Hi Sarah,
I'm so sorry you are having to go through this! Insurance issues are SO stressful.
I don't think I can be of much help but I will mention my scenario just in case it helps at all. I have a 15% (nowhere near 50%)copay after our deductible is met. However, we have a $3,300 deductible that applies to prescriptions. Meaning, we pay cash (100%) for prescriptions until we've paid that 3,300.
I have the Cystic Fibrosis Patient Assistance program and between that and Gilead's assistance program for Cayston I end up paying very little (or nothing) out of pocket. Have you looked into the CFPAF? They have a screening tool on their website to see if you qualify.
http://www.cfpaf.org/ I know you mentioned you don't qualify for any state assistance and nor do we. The CFPAF has much more generous guidelines and at last check you could make up to 400% of the federal poverty level. Which in our case for a family of 3 is over 70,000 per year. They pick up my copays for Pulmozyme, Cayston, Hypersal, Acetylcysteine, and Pancreaze.
Also you mentioned the manufacturer programs, yes I think you could probably get help with almost all of the "big" ones there. The Cayston program I mentioned (i think is called Cayston Access) through Gilead is not income based at all. They pick up the bulk of my Cayston copay/deductible. I know there is a copay card for Pulmozyme ($10) that I don't believe is income based. I haven't done Tobi in forever but I believe there is a copay card for that, and the CFPAF also assists with it. Many of the enzymes also have copay cards.
I think almost all of the uber expensive meds have assistance available. You may be able to get by with the 50% coverage if you are only paying out of pocket for the least expensive ones.
Regarding the two different plans, I don't have any idea how that would work with 2 private plans. Not sure how it would be decided which was primary and which was secondary and you may just end up in a huge mess. There are normally guidelines for deciding which is primary but in this case it would get a little sketchy. I think maybe you could call your state dept of insurance and ask if they have any idea how that would work.
I'm sorry if you've already looked into/don't qualify for the things I've mentioned. I just wanted to mention it in case it helps you (or anyone else)!
I've gotta run, but good luck!
Take Care,
Autumn 32 w/cf