You must have missed the post where I said that every form of medical healthcare that exists in this world right now is terrible. Even Canada and Britain's national healthcare systems are sorely lacking in many areas, often contributed to the idea that the government has final say as to whether you get the treatment you need, not what some cheap nearby doctor says you need. For those with less mainstream (but altogether still large group of) conditions, seeing a local doctor unaware of the condition can result in a battle lasting years, usually ending with the person paying out of pocket for services their health system should have guaranteed.
Meanwhile, in the USA, we have some of the brightest doctors, but no one can afford to see them, because insurance companies won't cover the people, and no one can afford it. Oftentimes the conditions are even treatable, leading to normal lives, but only if they are treated.
I was lucky in my situation for many reasons:
1. My grandfather, who had custody of me (and did so for this reason immediately after birth), was a Cincinnati Firefighter. This means he had good healthcare coverage through the government, and they couldn't turn me away. And yes, they tried, very hard, even went to court.
2. My pediatrician actually knew what my condition was right away, and knew who to refer me to.
3. I was also lucky in a way to live in Cincinnati for Children's Hospital, one of the top ranked hospitals in the world. In that hospital was one of the premier surgeons that dealt with my condition.
4. I've continued to be lucky since, as Children's Cincinnati kept surgeons on staff that actually knew my condition and how to work with it. Even now I still go back just for the current Chief of Surgery there. There are more doctors that know my condition, and can treat it, in the USA, than there are in every other country combined. This isn't unusual.
5. I had my grandmother. She fought tooth and nail even on my grandfather's insurance to get my various required surgeries covered. She spent HOURS and HOURS on the phone arguing with whoever it took to get the job done. It's only gotten worse in recent years.
Now of course, my luck has run out. With my age I can no longer be on my grandfather's insurance. I can't go on medicare unless I wish to somehow find a way to live on $900/month. I can't pick up my grandfather's insurance, they won't take me because of my preexisting condition. Period. No exceptions, no amount of money, not even catastrophic. Other insurance could be found, but only for amounts totally at least $400/m a month for the bare minimum (barely catastrophic), or up to $1000/m for more. Still won't cover my condition. I can't pick up insurance at simply any company. If the company is too small, my abnormally high rates would result in everyone else in the company taking a large paycut to pay off the price. and thus the company would ask that I not take the insurance. Getting a steady job in some of the large corporations, one of the few places that promises actual full insurance is like a chance in hell, especially with this market.
The worst part of it is, my condition is under control. I don't take medication for it, I don't need various maintenance tests, the only things I ever need is bandages (which I already pay out of pocket at a cost of nearly $300/m), and a yearly visit to earlier mentioned surgeon to make sure I'm doing okay.
I need the insurance for the same thing anyone else does. In case I suddenly need surgery for something, like if my skin breaks down and an open wound develops. Does it mean it'll happen? No. Is it even highly likely? No. Forgive me if I'm wrong, but I was pretty sure that the entire purpose of insurance was to cover a possible risk.
I could rant on this crap all day, but at the end of the day, I don't know the best way to fix it, all I know is what everyone is doing now sucks.