Skip to main content

I don't have $6,000 a month, are you kidding?


In my last blog I discussed Transplants! I really hope everyone saw the stories/videos I shared about two CFer's Tranplants! I wanted to discuss something more serious, since lately I hadn't talked about anything CF too much.     Then I received this in the mail:

Nothing new, just insurance not wanting to pay for a Med!


I have been on Tobi since I was a teenage! It is highly effective with CFers who have Psuedomonas Aeruginosa (the only CF bug I have). And my doctor, and many other doctors believe it in rotation with Cayston (the newest nebulizer) can greatly help our lung function. I have been on Cayston and Tobi alternating months now, for at least 2 years. We (my doctors and I )both believe these two nebulizer treatments together are really contributing to my improved lung function (over 20% increase)! I'm up to 61% and now, because there isn't enough research supporting the two together, they won't allow it.

I love the part (where I highlighted) that says " future studies will hopefully explore the question whether the combination of them is more efficient than current treatments... But today, these studies haven't been performed yet..."

So, in other words, hopefully, one day you can prove they are helpful and will save other lives, but until you can prove they will save you, we won't pay for them, so good luck on your lung function.

Well, this isn't over! My doctor is amazing and has gotten my insurance to pay for  MANY prescriptions they have been refusing!

Dear Insurance Companies,
I'd be careful, if These "future tests" do reveal that the combo of treatment improves lung function then:
 1. By denying us them, we are probably going to get sicker, costing you hospital stays, long term oxygen, etc. 2. AND if my lung function goes down and I find out later this drug I was refused could help, oh, there will be hell to pay. (sorry, kids for the cuss word) but I mean it!

Haha, my favorite part on the back of the letter it said I was more than welcome to pay for the treatment out of pocket. Both of these drugs EACH cost $6,000 a MONTH! um, yeah sorry, I can't afford that. So insurance we will be duking it out over the next few months!

Anyway, even though this really makes me mad, I'm used to it and it is nothing new. But, it is an obstacle we deal with all the time! And it time I shared that info with all of you!
Labels:

Comments

Post a Comment

Popular posts from this blog

How Fostering and CF impact my work

I haven't been on my blog much.... I think that is because most of my blogging is currently been done on Health Union's Cystic-Fibrosis.com (here is link to all my posts on their site: https://cystic-fibrosis.com/members/cherizkunkel/ ). I decided last fall to step away from real estate after 3 years in the business. It was tough to say good-bye, especially since I had tripled my volume and business in the last year. However, I didn't have time to add any new clients; I kept saying, maybe next week, next month I can fit more work into my schedule. The truth is fostering takes a lot of time. We have between 5-8 monthly visits at the agency, 1 court ate a month, 2 home visits from the caseworker a month, plus e have 2-3 doctors/specialist appointments for our current kiddo. We have lots of paperwork we fill out, gas mile logs, receipts to add, and more! Our kiddo also participates in gymnastics and dance two nights a week. We go to a fosterparent support group with our kid ...
2 comments
Read more

Updates!

 Hey everyone! Sorry it’s been a while. Covid struggles have been all around and we have been focusing our on our kiddo and current life situations (jobs, home, everything really). We have been posting regularly on the Facebook page (www.facebook.com/CherizCFPage). We will keep you updated on there for now,  because we are doing some big changes to our current blog! Stay tuned!  In meantime, message our FB page if you need anything. Keep safe and stay happy.  We will be back. Promise! 
3 comments
Read more

Visiting Family (A Nice Break)

My Break From Chaos: I know my life isn't as chaotic as some people's lives; But lately, it's one thing after another. To fully understand the clinical trial, weight & Gi issues, and the potassium scare make sure to read my last post HERE . But, finally some GOOD NEWS: the re-do test I got drawn at the local hospital for my potassium came back in the normal-ish range. Which means that it WAS a fluke and some of the red blood cells did rupture when they drew it in the office. So yay, good news! The only bad part of it came later when Doc's office called, the clinical trial researchers won't accept the local hospital's sample. So I have to do the test a third time and on Andrew's day off tomorrow we will be spending the day driving 2 hours one way to get one blood test done at doc's office and then driving home.... I'm a lil annoyed.  Seriously, why didn't they figure this out before I spent a whole day calling & registering at the new...
2 comments
Read more