April 21, 2021 Blogs

This isn’t a game.

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 19, is living and thriving with cystic fibrosis, or CF. Rose is a scholar who is attending Bowdoin College in Maine. She’s an expert dressage rider who hopes to compete in the Olympics some day. And, because she has CF, a life-threatening genetic illness that primarily impacts the lungs, 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 in the fall of 2019. Trikafta carries a price tag of over $300,000 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. They’ll say it’s because they had to pay for innovation. But the truth is, it’s taxpayers, patients, and loved ones who have underwritten these discoveries.

Drug companies have not historically been interested in investing in a treatments for CF — a condition that only impacts a small portion of the population. So, the cystic fibrosis community stepped up to the plate. We (and those who came before us) raised awareness about our rare disease, held fundraisers, and made personal donations in hopes of curing it one day. 

Then we gave that money to Vertex to develop Trikafta and other modulators. Taxpayers kicked in, too.

Vertex turned around and charged nearly $300,000 a year for the drug we helped to fund. It’s infuriating and it’s wrong.

So when it comes time for a treatment to help Rose, I know the game Big Pharma will play. It will take funding from patients, loved ones, and taxpayers and go on to produce a drug that is out of reach for many of the patients. All under the guise of needing a return on investment on its research and development. 

Vertex could absolutely reduce the price of Trikafta without harming innovation. But it won’t because it is raking in outrageous profits that have fueled some of the highest salary packages in health care.

Unlike Monopoly, 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 19 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? And when a new drug comes to market, will she be able to even consider taking it? No one cares more about innovation than us — but these drugs are worthless if Rose can’t afford them. 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.

— Don Kreis, CF dad, New Hampshire


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