Brinsupri follow-up

@pacathy Thank you for your reply! I definitely fit all that criteria. I have been on multiple antibiotics and steroids and hospitalized this year. And pretty much every year. I have BE, NTM, Aspergillosis and asthma.
I wish they would let me see Dr O’Donnel who is listed on the NTM CENTERS OF EXCELLENCE but, they absolutely will not let me switch physicians.
I was so excited about the news of having those centers and now I can’t see the Dr recommended.
Frustrating to say the least.
I hope others have better experiences than I have had.
Stay well,
Deidre

@dstella Two things, immediate and longer term.
1) The first priority is to get you feeling better. Contact your current pulmonary doctor through the portal and describe your symptoms. As a reminder symptoms of an exaggeration include: increased cough and sputum, SoB, chest tightness, fatigue, low grade fever, feeling unwell, malaise. Likely, you'll need to drop off a sputum sample so make sure you request that.

2) Longer term (after you are feeling better) Call the office again to request changing docs. If the office refuses to let you change doctors, after one more try, it's time to get the patient ombudsmen involved. You, the patient, are the reason doctors and their team have jobs. Speak with the supervisor or get a call back from supervisor. Be sickly sweet! Ask to schedule or move your care to Dr. Christoper Richards, who is listed on the NTM Bronchiectasis Centers as a bronchiectasis expert. If you are denied it's time to pursue the patient ombudsmen route. You'll need to google how to go about that.

Hope this helpful and you feel better soon.

Wondering out of those taking Brinsupri that have noticed decreased sputum amount and a lightening of color, have you also noticed feeling better? Some say breathing better? I still wonder how it is going to work for someone like me with chronic infection/exacerbation daily.

@sueinmn I will certainly look into it this month. I'm not sure if I can afford it and may just have to take the lumps of coal that come with my plan. I appreciate that bit of information-so maybe?

@rmoore901 I actually have a PPO with my Humana. It's called Humana Choice PPO. At first it was great! But then after my NTM diagnosis, I started seeing the denials for equipment (Volara) and medications that my doctors were telling me that I should take. Someone mentioned to look at different drug plans. I need to do more research for sure.

@scoop Will do!
Thank you so much for your support.
Deidre

@irenea8 I've been on Brinsupri for about 2.5 weeks, and I am also taking an almost daily Allegra, which I began before Brinsupri. On the Allegra alone I noticed lighter less sputum but still plenty of phlegm for each airway clearance session. It seems a lot of nasal drainage was ending up in my chest. The Allegra alone has helped that little doubt. I have asthma along with an allergic profile in general. Enter Brinsupri, and 2.5 weeks later I can say there is even less mucus now and my chest is not as wheezy or crackly, and I am coughing way less. In the morning I still feel the need to clear but the process seems faster.

I asked my doctor about the side effect of respiratory infections, and they said they just don't know, that less than 20% of patients in the studies participated in daily airway clearance. So respiratory infections cropped up, plus it was studied during covid. It's not known how Brinsupri will help those with MAC or pseudomonas or fungal infections. From my point of view there's little downside to trying it, assuming you can get insurance to pay for some or all of it.

@kathyjjb thanks for clarifying that. Good to know. I just found this article which is informative so sharing the info.

Medicare Advantage. This is a private insurance alternative to original Medicare. These plans provide Part A, Part B and usually Part D benefits. They also may offer some benefits that original Medicare doesn’t, such as dental or vision care.

Medicare Advantage plans generally have a provider network, like the health maintenance organization (HMOs) and preferred provider organizations (PPOs) offered in many workplaces. They may charge more or may not cover care for out-of-network doctors and hospitals, except in emergencies.

Some Medicare Advantage plans require a referral from a primary care physician before they will cover specialist care. The plans are required to limit the amount of money you pay in copayments, deductibles and other out-of-pocket expenses, not counting premiums, each year. In 2024, the maximum out-of-pocket limit is $8,850 for care in your plan’s network, excluding prescription drug cost sharing, but some plans have lower caps.

You are not allowed to have a Medicare Advantage plan and a Medigap policy at the same time.

I am on Arikayce, not Brinsupri, but both drugs are managed by Panther RareX Pharmacy, a pharmacy that specializes in medications for rare conditions. They have been a delight to work with - excellent customer service. It felt like this was the very first easy thing I had encountered related to my MAC treatment.

Be sure to ask about “The Assistance Fund” which helps you pay for the medicine, either for Arikayce for MAC or Brinsupri. The Assistance Fund is paying the whole cost of whatever my insurance will not. It’s a blessing.

My two doctors and I agreed that I would wait on the Brinsupri for now since I am starting a second round of Big Three drugs (18 months this time) . We’ll see how it goes.

I hope you will have a good experience with Panther RareX, too. Good luck!

@scoop

make sure you follow up by calling
They’re are about three or four different components, but bottom line they had told me it was in prior authorization
I called back in two days and it had cleared and I was able to go through all the hoops and get it FedEx and delivered today. Yay.