Corey Polen was a healthy 40-year-old man enjoying his life with his wife and three children. In October of 2015 that all changed when he started feeling spurts of weakness, not thinking too much about it until it began to progress rapidly with no answers. In March 2017 he was officially diagnosed with the progressive terminal neurological disease Amyotrophic Lateral Sclerosis (ALS), better known as Lou Gehrig’s disease.
“ALS has had little to no medical advancement since Lou Gehrig announced having it in 1939,” states Polen on his GoFundMe account. “A couple medications that on average extend your life 3 months. I wouldn’t even call that a treatment. People like me have no option and often think of the torture we inflict on our loved ones; either by seeing us suffer, or being caught off-guard by a suicide.”
Polen is one of the 6,000 people diagnosed with ALS throughout the country each year with no medical treatment options. He is among a group of people who are told by doctors that they have no chance and no options. Polen, however, doesn’t believe that should be the case and has become an advocate for the “Right to Try” for ALS and other terminally ill patients. His work, specifically through his GoFundMe account’s message and Twitter, has gained momentum with followers and donors.
“This year #FDA will receive 250 IND applications for novel cell and gene therapies; about 100 will be for gene therapies,” tweeted Scott Gottlieb, Food and Drug Administration (FDA) commissioner. “By 2021 we expect the annual total to reach 1,000. These fields are exploding; and hold tremendous promise for advancing public health.”
Polen was quick to reply with a message of his own, tweeting, “Wouldn’t it be great if some of them in Phase III trials allowed #RightToTry for #ALS patients? Especially if they were at the signing of the bill. @BrainstormCell #nurown”
While President Donald Trump pushed through a Right to Try bill last May, there has been little to zero positive movement since as thousands of patients around the country and world await the slightest glimmer of hope for a cure to their diseases. Although the law allows companies to provide unapproved drugs to terminally ill patients, it doesn’t require them to do so.
Polen, like many other ALS patients are left waiting for answers without the ability to even try and find a possible solution.
“The @US_FDA closed comments on the #ALS Guidance draft document a year ago,” tweeted Polen. “Still no ‘official’ Guidance document @FDACommissioner. When will terminal #ALS patients be a priority? # of US died waiting ~7,500 @SenWhitehouse @SenTomCotton @lisamurkowski”
As Polen continues to fight for himself and others around the world, he is actively asking for help spreading his message. “So please, email your representative,” wrote Polen. “Tweet at them (feel free to tag me @coreypolen). Do what you can to help bring some Dignity to those with terminal illnesses. Give us the freedom to make the ultimate choice.”
You can follow Corey Polen’s story at gofundme.com/standforcorey.
