The Right to Try: How the Federal Government Prevents Americans from Getting the Lifesaving Treatments They Need - Hardcover

Olsen, Darcy

Hardcover

ISBN 10: 006240752X ISBN 13: 9780062407528

Publisher: Harper, 2015

Synopsis

The inspiring state-by-state campaign to allow sick Americans access to experimental treatments currently blocked by the government, chronicled by the woman leading the charge.

Should you need the government’s permission to try to save your own life? Today, the FDA regulates medications available to Americans. But it takes an average of ten years to bring a new drug to market. Every day thousands of Americans die unnecessarily from fatal diseases for which lifesaving treatments that now exist or are being developed are ruled too “dangerous” for commercial distribution. But how does that FDA standard apply to someone in the terminal stages of cancer or ALS?

Right to Try is filled with stories of heroism and heartbreak—of courageous Americans who beat illnesses no one thought could be defeated; parents who won the fight to get their children access to cutting-edge cures; patients who were denied life-saving treatments by the government ostensibly for their own protection; and incredible doctors and researchers pioneering revolutionary cures. Drawing on her experience fighting for patients, Darcy Olsen goes inside the federal bureaucracy that is stopping millions from accessing these lifesaving treatments, lays out the case for expanding access to experimental medicines, and describes the ongoing national campaign to change these laws state-by-state.

Cogent and persuasive, this powerful and informative book is clarion call for reform that definitively answers the question: When your mortality hangs in the balance, shouldn’t you have the right to try to save your own life?

About this title

From the Back Cover:

Why should you need the government’s permission to save your own life?

Jenn McNary’s two sons, Max and Austin, were diagnosed with Duchenne muscular dystrophy—a fatal disorder that leads to muscle degeneration and eventually death. In a cruel and unnecessary twist, Max received access to a clinical trial; Austin didn’t. As a result, Max was able to get out of his wheelchair and play on his school soccer team while Austin continued to deteriorate until he could not even feed himself.

The FDA takes as long as fifteen years to approve a new drug, demanding near-absolute proof of effectiveness before allowing commercial distribution. But this ignores the urgent plight of millions of terminally ill Americans who have run out of approved options—and are running out of time. These patients are not looking for a 100 percent guarantee that a treatment will work for them. They are looking for a fighting chance.

Why can’t they have that chance? Why don’t they have the right to try . . . the right to save their own lives?

Author and activist Darcy Olsen, president of the Goldwater Institute, tells the remarkable story behind the Right to Try movement, the national campaign to give dying Americans access to cutting-edge treatments that are under study but still years away from receiving the FDA’s green light. The men, women, and children featured in these pages are our own family members, friends, and neighbors. Their heartbreaking, triumphant, and inspirational stories prove the necessity for Right to Try laws. Because everyone deserves the Right to Try.

About the Author:

Darcy Olsen is the founder of Generation Justice, which champions constitutional protections for infants and children in foster care. She is also the former president and CEO of the Goldwater Institute, a national policy and litigation organization that has changed more than two hundred laws nationwide over the last several years. The group is leading the national campaign to pass Right to Try laws.

About this edition

• Publisher: Harper
• Publication date: 2015
• ISBN 10: 006240752X
• ISBN 13: 9780062407528
• Binding: Hardcover
• Edition number: 1
• Number of pages: 320