Resources for The ABC's on Bronchiectasis and MAC (NTM)

This looks like a good video but it's not Dr McShane.

Thanks! Oops now I cannot edit my post.....maybe @sueinmn can?

Here is the Dr. McShane Airway clearance video

This is Dr McShane's Video - she was presenting at World Bronchiectasis Day - just wait for her at the 2 minute mark.

Honda Lab [NTM] at Tyler/TX
https://www.uttyler.edu/academics/colleges-schools/medicine/departments/center-for-biomedical-research/honda-laboratory/

Individual Management of Patient Airway Clearance Therapy
https://impact-be.com/conditions/bronchiectasis/

One of the most confusing aspects of Bronchiectasis and NTM (and many other rare and highly variable conditions) is the dizzying array of advice available from sources ranging from expert to individual opinions.

Mayo Connect does not endorse any other these sites, but often refers to the "leaders" in the field. These include acknowledged experts in the field like National Jewish Health, Mayo Clinic and others, as well as research and support organizations like The American Lung Association, NTM Info and Research (https://ntminfo.org/), and Bronchiectasis and NTM Association (https://www.bronchiectasisandntminitiative.org/)

We also strive to provide research-based information, including citing the underlying source material so members may dig as deeply as they wish.

We also avoid quoting AI-generated "advice" because it lacks the citations that allow us to read studies and reports ourselves, to determine the source and how rigorous the research is.

Check out the links in this discussion, and feel free to add your own, with an explanation of why they are valuable to you.

Let's start with this - technically a prescription is not required to by normal or hypertonic saline solution. Based on this, most insurers, including Medicare will not allow you to use prescription benefits to pay for it. I KNOW - sometimes pharmacist and insurers let it "slip through" but they aren't required to.

Long story on Part B, but here goes (and I'm going to immediately repost to the ABC's of MAC & Bronchiectasis so I can point to it later.This was not my idea, and I wouldn't even begin to guess the logic, but here it is in a nutshell.

1) Any solution used in a nebulizer, or other piece of "durable medical equipment", is not covered by Part D Medicare but MAY be covered by Part B Medicare (other medical expenses) under certain conditions. Usually these are explained in long documents issued by Medicare.
2) Hypertonic saline (any solution above .9%) falls into this category.
3) The limitations, as I understand them are this: you must have been prescribed a nebulizer by Medicare for dispensing a prescription solution (other than saline.) Some plans also require that those prescription solutions are currently being dispensed. Silly thing - if I get my saline and levalbuterol at the same time, I pay $5, other wise my copay is around $15.
4) The pharmacy where you buy the saline must have a Part B contract with Medicare. Some chains dispense durable medical equipment and have such agreements, others do not (CVS in our area does not, but Walgreens and Walmart do.)
5) The pharmacy must submit the claim to Medicare Part B with the appropriate codes. And they must indicate on the initial prescription that you have a Medicare prescribed nebulizer. Please don't ask - I don't know them and cannot get them. Your copay will be reduced according to you Part B Medicare and any supplemental insurance you have, so you may pay 20% of retail, or 20% of the "allowable amount" or even zero under some plans.

If you are having issues with coverage, please reread. If you meet the requirements, consider checking with another pharmacy. Ande be sure to check out GoodRx.

I’m new to this group , 15 years ago was diagnosed with MAC , treated with euthambutol and rifampin for 12 months and did well . 5 yrs ago started to have issues , cough , sob , etc . New dr began with airway clearance devices and antibiotics and I felt good , in Oct 23 tested positive for MAC and Nov 23 started big 3 , March 24 sputum cultures negative for MAC and subsequent cultures through Feb 25 all negative . Then Mar 25 tested positive again while on big 3 !!!! I don’t feel good and very discouraged. My drs baffled and now suggest adding another oral antibiotic and intravenous antibiotic. Unsure what to do next , if anyone has had similar experience, I would appreciate any advice .
Geraldine

Hi Geraldine. My situation is kind of similar to yours. Started the Big 3 after multiple positives for Mac, had a few negative sputum results, and now the last two tests have been positive. Grrr! ID doctor is considering adding clofazamine or bedaquiline, but not amikacin since the bug tested resistant. Also not sure what to do, other than continue with airway clearance and frequent AFB sputum tests, about one every 4-6 weeks. NTM bugs are sometimes hard to eradicate. I wish you the best of luck.

I had clofazimine added after being allergic to rifabutin. I was taking it for 18 months and if you can try. I did not have side effects except being orangey, kind of tanned but it thought it was nothing if it could help me. Besides I had my eyes checked every month.if clofazimine is your option, I would say add it to your regimen.