Brinsupri follow-up

Just started today
Will let you all know
I am reiterating my Suggestion that you keep calling the company to find out where you are in the process of being cleared to obtain the medication

I stayed on it for two days and on the second day found out insurer had cleared the Prior authorization And no copayment
Then they connect you with the pharmacy and there are a bunch more screening questions, but bottom line. I got it today by FedEx.
No copayment
Ask your pulmonologist to write you a prescription
Mine told me I was the first to receive it at Ucla

@rmoore901 If I am not mistaken that out of pocket limit of $8,850 is an annual amount and that is why if you can do the Medigap (Supplemental) you, in a way, are paying that in small increments as you go along each year via the premiums. However, ..........if you go into the hospital for a few days one year and then the next year you would be ahead with the Medigap Policy vs having to pay the Advantage Plan Premiums each month plus the $8,850 every year as an out of pocket expense. In a sense there is less paperwork also with the Medigap...With the Advantage Plan if you feel you might need to keep track of what you have paid out each year under the Advantage Plan....meaning keeping track of the out of pocket expenses amount paid out under the Advantage Plan to make sure all is correct.
I pay my small Medicare Deductible, Medicare Premium and Medigap Premiums and then after that I don't give a thought about it afterwards in terms of co-pays, tracking paperwork and payouts.
Hope this makes sense to you and others.
Barbara

@charisscurry I am taking 25 mg and on day 5 as well. I can't really say if I've noticed a difference just yet. I'm cautiously optimistic.

Wondering about 2026 and Brinsupri coverage especially for someone like me who will get Part D for the first time in order to get Brinsupri. Found this information for what it is worth:

There appears to be confusion regarding Brinsupri coverage in 2026, stemming from the fact that it is currently being obtained through Part D while its newness creates uncertainty for future formulary decisions. AI models that analyze drug data may also flag issues with coverage, but this may not account for real-time negotiations.
Here is a breakdown of why this discrepancy is happening:
Negotiations are in progress. Brinsupri was only approved by the FDA in August 2025. The manufacturer, Insmed, is currently in the process of negotiating coverage with various insurance providers, including those that offer Medicare Part D plans.
Formulary placement is not guaranteed. A Part D plan's list of covered drugs (the formulary) changes annually. While a plan might offer an exception or cover the drug now, it does not guarantee Brinsupri will be on its standard formulary in 2026. A drug's inclusion is a complex process that considers price, effectiveness, and the number of existing alternatives.

Current patients may have temporary access. The reason some people are getting Brinsupri now through Part D is likely due to an exceptions process, which allows for coverage of a drug not on the standard formulary. For 2026, those same patients will likely need a new exception, and coverage will depend on the terms of their specific plan for that year.
The $2,100 out-of-pocket cap for 2026 is relevant. For high-cost medications, the Inflation Reduction Act's new $2,100 cap on annual out-of-pocket costs for covered drugs can provide significant relief to patients. However, this cap only applies to drugs that are on the plan's formulary, and the high cost of Brinsupri may influence how or if plans add it.
What to do for 2026 coverage
Check your specific Part D plan. During the upcoming Open Enrollment Period (October 15 – December 7, 2025), you should review the 2026 formulary for your specific plan. Your plan should provide you with an Annual Notice of Change (ANOC) that details what drugs will be covered.
Consider alternative plans. If your current plan will not cover Brinsupri in 2026, you may need to switch to a different Part D or Medicare Advantage plan that does.
Consult a professional. A benefits counselor or pharmacist can help you compare plans and understand your options for coverage in the new year.

@irenea8 My understanding, at least through 2026, is that Brinsupri is a prior authorization (exception) medication, whether you're on Medicare (Part D) or private insurance. I believe it falls under the catastrophic coverage category and counts towards the out-of-pocket maximum of your particular drug plan. As you mentioned there's a $2,100 out-of-pocket cap for 2026 for Part D. Any co-pay you make will go towards that OOP max for Medicare or private insurance. How much your "co-pay" for Brinsupri is depends on your drug plan and household income. Once you reach the OOP max you will pay zero dollars for subsequent medications for 2026.

@scoop
where did you get the information that it will only be available as an exception medication for 2026? And will therefore NOT appear on any formulary's yet?

Not having part D as yet how would I know which one to sign up for in hopes that they would grant me the exception? Or could an insurance company not approve it for exception if you are new to their coverage? The OOP is not my concern. It is getting approval for Brinsupri.

@irenea8 My doctor told me that Brinsupri is an exception only drug and requires a PA. Brinsupri is not on any drug formulary and will not be for 2026. That's why Brinsupri is an exception [PA] drug. Medicare knows about the drug as Insmed has negotiated with them. It might well be, but I do not know for sure, that any Part D drug plan you select will have to "cover" Brinsupri, as Insmed has negotiated this with Medicare.

Have you run this dilemma by a SHIP Medicare volunteer in your area? It seems to me that if your doctor submits a PA your drug plan has to approve the drug, assuming it's medically necessary and there are no lower cost substitutes. There aren't! Your SHIP contact could verify this.

Another idea to call Insmed and speak with an educator or Inlighten co-ordinator, 833-544-4800, ask for the contact information of the speciality pharmacy in your area, contact that pharmacy and find out which insurances they have successfully dealt with. They tend to be very helpful. Another idea, is to contact the NP or PA in the doctor's office to look up other patients under the doctor's care who are on Brinsupri and to see what drug insurance plan they have?

Personally, I'd start with SHIP or Insmed and last resort the doctor's office. Perhaps others can weigh in on their experiences. I really hope you can sort through this and let us know what you find out. I truly hope you can start Brinsupri and that it benefits you as much as it has benefited me.

@scoop
Thanks Scoop. I know Brinsupri is an exception only drug and requires a PA but I was not sure that would be the case for 2026. Will it ever be on a formulary or always a PA. So I guess you are saying that if I select a drug plan Part D and my Dr submits a PA they will have to approve it? I can try SHIP contact but in my county the rep I have to deal with (SHIP) may not be that well informed. Last time I tried using them they were very uninformed. I have been in touch with Insmed's Inlighten and they were not helpful for anyone on Medicare. But trying to find out which insurance plans worked for other patients is a good idea (IF they will tell me).

Another obscure question. We may have a friend who will give us the funds so that I can get three months of Brinsupri out of pocket (assuming that in January I would be able to get it through Part D going forward). But I wonder if you pay for it out of pocket could that somehow complicate your ability to get approved for Part D PA? Weird question but who knows with insurance!

@irenea8 Call InLightin back and ask what specialty pharmacy serves your area and call them. The InLightin folks don't have much info but they should know the name of the pharmacy. I would try SHIP again and ask for someone else or call Medicare directly.