INDIANAPOLIS (WISH) — On Thursday, Indiana Sen. Joe Donnelly agreed to co-sponsor a federal “Right to Try” bill.
The agreement came after a meeting with Laura McLinn. McLinn’s son, Jordan, is living with Duchenne Muscular Dystrophy.
“Jordan and I will be in this fight for the long haul because every person with a terminal disease deserves the right to try medication that could save their lives,” McLinn said.
The senator’s move was a surprise. He now joins Sen. Joe Manchin (D-West Virginia) as the only two democrats in the Senate to co-sponsor the bill.
“I want to see a life saved, and I won’t stop. This is so important not just for Jordan but for so many people,” McLinn explained.
The bill would allow terminally ill patients to try drugs not yet approved by the FDA.
Donnelly says he was hoping the FDA would come up with its own trial system. Since that hasn’t happened, he says Congress should act.
“The drug companies can decide whether they want to participate in that or not, they’re protected in the process,” Donnelly said.
We first met the McLinns in December of 2014. Jordan was 5 years old at the time. He was in the early stages of Duchenne Muscular Dystrophy, but still fully active. He’s now 7, and his mom says things have changed.
“Jordan is declining, so even though he’s doing great, he’s happy, loves life. But the truth is, he’s 7 and that’s about the age that boys with this disease start to decline,” McLinn said.
The degenerative disease will likely make him unable to walk by the time he’s 12. Jordan and his mom successfully lobbied the Indiana legislature to unanimously pass the bill, joining 32 other states.
“To be honest it was pretty easy. I mean, we lobbied and we had a lot of fun with that at the Statehouse, because everyone supported it, there was just no opposition,” McLinn said about getting the state law passed.
But then they went to Capitol Hill. Despite meeting with House Speaker Paul Ryan and having outgoing Congressman Marlin Stutzman as the sponsor, they’ve hit opposition.
Donnelly is only one of seven congressional Democrats to sign on.
“The concern has been: Will this make it more difficult for the FDA to be in the process to find the cure?” Donnelly said.
“I’m not just fighting for Jordan, I’m fighting for everyone else that is waiting to access treatments that can prolong their lives,” McLinn said.
With Donnelly’s stamp of approval, that means six Indiana lawmakers agree: Sen. Coats and congressmen Stutzman, Messer, Rokita and Young are all co-sponsors. A spokeswoman for Congressman Andre Carson said he would review the bill.