“I pray every night the police won’t come, but someday they might.”
These are the words of 12-year-old Alexis Bortell. Alexis lives on her family’s farm in Colorado, where she goes to Catholic school and likes to ride her bike and watch cartoons with her little sister. Alexis also has a condition called intractable epilepsy, which causes severe seizures.
After struggling through years of medical appointments, problematic pharmaceutical prescriptions and, ultimately, the suggestion that she undergo an experimental lobotomy, Alexis and her family finally found a treatment that worked. The relief it brought from Alexis’s “seizure monster” was immediate and total, and it came in the form of a readily available, painless herbal remedy that her parents give her at home. Alexis used to have seizures every day, but since this discovery, she hasn’t had a single one in nearly three years.
“I have always wanted to go to Disney World because I wanted to be a princess. Because of my medicine, I can’t go.”
Alexis and her family used to live in her native Texas, where state law allows for the use of “low THC” cannabis products for medicinal use. Such products alone can work for some sufferers of intractable epilepsy, but Alexis and her doctors found that only a combination of low and high THC and CBD oils, lotions, and nasal sprays stopped both her seizures and pre-seizure auras (the warning signs that a seizure is coming).
Since higher THC products are illegal in Texas, Alexis’s family would have been breaking the law by giving them to her there — risking thousands of dollars in fines and jail time. To keep their family safe as well as healthy, the Bortells, both retired military veterans, moved to Colorado. There they can legally purchase the medications their daughter needs — not just so she can go to school and play, but also to help keep her alive.
“Most of my friends at school don’t even know I have epilepsy. All my friends in Texas knew because I had to go to the nurse almost every day for seizures or auras.”
Yet even uprooting their family and relocating nearly a thousand miles from their daughter’s grandparents could only offer the Bortells a respite from their worries. Continuing conflicts between state and federal regulations mean that medical cannabis patients could still face penalties even in states where their treatments are legal. In addition, patients risk arrest if they travel between states with their medicine. Alexis says these conditions make her family “medical cannabis refugees,” driven from their homes and unable to return there. As she writes in the book she published last year about her experiences:
“Imagine living your whole life with your family and then one day, with no warning, you come home and the police are there and give you a choice, either move out of ‘their state’ and never return, or ‘pay the price of jail and a destroyed family.’
“We didn’t wait for the police, but if I was taking my cannabis in Texas, eventually they would have come. My friends are still in Texas, and it has been 2 years since we had to leave. That may not be long to you, but to an 11-year-old, that is forever. My family puts on a ‘happy’ face, but remember, when you turn off the TV after the news, or even after you finish this book, we are still here and we still want to come home."
Families in the Bortells’ situation have two main choices: they can keep a low profile and hope to avoid trouble, or they can take public action and hope to effect change. Alexis and her family, inspired by advocates like Vincent Lopez, decided on the latter. In July 2017, they and four other plaintiffs filed a lawsuit against the federal government arguing that its classification of cannabis as a Schedule I controlled substance (on par with heroin) is unfounded and violates citizens’ constitutional rights.
The lawsuit and its plaintiffs employed a variety of supports for their case, ranging from cannabis legislation’s racist roots to the Constitution's brief but powerful Commerce Clause, and took aim at several people and agencies in particular, including Attorney General Jeff Sessions. In January 2018, Sessions rescinded an Obama-era policy that generally discouraged federal prosecutors from enforcing federal cannabis laws in states where the plant is legal. This move not only increased threats to the health and safety of patients like Alexis, it also imperiled the nation’s entire multibillion-dollar legal cannabis industry.
“I don’t sit around and think about ‘right to referendum’ and stuff like that. I would rather go outside and play, but if I don’t keep meeting legislators, I can never spend the night at my grandparents’ house in Texas again.”
In February, Judge Alvin K. Hellerstein of Federal District Court in Manhattan rejected the suit, saying the plaintiffs needed to petition the Drug Enforcement Agency (DEA) to take cannabis off the Schedule I list. (The DEA has rejected such requests in the past.) However, as discouraging as Hellerstein’s decision was to Alexis and other patients, it seemed to stem from his commitment to legislative protocols, not his doubts about the plaintiffs’ claims.
“Your clients are living proof of the medical applications of marijuana,” Hellerstein told one of Alexis’s lawyers, Michael Hiller, during the hearing. “How could anyone say that your clients’ lives have not been saved by marijuana? How can anyone say that your clients’ pain and suffering has not been alleviated by marijuana? You can’t, right?”
In the wake of this initial defeat, Alexis’s legal team is considering their next steps. If they appeal and win, they expect the defendants would attempt an appeal to the Supreme Court. In any case, Hiller is aware of the magnitude of the fight he, Alexis and the entire cannabis community are in. "If the court were to grant our relief,” he said, “the case really has the potential to impact tens of millions of people.”
After the decision, Alexis posted on Facebook:
“We always said we would probably have to go to The Supreme Court.
“We are on our way there...
You can read more about Alexis and support her work for sensible cannabis legislation on her Facebook page.
Visit these websites to learn more about legal cannabis advocacy and ways to get involved:
- - National Organization for the Reform of Marijuana Laws
- - Marijuana Policy Project
- - The Americans for Safe Access Medical Cannabis Advocate's Training Center
Written By: April Greene