I thought that insurance could no longer disqualify someone based on the "pre-existing condition" bs. If not, I'm pretty sure that congress is working on banning that, but I really think it's already been deemed illegal.
As far as the Xyrem - outrageous yes, but they have a team to work with your insurance and quite honestly, it is costing me less than other medications are. Also, Provigil does now come in a generic which is significantly less expensive. I was paying $375 for a 90 supply with insurance and when it went generic my co-pay dropped to $20 for twice the amount!
Also, I take some dexadrine, which on the insurance is very inexpensive even before the Provigil switched to generic. I have been getting up to four pills a day and a three month supply was costing me $20. Someone does have to sign for the medicine.
My company offers different levels of coverage and I do have to pick the highest, more expensive option but it's worth it. Additionally, I typically spend more than $3,000 out of pocket and that usually still leaves a lot of bills unpaid.
It does suck to realize that there are things that friends can do that I would be able to do if I didn't have all these medical bills. But, I've lived without these medications and honestly, life without my meds is not a life I want to live.
I'll try to be careful with this next paragraph as I don't want to get preachy but hope to just help encourage others as I've struggled with these same issues. I push myself to stay really thankful that there are these medications to ease the symptoms and make life more bearable. Also, I think while we all need to vent and get stuff off of our chests - myself totally included in that! - we also have to be careful to not just dwell on the negative or how overwhelming something seems. Our mental disposition toward issues really does affect us. If we're convinced we're gonna have a crappy life and never be able to pay our bills - it becomes a self-fulfilling prophecy...as much as it might feel fake or unnatural I have learned to force my mind and mouth to say - I will have the money to pay my necessary bills. I will have/keep a good job. It almost sounds silly, but it really does change our minds and lives. It's not something you can put under a microscope, but I've seen it work in my life and in the lives of everyone I've seen apply this principle.
Right now with the cuts made to what we are allowed to set aside pre-tax in our spending accounts I have $800 less than last year to spend on co-pays, etc. and with insurance changes I'm more in the hole than I was a year ago. On paper I have no clue how I'll afford my dr's and medications through the end of the year. However, I'm going to keep on saying that I will have the resources I need to get this medicine and see these dr's.
Also - when I was uninsured Cephalon who makes Provigil approved me two years in a row for free medication. There are a lot of resources out there if we'll just put forth the effort (which as a narcoleptic is like this HUGE irony!! ha!) to find them.
I know we can all go on to live better lives even if they're not what others have, we have our measure of life to enjoy and share.