This year I just learned that the state insurance commissioner's office here in Florida requires that any insurance company domiciled in Florida, which I took to mean headquartered in some fashion, offer you two HIPAA plans that are guaranteed-issue IF you've got no other options.
In my case, I had group coverage through my folks the whole time I was growing up. When I got old enough but was still a student, I qualified for COBRA and continued that same great coverage and through the grace of God actually got the whole 36 month extension and it's actually all set to finish out in three days.
I paid everything on time, and in Florida having done/qualified for federal COBRA means the state's mini-COBRA cannot and will not apply. The stage of the illness I'm at right now means I don't qualify for medicaid and medicare isn't an option for me either.
Here I found Aetna and Cigna both had reasonable offers. It's not the best, and not even directly competitive with their similar non-HIPAA individual options -- but it's close, and infinitely better than being uninsured. The only huge kicks in the pants are going to be major scans, an additional pharmacy deductible, and hospitalization if I ever go back because there's a higher deductible and out of pocket than I am used to.
I'm sort of crossing my fingers that I can just use it to feel protected and get preventative medicine through -- the side benefit being for that lowered overall protection the premium is SIGNIFICANTLY less than COBRA but about twice what a non-CF person would pay for my age and gender.
I highly encourage people to check for similar programs in their own state. The peace of mind is irreplaceable, and no company's going to advertise them outright if they know they don't have to. I can't tell you how long I dreaded the COBRA disappearing, or how long I was on unemployment terrified of cancellation because I thought I'd be a few days late making a payment because whoops, where was the money going to come from. It dominated 10% of my brain at all times that I would either be unprotected, or perhaps still get to visit the hospital in a worst-case scenario and then spend the rest of my shortened life paying back a 60,000 bill for a week-long stay in a hotel with an IV bag hanging in the room.
I called my insurance company back in January saying, hey, I'm about to run out, what do you have in terms of individual plans? I figured they'd say no eventually but I had to try. She asked if I wanted to speak to sales or customer services, or an agent. I said agent. She asked me why. I wanted to say "Hell if I know, what's the difference between the options you're giving me?" Instead I said "My case is special."
"Special how?"
"I have a pre-existing condition and want to know how I can work with that, and if I can what it'll be like in terms of magnified costs, etc."
The agent was very helpful and wound up letting me know about the secondhand experience he had acquiring similar service for a loved one. ---I did not know this option even existed, anywhere--- We tried an individual plan at Cigna that was pretty sweet, and they wanted my entire medical history down to names and addresses. He simplified things by just letting them know how last year went for me and they wouldn't touch me.
I'm trying one of these new plans now, and if all goes well (to be accurate, if they do what they say they will and honor the commitment and accurately obtain and understand the provided information) I'll be covered again on the first.
Bonus to it all being I can absorb some of the impact of a hospital visit with the reduced premiums rather than paying it out for sure up front for the same "OK" protection.