Bravo to @Sharpe and @Editer and everyone chipping in ideas and strategies here. I can’t help you, Jeff, except to give you encouragement to keep on pounding down doors until you get what you need. I hope it all gets worked out soon.
If this happened to members of Congress, they’d be forming a select committee right about now because they couldn’t get their Viagra.
One of the problems right now is I keep coming dangerously close to needing emergency intervention for secondary asthma attacks, which sometimes last all night. I have 3 meds for that, and I’m missing 2. Then there’s my really expensive meds for CF. I run out of Trikafta next week. That one allowed me to come off Oxygen.
I have one more med I’ve been waiting to get approval on for a year. It’s called Arikayce and is delivered as a liposomal encased powder into the lungs. This is my “antibiotic of last resort” to treat Mycobacterium Avium in my right lung, which keeps tearing holes in my bronchiole blood vessels causing my lung to bleed. This drug is my final chance to stop this infection as everything else has failed over the past 4 years. Like all new meds, this is sinfully expensive. BCBS stated they would only cover 40% of it, which would have left me with a monthly bill of $8,000. But Infectious Disease was finally able to get coverage through Medicare Part B (disability) for the rest. So among all the BCBS insanity, I got a surprise call from my doctor today with such happy news. You’re finally approved and we can get you started! But you still can’t have it! LOL.
So the long answer to the question, is I’ll probably be OK (hope I don’t jinx myself), but it puts me in a jeopardy.
Sorry for the long response, but I kind of went into all that detail cause I wanted to tell someone how excited I am to go on Arikayce! 
It’s like being thrown a Hail Mary.
Hey @jpinard Jeff,
I checked again with my contact and she strongly suggested you get signed up with Blue Cross/Blue Shield’s free case management service if you’re not already. The folks who staff that can actively help with possible solutions to issues like this.
Also: “I’d have him call a case manager, or file a complaint with the state. Once the Office of Insurance knows, BC has to respond quickly AND root cause the issue to the state.”
FWIW. Hope that’s helpful.
I’ll definitely sign up for the case management. Hopefully it’s easy and they’re not overwhelmed. Do you think it’s necessary to file with the state? I’m sure the city is furious with them already and would file their own complaint. But maybe not?
Yeah, she used to manage the case managers (making her a case manager manager?) in a previous gig, and it’s like having a personal advocate at the company. Worth your time to get connected with them. Given your situation in general, it should be very helpful to have a CM there.
I mean, I’m sure BCBS did this by accident and are scrambling to fix it, but given that people’s lives are literally on the line, it I think ensuring the state is aware would be a good thing. The info’s in the stuff I sent in the PM. The City might not be as aware of the process for escalation as I’m sure this isn’t something most city workers typically have to deal with.
Jeff,
Just speaking as someone who worked in/around legislative offices for years, yes, let the state and your state legislators know. If they’re any good at all, they live to fix problems like this, esp. when it’s impacting lots of people.
Aleck
Want to emphasize this. I would totally call your state representative’s office and see if they can help.
This isn’t analogous, but last year, when i was unemployed, 20 weeks of unemployment stacked up without them ever paying me for reasons that had nothing to do with my eligibility. I called the unemployment office three times a week, and each time was told there was no way to escalate the problem: I just had to wait. One call to my state rep, and I was paid a $25,000 lump sum of all outstanding unemployment just a week later. A good state rep can totally get things moving.
Definitely do that, and also consider reaching out to local media. Nothing gets corporation to be responsive faster than bad press.
Supposedly it’s fixed. So to test it out I went to Walgreen’s to get my scripts. Instead, they said my secondary insurance was demanding letters from my doctor stating my critical pulmonary medications were “medically necessary”. What? Since when do pulmonary doctors prescribe pulmonary medicine that’s not actually medically needed? CF clinic spent yesterday getting those forms sent, when I went today, they say they want pre-authorizations.
I’m going to try again tomorrow. 8 days in a row I’ve been trying to get my medications. The American healthcare insurance system is a crime against humanity.
Ugh. Well, I’m glad the BC/BS issue is fixed, at least. Sorry for the rest of the hassle. The situation is ridiculous here.
