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  1. Replies
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    Typically when he starts Tobi, he trys to clear...

    Typically when he starts Tobi, he trys to clear his throat about once every minute, but never produces any sputum. Now he is starting to produce sputum. We are hoping that he is clearing out the...
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    He did get the medicine. The UPS guy gave them...

    He did get the medicine. The UPS guy gave them to me as I walked in the door! Took the first dose last night. He said he was breathing better through his nose within an hour, he also had a headace...
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    Has taken nearly a month for the insurance to...

    Has taken nearly a month for the insurance to overturn their decision not to provide Kalydeco patience with R117h. Had to go through the appeals process. But the good news is that it is supposed to...
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    This is awesome news for my son! Although the...

    This is awesome news for my son! Although the prescription was denied by UHC twice. They said the R117H mutation was not approved yet. They are making us go through a formal appeal in writing by...
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    Nice to see the CFF getting a huge amount of...

    Nice to see the CFF getting a huge amount of money. But If you follow the money trail it comes back to the high price of insurance that we all pay. My wife basically works to pay for our...
  6. Also, I would not rely on maintaining any level...

    Also, I would not rely on maintaining any level of insurance if your are in the US with the way our health care system is changing.
  7. It is backwards. Insurance exists because bad...

    It is backwards. Insurance exists because bad things happen. If homes never burned we would not carry fire insurance.
  8. If you are not able to afford IVF might you might...

    If you are not able to afford IVF might you might not be able to afford the care of a child with CF. Latest and greatest drugs are 30k/month. If you are middle income the opportunities for...
  9. I am no expert either. But unless the...

    I am no expert either. But unless the colonization and damage was already severe, I would think the same mechanisms that stop non-CF people from being colonized would fight off PA or MRSA when the...
  10. I looked into this about 10 years ago. Insurance...

    I looked into this about 10 years ago. Insurance would not pay for this and they were just starting to have offices outside of Georgia ( the country near USSR). Overall looks like a great old...
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    Was told that there is a possibility of the lungs...

    Was told that there is a possibility of the lungs repairing themselves. Some coal miners and smokers who quit early enough often see their damage reversed. A similar thing could happen to those...
  12. Interesting, I am guessing that there is a lower...

    Interesting, I am guessing that there is a lower limit of lung function where the initial shock to the system of releasing all of the build up in the lungs is too much for the body to take. I...
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    Just read the article. The argument about using...

    Just read the article. The argument about using existing treatments is poor. The argument about states not having the money seems to be more valid, although that rarely stops them from overspending...
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    I knew this was going to be a huge issue. The...

    I knew this was going to be a huge issue. The other thing to keep in mind is that Vertex in the past has invested in break through type drugs(Aids related?) only to be surpassed by other companies...
  15. True but vertex has had early success combining...

    True but vertex has had early success combining Kalydeco with other drugs. My simple understanding, is that Kalydeco only helps those that have partially functioning cells. It corrects the cell...
  16. Talked to my son's CF doctor this past week. He...

    Talked to my son's CF doctor this past week. He said Kalydeco is just the first in a new generation of drugs that will slow/stop the progression. The life expectancy charts are going to be improved...
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    XBOX or any other video games. Buy a new game...

    XBOX or any other video games. Buy a new game that he likes and limit it's use to when he is on the vest/inhaler. My son can play most games while using a vest/inhaler. He says he has a hard time...
  18. Kalydeco New Drug Application submited to FDA for R117H for 18 yo and older

    It is official the application has been submitted to the FDA for approval. I was told this process takes 6-9 months. Wish this was done 6-9 months ago when the test was completed, but they had to...
  19. FEV1 although is an important measure does not...

    FEV1 although is an important measure does not tell the full story. If looking young was an important measure, Pulmozyne would be comparable to applying make-up. Kayledeco/Lumacator would be like...
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    He has 2 gene mutations to have CF. R117H is one...

    He has 2 gene mutations to have CF. R117H is one of those mutations. 5T Allele is an additional designation associated with a gene mutation. For example if R117H was a name of a car like a Civic, ...
  21. Thread: CFF news

    by CFParent2
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    Truly a modern day miracle delivered to the...

    Truly a modern day miracle delivered to the largest CF community. Hopefully this gets through the FDA/Government agencies/insurance providers in a timely manner. Hats off to the CF Foundation and...
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    Last thing I heard was that Vertex and the...

    Last thing I heard was that Vertex and the Canadian government were in negotiations on what to charge for the drug. I am guessing that is holding up everyone in Canada from getting the drug unless...
  23. We are in the same boat with R117H and DF508. ...

    We are in the same boat with R117H and DF508. Looks like the FDA should approve for use over 18, but the insurance denied the off label use, stating that the FDA has not yet approved the med for my...
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    Country Price Australia Estimated USD...

    Country
    Price


    Australia
    Estimated USD $300,000 a year


    Canada
    At least USD $300,000 per year
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    Too much times two :) I would like to know what...

    Too much times two :) I would like to know what the costs are for Kalydeco in the countries with socialized medicine. I am guessing it is not 300k/year.
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