Sick Again, part 5: The System
Here’s a picture of what I saw when I logged into Caremark one day: my copay of $30 displays as 0% of the total cost, because rounding errors. Luckily this isn’t the normal monthly cost, just first month; during the first month you take a higher dose that costs more. After the first month it will be “only” $5,000 monthly.
In an earlier post, I explained that biologics are both extremely expensive and a commitment - when you stop taking a biologic, you build up antibodies against it, and it will never work for you again. If you want to keep it as a treatment option, you have to stay on it continuously.
So, like, these two facts about biologics don’t mesh great, right? I have what is essentially a $5,000 a month addiction.
Obviously losing my insurance would be a disaster. I am also precisely the kind of person that insurance companies do not want to cover. In my best case scenario year in which I have no health events of any kind I still cost them tens of thousands of dollars. This highlights the need for regulations, like the ones provided by the ACA, that prevent insurance companies from engaging in discrimination. They would throw me to the curb in a heartbeat if they were legally allowed to.
I want to point out here that even the insured aren’t totally scot-free here by any means. On my insurance plan, I only pay a small copay each month, so I’m very fortunate. Other insurance plans work differently. The insurance I had through my last job required me to pay for meds 100% out of pocket prior to hitting my deductible of $2,700, which would have meant that I’d have to cough up $2,700 the first time I went to the pharmacy each year. And many plans have deductibles much higher than $2,700. That’s one way that even the insured get screwed by price tags like these.
But even someone with my level of good fortune has to worry about scenarios like:
My employer decides to change what insurance company they contract with. Worst case, the new insurance company doesn’t even cover this medication - totally legal; every insurance plan has a formulary - a list of meds they will pay for - and I just happen to be lucky that Humira is on my current plan’s formulary. The only way I get to keep my job in that scenario is to buy insurance through the individual market, but it will be extremely expensive because people who are eligible for job-based insurance cannot receive subsidies on marketplace insurance. More likely, I just have to find a new job.
My employer decides to change what insurance company they contract with, or I change jobs and get new insurance that way, and the new company makes me jump through hoops before they’ll cover the med - totally legal and common, they come in the form of prior authorizations and step therapy - now it’s a race against the clock to get the paperwork done and accepted by the bureaucracy before I become immune to my medication.
The GOP court case to repeal the ACA succeeds. The case will be heard by SCOTUS soon after the election this fall. Annual and lifetime caps return. With pharmacy bills like this, I’m likely to hit my annual cap every year and have to pay huge amounts out of pocket. I’ll hit my lifetime cap within a few years, at which time I have to find a new insurer, and therefore a new job. I can’t get insurance on the individual market in this scenario because they’ll be able to turn me away on the basis of pre-existing condition - my only option is insurance through a revolving door of new jobs every few years.
But wait! If you’re a leftist reading this and nodding your head saying “yes this is why we need Medicare for All” - you’re not wrong, but allow me to challenge you a little bit with these scenarios:
Say we pass Bernie’s Medicare for All bill, as written today. It allows for the use of a formulary. We have formularies today, so this might not seem like a regression - until you consider that under M4A we’d have One Insurance Plan for Everybody, so my recourse if Humira isn’t on the formulary is no longer a matter of finding a different plan with a different formulary; my only recourse is to flee the fucking country. Not that anybody will take me, because countries with universal public healthcare systems don’t accept immigrants who are on medications that cost tens of thousands of dollars a year 🙃
Say we pass Medicare for All and, as was the case with the ACA, or the transition to MassHealth ACOs in Massachusetts last year, there is a glitch with the transition, and things are rocky for a bit - fully likely when you’re restructuring ⅙ of the economy over a short period of time. Any glitch that interrupts my access to my medication for too long means that I become immune or allergic to my meds.
Say we pass Medicare for All under a Democratic administration, and then a Republican gets elected next cycle and decides they want to cut the healthcare budget. Meds like these and the people who rely on them will be on the chopping block. I still haven’t gotten a good answer from any M4A purists about how we shield it from sabotage by future administrations.
(There are other proposed healthcare reforms that do not use a formulary and have transition plans I’m more confident in - Medicare for America is my favorite. I once blogged about this at length, here.)
The experience of being a patient in the American healthcare system is what radicalized me.
This will be my last post in this series for now. I’m absolutely certain that more inane shit worthy of another rant will happen soon enough, but for the time being, I’ve gotten it all out of my system.
