Don and Rose Kreis

New Hampshire

My daughter Rose, at 19, is living and thriving with cystic fibrosis, or CF. CF is a life-threatening genetic illness that primarily impacts the lungs, and she usually lives through at least one extended hospitalization each year.

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.

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.

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