"The Right To Try"
Organized by: Silvia Donahue
ALS is probably the worst diagnosis you can receive. It spreads quickly systematically paralyzing parts of your body one at a time. Your brain stays intact so you are fully aware through your loss of walking, moving, talking and finally breathing. It is a living hell. The average life expectancy is 2-5 years. There are no cures and no drugs. You are told to go home and die. There are a few drugs in clinical trials but the current process for drug approval is extremely costly and takes years. My husband was diagnosed with ALS this year and our only hope is obtaining access to some of these promising drugs. The FDA's policy of not granting access to these medication's is incomprehensible. A dying patient does not have the RIGHT TO TRY! Although some drugs have been shown to improve or extend the lives of many patients, the FDA's stubbornness prevent's the terminally ill from trying them. Currently there are 19 States that have passed a RIGHT TO TRY and more on the way. But the federal government is not listening to it's people. The FDA acted quickly when they were faced with the AIDS epidemic and more recently with Ebola. For these illnesses they approved treatment with untested drugs! But not for ALS. With no treatment in over 80 years, they still want more testing even in the face of 500 souls lost every month. So why are the lives of ALS patients of lesser importance. Every American should be protected and represented by our government agencies. Our goal is to push for new methods of drug approval by FDA for terminally ill patients of all diseases. They must be expected to act quickly and purposefully to help those Americans in need. A path for granting and monitoring fast approval must replace the current old process. We urgently need your help to achieve this history making change. Time is of the essence.