National Right To Try Law Passes, Bears Name Of Hoosier Boy

May 23, 2018

President Donald Trump tweeted he will sign legislation that gives patients access to medicine that isn’t on the market yet. The new Right To Try law's official name is "Trickett Wendler, Frank Mongiello, Jordan McLinn, and Matthew Bellina Right to Try Act."

Jordan McLinn has Duchenne muscular dystrophy, a disease with no cure.  The 8-year-old Hoosier became the poster child for Indiana's law, passed in 2015

Indiana is one of 37 states with Right To Try laws. Pending President Donald Trump's signature, terminally ill patients nationally will have access to drugs that went through some trials but did not receive final FDA approval.

Laura McLinn, Jordan's mother, says Jordan is lucky. He is part of a trial in Chicago, and she points to a recent field day as an example.

"He ran around and participated in the relays and there are some kids that are 9, like him, with Duchenne muscular dystrophy and are already in a wheelchair," McLinn says.

U.S. Sen. Joe Donnelly (D-Ind.) co-authored the law that made it through Congress with bipartisan support, including U.S. Sen. Todd Young (R-Ind.).

The bill passed the U.S. Senate in August 2017, and the U.S. House on Tuesday by a vote of 250-169, with unanimous Republican support. 

McLinn testifed before Congress in 2016. She says the experience was rewarding.

"Getting this passed and Jordan being the face of the national movement and just getting to be there every step of the way, I mean," says McLinn.

President Trump publicly endorsed the legislation in January, during his State of the Union address.

The White House released an official statement Tuesday: "This Administration believes that treatment decisions for those facing life-threatening illnesses are best made by the patients with the support and guidance of their treating physicians."

Following the bill's passage, U.S. Rep. Jim Banks (R-Columbia City) released a statement, calling the legislation pro-life. 

"Every life is precious and every person should have the freedom to protect their own,” Banks said in a statement. “In some of the darkest of times, when no other alternatives exist, giving these patients the right to try potentially life-saving drugs is one of the most compassionate things we can do as a nation."

U.S. Rep. Luke Messer (R-Shelbyville) co-sponsored the bill in the House.   

"The House took a major step forward today to give those with terminal illnesses a chance to try potentially life-saving medicines,” Messer said in a statement. 

Patient groups including the American Cancer Society Cancer Action Network and the American Lung Association opposed the bill. They say it could do more harm than good by giving patients access to drugs that may, in the end, shorten their lives.