So, while I was in nursing school, Andy was still working at Skyward, and we had our health insurance through there. It was some solid health insurance, ya'll. And I knew how to work the ins and outs of managing our specifics, including rough time estimates and when to expect to have met our deductible. Nearing the end of the nursing program, I set up a half dozen appointments for August, knowing that I wouldn't have to work around my normal schedule for those.
...And then Andy got a shiny new job at Rivian. So, my thoughts in that moment went "Hooray!...dammit." So excited for Andy and his new adventures; I was simultaneously not looking forward to having to readjust to new insurance.
Two things: firstly, Andy's options were better than what was available to me at Carle; we did consider them. In one of my final nursing classes, the instructor was trying to give us collective advice on how to consider our insurance and made the assertion that persons with chronic illness should go for a particular kind of plan--yeah, most peoples' advice in these categories do not consider my actual circumstances, how the math is actually going to work out. Which brings me to point two: It's life and death for me. That is not an exaggeration.
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Let's walk through that process a bit.
Component A: I call each doctor I am expecting to see to let them know about the change. This involves waiting on hold, relaying the information including official start/end times and a couple of stops to the offices to allow them to scan the card after services, once the card has arrived. For my major medication, prior authorization letters need to be sent off immediately, in order to be approved. I also received a couple of calls needing additional information from my insurance that wasn't printed on the card, which led to led to more time on hold and another morning of back-and-forth phone calls.
Component B: Officially under the new insurance, meaning a whole new deductible to meet. The pharmacy tech takes my name and goes to find my prescription. They then pause, they go back to the computer, and they start to have a conversation with another tech sometimes. Other times, they'll ask if I have a second insurance. They apologetically and/or hesitantly tell me that my bill today is about $250. I say, "Yep," and pull out a credit card, explaining, "It's always this way before we hit our deductible." Sometimes I'll add "That's what the HSA is for." $250 for a prescription for me makes me say "oh, that's cute." I've gotten to a point where I interrupt the staff member at the pause, asking "Has insurance been applied? Yep, that's right then." I've had prescription pick-ups from Walgreens where one was $800 after insurance and another was $230, again after insurance. So when they say hesitantly that it's $100 today and asking if that's okay, I don't even blink. Historically, then, we hit our deductible and then out-of-pocket maximum by March, and it was either covered 100% or we only paid $20, depending on where the plan was. What else can I do? Say no?
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| Recent Explanation of Benefits Document Note the cost of the infusion is 15K, but the plan negotiated price is less than half. Prices are artificially inflated in our medical system in order to make the insurance rate look that much better. |
Component C: I call my doctor's office to ensure that I have a prior authorization before a minor procedure point. I had already had it approved for the old insurance. Now I had to call and ensure it was ready for the new one instead. My provider called back that afternoon, explaining to me that since I hadn't hit my deductible yet, that it would be full charge to the deductible amount. In my head, I'm saying, "yes, and water is wet," but I don't interrupt her. She finalizes her speech by saying what the overall cost would be, about $1.5K. I agree, and I ask whether they want that at the time of service or at billing. She asks that I pay half there that day. I clarify that a credit card is acceptable. My point of contact has been reassuring and gentle in breaking the news to me and in the course of my responses switched to mild confusion by my direct acceptance of the information. We always sprint toward the deductible. Always. And the last few plans we've sprinted toward the out-of-pocket maximum shortly after. If I'm going to survive, I have to be emotionally ready for that, able to spread out the fees or have it stored away in an HSA.
Component D: This is the big one, broken into multiple parts. This is the experience of managing my infusion medication when considering insurance processes in this switch.
D0: I have a medication that I get every eight weeks that is $15,000 a dose (it was $9K last year and $8K the year before that)--for easier math, I can make blanket statements like "I'm a minimum of $2,000 a week to keep alive," also considering that there are office fees and such, but the medication itself is $15K (see above). This is given at my doctor's office mixed in saline and delivered intravenously, billed as chemotherapy. So, yes, I get an IV started in my doctor's office, as I do not have those kinds of supplies at home without some creative stealing...nor do I see myself wanting to start an IV on myself any time soon. The majority of patients in my doctor's office that receive this mediation pull from the stock they keep there (there can be some really stupid insurance situations that have an extra hoop of procuring it and bringing it in).
D1: I am decent at reading insurance plans at the point. They go through the $16K test. I walk though how if I was covered under this plan or this plan that first infusion cost would work out. The best case scenario through my work offered insurance would be paying $3,200 each subsequent infusion after hitting the deductible, because only 80% was covered after that point and hit the out of pocket maximum of $12Kish. Andy's offered plan had us also hitting our deductible immediately, then some coinsurance until we hit the max out of pocket of $4,500 at which point everything is fully covered. Ya'll: I'm expensive to keep alive. Rivian offered a more stomachable out-of-pocket max. We're regrettably but thankfully well-prepared in our HSA.
D2: I began harassing both my doctors' offices and the insurance company with polite insistence. For a while, all I had were the numbers with no physical card to work with. After a couple of days, once our presence was finalized in the system, I was able to get an electronic card, which I was able to print off and take to respective offices around town, literally running this to various offices. And then there are multiple phone calls, sometimes actual hours' worth of phone calls. It takes a great deal of emotional energy to push through this. And it all needed to happen within the same two-week period to honor all of those upcoming appointments or reschedule everything around a new work schedule.
D3: I had roughly twelve business days to push through some approvals. No one feels the urgency that I feel in this space--my provider might have sympathy or empathy for me, but I'm the only one that suffers (mentally and physically) if we fail. Literal suffering, because my medication is delayed because my doctor's office won't infuse a $15,000 medication without having the prior authorization in hand because they don't want anyone to be on the hook for it unexpectedly. Since I've been on schedule for a while now, a day or two doesn't matter as much to me, but at other points, I was a special kind of exhausted at the tail end of the meds cycle, debilitated even--a day was everything. Once, a small piece missing on one form delayed my medicine for a week, at a point where I did not have the physiological reserves to adjust. Never again. I don't wait for a letter clarifying what's missing; I don't wait for my doctor's office to replay with confirmation; I'm on top of each step, ensuring that each piece is moving and that everyone has what they need to push through the paperwork.
Component E: Our deductible and parts of the refiguring will start over again in January. Everything starts again.
Component F: The prior authorization letters are good for one year, from the authorization date. At the beginning of this year, the insurance vendor for Andy's job switched from Blue Cross/Blue Shield of one state to Blue Cross/Blue Shield of another state. These are COMPLETELY DIFFERENT and required a whole new letter. This was not immediately clear in our household, and required some emergency scrambling two weeks before an infusion date.
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If we did not have the credit, the money saved in our HSA, or insurance coverage that meets our needs, I do not survive. Full stop. We would go into massive debt that we could never recover from or I waste away trying to stretch out my care needs. It's personal. It's terrible. These are numbers and situations that no one should have to get used to. And yet, here we are. It's infuriating.
The consequences of this, they are fiscal, sure, but emotionally taxing in some complex ways. Andy and I are aware that we will always need sufficient insurance coverage to protect me, which ultimately locks us into jobs. Whether we like our insurance-provided employment is irrelevant: we feel trapped, knowing that we cannot leave without significant safety nets or a new plan solidly in place. Any potential new situation, too, requires pointed queries into the nuances of all of the offerings. This weighs quietly but resolutely in every conversation with management, in airing any grievance or concern. I cannot quantify the grief and stress toll worrying about medical fees has wrung out of us over the years, literal days' worth of phone calls, tears, and all else. And when we factor how much is collectively paid out of paychecks toward insurance, taken out into the HSA, and paid separately, the amount is both staggering and painful, to think about what we might have been able to do with that, in a system that was not so rooted in exploiting people.
In other words, our current system robs us of life, liberty, and the pursuit of happiness under the guise of beneficence to those most in need. I would love to understand what it feels like to live in a world where Andy and I do not have to worry about this. I genuinely cannot imagine what it would feel like to not always hold that burden. I want that freedom for us and everyone, to know that if they lose their job they are also not at risk of losing their health, that one diagnosis or one small accident is not going to wipe out everything. Social determinants of health with related disparities, limited access to services, even the luxury of time when waiting to hear back whether insurance has decided they will cover services (which they may not have anyone with medical knowledge involved in the decision, by the bye), I see my patients go through the same struggles. More than once I have questioned the wisdom of involving myself in a career so close to my own pain points, but I find that the compassion I can express from it is important to have in those places.
It is a big problem, and I would rather try something than nothing. We all deserve better.
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