Friday, August 16, 2013

How much does CF cost?

Hi everyone! I thought I’d do a blog post on the cost of having a child with Cystic Fibrosis, for no other reason that I’m constantly shocked when I see the retail costs of Charlie’s medications haha!  To see why he needs all this medication you can look at this blog post from last week.  I’m listing each medication, the approximate amount used in 30 days, and the cost for a 30 day supply.  I never actually realized that Charlie goes through 360-400 Creon pills every month- yikes!

Ok, here we go!

Albuterol Ventolin Inhaler: $47.86
Pulmicort (60 vials): $664.74
Pepcid (120mL): $200
Azithromycin (48mL, 4 bottles): $98.79
AquaADEK vitamins (60mL): $34.95
Vit-D-Sol (75mL): $20
Periactin/Cyproheptadine (180mL): $20.42
Pediasure 1.5 (72 cans): $269.61
Creon 1200 (360-400 pills): $835.20
Tobramycin (56 vials): $8,012
Pulmozyme (30 vials): $2,657.41

Total Prescription Cost Before Insurance: $12,860.57 (Again, this is only for ONE month!)
Total Prescription Cost After Insurance: Roughly $200-$300

Thank god for insurance right?!  

Here's the cost for his nebulizer and Vest machine (that machine is probably the most expensive thing we own aside from the house!)

Nebulizer: $150
Replacement cups: $20
The Vest machine: $20,000

Of course in addition to these expenses are the cost of a nanny (so Charlie isn't in daycare), copays for doctor appointments, and other things of that nature.  This all being said, we are VERY lucky we can get all these medications for Charlie, and very lucky that this is all he needs at the moment! There are plenty of other young CF kids out there that require feeding tubes, IV antibiotics, etc etc...and just imagine how much THOSE things cost!

One other thing I wanted to point out is how much space all of these meds take up in our small house. A few weeks ago my mom was trying to get me to take back Charlie's old Pack and Play and I jokingly said "Awww well I'd looooove to but my whole house is just filled with medical supplies and I couldn't possibly fit it in anywhere".  Of course I just didn't want to have to find a 'place' for a big item in my already over crowded house and was just kidding around but my dad responded "Pshhh you just have the Vest machine and the nebulizer!" and that got me thinking about how wrong he was....

Actually, there is a ridiculous amount of our limited space devoted to CF supplies and medications.  Sometimes we stock up on medications that get sent to us and then Charlie's prescription changes (of course we don't want to dispose of them because he could always need it again), or it is cheaper to get a 3 month supply instead of a 1 month supply and those meds pile up.  However most of the time the sheer amount of 1 month of medications results in lots of boxes of neb vials, multiple bottles of Creon pills, etc and simply takes up a butt load of space.  The picture below is a months supply of only 4 of his medications (so only about a third of what we get each month).

I thought it would be interesting to take a picture of everywhere in the house that is dedicated in one way or another to CF.  So last night I went through the house with my camera and took quick pictures of the build up of CF supplies, and a warning, I did not clean up first.  My house is messy.  Sorry bout that (kinda).

First, we have a drawer dedicated to syringes, and other little doodads to administer medicine.  In the photo below you can see that Charlie decided one day to empty it and line them all up in a row.  I didn't take a picture of the drawer because it was embarrassingly messy.

Next up, the refrigerator. Here we store our TOBI and Pulmozyme.  We have a 3 month supply of Pulmozyme (it saved $20 on the copay) so the box we use everyday is in the door with the TOBI and the other 2 boxes are in a drawer. The Lunchables are for Charlie, I swear I don't eat them (yuck).

All of his nebulizer parts must be cleaned and sanitized after every use so we keep those one a drying rack on the counter.  Once they're dried we store them in a Ziploc bag but honestly, since we do treatments twice per day there are ALWAYS neb parts drying on the counter.

We also have a basket where we store as much of his meds as we can, but the boxes and bottles get bulky so it rarely fits everything.

We also have bottles of meds on the kitchen counter and dining room table at all times because it's convenient to do meds after eating dinner.  The lollipops are an attempt at potty time bribery, if you were wondering.

We also get 3 trays of Pediasure 1.5 every month (this is a new development because it took 6 months for my new insurance to approve it).  This is the one tray we have left (due for a refill soon!), and you can see that they take up a lot of space.  We keep them on the floor in the dining room.....probably not the best place in the world but I don't know where else to squash 72 cans of Pediasure a month.

In our bathroom cabinet we keep an overflow of no longer used medications in case we ever need them again one day (the vialed albuterol is handy to have in case his inhaler runs out)

Charlie's Vest machine, nebulizer, and spacer/inhaler

So there you have it! The cost and space requirements for CF parents haha.  I don't know if any of this is remotely interesting to anyone other than myself but I guess it works as a glimpse into living with a chronically ill kiddo.  I'll be back soon with more posts :)



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