Airway clearance

Rick, you said "The Medicare part d inconsistencies drives me crazy. How about the same plan for all?..." and @bamaqueen said her Advantage Plan doesn't cover Arikayce either.

Please, please, pleas bombard your Representative and Senators with these examples of inequity in Medicare, which was supposed to protect us all in our senior years. Ask them to clamp down on the insurance industry with all of its fancy-named plans to enrich them, not serve us.

Specifically, Advantage Plans came about because the insurance companies complained about needing a cheaper way to bring people in - they are paid a certain amount per year by Medicare for each enrollee, and that's all they get. So the more times they say "No" to a procedure or a referral the less money they pay out.

The drug issue is an even bigger issue. "Formularies" are agreed on each year by insurance companies and Pharmacy Benefit Managers (PBM's) - which are often owned by the insurance companies - creating Tiers of drugs with generics being cheapest, the newest patented drugs and biologics the most expensive.
Each insurance company sets the co-pays and "prior authorization" requirements for medications, then turns it all over to a tightly controlled group of people (who may or may not be medically trained) to run the process.

My insurance company changed PBM's this January, and medications my husband and I had been taking for a long time to manage chronic conditions had to be reauthorized - on first submission, both were denied as "not medically necessary" - appeals restored both prescriptions "for one year only." No person signs and can be held accountable for these authorizations. My daughter's PBM wants to authorize her biologic every 3 months, even though it is for a disease she'll have the rest of her life. Her latest kerfuffle with them caused a 4 month delay, forcing her back on high doses of prednisone - which she will probably pay for in her future with osteoporosis. I was just prescribed a new prior approval drug today, after having failed the conservative protocols. I will be watching closely to see how soon approval comes.

If you read around Connect, you will see we all need to lobby for change - with the people who regulate this, and not just amongst ourselves.

Thank you. That’s what worries me about the cost if that’s what they give me are you drug resistant

Sue, I totally agree. I hate fighting this battle with every single medication I have filled. Eliquis is another nightmare and totally over regulated to extending the patent years beyond typical expiration just to make money. We are supposed to be happy about the new negotiated monthly price in the $200 range instead of $500, but I can order it from Canada and get 200 tablets for $72. Makes me crazy. If you are not on Medicare you can get it for $10 with a coupon from Bristol Myer. If anyone needs a coupon it’s those of us on Medicare.
Arikayce retail over $15K a month. I was prescribed Linezolid and it was only $900 a month, but I found a coupon for $120 and never took a one because I had a severe reaction to the Imipenem infusion (another boat load of $ down the drain) and my ID doctor stopped all my antibiotics!
I just can’t do it. Why treat something if you can’t afford to live after?
I hope you get your daughter’s situation under control. Even more difficult when it’s your child.
I guess I need to vent to the higher ups like you said. How do I find that information? Maybe Rick will find it for me.
Thank you for your input. Hopefully my comments won’t be erased like in other worlds. 😉

Hello, Laborday24.
Quite a few people are granted assistance with payment and end up paying very little, so don’t let concern about cost deter you from this game changing medication.
No, I am not drug resistant. After six months on Azithromycin and Ethambutol, I still had a few colonies of mycobacterium on culture. My doctor’s experience told her to add the Arikayce, which at that time could not be added until after six months of the original protocol. In one month, zi was culture negative. The current guidelines are for 18 months of treatment after the first negative culture. I will finish my treatment in April 2024. The only side effect I have had on the MWF treatment is profound fatigue, and that did not begin until I added the Arikayce, but I have not had side effects besides that. They could be from a combination of the meds.
Have you been on treatment, and how has it gone? If you are on the fence about it, and your doctor is recommending it, just know that there are options. A MWF protocol is more for those without cavitary disease and is very doable. Many also do fine on the 7 days a week. Have a doctor whom you can talk to and express concerns to about your treatment. I would not go against his or her advice because as we debate and delay, this bug occupies our lungs and does damage. Nobody wants to be on these meds, but the protocols are so much better than they were even a few years ago. The Rifampin was the rough one, and many doctors no longer use that. Try to go to a center of excellence to begin with. Then your doctor can work together with them to get you treated in the most suitable way for your case. Once on the meds and doing proper lung hygiene and clearance, you will see improvements. There is so much we can do to increase our success rates. Try not to let fear hold you back. We have all been there.

Thank you Scoop. I can't use Albuterol because it make me trimble . Have been using Levalbuterol for a few years but I have to stop every now and then because of thrush. Recently I started using
Ipratropium Bromide 1 X a day. but has to stop that yesterday due to thrush...I have found that Nystatin oral rince works best for me to cure the thrush .
Also recently learned from a CT scan that there is a vertabtas out of alignment and a spur from it is pressing on my esophagus.
I know now that is the reason for the dysphagia but also wondering if that is the reason it takes so long to get the mucus up. I have not found out yet if the esophagus is compressing the trach.

Thank you i needed that. I did three drug regimen for two year. First three sputums were negative I am drug resistant to azythromocin. I had no issues on the drugs. I don’t think I have any cavity issues so maybe I can be helped. I am coughing 24/7 since off meds. I go to national Jewish health in October

Barbara, yes I know and it takes time daily and weekly. I empty and let
air dry daily and clean with white vinegar once a week. I only use
filtered and sterilized water in it but with even that it will start
showing some pink in the bottom by the end of the week .
And electric tea pot by my bed might work if it was easy to clean

So@Laborday24, you completed treatment and were negative but then began coughing non-stop after treatment ended? Did you become positive again? Did they then do drug sensitivity testing and then determine that you are Azithromycin resistant? It is good that you are going to NJH and will get good guidance on the next steps to take. Best wishes on having all of your concerns and questions answered. Undergoing treatment is easier when you have confidence in the most expert recommendations. It helps to alleviate the fear, think. Knowledge gives us power.

I agree with Sue. It’s your US representative and your senators you need to call. I’m happy to help you get the numbers if you can’t find them online. They have email forms, but when possible, I prefer to speak with someone. Have your meds, their costs, etc ready to share.
If enough people call, my experience has been that they often listen.

When I had iv amikacin my id doctor arranged it through a research pharmacy so it was paid differently. So there are ways not to pay for it but I think the doctor has to be resourceful and willing to help. My id doctor was like that. On the other hand my pulmonologist is passive and was very surprised I was prescribed a vest during my NJH visit and my insurance paid for it. She still thinks I did not qualify- it’s just good will or lack of it.