• Profile photo of clairebear28clairebear28
    Member
    #171205167252

    Hi~
    I have to apologize to everyone….I hope that I haven’t hurt anyone by having the thread taken down.
    I asked for them to take it down. I am going to put it in a blog similar to Noexcuses (Amy) so that people can look it up and yet it is not quite so public.

    My main concern is for all of us… I think right now several insurance companies are paying for the drug off label and that is awesome. I don’t want to start something here that makes insurance companies aware that they can deny it…that same sentiment was voiced to me by several people.

    I want everyone to be able to take the drug, atleast try it….that is not going to happen without awareness, but I don’t want it to hurt anyone’s chances either because I caused a brohaha on this forum.

    Another concern is that I am not a doctor or a nurse and I have no medical training and therefore cannot tell people how to proceed with their own care. Some of the messages I was getting made me a little nervous because I was asked to talk to nurses or doctors or asked if they could talk to my doctor or nurses. I am happy to tell anyone about my experience, but I am not qualified to talk to nurses or doctors and tell them why a patient should get to try Kalydeco…. the patient has to take that info to the doc with scientific data as to why it is indicated for genetic mutations OTHER than G551D.
    THE DEAL IS:
    kalydeco was very effective in all gating mutations tested in vitro….every single one. The reason they chose to test G551D is because it was the most common of the gating mutations so that as many people as possible could get it once approved. It worked even better on some gating mutations, they just aren’t as common and therefore vertex chose not to pay for a trial affecting a smaller patient group

    At the National CF conference the lead investigator for vertex/CF said that splicing mutations should also be considered a candidate because some CFTR makes it to the cell surface

    ALSO, there was a sub-group of DDF508 who responded better than the rest of the homogenous DF508 patients on the trial….much better. That is interesting and reason enough for every patient to try the drug since the investigators have NO IDEA why some responded and some didn’t

    Clinical trials for every mutation would cost billions of dollars and will never happen. While they try to figure out how to get the drug approved for more mutations, it is our job to do the work.

    I am here and you can email me on this forum or follow me on a blog I just created for my experience with kalydeco and also my experience with anti-inflammatory diet.

    My blog is saltyspark.blogspot.com I’m not a “blogger” so don’t expect bells and whistles….I’ll just update weekly.
    Also, I am posting it on my blog here, too. I’ll update both.
    Feel free to print out my experience and take to your doctor…. I am all for that!!!

    Profile photo of clairebear28clairebear28
    Member
    #171205298955

    Hi~
    I have to apologize to everyone….I hope that I haven’t hurt anyone by having the thread taken down.
    I asked for them to take it down. I am going to put it in a blog similar to Noexcuses (Amy) so that people can look it up and yet it is not quite so public.

    My main concern is for all of us… I think right now several insurance companies are paying for the drug off label and that is awesome. I don’t want to start something here that makes insurance companies aware that they can deny it…that same sentiment was voiced to me by several people.

    I want everyone to be able to take the drug, atleast try it….that is not going to happen without awareness, but I don’t want it to hurt anyone’s chances either because I caused a brohaha on this forum.

    Another concern is that I am not a doctor or a nurse and I have no medical training and therefore cannot tell people how to proceed with their own care. Some of the messages I was getting made me a little nervous because I was asked to talk to nurses or doctors or asked if they could talk to my doctor or nurses. I am happy to tell anyone about my experience, but I am not qualified to talk to nurses or doctors and tell them why a patient should get to try Kalydeco…. the patient has to take that info to the doc with scientific data as to why it is indicated for genetic mutations OTHER than G551D.
    THE DEAL IS:
    kalydeco was very effective in all gating mutations tested in vitro….every single one. The reason they chose to test G551D is because it was the most common of the gating mutations so that as many people as possible could get it once approved. It worked even better on some gating mutations, they just aren’t as common and therefore vertex chose not to pay for a trial affecting a smaller patient group

    At the National CF conference the lead investigator for vertex/CF said that splicing mutations should also be considered a candidate because some CFTR makes it to the cell surface

    ALSO, there was a sub-group of DDF508 who responded better than the rest of the homogenous DF508 patients on the trial….much better. That is interesting and reason enough for every patient to try the drug since the investigators have NO IDEA why some responded and some didn’t

    Clinical trials for every mutation would cost billions of dollars and will never happen. While they try to figure out how to get the drug approved for more mutations, it is our job to do the work.

    I am here and you can email me on this forum or follow me on a blog I just created for my experience with kalydeco and also my experience with anti-inflammatory diet.

    My blog is saltyspark.blogspot.com I’m not a “blogger” so don’t expect bells and whistles….I’ll just update weekly.
    Also, I am posting it on my blog here, too. I’ll update both.
    Feel free to print out my experience and take to your doctor…. I am all for that!!!

    Profile photo of KaylaKayla
    Member
    #171205167250

    ah unfortunate- do you know why?

    Profile photo of KaylaKayla
    Member
    #171205298953

    ah unfortunate- do you know why?

    Profile photo of hockeygrl617hockeygrl617
    Member
    #171205167247

    It was removed per her request.

    Profile photo of hockeygrl617hockeygrl617
    Member
    #171205298950

    It was removed per her request.

    Profile photo of sarah32sarah32
    Member
    #171205167245

    I was wondering the same thing….I would hate to think it got removed.

    Profile photo of sarah32sarah32
    Member
    #171205298949

    I was wondering the same thing….I would hate to think it got removed.

    Profile photo of cfsuckscfsucks
    Member
    #1747874

    Am I blind or did it dissappear?

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