• Life with ALS
    • Uncategorized
    • Apr 08, 2015

    The “Right to Try”

When presented with life or death options, people will try just about anything. That is the basic idea behind the “Right To Try” Act, a movement that is now becoming law in states all over the country. This law gives patients with terminal diseases the option to use medication or treatments that aren’t passed by the FDA. This essentially bypasses the FDA’s trial program which can cost around $1 billion and take up to 10 years.

Advocates for the “Right to Try” argue that if we don’t give these patients the option to try experimental treatments, then we are taking away their chance of extending life span. Advocates also argue that patients should be able to do what they wish with their own bodies and lives. Furthermore, giving treatments to patients could provide a valuable research opportunity for clinics and companies.

David Huntley, a former collegiate geology professor, is a supporter of the “Right to Try” Act. Diagnosed with ALS in June of 2013, he has lost use of his arms, and has difficulty speaking due to the loss of use in his lips. Huntley and other ALS patients are frustrated with the absence of choice in determining his future. Huntley said, “It’s frustrating to deny access of a drug to a population afflicted with a rapidly progressing disease that is 100 percent fatal.”

In contrast, there are others who believe that the “Right to Try” is a step in the wrong direction. These critics argue that the experimental medication could be doing much more harm than good. These critics also worry that these laws would undermine the authority of the FDA. They also realize that the companies don’t have to supply these medications to patients. Producing, creating and manufacturing drugs and treatments is as very expensive process.  As a result, drug companies may be unlikely to provide experimental treatments to individuals with a progressive form of ALS.

The “Right to Try” Act will allow more patients and companies access to potentially lifesaving medicine and could be a giant leap forward in the ALS community. However, these new drugs could be taking away precious time from ALS patients and their families. This controversial law is in effect in a few states across the country, and is being advocated in many more.

To get more information about the “Right to Try” visit http://www.yourrighttotry.com/


About Author

Seth Christensen

Seth is an ALS patient and founder of ALS Crowd, a division of the CrowdCare Foundation. As host of the ALS Crowd Radio show, he interviews top ALS researchers and focuses his efforts on the aggregation of big data to help researchers and patients find clues that will drive to a cure.


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