Yesterday, President Trump signed what is known as “right to try” into law. The intent of the legislation is to allow terminally ill patients the lawful ability to try experimental treatments that are not fully approved by the Food and Drug Administration (FDA). Similar legislation sponsored by Democratic State Senator Tim Mathern went through the 2015 North Dakota Legislature.
In 2015, a family from Grace City, North Dakota came to the Legislature looking for help. Three of the boys were diagnosed with PKAN a neurodegenerative disorder that is incredibly rare. “The disease is caused by the body’s inability to metabolize vitamin B5, resulting in debilitating iron deposits in the brain,”
as reported by Patrick Springer at the time.
“Right to try” legislation was their long-shot.
The family found hope in State Senator Tim Mathern of Fargo. Mathern introduced
SB 2259
that joined North Dakota among other states pushing “right to try” bills. Perhaps, if enough states passed it, Congress and the FDA would allow these patients access to experimental treatments. It was a long shot. In the end, they succeeded.
Passage didn’t come easy. The bill failed the Senate 21-23 on Friday, February 13, 2015. A narrow defeat. I voted “No.”
I was wrong
. On Monday, February 16, 2015, following a weekend of discussion and reflection, the Senate moved to reconsider the bill. This time, it passed 32-15. I joined ten others in correcting our lapse of judgment.
From there, it was onto the House who amended the bill and ultimately passed it 91-0. Following the conference committee, the Senate voted 42-5 on its final passage. It was onto Governor Dalrymple for his signature. In the end, five State Senators stood alone in voting against the final bill on three separate occasions. Oley Larsen, Gary Lee, Judy Lee, Jessica Unruh, and Congressional candidate Kelly Armstrong.
It was a victory for the family and others like them if the message was delivered to Washington. Yesterday, with President Trump’s signature we know it was. Today, I reflect on the guidance of Senator Tim Mathern as the bill navigated through the process. I hope the family from Grace City is a step closer to accessing the treatment that may bring them relief.
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(Tyler Axness is a talk show host on the Mighty 790 KFGO in Fargo-Moorhead. His program, “Afternoons Live,” can be heard weekdays from 2 – 4 p.m. Axness is also the creator and writer of @
NDxPlains
, a blog dedicated to transparency and accountability in North Dakota politics. Follow Tyler on Twitter @TylerAxness.)
