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John's Law: Right to Try Becomes Reality in Idaho

"I sent an email to all of the legislators. I even thanked the ones that didn't vote 'yes.'"

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John Knudsen stretched out his once-muscle bound arm, robbed of its strength by ALS (Amyotrophic Lateral Sclerosis), aka Lou Gehrig's disease.

"You've got an amazingly sharp mind. It's a shame that your body isn't paying attention," said Rep. Melissa Wintrow (D-Boise). "Here, I've got something for you."

Wintrow tucked a pen inside Knudsen's clenched fist.

"The governor and I are the only two people who have touched this pen," she said. "This is the pen that Governor Otter signed the Right to Try bill into law [with]. Your name is a part of history now."

Not many people, let alone Idaho lawmakers, knew who John Knudsen was a few months ago. Soon after Boise Weekly profiled Knudsen and his advocacy for so-called Right to Try legislation—which would allow patients with a fatal diagnosis the right to ask a physician for access to drugs not yet fully approved by the Food and Drug Administration—lawmakers from both sides of the aisle jumped on the bandwagon to push it through.

"I sent an email to all of the legislators," said Knudsen, pausing for breath every few words. "I even thanked the ones that didn't vote 'yes.'"

There weren't many. House Bill 481 overwhelmingly passed through the Idaho House and Senate before making its way to the governor's desk.

"John, the governor told me to tell you how pleased he was to sign this into law," said Wintrow.

Standing near Knudsen was Dr. James Quinn, a former orthopedic surgeon and emergency care physician, and the current investigator for Boise's Advanced Clinical Research laboratory.

"I didn't do as much as Melissa did, but I sure was proud to be part of this," said Quinn, who offered expert testimony before both the House and Senate Health and Welfare committees. "You know what's interesting about this? That if a patient and doctor ask for the drug and the pharmaceutical company agrees, there won't be any profit on what is considered an experimental drug."

Wintrow explained that many drug companies who made experimental drugs available to dying patients could only offer drugs "at cost"—they won't make any profit. As written, the Right to Try law will only permit drugs that have cleared FDA safety tests but have not yet been given full FDA approval.

"It's too late for someone like me, but this will help a lot of other people," said Knudsen, looking at the official pen that turned Right to Try from an idea to a law. His wife Nancy walked into the room.

"We should have champagne," she said and minutes later, guests were raising their glasses.

"Here's to you, John," said Wintrow. "How do you feel?"

Knudsen looked up, and took a long, labored breath before responding.

"Grateful," he said.