I am so truly privileged to have good health insurance and for the specialty CF programs that allow me to get the medications needed to fight CF and grant me every extra beautiful breath. I am so grateful for my CF team that ensures I have the capability and access to what I need to fight CF: they spend countless hours dealing with my insurance company, enrolling me in or finding out information about specialty programs, and managing and adjusting my prescriptions. But CF still comes at a high cost. I am so very lucky to have Mark who never questions the financial burden of CF, but sees every therapy and treatment as another day together.
By February 1st I have usually reached my insurance's deductible and out of pocket max from prescription drug costs and doctor visits. Every January I know instead of booking a nice European vacation, I will be buying a chance at one more breath.
The cost of 3O days to fight CF [prescription drug & therapy costs]
Cayston.......................$6,786
TOBI...........................$8,O12
Pulmozyme..................$2,843
HyperSal......................$62
Prednisone....................$2O
Amicar.........................$85O
Voriconazole................$7,O15
Mephyton.....................$349
Pantoprazole.................$55
Albuterol.......................$5O
ProAir...........................$15O
Azithromycin................$186
Atenelol.........................$1O
Cipro.............................$3O
Bactrim..........................$15
Enzymes........................$3,2OO
Mucinex D.....................$4O
Zantac............................$25
Vitamin D......................$15
CF Vitamin....................$15
Dulera............................$25O
*This does not include the cost of IV therapy or hospital visits/ stays
Kalydeco, a new and promising therapy that corrects the underlying cause of CF costs $3O,OOO for a 3O day supply. [This medication is only effective on 4% of people with a certain CF mutation] What would you be willing to pay to cure CF, to never worry about CF stealing another day?
Cost of equipment and other therapies
VEST.............................$15,OOO-$2O,OOO
Nebulizer........................$15O
Acupuncture...................$65/time
Neilmed...........................$15
Travels costs for doctors appointments in Minneapolis & Sioux Falls per year.
Hotel, Gas, Food............$2,OOO
This is my life, and I will do everything I can for one more beautiful breath. I am so thankful for my CF team, Mark, and my family who have always done everything possible to ensure I have access to the best medical care and therapies: I owe every breath to you. The cost of living with CF? Roughly $3O,OOO a month for just prescriptions. The chance at living? Priceless. Love to you all.
What are you willing to pay to live another day?
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