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Terminally ill patients facing hurdles after ‘Right to Try’ becomes law

INDIANAPOLIS (WISH) – Late last month Governor Pence signed Indiana’s ‘Right to Try’ law.

It will allow terminally ill patients the ability to use medications not yet approved by the FDA.

But with one victory under their belt, many of those patients are running into another road block.

“The drug he needs could be between $200,000 and $400,000 a year,” said Laura McLinn, 5-year-old Jordan McLinn’s mother. “We don’t have that kind of money, obviously.”

24-Hour News 8 has been following Jordan’s story since Christmas Eve when he auditioned to be an IFD firefighter. He got the job, and then last month took his fight to the state house to lobby for the “Right to Try” bill. And late last month Governor Pence signed it.

Money wasn’t appropriated in the law.

The author, Rep. Wes Culver said their goal was to shorten the approval process for medications.

“By states passing this law its putting pressure on the feds, the FDA to speed up the approval process so that it doesn’t take so long to get drugs approvals,” said Rep. Culver.

Approval could take up to a decade.  The right to try law allows patients access to the drugs before FDA approval, but only if they can afford it.

“I feel pretty determined that I’m going to figure it out,” said McLinn.

McLinn set up a GoFundMe page to raise money for Jordan’s medications, she’s also t-shirts for the Muscular Dystrophy Association’s upcoming Muscle Walk.

“We are committed to finding the treatments and cures for Duchenne Muscular Dystrophy, Myotonic Muscular Dystrophy, Lim Girdle and many, many other diseases, said Amber Lannert with the Muscular Dystrophy Association.

The walk is taking place on May 16th.