Brinsupri follow-up

@dpaula
I did some searching on the internet and if I got correct information, Medicare, Medigap cannot pay for your Brinsupri. The only part that can pay for it is the prescription drug plan that you have. It sounds like your BlueCross Prescription plan denied you and then you appealed and got it approved. I was just wondering this morning if anyone had their prescription PA denied. I wonder if anyone else had to go through the appeal. Like you I am at 4 + ounces a day (some days less) but mine is purulent. It sounds like you have had BE for 10 years. I have had it since around 2001 or so. I also do not have MAC or at least do not grow it. Thanks for your answer. It helps and let us know how it goes once you start the Brinsupri. So glad you finally got it to try!

@irenea8 I may have been approved but I am still awaiting the out of pocket cost to me. I am a bit scared hearing the amounts some have reported though for most it appears to be quite reasonable or at no cost. I would definitely pay my share to the $2000 yearly. But if they tell me some ungodly amount every month I am just going to wait it out to see what value others are seeing over a longer period of time. I am also signed up for the Phase 3 Airtivity Study at the University of Michigan site. However, I keep getting updates over the last 6 weeks that they are still preparing for the start before they move me out of the "virtual waiting room". And just my luck I would get the placebo. So, till I hear word... airway clearance and more airway clearance for me.

I just wanted to share with you that after about 12 days on Brinsupri I have become cautiously optimistic.
I have noticed a surprising increase in my energy, less mucus, particularly green mucus. This was very surprising to me because as mentioned by other members, I didn’t expect any results or improvements until 4 to 6 weeks.’
I have cut back on my air clearance, particularly the best Vest because I fell and injured my back and could not cope with putting it on
Also, I missed one day of evening air clearance… surprisingly, I have Not noticed any difference even with the reduction in air clearance
Nevertheless, I have continued to feel much more energetic and strong. I never had much of a cough, but I do believe this could be a very promising drug for most of you.

I have upped my regimen slowly. I’m really fast walking 30 to 40 minutes and now I am able to do a little bit of a jog
This is truly a hopeful experience
Also, the study concluded that there was only a 20% reduction in flares and exacerbations, etc.
That may be the case, but overall, it has been a very positive experience
Minimal side effects Except for some annoying headaches, which disappeared after the first week
PS I’m on the 10 mg dose
I’ve tried it within without food and it doesn’t seem to make a difference although I do take it in the morning
I hope all of you have the opportunity too. Try this very promising medication.
It’s worth the hassle of getting it.
I’m terrified that this will change because really I haven’t felt this good in two years since I was first diagnosed with chronic pneumonia with abscess, etc.
Best regards to all Jill Crawford

@dpaula
Hope it is very little out of pocket for you. What a shame this drug is just not available at a reasonable price and on the formulary lists. Drug companies are very greedy. Keep us posted! I still have no idea which Part D to choose.

@irenea8 There's a conversation on NTMinfo.org which might interest you. Brinsupri insurance coverage, especially this comment which came from an insurance person:

"This is only true if you have a plan that has Brinsupri as a covered drug on the plan formulary (list of their covered drugs). I have checked, Blue Cross, Humana, Cigna, UnitedHealthcare, Aetna and Wellcare. No one covers Brinsupri. If it is not on your plans formulary (list of their covered drugs) then you will continue to pay full price. You would have to have your doctor submit a request to your prescription drug plan to have Brinsupri added as an exception for you. The $2,100 drug maximum out of pocket only applies to drugs on the plan's formulary or added as an exception."
https://connect.ntminfo.org/discussion/brinsupri-formulary

@irenea8 There's a conversation on NTMinfo.org which might interest you. Brinsupri insurance coverage, especially this comment which came from an insurance person:

"This is only true if you have a plan that has Brinsupri as a covered drug on the plan formulary (list of their covered drugs). I have checked, Blue Cross, Humana, Cigna, UnitedHealthcare, Aetna and Wellcare. No one covers Brinsupri. If it is not on your plans formulary (list of their covered drugs) then you will continue to pay full price. You would have to have your doctor submit a request to your prescription drug plan to have Brinsupri added as an exception for you. The $2,100 drug maximum out of pocket only applies to drugs on the plan's formulary or added as an exception."
https://connect.ntminfo.org/discussion/brinsupri-formulary

I just wanted to share with you that after about 12 days on Brinsupri I have become cautiously optimistic.
I have noticed a surprising increase in my energy, less mucus, particularly green mucus. This was very surprising to me because as mentioned by other members, I didn’t expect any results or improvements until 4 to 6 weeks.’
I have cut back on my air clearance, particularly the best Vest because I fell and injured my back and could not cope with putting it on
Also, I missed one day of evening air clearance… surprisingly, I have Not noticed any difference even with the reduction in air clearance
Nevertheless, I have continued to feel much more energetic and strong. I never had much of a cough, but I do believe this could be a very promising drug for most of you.

I have upped my regimen slowly. I’m really fast walking 30 to 40 minutes and now I am able to do a little bit of a jog
This is truly a hopeful experience
Also, the study concluded that there was only a 20% reduction in flares and exacerbations, etc.
That may be the case, but overall, it has been a very positive experience
Minimal side effects Except for some annoying headaches, which disappeared after the first week
PS I’m on the 10 mg dose
I’ve tried it within without food and it doesn’t seem to make a difference although I do take it in the morning
I hope all of you have the opportunity too. Try this very promising medication.
It’s worth the hassle of getting it.
I’m terrified that this will change because really I haven’t felt this good in two years since I was first diagnosed with chronic pneumonia with abscess, etc.
Best regards to all Jill Crawford

It’s really difficult to figure out how it works. I have Medicare advantage ppo Aetna and after my doctor send the order for brinsupri it was approved but my health insurance sent me a letter that the medication is not on the formulary. I pay $5o copayment every month.