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Wow, those are outrageously high! I'm sorry!! Our deductible is $3,300 and I thought that was bad, I guess you helped me put that into perspective! I have Medicare parts A and B as well but don't know much about the Part D plans. I know there are a couple people on here who have part D plans...

Thanks kyeev, this made me laugh but at the same time gave me goosebumps! ;) I'm definitely excited and hopeful but at the same time am trying to remain very guarded. Now if I could just get my hands on the darn drug we could find out how accurate you are!! Autumn

Wow, thank you so much for looking at that for me! I really really appreciate it. You definitely helped as I had not been able to glean that much from reading it myself! That sounds pretty darn promising for me! I will definitely continue trying to get my doc to prescribe it for me. It...

Great Scan, thanks for the clarification! Now I have more concrete advice for you. :) So since Medicare is your primary you should absolutely have them paying whatever meds they will cover before your private secondary pays. This means for sure your Tobi, Pulmozyme, and acetylcysteine (per...

Thanks to everyone for the great info! I have a residual function mutation and I have found the slides and power point posted here to be very interesting. However I am FAR from a researcher/doctor and am not 100% clear on how to interpret the info. GenH (or any other resident expert!), if you...

Hello again! I am on my husband's United Healthcare policy through his employer as my primary. So Medicare is currently my secondary. So my prescriptions are billed through United Healthcare first, then to Medicare Part B. The United Healthcare plan pays 90% of prescription cost. So here's...

Hi Scanboyd, Medicare part B covers just a select few. Pulmozyme and Tobi are the only 2 that I know of for certain. I *think* they may cover acetylcysteine but I have such a low copay after my primary pays that I haven't bothered with seeing if Walgreens can bill part B for it. I get my...

Hi Dowling, I think you've gotten some good advice so far. Someone mentioned the Cystic Fibrosis Patient Assistance Foundation. My personal advice would be to start there. If you go to http://www.cfpaf.org/ there is a screening tool on their homepage. It asks a few really simple questions...

I guess I'm the only one she's not replied to. I emailed her a week ago Friday, and called the week before that. I'm happy for those of you that got a response and I really hope you are able to get in! Wouldn't that be great to go open label???? It's an awesome chance to get on the drug...

litteni, Thanks so much for bringing back this old post and drawing light on gallium! I just wanted to tell you (and everyone else interested) that I asked my doctor about this at clinic yesterday. I thought there was a decent chance he would have no clue what I was even talking about and/or...

Thanks everyone! It's looking like perhaps I don't meet the criteria for the study. Serves me right for not taking to time to read and comprehend everything! I got so carried away with excitement when I saw my mutation was included that I guess I didn't process everything! I do have one...

Mandy, Have you heard of anyone having success in getting into this trial? I have called and left a message with Connie St. Clair, emailed Vertex, and talked to the research coordinator at my clinic and have gotten nowhere. Connie has not returned my call, the coordinator at my clinic says...

I called Connie first thing this morning and left a voice mail. Haven't heard anything back yet and wondering if the study is full....... Claire- did you try calling or have any luck?

Thanks Mandy! Will call Connie tomorrow! Will keep you posted!

It's me again! I was so excited I didn't read through the clinical trial page 100% before posting. Do you guys take that to mean that National Jewish will be the only place doing this study? I'm about an 7 hour drive from Denver, so I still think it would be doable depending on the # and...

I just replied in the other thread, hadn't seen this one yet! Drama, I have S945L and I am going to try like heck to get in the study. I have been trying to find a way to get this drug and this could be my ace in the hole. I'm going to hop off here and email the research coordinator at my...

Gen H, Thanks SOO much for posting this! I really appreciate you taking the time to post all the great info that you do! I have S945L and have been hoping and hoping that would open this study up to these additional mutations. The research coordinator at my clinic told me it was a possibility...

Sorry, I don't have any brilliant ideas for you! Just wanted to say that I think you are already doing a great job! I love Sandra Rinomato and I love Property Virgins! I was sad when she left as host, and I didn't know she had a new show. I checked out her website and saw her mention of...

Hi Jenny! I'm in Lincoln. I'm 31 w/CF. I go to clinic at UNMC (obviously). If I remember right you're in Plattsmouth? I know of a couple other people in Nebraska on here but that's about it! Let me know if you had any other specific questions. Take Care, Autumn

http://www.huffingtonpost.com/2012/09/05/carlos-bbq-sauce-makes-dy_n_1858511.html?icid=maing-grid7|main5|dl17|sec3_lnk3%26pLid%3D201903 If I lived in Indiana or Kentucky I'd go pick up a bottle or two! Darn.