This is the first of its kind for CF drugs. It has been said it is like the discovery of insulin for Diabetics. It will not cure CF, but will make life a lot healthier. It will hopefully be passed by the FDA in the next 6 months. This drug is only for about 4% of the CF population. It is not for Lexi's mutation, but definitely a step in the right direction...right:)
Kalydeco and hopefully the other drugs to follow will be meds that CF patients will have to take daily. It is not like chemo, or antibiotics in that you take a course and things are fixed. This med will cost patients approximately $200,000 per year, but I am sure insurance will help pay for part of that estimate. Patients will still have to do breathing treatments, take enzymes, and do all the other things that keep these patients healthy. Kalydeco will help correct the defective sodium/chloride channel at the cellular level.
I spoke to a patient online that has been part of the study trial for this drug. He is doing great. He has not been sick at all since starting the drug. He has gained weight and his lung function has increased for 60-80%.
What we all need to keep in mind is the health of these patients until this drug is approved and all patients get it. Patients with certain bacteria in their lungs will not be approved for this drug. Also any lung or other organ damage done by CF prior to starting this med can not be reversed. So we must keep at it...keep healthy, keep taking our meds, keep exercising...but most of all keep PRAYING!!!
http://www.cff.org/aboutCFFoundation/NewsEvents/11-2-NEJM-Features-Kalydeco-Study.cfm
No comments:
Post a Comment