Indianapolis boy front and center as Congress passes ‘right to try,’ sending bill to President Trump

WASHINGTON – Indianapolis 9-year-old Jordan McLinn was watching from the gallery of the U.S. House Tuesday, as lawmakers passed a measure known as “right to try,”  sending the bill to President Donald Trump for his signature.

McLinn, who met with Vice President Mike Pence and Sen. Joe Donnelly (D-Ind.) ahead of the vote, has a deadly form of muscular dystrophy and alongside his mom Laura have been tireless advocates for “right to try” laws nationwide.

“He gets it,” Laura McLinn said. “He knows.”

The bill, which bears Jordan’s name, will increase access to experimental treatments not yet approved by the Food and Drug Administration.

Three years ago, Jordan was alongside then Gov. Mike Pence who signed Indiana’s “right to try” into law.

“I’m signing this today with a prayer that ‘right to try’ in Indiana will be a pathway toward healing,” Pence said in March 2015.

President Trump voiced public support for the measure in the State of the Union speech. And in a statement Monday, the Office of Management and Budget said the administration supports the current bill “which will increase access to unapproved, investigational treatments for patients with terminal illnesses.”

Critics have argued the bill offers little but false hope for patients and their families and weakens FDA oversight.

But lawmakers on a bipartisan front are backing the measure. Donnelly and Sen. Ron Johnson (R-Wis.) helped push the legislation through the U.S. Senate.

“It looks like we’re going to get this done today,” Donnelly said. “And the biggest part of this whole thing is it’s going to help people who are in life-threatening conditions.”

Jordan has been accepted into a clinical trial, receiving weekly infusions in Chicago. Still the Central Indiana family won’t stop fighting for the future and granting access to potentially life-saving drugs.

“The journey has become so much bigger for us,” McLinn said. “And I’m just so proud of my son. He’s nine-years-old. He’s going to have a law named after him, and it’s just not any law. It’s a law that helps lots of people and something he can be really proud of.”