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.
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About the Author
Darcy Olsen is the president 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.
Table of Contents
Introduction: Meet Lazarus: The First Man in Medical History to Survive Lou Gehrig's Disease 1
Chapter 1 Sophie's Choice: How the FDA Let a Mother Save One Son … and Left Her Other Son to Die 27
Chapter 2 Five Thousand Miles for a Cure: How One American Family Moved Overseas to Save Their Dying Son 61
Chapter 3 What Steve Jobs Saw: How the FDA Stops American Doctors from Using a Proven Cancer Treatment 83
Chapter 4 Making Medical Miracles: The Cutting-Edge Cancer Killers You Can't Get Yet 99
Chapter 5 Inside Man: How One Biotech CEO Came to Champion Right to Try 121
Chapter 6 We Are the 99 Percent: How Right to Try Has Taken America by Storm 135
Chapter 7 Compassionate Use: The Mythical Unicorn 175
Chapter 8 Would You Use a Fifteen-Year-Old Cell Phone?: How to Get American Medicine Back on Top 215
Chapter 9 If You Have the Right to Die, You Should Have the Right to Try 243
Chapter 10 Where Do I Start?: A Step-by-Step Guide to Seeking an Investigational Treatment 253
Afterword: Everyone Deserves the Right to Try: An Update on Jenn McNary, Ted Harada, and Diego Morris 261