When Jordan McLinn was three years old, he was diagnosed with a fatal form of muscular dystrophy called Duchenne. His family left the children’s hospital in their hometown of Indianapolis with no options, but then they heard about a new experimental drug that could help Jordan. Unfortunately, Jordan didn’t qualify for the clinical trial that would allow him to use the drug, and his family was left searching for hope.
On Thursday in Washington, D.C., a special event will celebrate the enactment of a law that gives hope to patients like Jordan. That law is Right to Try, a policy designed by the Goldwater Institute that allows those suffering from terminal illnesses to gain access to medication still being tested in clinical trials, while offering protection to doctors and pharmaceutical companies who come to patients’ aid.
“Patients want to access drugs that are FDA-approved,” Laura explained. “If not, they want to access drugs through a clinical trial. If not, they still want to know that there may be some pathway available to them to be able to access the treatments. That’s what Right to Try does. It gives that extra layer of hope.”
At the time of Jordan’s diagnosis, Right to Try was an idea being considered in states across the country. In Indiana, young Jordan and his mom became some of the strongest advocates for the policy. They testified before the state legislature, spoke to the media, and met with their governor, Mike Pence, who also became a champion for the law. With the McLinns’ help, Right to Try became law in Indiana, was ultimately enacted in 41 states, and in May 2018 was signed into federal law by President Donald Trump. Last month, the Goldwater Institute honored Jordan and Laura for their efforts with the Institute’s first-ever Freedom Award.
Ultimately, Jordan was able to participate in a clinical trial, and six years later, he’s doing great and isn’t showing any signs of decline. He and his family are grateful for every day. Learn more about his story in this video.
For more information about Right to Try, visit RightToTry.org.
If you’re in the Washington, D.C., area on Thursday, November 29, and would like to attend the Right to Try celebration, click here for tickets.