January 4, 2016 Print

Patients with terminal diseases and no hope of a cure through politically approved medication or treatments deserve the right to choose experimental methods. That’s the core of the argument presented in a new book by Goldwater Institute President & CEO Darcy Olsen, The Right to Try: How the Federal Government Prevents Americans From Getting the Life-Saving Treatments They Need.

“Should you need the government’s permission to save your life?” Olsen’s website introduction to the book asks. “Every day thousands of Americans die from fatal diseases for which lifesaving treatments exist but are ruled by the FDA as too ‘dangerous’ for distribution. But how does that standard apply to someone in the terminal stages of cancer or Lou Gehrig’s disease?”

The Food and Drug Administration (FDA) sometimes allows terminal patients to navigate through a bureaucratic “compassionate use” process that may give them access to a select few promising experimental drugs, but that amounts to too little, too late, Olsen argues. Dying patients need direct control over the risks they are willing to take in their battles over life and death.

The Right to Try is filled with stories of heroism and heartbreak—of courageous Americans who beat illnesses no one thought could be defeated and patients who were denied life-saving treatments by the government ostensibly for their own protection,” the website explains. “Olsen goes inside the bureaucracy that is stopping millions from accessing lifesaving treatments and describes the ongoing national campaign to change these laws state-by-state. This powerful and informative book is clarion call for reform that definitively answers the question: When your mortality hangs in the balance, should you have the right to try to save your life?”

The Right to Try has received glowing reviews from Booklist, Kirkus, the Wall Street Journal, and much more, including praise from renowned political analyst George F. Will.

“Bureaucratic inefficiency and obduracy are always infuriating,” Will wrote. “When the Food and Drug Administration is involved, they can be lethal. Using true stories, some heroic and others heartbreaking, Darcy Olsen, one of America’s foremost policy intellectuals, demonstrates the urgency of establishing the ‘right to try.’”

The Goldwater Institute has played a foundational role in passing Right to Try legislation across the country, and has documented case after case in which terminal patients have been saved by experimental drugs, as well as those who died while bureaucratic red tape denied them access to medicine that could have saved them. The Right to Try brings the subject to even greater and more widespread national attention.