CEDAR FALLS | At 3 years old, Garrett Decker has gone through medications, surgeries, supplements and diets to control his epileptic seizures.
Nothing so far has worked for the long term.
“That basically leaves us with a big fat question mark, and a CBD (medicinal marijuana) application,” his mother, Brienna Decker, said at a forum held Monday night to advocate for a state law change so patients like Garrett can access medicinal marijuana.
CBD, or cannabidiol, is a chemical component of marijuana believed to have medicinal value without a high. A state law approved last year allowed people with intractable epilepsy to register to possess the oil -- without a means of getting it.
Organizers of Monday's meeting advocated the law be expanded to allow access to it an expand the conditions under which it could be used. A bill has been introduced in the Iowa Senate to do that.
Sen. Bill Dotzler, D-Waterloo, has said he will fight for the bill. But Rep. Walt Rogers, R-Cedar Falls, has said it will not get traction in the House this year.
As of March 4, the Iowa Department of Public Health reported it has approved 26 registration cards in the state, issued 17 and denied none.
The Deckers are still waiting for their card. Members of the Goulden family believe they are first in Black Hawk County to have received their cards in the mail.
Jason Goulden, 25, has a seizure approximately every day, and like other potential beneficiaries of medicinal marijuana, he’s gone through other treatments and surgeries, and nothing has helped.
“We’re really hoping that this will be something that helps Jason and controls his events,” said his mother, Kathy Goulden.
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She said since they have the registration card, and since Jason is an adult, they are looking at ways to access the drug through other states with medical marijuana laws.
Decker encouraged other people with intractable epilepsy, or their families, to apply for the card, because if lawmakers don’t see people applying for the registration card, they won’t believe the issue needs to be revisited.
The Gouldens said they believe it’s a matter of educating people about the value of medicinal marijuana.
Jon Custis, a Vietnam veteran with post-traumatic stress disorder from Anamosa, said he believes it’s also about advocacy.
“All we’re asking the legislators to do is to get out of their comfort zone a little bit,” Custis said. “I’m way out of my comfort zone … but I like a good fight.”
He added, “The only way this is going to work is if they hear from us, and they’re not used to hearing from us.”
His comments were echoed by Ed Maslak, who led Monday’s discussion as a board member of the Iowa Epilepsy Foundation, which supports better access to CBD in the state.
“It sounds like we’ve all got some work to do, making noise,” Maslak said to conclude the presentation after hearing from only supporters.
More information about medicinal marijuana is available at www.i4mc.org.