INDIANAPOLIS--(BUSINESS WIRE)--Jordan McLinn will turn six tomorrow and his mom has one birthday wish: to watch him grow up to be the firefighter he dreams of being. Jordan has a deadly form of muscular dystrophy called Duchenne, which will leave him wheelchair-bound within a few years and shortens his life expectancy to just 20 years old.
Laura McLinn’s petition on Change.org, officially launched today, asks Americans to join her in urging the Food & Drug Administration to work with states that pass “Right To Try” laws so Jordan and other terminally ill Americans suffering from MD, ALS, cancer and more, can have access to potentially life-saving investigational treatments before it’s too late.
“Jordan wants to grow up to be a firefighter, because he likes rescuing people. But first we have to rescue him,” said Laura McLinn, Jordan’s mother. “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.”
Right To Try laws have been enacted in Indiana and 16 other states within the past year. Right To Try allows people with terminal illnesses to try medications and treatments that are being safely used in clinical trials, but are not yet on pharmacy shelves. Right To Try laws bring hope to patients by letting them try medicines when they cannot enroll in a clinical trial or don’t have time to wait for the FDA to finish its decade-long approval process. There is a drug that is going through clinical trials now that could help slow the progression of Duchenne in patients like Jordan, but the McLinns do not have access to it.
“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,” said Darcy Olsen, the president and CEO of the Goldwater Institute, the organization that is leading the national Right To Try effort.
“With already more than 35,000 signers and 4,100 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,” said Kelly Sawyers, a senior campaigner at Change.org, the world’s largest petition platform that empowers anyone, anywhere, to start, sign and share petitions on issues that matter to them. Eighty-five million people in 196 countries have used Change.org.
“Time is not on Jordan’s side,” said Laura McLinn. “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.”
Right To Try is already law in Arizona, Arkansas, Colorado, Indiana, Louisiana, Michigan, Minnesota, Mississippi, Missouri, Montana, North Dakota, Oklahoma, South Dakota, Tennessee, Utah, Virginia and Wyoming. The law has been introduced in 20 additional states this year.
Right To Try is limited to patients with a terminal disease who have exhausted all conventional treatment options and cannot enroll in a clinical trial. All medications available under the law must have successfully completed the FDA’s safety testing requirement and be part of the FDA’s on-going approval process.
Laura McLinn’s petition coincides with the launch of RightToTry.org, a website that tracks the progress of the national Right To Try effort and give patients and others information about how to use the law. You can also follow the Right To Try movement on Facebook.
About the Goldwater Institute
The Goldwater Institute drives results by working daily in courts, legislatures and communities to defend and strengthen the freedom guaranteed to all Americans in the constitutions of the United States and all 50 states. With the blessing of its namesake, the Goldwater Institute opened in 1988. Its early years focused on defending liberty in Barry Goldwater’s home state of Arizona. Today, the Goldwater Institute is a national leader for constitutionally limited government respected by the left and right for its adherence to principle and real world impact. No less a liberal icon than the New York Times calls the Goldwater Institute a "watchdog for conservative ideals" that plays an "outsize role" in American political life.