Praise then darkness, and creation unfinished

After multiple attempts to get information about this alleged copay assistance program, I have paid the (high) copay for the Kesimpta, so a dose will be here tomorrow. This morning, I tried chatting with an agent on their website, and the site logged meout in mid-chat twice, and the third time the agent just wandered away after I asked a question and I eventually gave up and picked up the phone. That also took a few tries, before reaching the right department, and someone who could actually see the chat logs from earlier in the day.

The combination of foot-dragging and contradiction about the copay assistance program leads me to suspect that there is no team working on payment assistance, and they're just trying to delay filling prescriptions. The insurance company requires me to use this specific "specialty pharmacy," and they're part of the same corporation, so it may not be in their interest to fill the really expensive prescriptions, depending on how much of that high price would eventually go to the drug company, rather than transferring money internally between Aetna and CVS.

This morning's round of contradictions was agent 1 saying they had been waiting for an ICD10 code, but were now working on finding me help, and agent 2 saying they needed that information and would reach out to my doctor about it.

The newest plot twist is that I got a phone call this morning from someone who said she was calling from the specialty pharmacy, that the copay was the same large amount they told me yesterday, and would I be interested in assistance paying that? When I said yes, it turned out the process from there is that she sends a message to someone, who will look into it and get back to me. (Last year, the drug company was covering my much smaller copays, but that program explicitly excludes Medicare.)

When I mentioned the call to Cattitude, he suggested I check to make sure it's legit. The drug company's website had nothing relevant. I then tried calling the pharmacy and got nothing useful, so I opened another online chat. The agent confirmed that this is a real thing, with the disadvantage that it can take a while. She said they have a team whose job is to look for foundation or other grants that might help, and then help me apply if they find anything. I'm on that team's list of patients to try to find help for, but there's a queue.

The current plan is that the delivery has been rescheduled for Saturday, and if I don't hear from them by Friday I'll postpone it a few more days. I'm not sure how long I should leave this for, and I may call the MS nurse and ask how long it's reasonable to wait for the next dose. (I think the most recent dose was Dec. 13th, because that was my last reminder in Google calendar, so I've got a couple of weeks, maybe more.)

I had been thinking that Kesimpta costs enough that I will definitely hit the annual out-of-pocket maximum, and that it doesn't matter much whether I hit that number in February or later in the year, but this might keep my total prescription drug costs for the year below the cap.

Pasting in part of the conversation with the chat agent:

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Tbis is, I hope, somewhere in process with CVS Caremark, but it feels like I've been pulling teeth to get that far. One Wednesday I got email saying that they had received the prescription, and I need to do anything, but giving a chat link if I had questions.

I tried that this morning. The agent said that the prescription was scheduled to be filled next Wednesday, and gave me a phone number if I wanted it sooner.

When I called, I discovered that they were trying to reach my doctor for some unspecified "clarification," but all the agent could see was that they had made at least one attempt to call my doctor. She suggested I call his office myself.

This was easier said than done. What should work--calling the MS clinic, and pressing "1" to talk to either Dr. Sloane (or Dr. Vanderhorst), didn't. The phone just rang until I got bored and hung up, this time after 10 or so rings.

What did work was calling the main number for the entire hospital, being transferred back to the MS clinic, and rather than pressing 1, waiting for a *beep* after the three choices, and then starting to talk. I was half a sentence into leaving a message when someone actually answered the phone. She asked my name and date of birth, and said she could send him a message. So I left one, asking them both to contact the pharmacy and to call me back.

The MS nurse is supposed to be back from vacation on Monday, and if I don't hear from someone by lunchtime Monday I'm going to call her cell phone, which is set up properly for people to leave messages.

I just got back from the neurologist's office, where the nurse showed me how to use the self-injecting pen with my new medication. It was all easy, but one thing I didn't know ahead of time is that I have to wrap my fingers around the device before using my thumb to push the button.

This is very different than the process with the first MS drug I was on, Avonex (an intramuscular injection, and a very visible needle. This is subcutaneous, and I never even saw the little needle. The nurse said I can inject it anywhere that's convenient. I'm going to either do the injections myself, or get cattitude or adrian_turtle to do them for me, but the nurse said she has a patient who comes in every Wednesday to have her inject the drug.

I then asked when/whether I need to contact the specialty pharmacy for refills; she said yes, and she'd advise doing it when I do the next injection, a week from now. (The first few doses are given close together, then it's monthly.) I also asked her if she'd heard from the disability lawyer about the forms for my appeal. She talked to the lawyer a week ago, but has not yet received the paperwork he said he was going to send. I am still waiting for him to answer my email, and think I will call him tomorrow if I don't hear from him first.

I just saw my new neurologist. I like him (as does Adrian, who came with me). Rather than arrange for me to have the twice-a-year Ocrevus infusions at his clinic, we're planning to switch to a related drug that doesn't involve infusions but monthly subcutaneous injections, usually done in the patient's home, and that doesn't stomp as hard on the parts of the immune system we want to keep. _That_ is the main reason I want to switch, not to avoid the infusions. Even better, Dr. Sloane says that the Ocrevus doesn't wipe out as much of the immune system as Dr AbdelRazek led me to believe. Vaccines are still useful, if not as useful as for someone who isn't on immune-suppressing drugs, and I do have antibodies in my bloodstream, though, again, not as many as without the Ocrevus.

It might be possible for the three of us to relax our covid precautions slightly, though I am making no decisions before talking to Dr. Koster tomorrow.

The new drug is called Kesimpta.

Also: Dr Sloane asked if I'd ever had a sleep study: it turns out that a lot of MS patients also have sleep apnea. When I said I hadn't, he offered to refer me for one, and I said I would think about it, after I see the pulmonologist tomorrow.

And apparently covid tests that use a nasal swab have a higher false positive rate in people on Ocrevus than in the population as a whole.

Dr Sloane also asked whether I was taking the gabapentin for pain, which suggests that he disagrees with Dr. AbdelRazek about whether my knee pain is neurological. I explained that I had originally been prescribed it for pain that my first neurologist thought was neurological, but that by the time Dr. AbdelRazek said MS doesn't do that, I'd discovered that I needed it in order to sleep.