WASHINGTON — For Frank Mongiello, Jan. 30, 2018 was a day of hope. After dedicating the last few years of his life to the “right-to-try” movement, an effort to get dying patients access to experimental treatments, Mongiello heard President Trump use his first-ever State of the Union address to urge Congress to pass a federal law on the issue.
Just one year later, the law is in place. But Frank, who suffers from ALS — and for whom the national law is even named — still hasn’t gotten access to treatment.
“We had a lot of hope that if the right to try was passed it would give an incentive for the drug companies to make available the drugs. But now it doesn’t seem as though the drug companies are giving away their drugs either,” Marilyn Mongiello, Frank’s wife, told STAT. She speaks for him in interviews because he is only able to communicate via technology that turns his eye movements into text. In a brief email exchange, Frank confirmed to STAT that he has not found treatment but that he remains optimistic, despite his worsening condition.
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Don’t play God. God has given us these brilliant minds to fight a horrific disease such as als. Make the treatments available to all. It could happen to you or your loved one. If you think your job is arduous just think if you were the one with als. Can’t move a muscle, can’t eat, can’t talk, can’t breathe without the assistance of a machine. So who will be the hero here to step up to the plate and help all those afflicted by als? My hero is my son. Just try living in his contracted feet for a moment. Yet he goes on looking for the cure. We need him! Please help! Please help the als community. We need a cure now! Frankie’s mom, Carol.