Brinsupri follow-up

Posted by scoop @scoop, Sep 29 12:21pm

It seems a bunch of us have started Brinsupri. Let's use this thread for discussion. If you are taking Brinsupri have you noticed anything different, including changes to bronchiectasis or side effects? How long have you been on it?

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Profile picture for blm1007blm1007 @blm1007blm1007

@sueinmn Curious. Does the Gov't Plan, Supplement Plan, include the D, prescription plan, built into it...or is that an extra cost?
My State Plan, Supplemental Plan, has the D built into it and I also have a Dental Plan on it for a total of $271.00... I just recently found out how good a price it is when I was curious about Private Insurance Plans and inquired to see if I was paying more than the outside Insurance Supplemental Plans. Found out I was is good hands with the State Plan.
I liked what Irene8 has said about her experience, so far, with her going on the Brinsupri.
If they change the Prescription Deductible going forward for 2027 I might be thinking...."try it sooner than later."
Have you heard, or do the doctors even know, if the Brinsupri is going to be a medication for us that we have to take forever due to the inflammation of BE?
When do you take off on the big bird or cruise?
Barbara

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@blm1007blm1007
I wish I was on Brinsupri! What was my experience Barbara? 🙂 I do not have part D so for me it would be over 7K a month until January when Part D will kick in (I plan to sign up of course). I could really use the Brinsupri now. Have even considered paying out of pocket which is crazy.

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Profile picture for scoop @scoop

@pfists My understanding is that assistance is available if yearly family income is $150,000 or less.

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@scoop Wow! That would be great. Every assistance plan I’ve looked into the household income cap is more like $33,000-$52,000. I never qualify at what is poverty level for most.

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Profile picture for irenea8 @irenea8

@blm1007blm1007
I wish I was on Brinsupri! What was my experience Barbara? 🙂 I do not have part D so for me it would be over 7K a month until January when Part D will kick in (I plan to sign up of course). I could really use the Brinsupri now. Have even considered paying out of pocket which is crazy.

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@irenea8 Oh I didn't look closer at the post....and thought it was you on the Brinsupri.
January is just around the corner and in the meantime we will be learning more from people on the Mayo site. Paying out of pocket in a sense, if it is going to do what it is suppose to do and plus, it might not be crazy for some. You just have a few months till January but I understand the frustration.
I will see the pulmonologist(s) this month and will be discussing my getting on it. The medication helps systemically if I understood Dr. Daily's recent talk. That might help my dry eyes and eczema also.
I take it you are going to have to decide between an Insurance Advantage Plan or Original Medicare with Supplemental Plan and D Plan.?
Barbara

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Profile picture for irenea8 @irenea8

@wangling
are you noticing benefits already Ling?

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@irenea8, Not yet, I think it is too soon. Today is my fifth day.
Are you going to try it, it may reduce your mucus.

Ling

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Profile picture for Sue, Volunteer Mentor @sueinmn

@blm1007blm1007 The plan includes Part D, the prescription coverage, but the Formulary (what is covered and co-pays, prior approval, etc) is different for Medicare than current employees. I also only have "dental" for one set of x-rays every 2 years, exam and cleaning twice a year. One eye exam per year, but no eyeglasses, with glaucoma, I had to appeal to see an ophthalmologist instead of optometrist. Hearing aids for my husband is $2500 every 3 or 5 years. Supplemental coverage for those would be another $200-250/mo.
We fly on Tuesday- tomorrow we finish the yardage do laundry, Monday we pack! So excited.

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@sueinmn As we have heard for years ...."With aging people need to be sure they have enough of the greenbacks for medical expenses. " How we have learned that one.
It is so interesting how each non-insurance plan, meaning gov't supplemental plans with Original Medicare operate and set their terms of usage.
Tuesday.....my special day also....I'll be saying hello to number 83 of my 8th decade. I am learning so much from my younger comrades on Mayo, THANKS.
Enjoy every moment of your adventure. We'll be thinking of you both as you make memories in unforgettable scenery and with people.
Barbara

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Profile picture for blm1007blm1007 @blm1007blm1007

@irenea8 Oh I didn't look closer at the post....and thought it was you on the Brinsupri.
January is just around the corner and in the meantime we will be learning more from people on the Mayo site. Paying out of pocket in a sense, if it is going to do what it is suppose to do and plus, it might not be crazy for some. You just have a few months till January but I understand the frustration.
I will see the pulmonologist(s) this month and will be discussing my getting on it. The medication helps systemically if I understood Dr. Daily's recent talk. That might help my dry eyes and eczema also.
I take it you are going to have to decide between an Insurance Advantage Plan or Original Medicare with Supplemental Plan and D Plan.?
Barbara

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@blm1007blm1007
Why would i have to decide between Advantage and Original to get Part D? I have original and plan to keep it!

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I have had bronchiectasis and MAC for 10 years. I failed 2 attempts of treatment due to side effects. I’m not feeling well and when I messaged my pulmo at MGH in Boston he stated I wasn’t a candidate? I’m bewildered, I have no co-morbidities.
He stated I would have to wait for my next appointment if I had any questions.
Any insights would be appreciated greatly!!
Thank you!
Deidre

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Profile picture for dstella @dstella

I have had bronchiectasis and MAC for 10 years. I failed 2 attempts of treatment due to side effects. I’m not feeling well and when I messaged my pulmo at MGH in Boston he stated I wasn’t a candidate? I’m bewildered, I have no co-morbidities.
He stated I would have to wait for my next appointment if I had any questions.
Any insights would be appreciated greatly!!
Thank you!
Deidre

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@dstella Are you seeing a bronchiectasis specialist at MGH? If so, ask for a virtual appointment or a call back from a nurse or NP from the practice. If not, get an appointment with the bronchiectasis specialists there. I see they are on the list of centers: https://www.bronchiectasisandntminitiative.org/Find-Care/Care-Center-Network/Find-a-Center

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Profile picture for irenea8 @irenea8

@blm1007blm1007
Why would i have to decide between Advantage and Original to get Part D? I have original and plan to keep it!

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@irenea8 I may not have communicated it properly or I misunderstood.
Advantage Plans are actually called Medicare Advantage Plans issued by Insurance Companies and have their own guidelines regarding medical care requirements or benefits. In a sense you leave the Original Medicare Plan when you go into an Insurance Carriers Medicare Advantage Plan. The main difference is that Medigap plans ...........offer greater provider freedom and predictability in costs by paying out-of-pocket expenses for Original Medicare........ but have higher monthly premiums. Medicare Advantage plans typically have lower premiums, bundle Part D and other benefits, but come with .......network restrictions and potentially higher out-of-pocket costs.......
The Original Medicare Plan is rolled into the Insurance Carriers Advantage Plan. These plans are allowed to put limitations on the client ......a Medigap Supplemental Plan does not put these same limitation on the client. There is more freedom of choice with the Medigap Supplemental Plan.
The Original Medicare Plan with a Supplemental Plan allows you to choose a Plan D drug plan along side your Supplemental Medigap Plan giving more choice. Under Original Medicare Plans with most Medigap Supplemental Plans you can change to another Plan D each open enrollment period if you find one D Plan does not have your medications and another does in their list of med's covered the way you need them to etc. etc.
Yes it is my understanding you can change easily from one Advantage Plan to another. Their is underwriting required if you want to go from one Supplement Plan to another. If you have an Original Medicare Plan with a Medigap Supplemental Plan and a separate chosen Plan D plan you have a plan that is easier to understand and you have predictable costs.
Hope this makes sense. It can be very confusing to many because of the lack of up front explanations and information given or withheld by the insurance brokers who tend to 'push' people into the Medicare Advantage Plans.
Sorry for the long explanation if you knew all this. For some it can be so confusing and not easy to fully understand unless you do much reading and research.
Barbara

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Profile picture for Sue, Volunteer Mentor @sueinmn

@kathyjjb I'm not sure what qualifies as "affordable", but as a retired government employee I pay over $600/mo premiums for the two of us for our supplemental insurance, plus Medicare B premiums of $370/mo (combined.) We are fortunate that we are able to afford it, but with changes coming none of us knows what the future might hold.
At this time, I have few exacerbations, so have not checked to see what Brinsupri might cost. I do know that getting approval for name brand drugs for either of us has been an ordeal these past 5 years, so will not even consider asking unless my bronchiectasis progresses.

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@sueinmn I may have over generalized. That said, I have noticed there are better insurance plans out there for Federal employees, Military, and of course our politicians. My current plan only pays 60% for Tier 4 and 0% for any tier 5 medications. I may look at supplement plans again, but my situation is different from most: I am a single parent to my adult son with Down Syndrome, and we get 0 support from his father-hasn't seen him in 20 years-not a penny sent his way. Most people don't get that it's almost impossible for someone to even have a job in my situation, particularly since he has had health problems. Fortunately, I was able to do self-employment. The bad news is my work has most likely been the cause of me contracting both BE and MABC. So, consider yourself extremely fortunate.

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