Senate lawmakers say they want to more time to work on a bill allowing terminally ill patients to try experimental drugs before sending the measure to the floor.
The bill would help 5-year-old Jordan McLinn, who suffers from Duchenne Muscular Dystrophy. Those afflicted with the fatal disease typically only live to about age 20.
But Jordan’s mother, Laura McLinn, told a Senate panel that help could be on the way. As Jordan sat in her lap, she told lawmakers about a new drug being developed to change Jordan’s type of Muscular Dystrophy into a milder version.
“This is not a cure but to us, it’s pretty close, she says. "This is a drug that could add many, many years to my son’s life.”
Proposed legislation referred to as “Right to Try,” would give terminally ill patients like Jordan access to drugs that have passed through the first of three phases in the FDA’s approval process.
The Senate committee held off voting on the bill in order to work out some issues with it. Those include ensuring all medical professionals, and not just doctors, are immune from liability under Right to Try.
Before he left, Jordan had his own message for lawmakers.
“Please say yes,” he told them.
