The first thing you notice about John Knudsen is his eyes and how much they want to tell you. Unfortunately, the second, third and fourth things you notice is how amyotrophic lateral sclerosis—also known as ALS or Lou Gehrig's disease—has made his breathing labored and robbed him of his speech and strength. Compared to photos of Knudsen snapped several years ago when he worked as a bush pilot/state trooper in Alaska, it is hard to recognize the man sitting in a chair at his Boise home, his legs covered by a Boise State Broncos blanket.
"There's nothing the doctors can do," said Knudsen, followed by an uncomfortable silence.
Knudsen struggled for those words. A visitor—and there are few to the Knudsen household—must lean in to decipher his speech. The ALS has caused muscle atrophy and occasional spasticity, impairing Knudsen's diaphragm and tongue and making it difficult for him to breathe.
A year ago, Knudsen thought he still had ample breath to talk to Idaho lawmakers about his dilemma and the plight of thousands of Idahoans shackled to a fatal diagnosis. That's when he wrote a letter.
"I was given the death sentence five years ago," Knudsen wrote to members of the Idaho House and Senate on Feb. 16, 2015. "I urge you and your elected colleagues to pass a bill that would give myself and thousands of people some hope, if not a cure, from the hundreds of diseases that rob us of our lives."
The letter sat in lawmakers' inboxes, unanswered until a few weeks ago, when Boise physician Dr. James Quinn paid a visit to the Idaho Statehouse. Quinn and Knudsen have never met, yet they share an impassioned advocacy for the untold Idaho residents who deserve decency and respect in their final days.
"No, I had never heard of John Knudsen," Quinn said when he first heard Knudsen's story. "But his story is not uncommon. In fact, let me tell you a story..."
Quinn took a long breath, paused and looked down at his hands.
"My mother was diagnosed with ALS. I remember her asking, 'Jim what can they do for me? Is there a cure? How long will it be for me to get better?' I got weak in the knees," Quinn said. "I said, 'There's nothing they can do.' I told her how it would progress; how she would have difficulty swallowing and breathing and then..."
Quinn took another long pause.
"She died a year and a half later," he said. "It's haunted me every day since."
In the course of his career, Quinn has served as an orthopedic surgeon, an emergency care physician, in general family practice and most recently at Advanced Clinical Research, working on new medications for dengue fever, smallpox, hypertension and arthritis.
"But there's something called 'The Right to Try' that more Idahoans need to know about," he said. "It's not new to the much of the rest of the country."
In the past two years, as many as 24 states have enacted "right to try" laws, allowing terminally ill patients to access trial medications that have passed Food and Drug Administration safety tests but have not yet been given full FDA approval.
"Phase one tests the safety of the drug and its optimum doses," said Quinn. "But phases two and three—where small- and big-group testing takes place—unfortunately, that's taking as long as 16 to 18 years. Meanwhile, too many people are dying."
Quinn made his way to the Statehouse and ultimately found himself in the office of House Rep. Melissa Wintrow (D-Boise).
"And as Dr. Quinn was talking to me about 'Right to Try,' I kept thinking to myself, 'Where have I heard about this before?' I looked into my old emails and even reached out to the Legislature IT staff to help find it," Wintrow said. "Lo and behold, there was the email from John Knudsen from February 2015. I told my aide, 'We need to find him as soon as possible.'"
Wintrow opened her letter to Knudsen with "Dear John, I have been working on this issue and have a draft bill to propose to Health and Welfare. Can I come see you as soon as possible?"
Knudsen said yes and Wintrow told him about her plans to introduce Right to Try legislation. A hearing on the proposed legislation could convene as soon as Thursday, Feb. 18.
"The heart of the bill is to give someone personal autonomy over their own body," said Wintrow. "But we live in a litigious society, so we need to release liability from the physician. We don't want to penalize doctors. And to be clear, this is only for patients who have a documented terminal illness, and the drug has to make it through the first phase of the FDA safety process."
Wintrow said she has spent the past few weeks meeting with representatives of Idaho insurance carriers, hospitals, physicians and pharmaceutical interests. To date, she said, she has received no pushback. More important, she added, has been the positive feedback from Republican leadership on the proposed legislation.
"There's probably a good reason for that: One of the leading national advocates of Right to Try is the Goldwater Institute," said Wintrow, referring to the conservative think tank that champions limited government. "I can't tell you how many Republicans have told me, 'Wow, you're supporting something from the Goldwater Institute?'"
While it's difficult for Knudsen to express excitement, he said he's anxious to see if the Legislature takes up the cause, even though he added, "It's probably too late for me. It's about others now."
When and if the legislation is successful, Knudsen said he would love for Gov. C.L. "Butch" Otter to sign it into law.
"Because I know Butch," said Knudsen. "After I retired, I used to help out a bit on Butch's farm. I would think he would remember me."