I don't understand the "I have insurance but not good insurance". The ACA caps out out of pocket expenses at 7k/person/year. Not the deductible, TOTAL out of pocket expenses.
Is it really that common to have things not covered? How often do people get prescribed non-covered drugs or treatments? What am I missing here?
Short answer is that it is not that simple, and it is common for things not to be covered - ESPECIALLY if it is a marketplace plan.
For instance, my wife worked at the hospital our daughter was born at. Her insurance was exceptional, if you stayed in that institution (arguably the best hospital in the midwest, at least for certain things). If that hospital didn't offer the service, you could go to another place for it if it was necessary, but only if there wasn't another hospital in the area in the network that offered it.
So our daughter was born at this hospital. We didn't know anything was wrong until she was born (virus attacked her heart). First 1.5 days of her life, the bill was about $50k (mostly covered by insurance, I think we paid them about $1.5k but that included my wife's care (C-section)). She needed to be put on something called ECMO. Now, ECMO for babies isn't something that is at just any hospital. ECMO itself is pretty unique. This hospital had ECMO for adults, but not for peds, let alone neonates. So we transferred to a hospital that had it. Ambulance bill was about $2k. 11 miles.
She was on ECMO for about 1.5 weeks before she had a brain hemorrhage and passed. The bill initially came in at about $1.3M for this hospital, patient liability about $17k because we didn't go to the right hospital. Contested that. Ok, they realized we did. Got it down to what it should have been. Then the labwork bill came in - keep in mind they were doing blood tests every hour. That coverage was denied, because the hospital that we started at (11 miles away) could have done the labwork. Uh... Yeah, again, contested that one. Ambulance bill came in. This one was right, but expensive. I called them directly and they knocked it down a ton.
Ultimately we were initially billed about $43k. Almost none of that was right. Ultimately we paid about $10k (remember, some of this was because of my wife's bills). I could have gotten it down to about $8-9k, I think, but my dad saw me on the phone with the insurance company and asked me "what do you still owe, according to them" and I told him, and he wrote me a check for that much to make the problem go away. I'm fortunate that I have my family who can do that, to whom even a healthy 5 digit bill would not phase them. But most are not as fortunate as I am in that regard. Oh, and don't forget you still have a funeral to pay for, you still have to work on your own mental health, and you may have to take time off of work. My job gives 3 days for bereavement of a child. 3 days. Seriously? Luckily my manager is an excellent person and said "come back when you can, I'll pretend I see you every day at the office. Don't worry". But what if I didn't have that? My wife couldn't go back to work at the place where she delivered our daughter. Too rough emotionally. There goes about 40% of our income. Didn't plan on that.
And for someone in this situation, we were in good shape too. Could have sold the house and moved to a lower cost of living area. Could have taken from the retiremnet accounts, penalties be damned. Could have done a lot of stuff. But for a lot of folks, the best financial strategy would have been bankruptcy. Yes, really.
ACA isn't all its cracked up to be.