'Right to Try' law a hopeful step for Minn. woman with ALS

Minnesota's newly passed "Right to Try" law is designed to help people with coping with a serious illness. Diagnosed with ALS less than a year ago, Linda Griffiths is feeling the effects of her muscles deteriorating quickly.

"It takes away all your independence is what it does," she said.

On average, doctors give patients like Linda two to five years to live.

"We talk about it. You wake up one day and your whole life changes, in an instant," Griffiths said.

Recently, her family learned of an experimental drug called GM604, and with the passing of the "Right to Try Law," Griffiths is hopeful she will be able to try the new treatment. The purpose of the new law is to allow the terminally ill to try new drugs, procedures, or medical devices not yet approved by the Food and Drug Administration -- specifically, those drugs that are in first phase of testing.

"I think it's fantastic, not just for me, but for people with other diseases," Griffiths said.

Rep Nick Zerwas (R-Elk River), who was born with a rare heart defect, and had 10 surgeries as a child, including an experimental one that ending up saving his life, authored the bill.

"So my passion behind this bill is how I had my opportunity for my miracle. And no one got in my way. And no bureaucratic, and no government official said, ‘no you can't try this. You just have to give in -- accept your fate.' I think that's an insult," Zerwas said.

The Minnesota Medical Association has remained neutral on the bill, initially citing concerns with the bill's physician liability. The language has since been change so doctors are not mandated to prescribe the alternative, insurance companies are not mandated to pay for the, and the drug companies do not have to provide them.

"We are hoping something is right around the corner," Griffiths said.

The drug Linda is hoping will come to her rescue isn't currently being released by the drug company making it, but the new bill has given her a dose of hope a treatment might be on the horizon.

"I truly feel it ought to be my choice. I would have the decision about if I want a feeding tube, if I want a breathing tube, those would be my decisions. It ought to be my decision to try a drug also."

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