Opinion » Note

Rare Disease, Common Problem



Over the years, Boise Weekly has profiled a handful of Idahoans who have been failed by the health care system.

In early 2015, freelancer Carissa Wolf dug deep into the issues surrounding medicinal cannabidiol with a profile of the Carey family in Boise. Their daughter, Alexis, struggled with a rare condition that wracked her young body with seizures beginning when she was 2 months old. Throughout the 2014 legislative session, the Careys lobbied lawmakers to give kids like Alexis access to cannabis-derived medications that had shown promise in treating seizures. A bill allowing the use of cannabidiol oil by sick Idaho children passed the House and Senate in 2015, but Gov. C.L. "Butch" Otter quashed the legislation with a veto. Meanwhile, the Careys and families like them are still waiting.

In early 2016, BW News Editor George Prentice reported the story of John Knudsen—a Boise man diagnosed with ALS and facing, as he put it, "a death sentence." Far from resigning himself to his fate, Knudsen reached out to Idaho lawmakers in an effort to convince them to pass a bill that would give terminally ill patients "the right to try" medications or treatments that might not be fully approved by regulators.

Legislators—particularly Boise Democratic Rep. Melissa Wintrow—were receptive, and in April 2016, Otter enacted "John's Law," affording those who most need it a crucial lifeline.

This week, we meet the Harvey family, whose 2-year-old son Kyler has spent his entire short life bouncing from doctor to doctor in an effort to treat a rare neurological disease.

Kyler's mom, Tonya, introduced him to an Idaho Legislature panel in late February, putting a name, face and voice to the need for Idaho to do something about the shortage of pediatric neurologists in the state, which makes it daunting to seek treatment—often requiring extensive travel, sky-high costs and struggling with long wait lists.

Again, Wintrow has championed the cause, resulting in a House concurrent resolution that would "raise awareness and knowledge for diagnosing rare neurological diseases."

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