June 12, 2020 Blogs

These drugs could save her life.

by DON KREIS, CF Dad, New Hampshire

If you own Boardwalk and Park Place, you rule the world.

That’s one of the many lessons I’ve learned from my daughter Rose – who, at 18, is living and thriving with cystic fibrosis. Rose is a scholar who is off to Bowdoin College in Maine this fall. She’s an expert dressage rider who hopes to compete in the Olympics some day. And, because she has CF, she usually lives through at least one extended hospitalization each year.

When Rose is in the hospital, I like to show up with my Monopoly set. The game is fun but it takes forever, which makes it perfect for inpatient interludes. It’s all about money, which makes it perfect for my wheeler-dealer daughter.

Once upon a time, I could beat Rose at Monopoly. Now she’s on a winning streak, and I’ve figured out it’s because she always manages to grab Boardwalk and Park Place, the two most expensive properties on the board.

Right now, the cystic fibrosis equivalent of owning Boardwalk and Park Place is Trikafta, the miracle CF drug from Vertex Pharmaceuticals that was approved by the FDA last fall. Trikafta carries a price tag of $312,000 a year per patient.

Trikafta is part of a suite of “modulator” drugs, all from Vertex, that produce dramatic improvements in lung function for 90 percent of CF patients. But here’s the thing: Rose isn’t one of them. CF is a genetic disease, but Rose’s CF mutations are rare ones. Her medical breakthrough is still ahead of us.

Why, then, is my family so concerned about the price of Trikafta? Because we know that when Rose’s miracle comes, the drug company that holds the monopoly on that breakthrough will charge a similarly lavish sum. What would stop them?

Last year, the more routine set of drugs Rose currently takes to treat her CF costs upwards of $160,000. Fortunately, my employer has a good health insurance plan, so our family paid very little of that out-of-pocket.

We could, therefore, just let other people worry about the soaring cost of cystic fibrosis drugs.  

That would be something like shrugging indifferently when Rose nabs Boardwalk and Park Place, builds houses on them, adds hotels, smiles at her dad, and waits for me to land on one of the properties. 

But this isn’t a board game. Vertex has a real-life monopoly on expensive CF drugs, and the next iteration could keep my daughter out of the hospital so she can continue her studies and pursue her dressage dreams. These drugs could save her life. Rose is 18 now. When she no longer has dad’s insurance plan, in the not so distant future, will she be able to weather hundreds of thousands of dollars in medication costs? We must do more as a society to make sure that my daughter and others like her can always afford the prescription drugs they need.


Patients For Affordable Drugs is the only independent national patient organization focused exclusively on achieving policy changes to lower the price of prescription drugs.