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New Hopes, Concerns Surface With Passage Of 'Right To Try'

Five-year-old Jordan McLinn wants to be a firefighter.

His family's home is peppered with fire hats, jackets and toy fire trucks, and Jordan even spends some his time hanging out at the local fire station.

But those dreams of battling burning buildings could be cut short.

Jordan lives with Duchenne muscular dystrophy, a form of muscular dystrophy that affects the X chromosome and prevents one of the body's genes from producing a protein that helps hold muscles together. Muscles slowly degenerate over time, often resulting in fatal lung or heart disorders.

Unlike other muscular dystrophies which worsen slowly, Duchenne moves quickly. There is no known cure for the condition, and those with Duchenne typically live to be about 20 years old. Jordan's mother, Laura McLinn, says the diagnosis was hard to accept.

"When Jordan was diagnosed, we pretty much felt like our world had come to an end," Laura says. "There was a lot of crying. It was really hard, but then we realized we had a choice to make: we can stay depressed and already think about the end, or we can basically make every day the best day ever."

Laura stays home and oversees Jordan's care. She tries to give him a normal childhood, albeit maybe with a few more tight hugs and spur of the moment adventures.

A Law To 'Give Hope'



Gov. Mike Pence signed House Bill 1065 into law Tuesday. It's a measure that could make a significant difference in the lives of Jordan and others living with terminal illnesses.

Often referred to as Right To Try, the legislation grants those afflicted with terminal illnesses access to experimental medications that have only passed the first phase of the FDA's approval process.

The FDA's three-phase approval process can take years to complete. Phase one focuses mostly on safety - it determines a drug's side effects and often looks at how it's metabolized in the body.

"It's basically about letting people control their own destiny. It's saying, ‘Hey, I'm going to die, but I should have a right to try something if it looks promising,'" Laura says.

With the governor's signature, Indiana joined Arizona, Colorado, Louisiana, Michigan and Missouri as the sixth state in the nation to pass this type of legislation.

"It's basically about letting people control their own destiny." – Laura McLinn


And it's a cause Laura and Jordan have been advocating for - the two made their way to the Statehouse earlier this month to lobby and testify in its favor when it was heard in front of a Senate committee. Watching the bill become law was an emotional process, Laura says, but it was a process with an important payoff.

"It was the first time I ever sat and watched a vote take place," she says. "And when I actually saw the governor take the pen from Jordan's hand and put his signature on that, that was pretty awesome."

Sen. Ed Charbonneau, R-Valparaiso, championed the so-called Right To Try bill in the Senate after a constituent brought the issue to his attention. It sailed through both chambers of the General Assembly with unanimous approval.

"Very rarely do you get the opportunity to stand up in front of the Senate and say, ‘I have a bill that is guaranteed to save lives, that is guaranteed to give hope to the hopeless,'" Charbonneau says.

Access Or Obligation?



Despite overwhelming support from legislators, some medical professionals say they're not sure how much , some medical professionals are wary.

Their main concerns are the cost - a relatively new FDA approved drug for cancer, for example, can cost patients between $10,000 and $12,000 per month - and effectiveness of these experimental drugs. Some in the field argue the FDA's process of testing drugs exists for a reason.

Dr. Chris Daugherty, a professor at the University of Chicago Medicine's MacLean Center for Clinical Medical Ethics, says patients have the right to say they want to pursue these experimental drugs, but he has concerns about whether doctors are obligated to prescribe them.

"They absolutely have that right to say it," Daugherty says. "The question is whether or not they have the right to say it in such a way that other individuals, organizations and institutions then have an obligation to make that happen."

Laura sees those challenges, too, and although she says she's ecstatic to see the measure receive such wide support, she says the next step is the hard part.

She and her family will have to find a doctor and drug provider willing to prescribe any available medications to Jordan, but she says those larger hurdles are worth the effort if clearing them means prolonging Jordan's life.

"There are definitely some obstacles ahead," she says. "I look at them as opportunities, though. It's going to be another project for us and another challenge."

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