What did you/do you find confusing about US health insurance?

So, I’m working on a big project that is a Self-Defence User’s Guide to US Health Insurance. It’s intended for folks encountering the system for the first time - i.e. folks turning 18 or 26, immigrants to the US, folks leaving their employer paid plan and buying it on their own, folks experiencing their first costly heath event.

I’d love to know what things you found/find confusing about how american health care works, like:

  • Where to find insurance
  • How to find a provider
  • saving money on labs/non-emergency procedures
  • drug costs
  • should you choose a PPO or HMO
  • co-insurance vs co-pay
  • difference between a Bill and Estimate of Benefits
  • Pre authorizations
  • The difference between in-network/out of network and how to find it

What are the kinda things you found baffling as a user of US health insurance?

  • What is a specialist? How do I find a specialist, do I have to go through my GP first?
  • How much does an employer typically pay when they provide employee health insurance (aka how much more am I on the hook for if I’m buying it on my own)? Does that mean that they know I saw a gynecologist last month (or insert other health procedure here)?
  • You might already have this in there, but health insurance is does not cover your eyes or teeth even though they’re part of your body. Edit: And is mental health coverage covered by health insurance.

Out of pocket maximum charges:
In network is X
Out of network is Y

Is the maximum I could possibly be charged X plus Y, or is it Y


Knowing that you shouldn’t pay any bill you receive, many hospitals will negotiate, often you will just straight up be billed incorrectly


Fuckin all of it :joy: better now that I’ve used it a ton but Christ

How can I tell what something will cost
When do I need a referral
When do I see my GP versus someone else
What happens if I change insurances while having bills outstanding
What is coinsurance and how does it work
Heck premium versus everything else was confusing for a while
Drug schedules and approvals. Wtf why.
Appeals? What when? How?


Oh that reminds me - dammit, what’s the phrase, something life events? Some friends of mine each had their child as a +1 on their insurance in case one of them lost their job because they didn’t know they’d be able to add their child/spouse outside of the annual enrollment period.


Qualifying life events~ Yes we have several pages on these lol


Mostly the level of advocating for yourself you have to do if you want results, especially if you are any type of minority. I really wish someone had taught me how to do that, everything from like, taking notes (like meds tried and failed, hospitalization dates, etc.), to follow up calls, to escalations beyond that, to having someone come with you (and forcing them to allow you to do that), etc. That and how to keep all of your documentation stuff straight especially if you’re moving a lot and have a massive medical history, etc. And creating a packet for new doctors- I do that now and I wish I’d done it years earlier because it saves so much time and the forms they make you fill out are designed for healthy people. Oh and maybe something on why anesthesia costs can be so fucking unpredictable and how to fight insurance companys on that if you happen to need more during a surgery.

Oh and something on standards. I had so many horrendous experiences I came to expect them. I still have very low standards going in, but now if I’m right I just don’t ever see that provider again. I used to stick with them way too long.


And if you want a copy of your own freaking medical records they might charge you.

Or lose your file entirely. Had that happen to Mr. Meer.


LOL yeah I have to pay OOP for literally all of my x-rays. It’s so expensive it’s stupid but a bunch of mine were lost by a hospital when I was a kid so TRUST NO ONE.


I think this is like 90% of the book at this point. It is the NUMBER ONE thread that runs through everything.

This is brilliant.


Oh good, I’m glad you’re covering that! Yeah I think of the document as like a “one sheet” for me. Although it’s like 3-4 pages. I even include “Therapies tried and failed” as well as “current successful therapies/treatments” and stuff like that. And I print them out and bring them, the second the questions start, I just hand it to them over. Also has all the dates for every surgery ever, etc.


Ohh yes good idea, we have some bits of that but it’s good to generally talk about it. I think people are so stressed by how hard it can be to find a provider, especially one covered by your insurance, that they’re willing to accept terrible options for way too long.

Like, if a hairdresser fucked up the first time you went to them, and/or had terrible conversation skills or blamed you for your cowlics, most people would find a new hairdresser. But instead we accept a lot in medical providers.


Totally! I also just genuinely thought they were all terrible. Like I really truly didn’t know it was possible to have a doctor listen or like, remember anything about my condition, or be baseline respectful and not call me literal derogatory names, or believe what I’m saying, lol. So I wish I had heard stories of people with highly complex disabilities and illnesses who had positive experiences. Because any time I met someone who was like, “oh i LOVE my doctor!” it would be someone who had no serious health problems OR someone who also worked in the medical field, and they always get treated way better but don’t realize it so :woman_shrugging:. If I’d known decent people were out there I would have been more willing to go through the pain of finding them!

Also this made me LOL. Every time I give even slightly negative feedback, and they inevitably start going on and on about how hard their jobs are and woe is me, I just want to be like, “you know who else has a hard hectic job on their feet all day? people who work at McDonald’s. and they manage to be perfectly nice in every interaction I’ve ever had. not once have they endangered my life or made me feel like fucking trash. oh and they don’t make a massive salary like you do, so like, WHERE ARE YOUR STANDARDS?” That’s in my head, obviously, on the outside I just smile, nod, and never see them again if possible.


You’re doing a good job of inspiring me to actually try to find a new PCP - I never liked mine, and the VERY FIRST APPOINTMENT she gave me a print out about how Bagels are Evil (wtf?)

My strategy has been to avoid calling her and call my rheumatologist instead, but I need most things routed through my PCP so I just message her in mychart or call the front desk at the practice.


I’ve been having trouble figuring out when “alternative therapies” like chiro, massage, acupuncture are covered.

For example, my insurances website has a whole page with lists of “alternative providers” that are covered. I set up an appointment with one and she said my insurance covers 90% of the bill. But my statement of benefits say they aren’t covering anything (which I expected since it’s high deductible).

Anyway low key wondering if I’m going to surprise own someone $2k because she’s filling up my OOP max and deductible and still only charging me $30/visit. But I’ve had similar issues with all my insurances. And if there’s advice about how to tell if one insurance is more generous on those things than the others that’d be nice too.

  • Double coverage (either on a child or like, I had parent +student insurance for a while) and getting people to bill it right
  • If/when choosing insurance, before being on it, how to find if a drimug, procedure, or doctor are covered, definitively. Documents to look for and/or phone scripts to call in. (I know you have experience here and it’s something I’ve never figured out! Fortunately, I haven’t had a critical need so I have been OK winging it so far)
  • Going on medicaid if you finish school or become unemployed and lose insurance. Maybe with some red vs blue state examples? (you can’t do all 50 but I assume some common trends w/ ease of access…)

You should send her a break up box of everything bagels. :laughing:


omg i love this so much

1 Like

Going on Medicaid is the same parameters in all states with ACA expansion vs all states without ACA expansion. (In my experience in two states with expansion).

But yes, people need to know it’s a lot easier than I thought to get on Medicaid. And it’s available when your monthly income drops, not just your yearly (unlike ACA subsidies which are based on yearly income) (Lily please fact check me!)