Tired of Fighting to Get HIV Meds

Today I have learned that no matter how hard I try, I can not control everything.  I can plan for things, I can try my very best to hold back a tidal wave with my hands, but in the end you still get washed away.  
I went to CVS to get my Stribild and was told my pharmacy claim had been rejected, with the message saying I need to get my prescription via a specialty pharmacy.  I had thought this issue had been fixed months ago, as I have been getting my meds from CVS just fine, after Anthem BCBS provided a permanent waiver for me to do so.  The pharmacy calls their help-desk, who if course does not provide any meaningful help.
I get home and call Anthem BCBS and spoke to Paula, who was very nice and sweet and helpful.  She was able to call ExpressScripts who was able to reapply the waiver.  BUT...after running the claim it comes back that I have a $2500 deductible.  No problem, I tell myself.  I have a Gilead Copay Assistance Card.  I had spoken to a gentleman there back in November who told me the assistance card will cover up to $4800 a year, well over what I would need to cover my $2500 deductible.  So, me and Paula the Anthem Lady calls CVS and they run my primary insurance, then they run my Gilead card...and it took off only $400.  I explained to her it should cover all of the remaining balance, she runs it again, and nothing more than the original $400 was applied.

I then call Gilead and spoke to a gentleman who told me he apologized, but the guy I spoke with previously back in November must have told me incorrectly, as the $4800 yearly amount is if the prescription was written for a year, and my insurance only covers a 90-day prescription at a time.  So, no matter what I am stuck with owing $2100 for the very meds that are supposed to save my life.  Only, all of this stress is surely doing me more damage in the form of declining t-cells.  
This whole issue of monthly fighting to get my meds is like a horrific Mobius strip of hell that I can not seem to get off of.  It is 2014.  This is the United States.  I do not think it should be this hard, EVERY SINGLE MONTH.  
I checked into going on Obamacare back in November when this issue last reared its ugly head, but it was going to cost me a whole lot more a month than what my employer-sponsored plan costs.  And the coverage sucked anyway, where I would have ended up having to pay 20-30% of the cost of my meds anyway.  Who can afford that?  It is a catch-22 situation where the employer-sponsored insurance costs $2100 upfront, or Obamacare insurance would cost me $400-500 a month.  Though, with my copay assistance card, I would have had most of that covered...of course I see that now, in retrospect.

So, I am back to square one.  I have left a voice mail with my former Ryan White caseworker, to see if I can get onto one of the Ryan White programs, or to see how if there is a means by which I can somehow get meds.  At this point I am not opposed to going off the meds and waiting until I got sick enough to go on disability.  But that is a huge gamble, and getting on disability takes forever, so I hear, even if you have an attorney that helps you.  I do not know what will happen and at this point I really do not care anymore.  


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