Public schools balk at youths who take medical marijuana
When Brooke Adams has a seizure, every second counts. The 3-year-old has Dravet syndrome, a rare but severe form of epilepsy, and her grand mal seizures can be triggered by exhaustion or changes in body temperature. Brooke has 20 to 30 of them a month; the longest lasted three hours.
But when Brooke is treated with the main active ingredient in marijuana — THC — at the
Brooke Adams, 3, rides in a therapy swing at her Santa Rosa preschool. Brooke has Dravet syndrome, a severe type of epilepsy, and takes cannabis oil to stop her seizures.
onset of one of these seizures, it can stop within minutes, according to her mother Jana Adams.
As a result, medical cannabis has changed Brooke’s life. At the same time, it has made it difficult, if not impossible, for her to attend a public school in Santa Rosa’s Rincon Valley Union School District.
In California, as in the vast majority of states that have legalized medical marijuana, children with epilepsy and
other illnesses can be treated with cannabis. Since 2015, New Jersey, Maine, Colorado, and Washington have passed additional laws that permit parents and other caregivers to administer these medications on school property — actions that were directly inspired by kids like Brooke.
No such law exists in California, and private schools, which are not subject to many public school regulations, set their own policies.
“Not only is (marijuana) still federally illegal and in a varied legal state in a number of states, but the way school policy is done varies greatly from state to state,” said Hunter Railey, a researcher at the Education Commission of the States, a Colorado organization that reports on policy issues. “It’s a giant experiment right now.”
Under current California State Board of Education code, a student who needs to be treated with medication on campus during school hours must have a written note from their parents and their doctor. The medicine also must be given to the school in a container labeled by a U.S.-licensed pharmacist.
But medical marijuana patients can’t get prescriptions. Instead, they get less official “recommendations” from doctors. That leaves school districts across the state with few options when it comes to students like Brooke Adams.
By the time she was 16 months old, Brooke was on four different pharmaceuticals, but saw no difference in the frequency of her seizures. Things changed when Jana Adams started treating her daughter with a California medical marijuana extract called “Jayden’s Juice,” named for a Modesto boy also with Dravet. The tincture has a high level of the second most common active ingredient in cannabis, called “cannabidiol.” Jayden’s Juice gave Brooke 10 seizure-free weeks.
In 2015, a study spearheaded by a New York University neurologist found that subjects treated with cannabidiol extract saw a 36.5 percent reduction in their seizures, a rate similar to that achieved through pharmaceuticals. Two percent stopped having seizures entirely.
Epidiolex, a cannabis medicine developed by GW Pharmaceuticals, based in Britain, reduced seizures by an average of 54 percent during a 2015 study. The drug is now in the final phase of U.S. trials authorized by the Food and Drug Administration.
After finding success with cannabidiol, the Adams family decided to try out THC oil, which some claim acts as a “rescue medication.” Unlike cannabidiol, which may help prevent seizures, THC allegedly stops them after they start.
“The ideal rescue medication is a medicine that gets into the bloodstream quickly, gets into the brain quickly, and stops the seizure with minimal residual side effects from that medication,” said Dr. Joseph Sullivan, director of the Pediatric Epilepsy Center at UCSF’s Benioff Children’s Hospital San Francisco. For patients like Brooke, THC oil checks those essential boxes.
There are no formal studies into the effectiveness of THC as a rescue medication, only anecdotal evidence from families like the Adams. While Dr. Sullivan says their first-hand accounts are useful, the American Epilepsy Society states that “anecdotal reports alone are not sufficient to support treatment decisions,” and that cannabis should be studied using well-founded research methods.
Despite the lack of clinical evidence, Jana Adams said THC oil works for her daughter. But for it to be effective, it has to be administered as soon as she starts having a seizure, including when she’s at school.
“If we’re really looking for what’s in the best interest of the child, we’re not asking the school to do anything evasive,” Dr. Sullivan said. “It’s essentially doing something that a parent feels comfortable doing at home.”
When Brooke turned 3, she became eligible for a spot in a public preschool program. Adams notified the Rincon Valley school district about Brooke’s medical marijuana use prior to her first Individualized Education Plan meeting in May 2016. District officials told Adams that while Brooke qualified for a number of services — including four hours of preschool a day, summer school, transportation, and a number of therapies — her medication wasn’t allowed on district property or on the bus. Instead, they offered to send a teacher to the Adams home for an hour a day.
The reason: Possession of marijuana, whether medical or recreational, is currently prohibited within 1,000 feet of public school campuses and buses by both federal and state law.
“Rincon Valley has concerns about this restriction, as some students have prescriptions for medical marijuana that enable the student to be able to attend school,” said Cathy Myhers, the district’s student services director. She has been working with the Adams family on their education plan, though she could not comment specifically on their case.
“Federal and state law require the district to assist a student with a disability with taking medication if such medication is necessary so that the student can attend school,” Myhers added. That could include medical marijuana one day. Myhers said the district is working with its attorneys on next steps for the small number of students who currently use this cannabis.
“Rincon Valley would like to see the restrictions changed so that students with disabilities who require medical marijuana to be administered during the school day per a physician’s (recommendation) can attend appropriate public school campuses, just as any other student would be able to do,” Myhers said.
The Association of California School Administrators, an organization that represents the state’s 17,000 educational leaders, has said it is examining the medical marijuana situation “to determine the successes and challenges facing our public schools, districts, and students.”
“With education evolving every day, this is a new issue facing students, teachers, administrators, parents, and the community at large,” the organization said.
Though her school district is actively working to change its regulations, Jana Adams
has gone through almost a half-dozen planning meetings trying to find a suitable solution for her daughter. After months of back and forth with no satisfactory solution, Adams started talking to lawyers. She connected with the Community Alliance for Special Education and Disability Rights of California, which recommended Joe Rogoway, a San Francisco attorney who specializes in cannabis law.
“Any parent that goes through an IEP process generally has a sense of frustration,” Rogoway said. “When you’re dealing with sensitive issues like Dravet, that is really a life-or-death type of condition, that’s just really amplified.”
Rogoway is working to change public school policy at the state level. He’s working with the Rincon Valley district to revise educational codes affecting students like Brooke and to incorporate relevant language into pending cannabis legislation. A bill could pass this year.
On Friday, state regulators released draft medical marijuana regulations that promise to further legitimize the drug for pediatric patients. A federal crackdown also seems unlikely, according to Thursday’s statement from Colorado Gov. John Hickenlooper, who spoke with Attorney General Jeff Sessions. Sessions has indicated he may continue former President Barack Obama’s hands-off policy toward statelegal pot activity.
“The ultimate goal is to get this placed into something that is moving forward so that schools have the ability, without fear, to be able to administer this medication,” Rogoway said. “It’s not a situation where we’re talking about high school students smoking joints on campus. This is something where it’s a manufactured oil administered by a nurse to a child that desperately, desperately needs it to get through the day and not have multiple seizures.”
But until those laws are in place, and with cannabis still classified as a Schedule 1 drug under federal law, school districts would be at risk if they allowed students to be treated at school. Districts could potentially lose their Title I funding, and treating students would create legal gray areas, according to policy researcher Railey.
“There is a question that I don’t think has been resolved, or really even broadly considered, about privacy protections and whether they apply to medical marijuana,” he said.
Last fall, after missing out on three months of summer school and having to pay for therapies out of pocket, Adams was able to secure a lastminute spot for Brooke at the private Humboldt Community Preschool. The Rincon Valley district eventually reimbursed the family for some of its summer school costs and is now paying Brooke’s tuition. Since February, Brooke also has been able to take the public school bus.
Adams, though, is already thinking of the future.
“What’s going to happen in kindergarten?” she said. At the moment, “There are no schools that she’s able to go to in kindergarten.”
But by advocating for her daughter, Adams could set off big changes across the state.
“She’s not going to be the only kid,” she said. “It may be that they just don’t know that there’s other options.”