Personally, I can't shop for insurance. I have a pre=existing condition. In Ohio, the only insurance available is guaranteed issue which is not subsidized in any way. The rates I quoted are the best there are. My total healthcare costs would be over $14,000 per year just for myself. So I am without insurance. I just have to hope that I don't have any major problems for the next 19 years. In the meantime, I'll pay the $3000 to $5000 out of pocket for the care I do need. Or maybe I'll be lucky enough to find a part-time job where I can get insurance at a reasonable price.
As one with a spouse with an "orphan disease" which is also a pre-existing condition, I feel for you. If you took a job with an employer with a group plan you would be rid of the pre-existing condition problem in a year and get the same rate as everyone else in the group. I've been through a litany of problems with health insurance, but most of my problems have been self inflicted, i'm compelled to admit. If everyone did the responsible thing and got health insurance as soon as they were 18 most of the problems with pre-exist conditions would go away. I did do that as soon as I got out of the military, but still managed to screw up so that we had to have two seperate policies.
One thing I would advise anyone is never lie on an application for health insurance. It's also sometimes useful to apply for insurance before a health problem is revealed and goes on the medical record, and therefore becomes a "pre-existing condition;" prior to that happening it is not a PEC.