By Christian Sullivan
INDIANAPOLIS – Jordan McLinn is an eight-year-old boy with a disease with no known cure.
Laura McLinn and son Jordan speak at press conference regarding the “right to try act” that has just passed through the U.S. Senate. Jordan was born with Duchenne muscular dystrophy. Photo by Christian Sullivan, TheStatehouseFile.com
His condition, Duchenne muscular dystrophy, is caused by a genetic mutation that prevents the body form producing a protein that the muscles need to work properly called dystrophin. Without the protein, the muscles become damaged and weak. The disease hinders the ability to walk and breath, and eventually becomes fatal.
“When we first started lobbying for the right to try in Indiana, Jordan did not qualify for clinical trials,” Laura McLinn, Jordan’s mom, said. “There was this drug that existed, kind of just dangling in front of our eyes, and my son did not qualify for a clinical trial.”
The McLinn family helped get the “Right to Try” legislation unanimously passed in Indiana in 2015. Now they are working with U.S. Sen. Joe Donnelly to get similar legislation, which allows families to exhaust all treatment options for a terminally ill family member, passed nationally.
Donnelly’s “Right to Try Act” gives families in every state who do not qualify for clinical trial, the ability to try drugs that have not been approved, but have passed the first stage of the Food and Drug Administration testing.
Donnelly was introduced to the family in early 2016 and has since met with them several times to work on the federal legislation.
The bill has already made it through the Senate, and Donnelly is certain it will pass through the House when lawmakers return in September.
U.S. Sen. Joe Donnelly addresses the media regarding his “right to try act.” This act passed through the U.S. Senate unanimously. Photo by Christian Sullivan, TheStatehouseFile.com
“We went from less than 50 to, about a week ago, having this pass 100 to nothing in the United States Senate,” said Donnelly, “All we have to do is have it pass through the House, which will believe it will do.”
Jordan travels to Chicago every week to take part in a clinical trial to receive his treatments.
He just finished his 23rd week of his clinical trial. Donnelly said he hopes this act will open up other roads of opportunities for Jordan and others who are terminally ill.
“Jordan is our teammate here in Indiana,” Donnelly said. “I could not live with the thought of not getting this done.”
Christian Sullivan is a reporter for TheStatehouseFile.com, a news website powered by Franklin College journalism students.