Update: The medication is still working and my stamina is improving. I'm doing 20-30 minutes of Hatha yoga daily and am hitting the stationary bike up to a 12 mph clip and not feeling like garbage for days afterwards.
Next oncology checkup in mid-March.
The annual benefits selection and insurance is more involved and stressful when you are in the middle of treatment.
Before - I could just get whichever insurance fit my budget and worry about changes during the first appointments. Everything could be spread out during the course of the year and I didn't have to worry about anything falling through the cracks.
This year's process was wildly different.
October 2022 - Benefits Selection
- Pick through the documents for the existing insurance to make sure that my treatment was still covered (it was), the local hospital was in network (it was), key providers were in network (they weren't), and that the cost didn't change too much (it was 3x more expensive).
- Realize that we needed to change insurance companies.
- Pick through more documents across multiple insurance companies to find one where my treatment was still covered, the local hospital was in network, the CAR-T hospital was in network, my providers (at least the oncologist) were in network, and the rise in cost wasn't too terrible.
- Make a decision and cross our fingers.
My greatest fear - interrupting my Brukinsa / Zanubrutinib due to insurance issues.
You know that horror-movie trope where the victims talk about their greatest fears and the bad guy takes that information and uses it?
December 2022 - Get new insurance cards and start the change process
- Get cards in the mail
- Take front and back pictures of the insurance cards
- Send information to the oncologist
- Call new insurance company to see whether I needed to change specialty pharmacy providers. After talking to 5 people in 3 departments, we determined the answer was "no." Also informed that I need to call them on New Years Day for next steps.
- Call specialty provider and provide new insurance information.
January 2023 - Navigate the annual US Insurance Reset
- January 1 - Call insurance company pharmacy group as instructed. Told that I won't be able to get next steps until January 3.
- January 3 - Talked to 3 people in 2 departments, including one lady who kept telling me to "call my plan." Uh...I DID call my plan - who are you? After some back and forth, determined that she was the wrong department (outsourcing - for the fail). Re-navigated to someone who could help me. Still don't know where I wound up or how to get there again. Told everything was OK.
- January 3 - Talked to specialty pharmacy. Told everything was OK.
- January 4 - Got refill text as usual. No indication anything was wrong. Order to be filled January 6.
- January 6 - Came and went. This date seemed early and they had pushed things back before without telling me. I didn't worry about it.
- January 9 - Came and went. No pills. I was going to run out of medication on January 12
- January 10 - Called the specialty pharmacy. They inform me that they couldn't process my insurance. Usually, they call if there is a problem, so this was news. Determined it was the date and that they would re-process. Trusted that everyting was OK.
And here is where my attempts to avoid the panic calls and going full psycho project manager prove that they were for naught...
January 11, 2023. I run out of pills on January 12.
- Called the specialty pharmacy to follow up. After talking to 3 people, they finally managed to get a claim attempt and discovered that they couldn't process the claim despite having the Prior Authorization from my oncologist. They inform me that it has to be from the insurer.
- Called the insurance company - of course being sent to 3 different departments - they inform me that the Prior Authorization is missing. I know the oncologist sent the Prior Authorization.
- Called the specialty pharmacy. Informed that they have the Prior Authorization from the oncologist and that they can't submit it like they do for most plans, they have to get it from the insurer.
- Called the insurance company - get clarification on what needs to happen to expedite the Prior Authorization. Told that it would take 24 - 72 hours.
- Called the oncologist - gave instructions given to me by the insurance company and that the Prior Authorization was missing.
- Called the specialty pharmacy pharmacist to determine the ramification of me missing doses.
- Called the insurance company to follow up on the Prior Authorization. Put my deep-voiced male partner on the phone and had him do it since I was about to go into full meltdown mode and also figured that an angry male voice would be more likely to make progress.
- Had my partner call the oncologist's office. Told that they were working on it.
- Waited 2 hours.
- Get a phone call from the oncologist's office manager. After some discussion, she finally realized that they had sent the Prior Authorization to the pharmacy and not the insurance company. The oncologist's office manager is awesome - so I knew this would be taken care of.
- 6:00pm - Received notification from the insurance company's specialty pharmacy prior authorization group (outsourced, of course) that the Prior Authorization was approved.
- 8:00pm - Received notification and a tracking number for my medications.
January 12, 2023 - I received my package with my meds. I had 1 dose left.
It is telling that in each step of this "process" - something got dropped. A date going unchanged. Prior Authorizations being routed to the wrong place. Unsent phone calls. Phone calls to the wrong place. Unclear instructions all around.
An entire day spent between me and my partner unraveling the yarn to get to the "I get my meds and don't have to skip a dose" result. This despite me trying to ensure I didn't have to go through what I went through on Wednesday.
Serves me right for trying to be pro-active.
It's scary that it is even unclear to those who work within the environment (I hesitate to call it a system) aren't entirely sure where to go and who to talk to. Simple questions such as "Is Dr. X in-network?" are hard for those who should know to answer.
It's scary that entire businesses now exist to help people navigate all this - from 3rd party patient advocates to "hire a Karen."
It's scary that I have to sic my male partner on some of this because I don't have an "authoritative-enough" voice.
I'm not even sure I have a lesson that I can take away from this experience other than to gird my loins for more of the same in January 2024.
I'm just grateful that I'm healthy enough to even navigate all this.
Even if it feels like something I shouldn't have to do.