OMAHA — For more than a decade, parents and patients have advocated for access to legal medical cannabis for suffering Nebraskans, including Shelley and Dominic Gillen, who want the option for their son, Will.

The Gillens say that regulated cannabis doesn’t kill but that what does kill is seizures. They said their son suffers from multiple types of seizures daily because of a rare disorder that makes treatments extremely difficult. Dominic Gillen said his son’s most recent change in medications resulted in a two-week hospital stay and the “very real fear that he was going to die.”

“Seizures have forced us to call 911, have landed him in the ER and have had him admitted for hospital stays countless times,” Shelley Gillen said at a public hearing related to two medical cannabis measures that appear on the Nebraska ballot this fall. “Seizures have traumatized our entire family.”

It has been more than 10 years of advocacy, including a stalled legislative bill in the early 2010s nicknamed “Will’s Law” from former State Sen. Sue Crawford of Bellevue. In that time, the Gillens said, Will Gillen has had many black eyes, head staples, stitches, concussions, knocked out teeth, a broken nose, a broken jaw and an almost fatal liver laceration.

Will’s siblings are first responders, and his parents “vigilantly check on his breathing throughout the night and in the morning to be sure he hasn’t died from an undetected fatal seizure.”

The Gillens were among more than a dozen Nebraskans who testified at a public hearing Friday at the University of Nebraska at Omaha, urging Nebraskans to support Initiative Measures 437 and 438 on the general election ballot that will be voted on, while legal challenges continue.

The measures would legalize medical cannabis for patients, caregivers and medical providers and regulate the plant under a newly created “Nebraska Medical Cannabis Commission.”

The past decade has featured seven legislative bills, three straight election cycles, five petitions and more than 700,000 signatures from voters asking for the chance to weigh in.

“These initiatives are for them, and November 5 will be about them,” said Crista Eggers, the effort’s statewide campaign manager, whose elementary-school-age son suffers from severe epilepsy and seizures.

Not yet federally approved

Douglas County Sheriff Aaron Hanson was the only opponent at Friday’s hearing. Hanson said the ballot measures would contradict federal law and bypass the “proven, critical patient safeguard” that is official approval from the U.S. Food and Drug Administration.

“The entire patient-focused system is bypassed in favor of a consumer-driven commercial industry that has no safeguards to prevent diversion of THC on approved users, including youth, and much less protect patient health and safety,” Hanson testified.

Hanson, holding up a 12-ounce red solo cup, said if someone had five ounces of concentrated THC, as would be legal under Measure 437, it would be considered a major felony and a distribution amount if he or his deputies come across someone with that amount.

Hanson said he’s in favor of reclassifying marijuana, currently on the same level as heroin, LSD and ecstasy, because it needs federal regulation, testing and dosage.

He also noted the American Medical Association and other leading organizations are against citizen-led legalization of medical cannabis.

The U.S. Department of Justice has formally moved to reclassify marijuana as a less dangerous drug, which could aid possible FDA approval. Thirty-eight states have legalized medical marijuana, while 24 of them, plus Washington, D.C., have also legalized recreational use. The other states, including Nebraska, allow limited access to cannabis products with little to no THC, according to the Pew Research Center.

Possible clinical uses

Angie Cornett, a nurse from Norfolk, said she distinctly remembers the first time a patient felt comfortable enough — more than 10 years ago — to disclose in a clinical setting that they were illegally using cannabis to control their seizures.

“It certainly wouldn’t be the last time,” Cornett said.

Opioids or other prescribed medications can lead to life-threatening conditions, including addiction, Cornett and others testified, highlighting stories of cannabis being used for a variety of conditions, including seizures, Crohn’s disease, irritable bowel disease, chronic pain, Parkinson’s disease, cancer, post-traumatic stress disorder, arthritis or burn pit injuries for veterans.

Heidi Smith testified that she watched her dad suffer from multiple sclerosis while growing up and described the side effects from medications he was on, including intense nausea. But because Smith’s dad, a farmer, couldn’t take a day off work, he ultimately went off the meds.

“Farming was our family’s main income source, and he did what he needed to do to provide for our family,” Smith testified.

A ‘choice’ for patients and families

Smith said her dad, a “conservative, rule-following Republican” asked state officials in the 1990s to consider the plant-based drug but didn’t tell anyone in the family. In 1996, he planted his crops, but he couldn’t walk when it was time to harvest, relying on neighbors to help.

He died in 2003, at age 52, and Smith said she signed the 2020 petition as soon as possible.

“These are hard-working Nebraskans who want a good quality of life and to provide for their families,” Smith said. “‘Nebraska, the Good Life,’ unless you have a medical condition.”

Genevieve Zwicky, who has a multi-systemic genetic disorder with symptoms that will increase in severity until death, said “all of my life experiences have been touched by pain.”

Zwicky, a single parent to a child with the same illness and a licensed mental and behavioral health professional, uses cannabis to manage symptoms but said she wakes up each day in agony, needing help with various daily activities, weekly medical appointments and so many medications that their planner is “overflowing.” 

“Do you not understand that pursuing this specific group of people will demonize you?” Zwicky said. “Do you not see that you are poking a bear with more strength and stamina than you have ever known or could ever hope to come across again?”

The “choice” for suffering Nebraskans, Cornett and others said, is to leave Nebraska for a neighboring state, continue to suffer or risk being charged as criminals to get the medication they believe they need.

“When patients told us their stories, we treated them as patients, not as criminals,” Cornett said. “Research validates these patients’ anecdotes.”

Ongoing legal challenges

John Kuehn, a former state senator and former member of the State Board of Health, is challenging the medical marijuana petitions in Lancaster County District Court. Kuehn alleges the petitions didn’t get enough valid signatures.

The three ballot sponsors — Eggers, State Sen. Anna Wishart and former State Sen. Adam Morfeld — were named in Kuehn’s lawsuit, alongside Nebraska Secretary of State Bob Evnen, who validated signatures placing the measures on the Nov. 5 ballot.

Kuehn is challenging his own set of signatures, and Evnen and Attorney General Mike Hilgers, who has opposed medical cannabis, filed counter allegations in the Kuehn-led lawsuit. Evnen and Hilgers are targeting about a dozen petition circulators and notaries, alleging “fraud” or “malfeasance.” 

The trial begins Tuesday before District Court Judge Susan Strong. The measures remain on the ballot.

‘Who’s going to take care of him?’

Marcie Reed of Blair, a volunteer for the medical marijuana ballot campaign, asked Friday if opponents had ever seen a child have a seizure. Her 11-year-old son, Kyler, has attention-deficit/hyperactivity disorder and epilepsy and takes numerous daily mediations.

“Who’s going to take care of him or care if he develops kidney problems or something else from the medicine he’s on now?” Reed asked. “It’s me, I’m the one that cares. I’m the one that has to deal with it, not you. I will continue to fight for what I believe is best for my kid.”

Reed told the Nebraska Examiner that it makes her “really angry” that officials have targeted the campaign.

In 2020, the campaign gathered enough signatures, but the Nebraska Supreme Court sided with a legal challenge that a single constitutional amendment at the time was too broad. The campaign then divided its efforts into two petitions but fell short in 2022, in part because of a lack of funds to pay volunteers after a major donor’s death. 

This is the farthest the campaign has gotten.

“It’s been this group of us — moms with kids with seizures, people with health problems — and to know that they can go after the most vulnerable campaign, knowing that we did not have a lot of money, it makes me think that anything that’s going on in politics is not fair,” Reed said.

‘A David versus Goliath story’

Dominic Gillen and Reed questioned why only the cannabis petitions, which had no requests to remove Nebraskans’ names from the measures, were being investigated.

At the end of Friday’s hearing, Eggers led a two-minute moment for parents, patients, volunteers and others in attendance to share who they are fighting for, with more than two dozen names being shouted out.

Eggers said it represented a sliver of the stories for which Initiative Measures 437 and 438 would provide hope.

“Nebraskans have a choice. They can vote with compassion and empathy, or they can turn away,” Eggers testified. “And those that turn away, I want you to know that the blood of the patients in this state is on their hands.”

Dominic Gillen said the attempts to defeat the effort will be a “black mark” on the state in what is “truly a David versus Goliath story that needs to be told.”

“In a moment of despair, I was reminded by one of my children to remember how that story ended,” Dominic Gillen said. “I will continue to pray for hearts to be unhardened, and I implore all of our supporters to remember: Don’t quit five minutes before the miracle happens.”