A 12-year-old suing the federal government may have a whiff of adorableness. But for Alexis Bortell, who filed a lawsuit against Attorney General Jeff Sessions last fall, it’s a choice she had to make to save her life. Bortell has epilepsy and Sessions has made it his mission to make it impossible for her to access the only drug that has kept her seizures at bay: cannabis.
A Scream of Terror
Bortell doesn’t remember her first seizure. But her father, Dean Bortell, does.
“We were literally folding clothes and Alexis was sleeping on the couch,” he told Newsweek. “All of a sudden I heard her make this shriek—I mean, it was a scream of terror,” he said. “I look over and Alexis is stiff as a board, on her back, spasming.”
After several months in the dark—at first, Dean suspected his daughter had a brain-eating amoeba on account of headlines about them that summer—Alexis was diagnosed with epilepsy in 2013.
Three years ago, Alexis began taking medical marijuana and her seizures disappeared. But that treatment option is threatened by an aggressive federal crackdown on medicinal cannabis led by Sessions, who is also the acting director of the Drug Enforcement Agency.
Her day in court—February 14, at a New York City federal courthouse—is fast approaching. Alexis won’t be there in person, but her lawyer, Michael Hiller, thinks the ruling will go their way.
“We are very optimistic that the case is going to come out the way it should, which is that the Controlled Substances Act is going to be found unconstitutional,” Hiller said. Several other plaintiffs—a former professional football player, a veteran and another child—are also included.
Out of Options
The basic outline of Alexis’s story has been well reported: horrible seizures forced her family to move to Colorado from Texas where she could use products with compounds derived from marijuana. But due to the concentration of THC, also known as tetrahydrocannabinol, in one of the products she uses, Alexis is unable to cross state lines, board an airplane or set foot on a military base or in other federal buildings and lands.
Biologically, Alexis’s problem begins in the left frontal lobe of her brain. Normally brain cells communicate with each other using electrical and chemical signals. Epileptic seizures happen when those signals go haywire.
Anyone familiar with epilepsy knows that’s a fairly muted description; these rogue cells can create something terrifying to experience or watch, and you can’t know when the next seizure will strike. It can be “frustratingly random,” Dean said.
These brain signals can also spark a long-term relationship with one’s local neurologist or hospital as patients and doctors figure out what is happening. But that’s only half the battle; controlling the seizures is the other. For many people with epilepsy, one of the various kinds of prescription drugs available will work. But finding the right one or the right combination can take time. “They try to go mild to wild,” Dean said.
At home in Texas, none of the mild stuff worked for Alexis. Giving two medications a real shot and having them both fail is usually enough for doctors to call a person’s epilepsy intractable; in other words, unresponsive to drugs. Alexis tried at least 20 different doses or combinations, her father said. She also experienced some extreme side effects from conventional medications.
She had two final options in Texas: see if she was a candidate for surgery to remove the brain tissue where the seizures began or try one last medication, Felbatol. This drug carries a “black box warning,” the most serious kind the U.S. Food and Drug Administration will put on a label to flag extremely dangerous side effects. In this case, Felbatol has been associated with a serious bone marrow disorder and liver failure.
The family decided on Felbatol. But on the way to fill the prescription, their pediatrician called them and suggested they try something else. Weeks later, the Bortells packed their bags and drove to Colorado, ready to try a different course of treatment: a tincture of cannabidiol (a compound found in marijuana that isn’t responsible for a high) and a spray with THC (the compound that is). The cannabidiol tincture tastes “bad and earthy,” Alexis told a Newsweek reporter, but it’s been working. She still gets auras, the warning signs that a seizure is about to hit, but she hasn’t had a full-blown episode in the last three years. Her father says the only side effect is the constant threat of federal law enforcement.