Polycsytic kidney disease causes cysts to grow, continually, throughout my kidneys. It will eventually clog them, and they’ll stop working. PKD affects 600,000 Americans and costs taxpayers more than $2 billion per year. It also occupies an estimated 5,000 spaces on the kidney transplant waiting list. In late August, the U.S. Food and Drug Administration announced that it would not approve tolvaptan—the only PKD treatment that has been shown to work.
The decision deeply upset many Americans with PKD. But another, very small group of people—those who sought to prevent tolvaptan’s approval—must have felt some kind of satisfaction. . . .
Denigrations of “Big Pharma” are now commonplace. Some panelists clearly saw themselves as the only honest brokers standing between an allegedly rapacious drug company and the suckers—PKD patients like me. Perhaps I would see things that way, too, if I were not counting on one particular drug company to extend the lives of my loved ones, my many friends in the PKD community, and myself.
I’m pro-choice on this sort of thing. The FDA, not so much. Maybe we need to revisit Eugene Volokh’s right of medical self-defense.