It's been a week of an emotional roller coaster.... For those who don't know already, the FDA approved the Kalydeco which is the first drug to treat the underlying cause of Cystic Fibrosis. January 31, 2012 will be engraved into my brain as much as June 10, 2010(date of diagnosis).
This amazing drug will give Bryce the best chance at a "normal" life next to an actual cure. Bryce will continue to do his daily treatment regiment for the time being . There is a great chance that he may do less treatments a day and maybe cut back on some medicines. I pray for a day that he will just have to take the blue pill just twice a day, but realistically I know he will probably always have some kind of breathing treatment and vest time.
I am not complaining though! Since this drug treats the actual underlying cause of Cystic Fibrosis, his body shouldn't suffer any more damage from this awful disease.
The one draw back that this drug does have is it is only for about 4% of the Cystic Fibrosis community. That's only 1,200 that will be able to benefit from this drug. Luckily, Bryce falls into this 4% population. This drug only helps with the individuals that have the G551D gene. Bryce has this gene mutation as well as the DF508.
The drug is approved for individuals for the ages 6 yrs of age and older. Bryce obviously does not qualify for this yet, but he will be a clinical trial for the ages of 2-5yrs at his clinic here in San Antonio. We are so excited for this. We will find out more information at our clinic on Feb. 23...
You would think with this exciting news, I would be beyond happy and not worried about anything. But that is not the case. The price tag on this drug is $249,000. Yep, that's right! I guess Nathan and I will be needing to find second jobs.... Hopefully, by the time it is actually prescribed to Bryce, everything will be worked out with insurance and we can pay our normal copay for it.