DES MOINES — Caleb Helland, when he was 10 years old, was having roughly 10 atonic, or “head-drop,” seizures as a result of his intractable epilepsy.
After two weeks of cannabis oil treatments, the Mason City boy’s atonic seizures stopped completely and never returned, his mother said. That was roughly a year-and-a-half ago.
“He’s way more aware of his surroundings. He’s a lot more alert, just more with it,” Cassie Helland said of her son, who is now 12 years old. “He’s in a wheelchair, and he doesn’t speak, but he smiles a lot. You can just tell by looking at him that he’s kind of more there.”
Caleb Helland is one of the many dramatic success stories that advocates like his mother relay to state legislators as they consider the future of Iowa’s medical cannabis program.
Iowa lawmakers in 2014 passed a limited medical cannabis program that allows residents to possess cannabidiol, a medicinal byproduct of the marijuana plant, for treatment of intractable epilepsy, even though that runs afoul of federal laws.
The law was passed with a July 1, 2017, expiration date, leaving state legislators this year with, essentially, three options:
• Extend the current program.
• Extend and expand the current program.
• Allow the law to expire, which would end the program.
Since the program’s 2015 implementation, 222 cannabidiol registration cards have been issued in Iowa, according to the Department of Transportation, which issues the cards.
Critics of the program, including many who use it, say it does not create an avenue for Iowans to obtain cannabidiol, which is produced only in other states, many of which do not sell to non-residents.
That’s why Cassie Helland and her fellow advocates have spent the past two years pressing state lawmakers to expand the program, sharing their personal success stories.
Caleb still experiences the occasional grand mal seizure, Cassie said, but the head-drop seizures that completely stopped were more frequent and more alarming.
“Those were really bothersome because they were on and off all day long, so they really interrupted his daily routine and activities,” Cassie said.
Cassie is one of the state’s 222 cannabidiol registration cardholders, although her family has been fortunate to not have to use it. Caleb was accepted into a clinical trial at the University of Iowa, through which he receives his treatments.
But Cassie said she does not know how long the trial will continue, and at some point, she may need the card to obtain oil for Caleb’s treatments.
And Cassie said she knows many families who have to use the card to get oil from states such as Colorado.
“If they don’t pass this or if they don’t renew the bill or think of something different, it’s not going to directly affect my son,” Cassie said. “But we don’t know how long the study is going to go on for. ... (And) I do know families that will be directly affected by it because they’re not in the study.”
Advocates for expansion of the program say they would like more forms of medical cannabis to be legalized and more ailments, such as cancer and post-traumatic stress disorder, to be covered and for the medicinal products to be produced and sold in Iowa.
“We are hopeful for a more comprehensive program that will help more Iowans,” said Sally Gaer of West Des Moines, co-founder of the advocacy group Iowans 4 Medical Cannabis whose daughter has a rare form of epilepsy. “We have kids with epilepsy that need THCA (another compound of the marijuana plant) because the (oil) doesn’t work for them, so they need a different component of the plant. So we need to help those kids.”
Among state lawmakers, opponents of expansion or the program in general say the state should not pass a law that conflicts with federal law and they should not be making decisions that are better left to medical experts.
One key state legislator, who is drafting the medical cannabis bill that will be considered in the Iowa House, said he thinks it is important the program be extended but he is uncertain whether it will be expanded.
“We have to extend the current program. I don’t think there’s any question about that,” said Rep. Clel Baudler, R-Greenfield, chairman of the House Public Safety Committee. “Expansion? There’s a question. ... I think I can safely say that the (expiration) date of July 1, 2017, will be eliminated and the present program can continue.”
Baudler said approval of program expansion would require “time, education and want from my (House Republican) caucus.”
House Speaker Linda Upmeyer of Clear Lake said that before proceeding with new state legislation, she wants to hear the intentions of the federal government and the new administration regarding medical marijuana.
“I don’t know where we’ll land,” Upmeyer said. “We are breaking federal law no matter what we do. I would appreciate the federal government to make a decision on how they want this to be approached, and then the state can take the appropriate action. So I think that’s kind of Step One, knowing that.”
Rep. Peter Cownie, R-West Des Moines, oversaw a proposal that failed to pass the Iowa House in 2016. While he has handed off that responsibility this year to Baudler, Cownie said he remains hopeful legislators pass a program expansion.
“It’s my hope that the Legislature will act because of that (July 1 deadline) and hopefully pass something that’s a better bill, a better law,” Cownie said. “The current law, while good-intentioned, hasn’t really been able to do a lot of good for people who need help.”