Sounds like either doctor or patient is slightly misinformed about availability.
Yesterday at 1:56 pm
I was diagnosed with NTM in Jan. 2017 after months of being sick and having all kinds of test the Dr I was going to did a bronchoscopy and said everything looked good but I kept being sick and my primary dr sent me to a new lung dr who did a bronchoscopy and put me in the hospital in isolation until they could get the results of the culture because at first they thought it was tuberculous it took 16 weeks for the culture to grow big enough for testing it's slow growing and did turn out to be NTM I was put on powerful drugs and still am on them 3 different drugs with a total of 1;920mg then I was tested a few weeks ago and found out the disease is still growing so my new Dr. got in touch with my insurance company to request a new medication that is not out to the general population yet he had to go through CDC in Atlanta to approve this then he made an appeal to the insurance company again this time it was approved. I started this new medication this pasted Monday today will be my 6th. day it is inhaled through a nebulizer directly into my lungs it doesn't go into your blood stream or any body organs.The new medication is called ARIKAYCE 950mgs.the cost of this per month $10.577.72. the dr said mine was one of the worse cases he had ever seen-praying this med. will work I am also on RIFAMPIN-AZITHROMYCIN- ETHAMBUTOL.
Yes, others are on this med, too. That you're doctor said it was the "worse he's ever seen" does NOT mean it's the worst case, just that he's never seen a sufficient quantity of cases to understand the entire spectrum.
So, there's a lot to learn. My first suggestion is that you use the search box, top right with magnifying glass and type various word combinations...NTM, inhaled Arikayce, etc. Then start reading the threads as you're not alone. Find another(s) who seem to have learned more and ask them questions via a friend's request.
There's a lot to learn and I am by no means suggesting this isn't serious, just wanting you to put it into context. I also would suggest you either self-apply (via their website) or request a referral/consult with National Jewish hospital in Denver. Other possibilities are Cleveland Clinic, Mayo, UC Davis. All have excellent, thorough, knowledgeable pulmonary departments with excellent resources.