Matt is a U.S. Navy veteran, husband, father to two. His life as a naval aviator and active father was changed forever when he was diagnosed with ALS at 30 years old. With no cure, ALS is a certain death sentence and Matt is acutely aware of the time he does not have. While there […]
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Originally written by Mary Lou Lang-Byrd for freebeacon.com The Republican Party platform committee adopted language on Monday supporting terminally ill patients’ access to drugs that have not been fully approved by the Food and Drug Administration. “We commend those states that have passed Right to Try legislation, allowing terminally ill patients the right to try […]
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Downloadable PDF To watch the full hearing on Connecting Patients to New and Potential Life Saving Treatments click here via C-SPAN YOU ARE DYING AND HAVE NO HOPE. Your disease is 100 percent fatal. It’s only a short time before it kills you. There are no treatments that have been approved by the federal Food and Drug […]
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Written by Darcy Olsen for Time Imagine the joy of watching your dying son experience a miraculous recovery from an incurable disease thanks to an experimental medicine. Then imagine the horror of watching your other son slowly die from the same disease—because the federal government prevented him from receiving the same life-saving treatment that saved […]
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Like most moms, Laura McLinn had a vision of her son’s future. Jordan is 5 years old and dreams of becoming a firefighter. “I just said, ‘Hey I’m going to make him a resume. I’m going to get him a job,’” McLinn said. Laura sent his resume to local fire departments and posted it to […]
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Originally published in the Wall Street Journal by Editorial Staff It should not go unnoticed that last week the Food and Drug Administration announced it would “simplify and accelerate” the application process for “unapproved investigational drugs” that have passed Phase I safety trials. We are back on the most contentious ground of FDA drug approval, […]
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Originally published in USA Today A person with a terminal illness may hear of a drug that could be promising only to hear it has not yet received government approval for use. Unless that person can find his or her way into a clinical trial for that compound, he or she will most likely not […]
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LYONS, Colo. — Since May, a string of states have passed laws that give critically ill patients the right to try medications that have not been approved by the Food and Drug Administration. Deemed “Right to Try” laws, they have passed quickly and often unanimously in Colorado, Michigan, Missouri, Louisiana and Arizona, bringing hope to […]
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Originally in US News Christine McSherry’s son Jett is a typical college freshman trying to push for as much independence as he can. But Duchenne muscular dystrophy, a disease that tears away muscles, has taken his ability to walk. He relies daily on aides to help him with homework, eating and carrying classroom materials. “He […]
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On Election Day, Arizona voters approved a referendum that allows terminally ill patients to receive treatment with drugs and devices that haven’t been approved by the Food and Drug Administration. Arizona became the fifth state to approve a so-called right-to-try law this year. Supporters say the laws give patients faster access to experimental, potentially life-saving […]
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