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Sue, MAC is a new and additional problem for me. I was referred to an ID following a positive culture. Arikayce inhalant was prescribed. I'm retired military. and a senior; prescription is one of my benefits which I get thru express scripts which is the agent that handles it. The arikayce required preapproval from the military. due to the cost which is listed in the thousands per month and a $68 copayment from me. They stated I must use conventional treatment for 6 months and still show a positive culture before they will approve it. Your comment on arikayce is very casual, was it a problem acquiring it for you? A few days ago, I signed an authorization for my ID to appeal their decision.
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I am just finishing my first month on Arikayce (plus Azithromycin and Nuryva). I received a notice from Express Scripts that I did not qualify because I had not had 6 months treatment, but the next day I received a call that it had been approved. Apparently my ID doctor expected that and sent the appeal. He had told me that would happen. Either the specialty pharmacy or the manufacturer told me the Express Scripts would give me a copay of $77, but they enrolled me in a plan that allows me to have a copay of $10 per month. I have been told that they are now allowing Arikayce to be used initially as it is having good results.
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It wasn't available to me when I was being treated (four years ago now) - Back then it was only being used in a clinical trial that I didn't qualify for. As a retired Fed, I would be jumping through the same hoops as you if I needed it today - except, I already "failed" treatment once. I was on the 3 antibiotics for 18 months and never did get a negative specimen, but my lungs did improve.
So far so good on airway clearance & 7% saline 🤞
I hope your appeal is successful - my sis-in-law has been successful at appeals through Tri-Care express scrips for other issues.
Sue