeline, but when I attempted to refill the prescription in the early summer I discovered it was on hold because the prior order hadn't been paid. So I called CVS Specialty Pharmacy; we went through the numbers again, and she determined that based on the diagnostic code from CVS Specialty Insurance the code for the wrong NDC was in their system and she didn't have the other code, so I re-provided all the digits. After some time on hold she confirmed the order had been rebilled.

So imagine my surprise this weekend when I was sorting through an accumulated pile of mail and discovered that the charge from April had been sent to collections. I called CVS Specialty Pharmacy this morning, and pointed out they had a discount card on file. The representative said they would rescind the bill from collections and rebill insurance. Will CVS manage to pay itself this time? Who knows! The two companies seem to share the same name but otherwise lack the ability to communicate effectively.

Payment aside, order fulfillment and delivery is also a comedy of errors. In early September I received a text message from CVS Specialty Pharmacy that said my prescription was ready to be refilled, but when I went to CVS Specialty Pharmacy's website it said I couldn't refill for another week and a half, and once that time passed I could only schedule delivery for another week and a half later. When I arrived at the retail CVS Pharmacy I was handed a large paper bag that was wet and soggy on the bottom. This contained a cold bag with three ice packs and a single box of medicine, 90 alcohol swabs, and three sharps containers. It's unclear to me whether the Specialty side (which distributes this temperature-controlled medication from a warehouse somewhere) or the retail side (which keeps medicine in the refrigerator until I pick it up) were the ones who decided to keep sharps containers and alcohol swabs should be kept refrigerated, but I'm quite glad I didn't pick this one up on a bicycle commute day because that bag was a wet mess. More importantly, I was rather miffed at CVS Specialty for taking my "Please send me three months worth of medicine, alcohol swabs, and a sharps container" into one month of medicine, a year's worth of sharps disposal, and three years worth of swabs. The order sheet says "2 ml" of Hyrimoz, and each box contains two 0.4 ml pens, so it would take two and a half boxes to match two milliliters of medicine; I only got 0.8. I attempted to call CVS Pharmacy retail about this problem, but every attempt to use their phone tree's "Leave a voicemail and we will call you back" feature resulted in the computer voice saying they were sorry. So I stopped by the pharmacy in person to tell them (1) file a ticket to get your phone system fixed and (2) you didn't give me my whole order. The pharmacist explained that they could view and dispense CVS Specialty Pharmacy orders but couldn't do anything else like investigate why it was wrong, so she gave me the phone number for Specialty. You guys are both CVS Pharmacies, why can't your computers talk to each other? Another call to the other CVS turned up the fact that two prescriptions, one for a one-month supply and one for a three-month supply, were both in the computer system, and the system automatically selected the first and billed insurance for it. She said she put a note on my record to do the three-month supply next time, and assured me that I would be able to place that order in October. I've a rather sneaking suspicion that they'll manage to fumble something again and I'll have to take another adventure through their customer support lines to convince their computer that I'm eligible for more drugs before December. (I discovered my previous order sheet this evening which says it was filled for 6 ml, which would be a 10 week supply rather than a 6 week supply. I guess I shouldn't be surprised that CVS Specialty can't even get arithmetic right.)

I wonder if it's occurred to the folks who run my company's benefit plan that I'm not doing anything productive for the company if I spend half a day getting derailed by systematic incompetency every few months.

As previously mentioned, I started the year with an autoimmune attack on my eye. This occurred after a month of over-extension: after a long day at work, I'd come home and spend a bunch of energy planning a trip to Australia and New Zealand, then not get a lot of sleep before doing it all again. The first sign of autoimmune inflammation, though I didn't realize it at the time, was soreness in the arch of my right foot. I chalked it up to old orthotics and added new boot inserts to the trip shopping list. I'd also been using a standing desk at work for two months in an attempt to reduce sitting-induced back pain and see if reduced slouching helped my esophagus's acid problem.

My eye recovered fully and my vision is back to 20/15; the only sign of the attack is a small "battle scar" blip on the iris. The only autoimmune blood test that came back positive was HLA-B27. This wasn't too surprising, since it's linked to ankylosing spondylitis, a condition which led to my uncle's fused spine. This antigen marker led to a referral from the eye surgeon to a rheumatologist.

After getting help from my parents to figure out all the causes of death in my family history, the first rheumatology appointment resulted in a diagnosis of psoriatic arthritis (a relative of ankylosing spondylitis), a prescription for meloxicam as needed, an NSAID (similar family ibuprofen, but with longer duration and more powerful per milligram), and instruction to get x-rays of my spine and pelvis. The x-rays showed signs of calcification of my spine and SI joint, so I had another rheumatologist appointment to talk about chronic disease management and treatment options. Basically, my immune system works too well, so it attacks various parts of my body like joints, skin around my scalp, and occasionally my eye. Biologics are the big-gun drugs for autoimmune diseases, which are expensive and increase the likelihood of serious infection. They sound pretty scary, so I decided to focus on "diet and lifestyle" and NSAIDs for a while to see how far I can get with adjusting my environment and routine.

So yeah, that was January. I averaged a health-care office visit every other day, but by the end of the month I wasn't feeling too bad. In February we spent two weeks in Maui, where I was able to do low-impact activities like snorkeling, scuba diving, hiking, mini golfing, and hanging out on the beach. Eating was still a bit of a challenge: the acid reflux and esophageal challenges in swallowing that were my main health problem in 2015 persisted, so there were a lot of rather slow meals. Then, half way through the trip and the day after a hike on the wet side of the island, I started to feel a bit sick, maybe a mild viral or bacterial infection. That night I had a crazy intense acid reflux experience, preventing me from sleeping all night. Around 3:30 I took a famotidine (Pepcid) pill that I'd been prescribed but hadn't really used. Two and a half hours later, we got on the ferry to Moloka'i. With only a few thousand residents, no stoplights, and a laid-back culture, Moloka'i is a great place to feel crappy. I started feeling better, and acid issues started to fade. Remarkably, I've had hardly any acid reflux in the three months since returning, though I've still got some swallowing challenges.

My mom gave me a copy of The Anti-Inflammation Zone by Barry Sears, the creator of the Zone diet. The book explained, to a moderate degree of satisfaction, how pro- and anti-inflammatory responses work (arachidonic acid versus eicosanoids and other long Latin names). Sears's primary recommendations, repeated over and over, are the Zone diet and high-dose, high-purity fish oil for EPA and DHA. I found his discussions of the diet kind of annoying, particularly since his extensive biography wasn't footnoted from the text, so I couldn't tell what was part of the diet plan because of sound science and what was present arbitrarily. The fish oil recommendation, on the other hand, seems to have solid science behind it. I've been taking fish oil for a couple months, currently around 2 teaspoons per day (~3 grams of ω-3 fats), and eating salmon and herring whenever I get the chance. The EPA doesn't seem to have done much for my foot/ankle/SI joint inflammation, but my psoriasis symptoms seem to have improved, perhaps from the DHA. During the winter I was drinking a lot of homemade chai, with the goal of increased intake of the anti-inflammatory ginger and turmeric. I even brewed a tamarind turmeric galangal brown ale. Keeping a crock pot of warm chai has been less appealing as the weather has gotten warmer.

I've been back and forth on the meloxicam. The side effects so far haven't been too bad&endash;mostly mild dehydration from my kidneys working hard–but stomach issues and intestinal bleeding are possible. When I take it for several days, my ankle/foot pain is a lot less, and I think it may help my esophageal troubles. After taking it all last week and experiencing very few choking incidents, I stopped taking it over the weekend. The last two days have featured moderately increased foot pain and some distressingly intense swallowing problems (leading to unpleasant regurgitation), so I'm taking the drug again in the hope that my eating challenge can be addressed by reducing inflammation.

Emotionally and intellectually, I've been adjusting to a lifestyle focused on eliminating stress, reducing voluntary commitments, and enhancing physical health. My natural tendency is to overcommit and prioritize tasks over sleep, exercise, and hygiene. That's a good recipe for accumulating inflammation, so I'm learning to say "no" and prioritize my own health over being helpful all the time. I've also been riding my bike (yay springtime!) and more regular about stretching on the floor and not sitting still for hours, though I've been in basically the same position in my hammock for the last two and a half hours of blogging. The nice thing about chronic illness is that if I don't do things right today, I can get back on target tomorrow.