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Thread: Today show and Kalydeco

  1. #11
    Senior Member
    Join Date
    Sep 2011
    Posts
    684
    While I see everyone's point. If I had not tried it. If I had not pushed to get Abby on it before we found out what her 2nd mutation was I don't even want to think about how many more surgeries we would have added to the 15 she had prior and IV treatments she would have had to endure for no reason. She is 1 of 12 that have 2585delT so I highly doubt that they will be testing anyone with that gene. I guess I just don't want anyone to be left out who it may benefit, because it's not just a small improvement. It's truly life changing. And I am so grateful for Martha and Kevin for the wonderful segment they did and am truly happy for them both.
    --Jenny
    Mom to Clayton 12 no CF
    and Abby 9 diagnosed at age 2, mutations are DF508 & 2585delT
    multiple sinus surgeries and currently on Kalydeco since June 2012

  2. #12
    Super Moderator
    Join Date
    Mar 2012
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    2,035
    Jenny I didn't at all mean Abby or others with rare mutations with potential benefit. We just know it doesn't work for dd508f.

  3. #13
    Senior Member
    Join Date
    Aug 2006
    Posts
    104
    Go Martha! So glad you are on Kalydeco!!! Thank you for your detailed explanation above. Has Kevin started yet? Please keep us posted on how you two are doing (well three with your other brother. Thoughts and prayers your way!

    My two daughters (20 and 14) have one G551D, which immediately qualified them, and they have been on Kalydeco since 2/2012. Their CF is very symptomatic, and they have a history of multiple illnesses and hospitalizations a year (with long term lung function still very high for CF standards). While they are still symptomatic, they have been stable, fewer exacerbations, no need for constant oral antibiotics, and NO hospitalizations since starting. Still on 2-3 resp treatments a day and asthma meds, enzymes, other GI meds, etc.

    Life is good

  4. #14
    BreathinSteven
    Guest
    Hi Martha…

    Thank you so much for your detailed response… It is always good to get many of the details that the media always leaves out.

    I did mention that I believed that insurance companies should not be for-profit, and should not answer to shareholders. And, I agree that it is unconscionable that the CEO of UnitedHealth is making the salary he is making. That is an entirely different topic and sheds a bad light on our entire corporate culture – not just health insurance organizations.

    I didn’t quite imply that covering this situation was throwing money away – what I said was, “it's a $600,000.00 gamble for the first year. If it works - that's wonderful and it was money well spent. If it doesn't - that's $600,000.00 down the drain and not available for other, possibly better treatments.” You apparently provided substantial evidence that it may work for your mutation – and it worked – and that may be the “money well spent” part of my statement. It still appears that the population that Kalydeco will help is rather limited – I don’t know if you experience identical improvement to those with the “approved” G551D mutation… But I can understand a provider’s reluctance to approve an incredibly expensive treatment with little indication that it might actually work. I’m glad that it worked for you, and I’m thankful for your improvement – but, if Kalydeco had done nothing for you, I believe it would have been throwing money away, and it could have reinforced their reluctance to cover similar situations.

    As for transplant survival and “throwing money down the drain” – there are similar provisions in providing transplant that work to disallow patients who would not benefit from transplant. If you are too sick – if you have certain conditions – you would not be allowed to be a transplant candidate. Dying within a year would not be a good thing – but testing and qualifying for the treatment is rigorous… Probably not unlike much of the research you had to do to show Kalydeco would likely work for your mutation versus a G551D request. I would look at it as “money down the drain” if the candidate was clearly not viable for the procedure – but proceeded anyways. But, as always, determining “clearly” is the difficult part…

    Thank you for the more detailed explanation – and for enlightening me on the background of your cases. My wife and I too have had rather epic battles with my insurance companies over the years – your substantiation is impressive.

    Love, Steve

  5. #15
    Junior Member
    Join Date
    Nov 2012
    Posts
    15
    Hi Martha - I really appreciate your sharing this detailed information. I sent you a PM - let me know if it didn't go through. Thanks! Anna

  6. #16
    lifeisgood729
    Guest
    Hi Anna. Your message did go through. I just never noticed I had PMs. Sorry. I sent you a reply.

    Martha

  7. #17
    Junior Member
    Join Date
    Aug 2017
    Posts
    2
    Hello guys,

    anyone knows about user cftrsplicing who was thankfully sharing lot of important information and studies about Kalydeco and its use and possible effects on splicing mutation?

    Thank you in advance to anyone who has news.

    Alessandro

  8. #18
    Junior Member
    Join Date
    Sep 2016
    Posts
    18
    Quote Originally Posted by malcom10 View Post
    Hello guys,

    anyone knows about user cftrsplicing who was thankfully sharing lot of important information and studies about Kalydeco and its use and possible effects on splicing mutation?

    Thank you in advance to anyone who has news.

    Alessandro
    You can try to send an e-mail to the adress on the cftrsplicing.com web site!

  9. #19
    Junior Member
    Join Date
    Aug 2017
    Posts
    2
    Quote Originally Posted by missme View Post
    You can try to send an e-mail to the adress on the cftrsplicing.com web site!
    Thank you.
    I'm in touch with him now.

    Regards.

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