Jordan McLinn is turning 6 years old and his mom has a single birthday wish: the possibility of watching him grow up and have the opportunity of becoming the firefighter that he dreams of becoming. Jordan suffers from a deadly type of muscular dystrophy, Duchenne, which will begin to immobilize him within a few years and dramatically shorten his life expectancy to no more than 20 years old.
Laura McLinn’s petition on Change.org invites Americans to join her in the cause of urging the United States Food and Drug Administration to work with states that pass “Right To Try” laws in order for Jordan and other sick Americans suffering from terminal diseases such as muscular dystrophy, amyotrophic lateral sclerosis, cancer and others can have access to potentially investigational treatments that can save lives before it is too late.
“Jordan wants to grow up to be a firefighter because he likes rescuing people. But first we have to rescue him. Jordan has a chance if we can get him the special treatment he needs but we do not have time to wait. We need the FDA to support the Right To Try,” stated Laura McLinn Jordan’s mother.
The Right To Try laws were enacted in Indiana and in 16 more states over the last year. Right To Try gives people suffering with terminal illnesses the possibility of accessing treatments and medications that have been safely tested in clinical trials but remain off the pharmacy shelves because they are not approved or commercialized yet. Right To Try laws represent a window of opportunity that brings hope to patients since they make experimental medicines available when they are not able to enroll in a clinical trial or do not have the time to wait for an FDA approval since these processes take too long sometimes. There is currently a drug in clinical trials that might be helpful to slow the progression of Duchenne in those like Jordan; however, the McLinns do not have access to the drug.
“Seventeen states have adopted Right To Try laws in rapid succession with overwhelming bipartisan support. The FDA is watching this groundswell of support for giving terminal patients the right to try promising investigational medications and doing nothing,” stated Darcy Olsen who is the CEO and president of the Goldwater Institute.
Kelly Sawyers, senior campaigner at Change.org, said: “With already more than 35000 signers and 4100 supportive comments on Laura’s Change.org petition it’s clear that her call to action to the FDA is resonating with people across the country. Laura’s petition is the latest of a number of petitions launched on Change.org by terminally ill patients and their loved ones who are seeking access to potentially life-saving drugs.”
“Time is not on Jordan’s side. Without access to the drug sooner rather than later it’s not going to help Jordan. That’s why Right To Try is so important to us,” concluded Laura McLinn.