The Right to Try: Inside the Fight to Give Dying Americans Access to Experimental Treatments That the Government Denies

"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?"--Provided by publisher. "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?"-- Provided by publisher 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. Introduction: Meet Lazarus : the first man in medical history to survive Lou Gehrig's Disease Sophie's choice : how the FDA let a mother save one son... and left her other son to die Five thousand miles for a cure : how one American family moved overseas to save their dying son Making medical miracles : the cutting-edge cancer killers you can't get yet What Steve Jobs saw : how the FDA stops American doctors from using a proven cancer treatment Inside man : how one biotech CEO came to champion Right to Try We are the 99 percent : how Right to Try has taken America by storm Compassionate use : the mythical unicorn Would you use a fifteen-year-old cell phone? : how to get American medicine back on top If you have the right to die, you should have the right to try Where do I start? : a step-by-step guide to seeking an investigational treatment Afterword : Everyone deserves the right to try : an update on Jean McNary, Ted Harada, and Diego Morris.