Parents vow to fight medical marijuana policy

Marijuana General Reporting, First Place, Society of Professional Journalists, 2020

Originally published in the Douglas County News-Press.

Brad Wann counts the months he and his family have been protesting the Douglas County School District’s medical marijuana policy.

Fourteen. Fifteen. Now 16. With little progress.

In October, school board President David Ray pledged to review the policy during the directors’ Nov. 12 meeting — what could have been a milestone in the dispute between the district and families who use medical cannabis.

The plan was short-lived. The board removed the item from its agenda before the meeting took place, at the advice of legal counsel, Ray said. In a statement, the district stated it learned of a new compaint filed against it with a state regulatory agency regarding the medical marijuana policy. Ray said the board would pick up the policy review again once that investigation is completed, but he could not say how long that would take.

A spokeswoman for the district declined to say with which agency the complaint was filed and who filed it. The Wann family also declined to discuss the complaint or confirm if they filed it.

Removing the Nov. 12 agenda item served as another blow to Brad, his wife, Amber, and their 18-year-old son Ben.

It would also mean more meetings, more protesting, more pleading with the district to change the policy.

For more than a year, the Highlands Ranch family has agonized over the district’s approach to medical marijuana. They attend nearly every board meeting, urging the board to amend its policy.

School personnel are not permitted to administer cannabis products to students. Only primary caregivers and parents can, if they’re willing to come to school and do so. The cannabis must come and go with them and can’t be stored on site. The district displays an explanation for its policy on its website. It has declined to update its policy in accordance with state law because marijuana remains illegal at the federal level, the statement says.

Ben says the policy makes him feel less safe at school. The Mountain Vista High School senior has epilepsy and relies on the nasal spray CannatolRx to stop a seizure. The medication contains some THC — the main psychoactive compound in marijuana — and is not FDA approved, its website says.

Colorado law allows school personnel to volunteer and administer medical marijuana to students, but districts have the option of opting in or out of the policy. Douglas County has opted out. Two of the state’s 178 school districts have opted in. State Rep. Dylan Roberts, a Democrat representing Eagle and Routt counties, sponsored the 2018 bill allowing staff to administer marijuana products.

Roberts said some districts fear they would lose federal funding if they enacted the policy, because marijuana remains a prohibited Schedule I drug under federal law. He’s highly skeptical districts would be penalized in that way, and the law allows a district to rescind its policy if there’s any indication the federal government would pull funding.

Under school policy, only Brad or Amber could administer the medical cannabis to their son in an emergency, but the family lives several minutes from school. Serious seizures cause brain damage within five minutes, they said, and Ben is allergic to the seizure medication commonly carried in ambulances, according to his parents.

The afternoons before school board meetings, Amber said, anxiety bubbles up inside her, building into a stomach ache as the evening draws near.

“I would cry before every school board meeting, I don’t want to do this. It’s not easy. We’re putting our son on the line,” Amber said.

Not alone

The Wanns aren’t the only family in the fight. Mark and Sarah Porter join them at most board meetings to advocate for their daughter, Marley Porter.

Marley, a 14-year-old student at Castle Rock Middle School, was diagnosed with Crohn’s disease, which the Mayo Clinic describes as an inflammatory bowel disease, at age 7. She takes four capsules a day containing a 1:1 ratio of THC and CBD — a cannabis derivative with no more than 0.3% of THC, according to the U.S. Food and Drug Administration — that the family makes at home.

The family lived in Maryland at the time of Marley’s diagnosis and tried experimental treatments with Johns Hopkins Hospital in Baltimore, Mark said. In 2016, they moved to Colorado to try medical cannabis.

They make Marley’s cannabis capsules at home because products available on the market are too expensive and not covered by insurance, Mark said.

Both parents work and say they can’t take time off to give Marley her medicine during the day.

“I just want to be able to take my medicine to school, take it at school with or without the nurse’s help,” Marley said.

Mark said Marley has missed 34 days of school this year and was hospitalized for two weeks after flare-ups. He attributed her poor health to skipping doses of her medical cannabis while she attended school earlier in the year.

“Just update (the policy) according to the law that was passed,” Mark said. “We’re not asking them to do anything else.”

Of the state’s 178 school districts, only the Clear Creek School District permits district staff to administer medical marijuana, while the Eagle County School District allows the administration of CBD only.

The why

The Wann family’s journey toward medical cannabis began during a tumultuous period in Ben’s medical history.

Ben was diagnosed with epilepsy at age 3. For roughly 10 years, he relied on pharmaceutical medications. They seemed to work at controlling seizures, although he still experienced them occasionally, Amber and Brad said.

Then in 2011, Ben began experiencing constant seizures of the brain. Doctors prescribed Ben high doses of Valium, which can be used to treat seizure but led to autistic-like behavior in Ben, Amber said.

Throughout the years, pharmaceutical cocktails changed Ben’s personality in other ways, too, Brad and Amber said.

At 9 years old, Ben began chasing his sisters throughout the house. He tried damaging the family vehicle and attempted to get out as the family drove. The girls, a twin sister and two older siblings, felt “wrecked” over the changes in their brother, Amber said, and the entire family struggled.

“He had the worst behavioral outbursts. He wouldn’t go to school,” she said in a 2018 interview with Colorado Community Media. “He raged. He just started hitting, and he had never been that way.”

They also worried pharmaceuticals would lead to liver damage, or that he might have suicidal thoughts but not express them to the family. With support from his neurologist, the family chose to wean Ben off of his medications when he was 13.

Once off the drugs, Ben didn’t have a seizure for months, but in November 2015 they returned.

“They came back stronger and harder and more frequently,” Amber said. “The decision was made to go ahead and try Charlotte’s Web.”

She’d heard of the hemp oil called Charlotte’s Web through other parents of children with epilepsy. Shortly after a snowstorm, she drove to Colorado Springs on Dec. 16, 2015. That night Ben received his first dose of hemp oil.

Once they made the switch, the family’s life was forever changed, they said.

At 14, Ben began singing along to the radio, the first time Amber could recall him doing that. Prior to using cannabis, he struggled with significant memory loss and couldn’t remember lyrics, Amber said.

Ben’s communication improved and he grew confident enough to hold conversations with adults. Then his academic performance strengthened, and Amber said she started getting calls from his teachers asking what led to the difference. The family began to realize his pharmaceutical medication delayed Ben cognitively in addition to his behavioral problems, she said.

Ben says he can remember feeling angry when on pharmaceuticals, but he didn’t know where the feelings came from. He can still recall the chalky taste of his medicine and the metallic flavor he’d notice in his food and beverages before a seizure was about to hit.

Emory Wilder, who teaches medical cannabis courses for Metro State University and Red Rocks Community College, said research into medical cannabis is limited but positive for treating epilepsy.

Marijuana’s status as a Schedule I drug — banned in all circumstances under federal law — is the biggest hurdle preventing long-term clinical studies, Wilder said, although there has been basic scientific research into medical cannabis and some clincial research. Wilder said smaller pilot studies have consistently shown that medical cannaibis can stop a seizure once it’s started and prevent seizures from happening.

“There’s a lot more studies that need to be done,” he said. “The drug war has set back scientific research into cannabis 70 years.”

Ben has been seizure free since switching to medical cannabis four years ago. Still, the family fears the possibility of breakthrough seizures, which he remains at risk of experiencing. That’s why the family keeps Ben’s nasal spray on hand.

“We pray he never needs it,” Brad said. “It just needs to be on school grounds.”

Controversial tactics

After months of failed lobbying, the Wann family’s relationship with the district is embroiled in emotion and distrust. They feel lied to, discriminated against and cast aside.

Public comment offered by the Wanns and Porters at board meetings frequently escalates into lectern-pounding and shouting at directors.

In September, Brad refused to leave the lectern when his allotted time for public comment expired, speaking over the buzzer. District policy allows each speaker three minutes.

Once he left the lectern, Director Anne Marie Lemieux asked to make a clarification and began addressing the board. As she spoke, Brad returned to the lectern and stood there. A security guard took a few steps toward him when another uniformed officer motioned the first guard to wait.

“Excuse me, you’re not allowed to be up here,” Lemieux said.

“Why not,” members of the Porter family shouted from the back of the room.

“I’m not going to let you guys lie again,” Brad said. Lemieux asked for the microphones to be turned off.

Moments later, Brad returned to his seat.

While speaking with Colorado Community Media in November, Ray acknowledged the relationship between the families and the district is strained.

“It’s like any parent that is upset,” he said. “If the board is not able to provide something that the parents want, there’s going to be tension. I would say certainly that would describe the relationship right now.”

The Wanns have tried other ways of keeping Ben’s medical marijuana with him.

On the first day of school this year, the Wanns sent Ben’s nasal spray with him. The school allowed the medication on school grounds in the final two weeks of the previous school year, Brad and Amber said. This year they left it in the front office with a school employee along with his medical marijuana patient documentation.

By mid-morning, the couple says they received a call from Assistant Superintendent Ted Knight. The Wanns says Knight told them the product needed to be removed, and if they brought it to school again, the district would seek a no-trespassing order. A district spokeswoman said Knight and the district could not comment on the incident while the state regulatory agency’s investigation is underway.

Brad posted a recording of the purported conversation with Knight on Facebook, where he frequently critiques the district and its officials.

Amber said some community members scrutinize their tactics, but the family sees no other option.

“We’re like, what do you expect us to feel like?” she said.

Sitting at a Highlands Ranch coffee shop in October, Amber’s frustration with the district spilled over to into a moment of self-reflection. Tears streaming from her face, she considered the possibility their actions as parents could spark students to tease or bully Ben.

“Our son, his name is out there,” she said, wiping tears from her eyes. “I don’t want this to hurt him permanently, our fight for this.”

Ray said he understands parents’ concerns and that he plans to review the policy once the complaint against the district is resolved. Still, he said, the district has much to consider before it can amend the policy, if the board moves in that direction.

“It would be very rare of a district our size to make that decision,” Ray said. “There’s a lot of ripple effects that we have to analyze.”

Still, the Wanns are not so tired in their battle that they plan to give up anytime soon. Brad and Amber vow to keep advocating for the policy update until it is changed, including after Ben graduates. There are other families in the district who rely on medical marijuana, Amber said.

“The reason we haven’t stopped asking is because the need doesn’t go away just because they say no,” Amber said. “That’s why we keep showing up and fighting for this.”