A brother and sister from Colorado penned a guest commentary in the Denver Post this week, asking Colorado Senators Michael Bennet and Cory Gardner to fight for the Right to Try Act during the lame duck session of Congress.
Ellie and Aiden Cimbura live in Highlands Ranch with their mother, a school teacher, and father, who twenty months ago was diagnosed with Lou Gehrig’s Disease, or ALS. Their father’s disease has progressed to the point where he can no longer perform basic tasks such as brushing his teeth, or breathing or talking without the help of a machine.
But before the ALS became this debilitating, Mr. Cimbura was one of 48 patients selected for a drug trial that resulted in “immediate improvement that lasted for months.” Unfortunately, after the trial ended, he was not allowed to have any additional doses of the drug, as the manufacturer is tied up its next phase of the FDA approval process for a product that is approved and widely available in Israel.
A different ALS drug, Radicut, has been approved for use in Japan for two years, and now is being administered in South Korea. The U.S. FDA will not rule on it until June 2017.
In the name of compassion, assisted suicide advocates in Colorado pushed a ballot measure this year that would give terminally ill patients access to a prescription that would end their lives. How about allowing terminally ill people the option to try drugs that have not made it through the FDA leviathan?
It is unconscionable that it requires many drug manufacturers $1 billion and more than ten years to navigate the FDA approval process, and it is even worse to hold terminally ill patients, desperate for an option, hostage to this process. Working with their doctors, those vulnerable Americans should have this right.
The Trickett Wendler Right to Try Act (Senate Bill 2912), would give terminally ill patients access to medication that has passed Phase I FDA trials. Phase I demonstrates, among other things, that the drugs are at least safe to use. Mr. Cimbura deserves this shot. So does his family, and so do thousands of other terminally ill people in our country.
Cory Gardner can be reached here. Michael Bennet can be reached here.
