The Right to Try - Olsen, Darcy
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Why should you need the government's permission to save your own life? Jenn McNary's sons, Max and Austin, were diagnosed with Duchenne muscular dystrophy?a fatal disorder that leads to muscle degeneration and eventually death. 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.…mehr

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Produktbeschreibung
Why should you need the government's permission to save your own life? Jenn McNary's sons, Max and Austin, were diagnosed with Duchenne muscular dystrophy?a fatal disorder that leads to muscle degeneration and eventually death. 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. Author and activist Darcy Olsen, former 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. Through their efforts, the number of states with Right to Try laws is now thirty-three and counting. 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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Autorenporträt
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.