@windwalker Hi Terri -- I think there is a lot still to be learned. I think there has been knowledge gained but it is very incremental and not entirely conclusive. I think it took a while to come up with a clear definition of an 'exacerbation' part of the decision-making of whether to treat or not. Seems like that was a big deal for clinicians/researchers. There is no doubt that there has been substantial increases in infection rates in parts of the world that are alarming, but no one really knows why. I noticed that some of the data presented was somewhat dated so found it difficult to ascertain what was new. I gather the challenge for epidemiologists is that NTM is not a reportable disease or not reported well where it is. (I brought that up elsewhere)
As for treatment, It was clear that inhaled antibiotics is the next big thing although there was no mention of costs -- which I hear is prohibitive as with all new drugs. No one at the conference seemed concerned so I gather there must be some way to deal with that. I saw a list of 7 ongoing clinical trials for these and a statement that none have been approved (I thought Amikacin was??) I learned that some antibiotics can result in QTc prolongation, something I have to watch out for. There was mention of a drug called Bedaquiline used for TB years ago and recently shown to be effective for NTM as well, with the caveat that it is dispensed from just ONE pharmacy in the US and that it costs $30K for 6 months (learned elsewhere).
There was a lot of information/data presented and sometimes no clear explanation of what it all means to us lay people. I was quite overwhelmed sometimes. It would have been nice to have occasional small breakout groups - will provide that feedback. I just learned the next world conference is in Vienna in July. Would be nice to go that one although twice in a year seems like too much...:-)
Mary