This is what I had to go through to get my Rheumatoid Arthritis medication reinstated post-COVID, and the costs in time, money, and pain
Starting point: I have been on a cocktail of four medications for rheumatoid arthritis, each one for between 3 and 13 years. Refills are relatively automatic; I occasionally have to go in for some blood work.
February 14 — I refill my medications online, as per usual. The normal price for a four week supply of Actemra is $2600 (all prices quoted in this article are in USD). This is the pharmacy trip I hate to make every year as I come out $3000 poorer because it is the first trip I make in the calendar year after the deductible rolls over. But then I don’t have to pay anything else for any medical treatment for the entire year. That is because private insurance in the US has something called a catastrophic cap or “out of pocket maximum.” This is the point at which you no longer have to pay anything. My out of pocket maximum is $3000/year, which is quite low. For some people, their family caps are $15,000 per year or higher. Our crappy insurance system in the US forces me to sock away $250 every month so that I can make this enormous payment once a year without going into debt. I am privileged to be able to do so without having to make the “Sophie’s choice” trade-off between medication, rent, utilities, or food that so many people are forced into that sometimes directly causes their deaths.
February 21 — I go to my regular Kaiser pharmacy to pick up my medication. Two of my refills are ready; two are not. This happens all the time as Actemra is a special order. It’s a 90 minute round trip from my house to the pharmacy, they won’t ship it, and frequently I have to make this trip two or three times. The thing that is unusual about this trip is no one can tell me why I don’t have the refills or how long it will take. They ask me to call the phone number that no one ever answers to check before coming back in. Since my insurance only allows me to have a 30-day supply of medication at a time, I will run out in less than a week.
February 24 — I reach out to my PCP and Rheumatologist online. I am told that Actemra and Plaquenil are being reserved for COVID clinical trials, and all patients with RA taking these medications have had their refills suspended. Some Kaiser members received emails, but somehow, I didn’t. They give me precisely zero options for where to go from there.
mid-April — No updates from anyone, ever. My pain levels start to creep up since I’ve been off the meds for more than six weeks. Because my pain levels are up, my activity levels drop. Because my activity levels drop, I start to gain weight, and my insulin resistance increases — to the point that within two months of going off the rheumatoid arthritis medication, I am taking 50 % more insulin for my type 1 diabetes than I usually do. Once you have one autoimmune condition, you are prone to get more. I have three 🙁
mid-May — The mad rush for Plaquenil, which was fueled by President Trump’s public statements that he was taking it combined with other unsubstantiated nonsense, is over. I manage to get the Plaquenil prescription refilled. There are supposedly 26 million doses now in storage. I am sure most of it will end up in a landfill when the expiration date hits. However, Plaquenil wasn’t the medication that helped me the most, Actemra was. Because I’ve been off Plaquenil for ten weeks, I am effectively starting over. It will be six weeks to six months before it starts working again.
June 1 — My pain levels are getting increasingly worse. When all my medication is working, I usually wake up with a pain level between 2 and 3 out of 10. Now I am at a pain level of 5 to 6 every single morning, and six is where I start to get non-functional. I give up on Kaiser ever doing anything for me, and call a rheumatologist that I have previously seen in a non-Kaiser practice. $280 later for the appointment and probably another $225 or so for the bloodwork, I have a video appointment scheduled, but not for almost three weeks. The blood work is usually billed at $1800, which is what people without insurance pay, but is heavily discounted for me under my insurance contract.
June 19 — I have my appointment. The non-Kaiser rheumatologist makes it clear that none of *her* patients have had to give up their rheumatoid arthritis medications and that this was purely a Kaiser decision. Kaiser patients without second insurers are screwed, but I will eventually be OK. She starts the prior authorization process necessary to fill my Actemra prescription through my second insurer. I am again privileged, this time to have double coverage since my husband and I both work in tech. She also registers me in the RA patient COVID tracking study, which my Kaiser rheumatologist didn’t bother telling me even existed.
I reach out to my insurer to find out how I fill the prescription once the prior authorization is approved. They tell me medications are a carveout on my plan. All prescriptions like Actemra are handled by a company called Caremark. Depressingly enough, Caremark is owned by CVS, who also owns Aetna, a different insurance company — conflict of interest anyone?
June 22 — My non-Kaiser doctor’s assistant calls, she says everything is set with Caremark. I am not allowed to go to a random pharmacy — not even CVS — and ask them to order it. I am told to wait, and it will magically arrive on my doorstep. This makes me nervous because waiting for the right thing in healthcare has rarely worked for me. It turns out this is true for this case as well, or this story would end here.
June 29 — After not hearing from anyone for a week nor receiving a shipment, I start to make yet more phone calls. CareMark admits they botched initiating my request on their side, because I had a previous account with them under my maiden name (which didn’t match the last name on the prescription), and oh yeah, they have trouble with hyphens in last names in their software. “THIS IS 2020 people, wake the f*** up,” I want to scream into the phone. So after multiple conversations with Caremark, each with *long* hold times, I am told everything is fixed, *except* I need to call Genentech to get into a “copay assistance” program or every Actemra delivery will cost me more than $500.
June 30 — Another half hour of my life I’m not going to get back, repeating all the same info I gave to my Dr and Caremark, this time to Genentech. None of the systems in the six different organizations I’ve spoken to so far are integrated.
July 2 — Genentech calls me back with the #s I need for CareMark. They end the conversation strangely by saying, “if Caremark tells you it’s not enough numbers, tell them that’s all they need.” I call CareMark for the fifth time; they tell me, shocker, it’s not enough numbers. The woman at CareMark (who is honestly lovely, I’m not blaming her, it’s the system I am flaming) says she will call Genentech to sort it out. But she still can’t tell me when the medication will ship.
July 3 — Robocall from Caremark at 8:15 am on a holiday. Sigh. I return the call and talk to another nice person who says he “can’t find my file” and will call me back. Three hours later, he calls me back saying everything is fine, and the copay has been reduced from over $500 to just $5. But, he can’t ship the drug, I have to call ANOTHER phone number to arrange for that. I do that, and after many minutes on hold, get disconnected. I wish I could say that was rare, but the only uncommon thing in the 17 phone calls I’ve made so far is that I haven’t been disconnected while on hold before this.
So I call again. After 15 minutes with the customer service agent frequently popping in on the call to say “sorry this is taking so long,” we determine that neither he nor his supervisor have been trained on how to process an Actemra shipment. I need to call another number and talk to another person. He gives me the number and tells me he will transfer me. Ten minutes later, he comes back on the line and says they trained him on how to process the Actemra shipment. He also adds that I should destroy the phone number he gave me because it is an employee-only number that he shouldn’t have given out. He then proceeds to ask me a number of really intrusive and redundant questions. If the CareMark system was integrated with the doctor’s office system, they would HAVE all these answers already.
They set me up to pay the $5 online, and I’m supposed to receive a text message in 2 hours with the UPS tracking number. The claim is I now have finally completed the process, and I will be receiving it on July 8. I’ll believe it when I see it.
July 6—No text message received — shocker. I’m too busy after the holiday the previous Friday to get a one hour block of time to dedicate for the 19th conversation, so it will have to wait until tomorrow
July 7— I call back for a 19th time, go on the standard ridiculous hold (the music is now an earworm in my head, I’ve spent so much time listening to it in the past two weeks). I get transferred to a pharmacist. Again a lovely person, who only understands what she does and not any other piece of the puzzle. Apparently, the other nice person on Sunday mis-typed one of the medications I was on, so she was required to confirm it. My order didn’t ship, it was on pharmacy hold. But I didn’t know that because no one told me.
I asked her what would have happened if I hadn’t called and her uninspiring reply was “I don’t know” followed by “you should have gotten a phone call I guess.” She knows nothing about why I didn’t get a phone call, and didn’t get the promised text message. I’m sure as heck not investing another 30 minutes of my life to find out from the main number that she can’t transfer me back to.
It’s supposed to ship tomorrow.
But I have heard that before.
- I have gone 125 days (over four months) without having access to the medication that kept me functional for the previous three years. As of the day I am writing this article, we are ironically the same number of days (125) from the November election. That makes me feel slightly better emotionally, if not physically. Voting, and encouraging others to vote, is all I can do to ever help improve this abysmal situation.
- I am in so much pain I am borderline non-functional. Some days I do all my work without leaving my bed. CBD helps some, but I only take it at night. I can’t take NSAIDs because they trash my kidney function and give me tinnitus to the point I can barely hold a phone conversation. My sense of humor has gotten so dark over the past four months that I’ve had multiple co-workers privately inquire if I am OK. I tell them yes. But I’m not OK, not by any stretch of the imagination. I am, unfortunately, very accustomed to being treated by the US healthcare system as I am not worth bothering with via convoluted and expensive steps and barriers throughout the entire process.
- I have been offered ZERO in alternative treatments from any of my medical providers. I am open to any suggestions in the comments that don’t involve essential oils, raw diets, or thinking positively.
- I am more than $500 out of pocket for outside treatment, the only purpose of which was to get reinstatement of medication I was already taking. This is purely because Kaiser, who provides most of my care, is such a scumbag organization. I would have been an additional $500+ out of pocket if Genentech didn’t have a copay assistance program that I happened to qualify for.
- I am still taking 40 % more insulin than usual. Hopefully, that will drop after the Actemra starts working again in 6 weeks or so. At $300 a bottle, if I didn’t have insurance, that would be another $3275 for the year. Someone is paying for this wasteful usage of insulin. But it isn’t me, because I’ve hit my maximum out of pocket cap on two independent health insurance plans for all of 2020. This is the first reason why the price of mediocre healthcare in the United States is so damn high. They passed a law in Minnesota, in the name of a 26-year-old who died from rationing insulin because he couldn’t afford his refill. It hasn’t taken effect yet because “Big Pharma” is trying to block that law in the court system.
- The time investment is ridiculous.
- Four hours and 27 minutes on the phone on 19 separate phone calls over a two week period of time.
- Three hours in the car.
- Fifty-five minutes for appointments and lab work.
- Forty-five minutes online with email, filling out paperwork, medical records transfers, paying bills, etc.
Yes, I’ve kept track. This is the second reason why the price of mediocre healthcare in the United States is so damn high. (note: someone pointed out to me on LinkedIn after this article was published that if my deaf daughter was struggling with this you could double or triple the amount of time it takes to do this via a relay service).
- Someone had to be paid to be on the other end of the 19 phone calls I made.
- Someone had to process the monster manual records request, the copay subsidy paperwork, and the prior authorization, down to double-checking the spelling on “Atorvastatin” and holding up my order because someone typed it wrong.
- Someone has to pay for the doctor’s appointments, lab work, and extra insulin that I wouldn’t have needed if people just did their freaking job!
More than 30 % of healthcare costs can be directly traced to administrative costs that would NOT exist if we had a single-payer system.
If this story doesn’t convince you that #SinglePayerNow is the right option, I don’t know what will.
This is the Disability Tax. This is time, money, and effort *I* have to expend because I have a disability. Every person with a disability that you know, and especially parents of children with disabilities, continually pay this tax. This system is not set up to benefit people with disabilities. Someone without my resources probably would have given up partway through, to the detriment of their health and to the benefit of the for-profit insurance company and their shareholders.
Ultimately, the people who really pay this tax are you, the general public. The insurance companies fatten their wallets and their dividends by denying care, and many of the people with disabilities end up being so unwell from going without treatment they go on federal support systems — SSI and Medicaid being the two most common. I hope to never get to that point, but I know people who have. We can fix this. We know what the fix is. But the politicians in power are firmly in the back pockets of the insurers, and not the people they are supposed to be representing. Make a change.