An updated cost of Rare Disease ( you better sit down)

If you’d like a little shock with your coffee today, here’s the statement from Corrigan’s 3.5 day stay in December. 

THIS is the cost of rare disease. THIS is what a bag and a half (but probably charged for two) of Ammonul costs. And thankfully he was not put on a helicopter and transferred out, can’t even imagine what THAT costs these days. 


Did you gasp? I actually cursed. Loudly. 

Compare the pharmacy bill to the pharmacy bills in 2013 (identified with red-outlined arrows) 


I added a square (bottom right) in a post years ago to highlight the cost (then!) of rare disease compared to “regular” medical treatments. 

My oldest (Connor) does not have any disease or disorder, but at the start of his junior year developed difficulty breathing. Shockingly, he had an orange-sized mass in a lower lobe of his lung. 

He spent 3 or 4 days in our local hospital before being transferred to Johns Hopkins for another EIGHT days. His Hopkins bill, as you can see, was  around $17,500. 

Compare that to the three hospitalizations for Corrigan, who lives with Citrullinemia, and you can see his pharmacy bill alone was twice the amount of Connor’s entire eight day stay. 

Think about that. It blew my mind three years ago and then yesterday I opened the mail.

Look at that again….


What was once 39k is now HALF OF A MILLION DOLLARS. 

How is that acceptable? Here, take a look at a list price I found, effective January 1, 2017 

See that? Between $634.00-$922.00 an ml

A milliliter 

That means that the drug that rescues my baby from a hyperammonemic crisis costs between $3k and $4.5k a TEASPOON. 

About 30k an HOUR to help him. 

My God 

That bag you see hanging…a Quarter Million Dollars. 


I’m gobsmacked. 

2 thoughts on “An updated cost of Rare Disease ( you better sit down)

  1. Woah. How is that even possible??? In Canada (Montreal) it costs about $15000 per vial of 50 mL (at least according to the pharmacy at our hospital… we don’t get billed). That is INSANE.

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