The Cost of Cystic Fibrosis

Right now, Austin is on several different medications. Yesterday was the first time I really calculated the cost of all the medications for a one month supply.

Prevacid 15 mg Solutab – $235.07

Zenpep 3000 (enzymes) – $648.04

AquADEKs (vitamins) – $28.06

Albuterol 90 mcg Inhaler – $51.59

Sodium Chloride 7% (for nebulizer) – $49.65

TOTAL COST FOR ONE MONTH OF MEDS – $1,012.41

Tyler and I are very lucky that we have insurances set up to cover all of Austin’s medications and CF Center visits at UCSF. Who knows how much those appointments would cost us!

As Austin gets older, he will need more enzymes and additional medications for his lungs. There are some new drugs that may be combined for his use in the future.

One of these drugs is Kalydeco by Vertex Pharmaceuticals. Kalydeco, which costs $294,000 for a year supply (YIKESSSS!!!), treats treats the root cause of Cystic Fibrosis by correcting the genetic defect (CFTR). This drug currently treats only certain mutations and is effective for 4% of the 30,000 affected with CF. About 50% of all people with CF have Austin’s mutation, two copies of DeltaF508, which Kalydeco, used alone, is not effective for. Vertex is in the process of trials for a drug that can be used in combination with Kalydeco that will make it able to treat those with the DeltaF508 mutations.

This is awesome because Kalydeco improves lung function, helps CFers gain weight and have less lung infections. Less lung infections means less lung damage. Severe lung damage and respiratory problems are the main causes of death for those affected by CF.

Thankfully, Austin was born in a time where there are a lot of promising treatments and medications in the works.

Article About Kalydeco

Kalydeco corrects the CFTR problem...

Kalydeco corrects the CFTR problem…

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