julia ferraioli Profile picture
Oct 2, 2018 22 tweets 4 min read Twitter logo Read on Twitter
Okay, you know the deal. Tech tweets by day, #ChronicIllness tweets and miscellaneous rants by night.

CW: medical stuff.
I had an experience today that kind of sent me over the edge in terms of what costs chronically ill people are expected to shoulder. (Yes, I'm talking about US healthcare. No, I don't want your "just move to Canada/France/wherever!" suggestions.)
Chronically ill patients often are misdiagnosed for years, if not DECADES. That means multitudes of specialists over those years, along with many, many, often painful, tests. In addition to the physical and emotional toll this takes on a person, it also takes...
...an immense financial toll.

Specialists? If you're lucky to have insurance -- and the provider takes insurance -- you're looking at a higher copay, maybe $30-$50 per specialist. If not, it'll run you anywhere from $300-$800 per specialist (in my experience).
More and more providers are not taking insurance. At all. This disproportionately affects people already marginalized and harmed by the healthcare system.
That's assuming no travel. If you're going to a specialty clinic out of your city (like Mayo), then factor in airfare, hotel, rental care, food, pet care, etc... on TOP of the clinic fees.
Then we've got tests. This is the hospital fees for the last test I did (this doesn't include provider fees; that's separate). It's actually fairly tame. I've had worse. Cost breakdown of medical test, totaling $10,452.33
Let's talk surgeries! I've had five or six, I actually can't remember, to treat whatever the fuck is going on with my body. In the last four years. The costs for those are astronomical, and fuck you if your insurance doesn't think they're "medically necessary".
Aside: "Medical necessity" is often determined by doctors who have no experience whatsoever in your chronic illness. They DO have lots of experience denying claims for people who fall outside the statistical norm, though.
Today, I spent a nontrivial amount of time trying to find a provider who will actually treat me for one of the things I was diagnosed with. The specialist that they want me to see has no openings in the foreseeable future, but they will know a bit more come spring of 2019.
(That wasted time was also a cost I'm expected to shoulder. I'm sure my time isn't valuable at all.)
I did find someone ostensibly taking patients. They are accepting new patients on a rolling basis! They can tell me that I will have to pay $45-$75 a month to get *no* care from them, but this will put me on the list to wait for an appointment.
So given they think it might be a year or more before an appointment is available, that's more than $500 at minimum to get in line to maybe find a doctor that can help. And you get charged twice: once in money, and once in potential wasted time.
If you think that a year is outrageous, you should know that some other specialists have waiting lists 4 years long.
What's the solution? You get on as many fucking lists as you can, sinking hundreds or thousands of dollars into *potential* care. And in order to do that, you have to get your records to all these providers.
Oh, yeah, getting your medical records transferred costs money, too. Allocate approximately $10 per provider-to-provider transfer if you want complete records (some will waive this). Multiply this by the number of decades you're searching for a diagnosis.
I recommend getting your records yourself, and make it a one-time-cost. But then you have to handle the transfer, which given some medical records departments...might be a plus, tbh.
Another solution to the lack of providers and specialists that many arrive at is to widen your search space and look outside your area. Of course, then you're back at paying a premium for travel.
So. (Some) costs that aren't covered by insurance:

* records transfer
* transportation
* medical concierge fees
* out of network providers
* many tests
* airfare
* specialty food
* hotel rooms
* your time, stress, and sanity
In summary:

Chronic illness imposes an enormous amount of financial burden on the patient. And much of it comes from places that people don't even think about.

No moral of the story here, just wanted to share.
This twitter thread brought to you by...

...Julia's outrage, exhaustion, and resignation to participating in a system she loathes.

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