Brinsupri (aka Brensocatib)

Today I had an appointment with my BE specialist, who wants me to try Brinsupri. She started the paperwork on her end, and sent me a link to the patient support enrollment form. I only have conventional Medicare Part D, so who knows if it will be covered. She wasn't concerned that I'm currently being treated for MAC, and have had other recent lung bugs. Forward on into the vast unknown!

Over 150 hours on prior approvals etc. etc. Wow. Glad it went down to 20 hours in 2025. Interesting what Rick said. I do believe it is typical that NJH has a history of being able to secure medical needs for their patients. They were able to secure the Hill Rom vest for me immediately....however....for me it was not doing the 'trick' so it got sent back by me. Just hope that all who had a right to receive a credit got the credit from Hill Rom as they said would happen.
My thoughts: I wouldn't be a bit surprised if we see a company eventually who will go to battle for patients in their fight with the Pharmacy Benefit Managers to get meds approved for patients. Of course at a cost to the patient but in some cases it might be worth it for some depending upon total cost and for a life saving medication.
So much to know regarding insurance requirements and coverages.
Thank goodness Sue you had the energy, time and ability to fight the fight.
Barbara

Ironically, as I hit send on that message, we were notified that we needed another prior approval for a long-term med (it expired) fortunately think we solved it with 6 phone calls - we shall see.

Question- do they teach customer service reps to speak rapidly, or like they have a mouthful of chewing gum, intentionally so we get disgusted and give up? I had to ask 3 people today to speak distinctly or more slowly. To

Ironically, this only happens with call centers, not our local clinical or pharmacy staffs.

Often they’re on aging headsets in addition to mumbling. I ask if it would be possible to take me off the headset or give me to someone else. They usually speak up afterwards.

It appears it all comes down to, with those on the other end, concern and attitude, possibly.
It appears to me that those just entering certain fields do not understand much about their position nor the seriousness of their job and their position when it comes to helping others as a part of their job or career.
We are the lucky ones that had..... for some years.... good service and knowing what good service is.
Now back to the subject title of this blog.....MAC and Bronchiectasis.
Barbara

Started Brinsupri yesterday 25mg once daily. I think an added bonus for me is that I had a CBC blood work done yesterday as well, which shows my neutrophil count in my blood, which has always been high since I’ve had BE. Now my Pulmonologist did not order any additional bloodwork in the coming months, but i will ask her that this week if I should be getting bloodwork done periodically. It seems like it would be logical to monitor the neutrophil count while on Brinsupri right? Was anyone in the clinical trials and had bloodwork done while on Brinsupri? If yes how often? I will be sure to let everyone know how it’s going for me as I take this new medication for us. Fingers crossed 🤞

All the best to you! It would be interesting to see if your neutrophils go down. My understanding is that you would still have the same neutrophilic response, but it would be moderated and not over the top. So I don’t think the number of neutrophils would go down based on taking the drug, but who knows… also at the higher dose the Aspen study showed an improvement in FEV1.

Keep us in the loop and again fingers crossed, Linda Esposito

Wishing you the best on this new med! Are you on meds for NTM concurrently?

No, I currently have Pulmonary Fibrosis, and as the Radiologist said in my latest CT “Severe Bronchiectasis” this new medication “Brinsupri is for NCFBE only I believe not NTM.

I will Linda, I will try to report to the forum every 30 days or so, as that’s the number of pills in each bottle. I did see Dr. O’Donnells presentation a couple weeks ago, and will be watching the one on 9/10/25 also. Interestingly enough I did receive a message back from my Pulmonologist in Vermont that said I don’t need periodic bloodwork done while on Brinsupri. I believe you stated something to that effect earlier. Best wishes to one and all.