I've always had insurance through my parents, work, temporary coverage (COBRA), or self-employed private insurance. In the 13 years I've been managing my own health, I've had to appeal to take one, just one, medicine. The reason was that back in 2000, to order colistine in an injection bottle to nebulize triggered issues because they wouldn't cover it for injection. A quick call from my CF doctor cleared that up.
I've paid everywhere from $100/mo in premiums and very very low co-pays to the $435 we pay now and $3500 out of pocket per year. The freedom I have to get whatever treatment I want without worry that someone is going to step in the way and deny a treatment is priceless. I'm self-employed and simply make up for the higher premiums.
What I DON'T want is someone forcing me into a rationed program or forcing me into another insurance that denies the treatments I am on now or need in the future. No one wants to be in need of an x-plant or a recipient of an x-plant only to have something fall through because of someone else's bottom line.
I feel for those who don't have insurance, but the only thing that needs to be done is to insure *those who WANT insurance* (many in their 20s don't care to have it) and to make it easier to avoid pre-existing condition clauses. I can't just go get another insurance plan because of CF, but I could always work for an employer who provides great health plans. It's not that hard to get a job with good coverage - insurance just has to be a priority in the job-seeking process.