So, in the meantime, what can we do about health care/insurance costs, and the like? Here's some suggestions:
1) Realize that even in a hospital, you are the consumer. If you don't want a certain test run, you don't have to have it run! If you don't want to go to a certain hospital, you don't have to go there! A few weeks ago I had to tell ambulance guys (I'm fine, btw) to take me to Children's instead of the nearest hospital. They looked at me oddly. "It's because of my transplant," I said. When we got to Children's, and one of the nurses recognized me immediately, the EMT realized, Oh, yes, she knows what she's talking about!
You do not have to do everything a doctor recommends. You really don't. I know, we don't want to be difficult. We assume the doctors know what they're talking about. And yes, most of the time, they do! But not always.
(Caveat here: If you don't know anything about your condition, then I don't recommend this pathway. It's only after, say, 34 years of messing with my body that I know what most tests are being run for, and what their purposes are. If I don't know, I ask. If a doctor suggests a test to me that I don't think is necessary, we have a "conversation". Or if it's contraindicated for me, it doesn't happen. Don't be in the ER and Googling random tests. That's annoying.)
2) Know Your Body. Know what you're taking, what you're allergic to, what tests you may not be able to have. Use the Health app on your iPhone! Why know all this? Because hospitals and doctors don't always know. They don't check the chart all the time! You must advocate for yourself. That's not really a suggestion. It's something you have to do.
I was at a Big Adult Hospital once and the nurses would come in and say things like, "We're going to do an MRI." Me: "No, you're not. I have a magnet in my head. Contraindicated."
"We're going to give you a PICC line." "No you're not. There's no more spots for them."
Etc. Had they read my chart? No idea. But I--and my parents, who took turns being with me--knew enough about me to say, "Nope. This isn't happening."
If I hadn't known, or hadn't been able to speak up, then things would've been done that would've been reallllly bad.
3) Almost all--if not all--hospitals have financial aid departments. Call them. Email them. Fax them. Whatever. Talk to them. I currently have a stack of bills from the resort next to me. I will fill out the application for financial aid, and I will send these to the financial aid office at Children's, and once they see that my "paycheck is a disgrace to paychecks", I will probably not have to pay anything, or a severely reduced amount.
Is this a pain? Yes. Have my parents and I dealt with many, many financial officers and insurance people? Yes. Does it take time? Yes. BUT IT CAN BE DONE. DO IT. It's worth it.
4) Do not mistake "insurance" for "health care." Not the same!
5) It is important that people with pre-existing conditions, that need health insurance, can get it. It is important to remove the work connection to insurance. But one of the big parts of the ACA is the "insurance marketplace" idea, and the idea that the care would be affordable, because you could choose what worked for you and your budget.
But right now, there is no "marketplace" if an entire state has only one insurance company from which to choose. That completely defeats the purpose of a free market, in which competition is what is needed to keep prices low and provide consumer choice. If the choices are Insurance Company X, and Medicare/ Medicaid, that's not a choice for the average bear.
Different people have different insurance needs. I use health care incredibly often. My brother is as healthy as a horse and has used an ER once in his entire life. He and I, obviously, do not need the same insurance plans! Thus, when I worked, I chose the most expensive insurance plan. My brother could choose the cheapest one and be OK with that.
Right now, I have one health insurance option. Thankfully, it covers the Big Things I need. But financially, it's a tough plan, given my co-pays and the premium is crazy. But I don't have the choice of any other insurer, whereas before, I had three choices. This is a problem, no? Because I cannot make choices about my health care. I have to "choose" the only option available.
The ACA, like many things, might be "good in theory". But in practice, there are definitely things that need fixed, while still keeping key provisions of the law that allow people with complex medical needs to get what they need.