INDIANAPOLIS (March 4, 2015) – From the instant Jordan McLinn walked into the Statehouse committee room Wednesday, the 5-year-old made it his own. Dressed in firefighting gear from head-to-toe, McLinn is a young honorary firefighter by trade. But the real fight is for his life.
“For the first time in history of muscular dystrophy, there are actually drugs coming up through the pipeline,” Laura McLinn said, Jordan’s mom. “Muscular dystrophy is 100% fatal. The one Jordan has is the worst one.”
Jordan has Duchenne muscular dystrophy.
The McLinn family’s hope rests in experimental drugs and the “right to try” movement.
The bill before Indiana lawmakers would allow terminally-ill Hoosiers access to experimental drugs that haven’t been fully approved by the FDA, drugs that have passed a first-phase safety test, but could be years from reaching full approval.
That approval process can take up to 15 years and cost nearly $1 billion.
In 2014, five states passed “right to try” legislation, and 31 other states have introduced bills, according to the National Conference of State Legislatures.
Kent Morgan, representing the Disabled American Veterans, told lawmakers before the Senate Health and Provider Services committee making Indiana a “right to try” state would help dying veterans.
He also testified for Jordan, a friendship that has quickly formed, symbolizing this battle doesn’t discriminate with age.
“I felt bonded to him,” Morgan said. “He’s a survivor. We’re like bookends on the age span.”
Senate committee members didn’t vote on the measure Wednesday, postponing one until next week. Several lawmakers had concern over how the drugs would be monitored.
The bill already unanimously passed the House.
As Jordan McLinn played with the microphones before him, his mom asked a simple question.
“Do you want to say something?” she said.
Without prompt, the 5-year-old delivered three simple words.
“Please say yes,” he said.
Jordan’s mom smiled.
“Well we kind of talked before about what can you say to these people,” Laura told reporters after. “But I told him before we came, I said I don’t care what you say. Just say something from your heart.”