Brinsupri (aka Brensocatib)
FDA approved Brensocatib today. Hooray for us. Let’s hope we have access to it as soon as possible and it gives us some measure of relief. Thank you to all the scientists and doctors and patients!
https://www.multivu.com/insmed/9347351-en-fda-approves-brinsupri-brensocatib
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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Level or Tier 1: Preferred, low-cost generic drugs
Level or Tier 2: Nonpreferred and low-cost generic drugs
Level or Tier 3: Preferred brand-name and some higher-cost generic drugs
Level or Tier 4: Nonpreferred brand-name drugs and some nonpreferred, highest-cost generic drugs
Level or Tier 5: Highest-cost drugs including most specialty medications
If the drug is listed with a tier in your plan, it is not covered. Sometimes an appeal can get coverage. An organization like NJH has a better chance of getting an appeal approved.
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3 ReactionsI think you meant to say if a drug is NOT listed? Even then , Tier 4 & 5 drug approvals are a "crap shoot" for us, depending on who is the Pharmacy Benefit Manager (PMB). This year we were fortunately able to switch away from the plan that gave us endless grief last year, even on some Tier 3 medications. Last year I spent over 150 hours on prior approvals, appeals, and more for Tier 3 & 4 medications, this year maybe 20 hours?
Another thing about formularies - the listing is not the "whole story" each medication may also have codes which indicate limits on dispensing, whether "step up" therapy is required (trying other cheaper meds first), and whether prior approval is required.
@irenea8 If I was starting this process, I would look for an independent (not tied to one insurance provider) Medicare consultant to walk me through this.
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4 ReactionsToday 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!
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6 ReactionsOver 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
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1 ReactionIronically, 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.
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2 ReactionsIt 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 🤞
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13 ReactionsAll 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
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1 ReactionWishing you the best on this new med! Are you on meds for NTM concurrently?