17 September 2011

The Cost of Pulmozyme

And you thought that twelve hundred vibrating vest was expensive?!?
Just wait...

Last week, Brian went to pick up Bennett's Pulmozyme from our local pharmacy.   Pulmozyme is a special medication the pharmacy has to order, so we had been waiting for it to come in.

Brian brought in the medicine home before the chaos of bedtime (which starts at 6:30pm and doesn't end until 9pm!).  He put the medicine on the counter where it stayed until around 1pm the next day when I happened to see it while cleaning up.

I started to move the box to put away when the words "KEEP REFRIGERATED" in bright red print on the box caught my attention.

I panicked.  Was the medication supposed to be refrigerated?  Should I have known this?  Was the medicine cold when we got it and I had not realized?  Most importantly, was the medicine ruined??

I made a quick call to the pharmacist, who, frankly, didn't know what would happen if we left it out.  She offered to call the pharmaceutical company to find out but in passing said, "I know it's a very expensive medicine so if it's ruined, we'll probably have to work with the insurance company about what to do next."

The thought of re-buying the medicine had not occurred to me...or even to look at how much Pulmozyme originally cost.  I was shocked to find this medication is not just expensive, it's insane!!  Turns out that the original (before insurance) price is $1248.00 for a month's supply!!

Holy macrol!  My heart started beating fast.  If the medicine was ruined, I had no idea how we could have forked over that much money to re-buy it.

Thankfully, the pharmacist called me back shortly afterwards to let me know the medicine was ok for 24 hours as long as temperatures didn't reach over 83 degrees, which was great news! 

(I remember thinking when Bennett was born, Cystic Fibrosis is going to be an expensive disease.  But I can't even hardly fathom how that child is breathing in and out a $1200+ medication twice daily.)

It serves as a reminder to me that when we are raising money for a cure, we are also raising money for such life-saving but expensive medications.  I am so thankful for Pulmozyme.  And I'm equally thankful that I found that medication only 5 hours before it would have been unknowingly ruined!!


  1. Hahaha. I remember when Madeline started it at 3 months. We went to pick it up at the pharmacy and the lady said "man, this is expensive stuff." I figured it was maybe $100 or something...she then told me the cost. Hard to believe?! I have also heard that if it turns yellow it means it is no good (if you leave it out!) If you ever get TOBI...dont leave that out either. It is over 5,000 dollars! Glad you got some answers!

  2. Wow! So glad you found it in time and thankful it wasn't ruined! I remember when I started on a certain medication last year, I was so thankful for great health insurance that covered my $2500 dollar medication. It only cost me $25 bucks.

  3. Lol, you know what? When Azer first started Pulmozyme, he was about 6 months old. That first month, I didn't realize it was supposed to be refrigerated. It was almost the end of the month when I noticed the little "keep refrigerated" sticker on it. I remember the pharmacist on the phone said as long as the medicine doesn't look cloudy or foggy, that it was fine. But, wow! I freaked out about it too!


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