Updated | 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. Alexis 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
Alexis doesn’t remember her first seizure. But her father, Dean Bortell, does.
“We were literally folding clothes, and Alexis was sleeping on the couch,” Bortell 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.”
At first, Bortell suspected his daughter had a brain-eating amoeba on account of headlines about them that summer and took her to the hospital. Within hours, it became clear something else was wrong. 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 Administration.
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 one another 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," Bortell 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,” Bortell 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 CBD tincture tastes “bad and earthy,” Alexis told Newsweek, 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 past three years. Her father says the only side effect is the constant threat of federal law enforcement.
Safer Than Seizures
Some science backs up Alexis’s treatment plan. Clinical trials have shown that CBD can be useful to treat seizure disorders, but we’re still learning why it works. CBD could be working along about a dozen different pathways and receptors, said Dr. Jerzy Szaflarski, the director of the epilepsy center at the University of Alabama at Birmingham. (Coincidentally, that's the same state university system from which Sessions earned his law degree.) Exactly how many might be related to epilepsy isn't entirely clear. "The evidence for each and every one of those pathways is there but it's relatively weak," Szaflarski said. "It's going to take a while before we sort this out."
The evidence is stronger for CBD as an anti-seizure medication than for THC, he noted. “It doesn't mean that THC doesn't work for seizures,” said Szaflarski. “It just means that we have much less data because we've been studying this much less.”
Despite their utility, these products aren’t without risk, Szaflarski noted. The concentration of CBD in some products available on store shelves can vary from batch to batch. These drugs may interact with traditional anti-seizure medications, changing the amount of the drug found in a person's blood. And some studies have linked early THC exposure to lower IQs and behavioral problems.
But, Szaflarski noted, “the question is, Do these problems that we see that develop through the use of cannabis outweigh the risk of epilepsy?” For Alexis, the answer is clear: Her drugs are safer than having continued seizures.
A Violation of the Constitution
The government disagrees. It says marijuana has no medical applications whatsoever and is accordingly listed by the DEA as a Schedule 1 drug under the Controlled Substances Act, first passed in 1970.
That entire act is what Alexis, her co-plaintiffs and Hiller, her lawyer, are challenging. Hiller took the case pro-bono and has written a brief that, at 98 pages, is the longest of his career. The document lays out the basic reasons why he believes the act is unconstitutional. Specifically, the case claims the act violates Americans' fundamental right to travel, as well as the Commerce Clause of the Constitution and the First, Fifth, Ninth and 14th amendments.
Hiller believes the case could end up in the U.S. Supreme Court. It's impossible to say what the outcome of the case will actually be until a judge hears the arguments and makes a ruling. But while Alexis and her family wait for that outcome, they are on increasingly uncertain ground.
On January 4, Sessions rescinded the Cole memorandum, an Obama-era directive to U.S. attorneys ordering them to focus on prosecuting major distributors and more serious marijuana-related offenses, such as selling to minors. The Rohrabacher-Blumenauer amendment, renewed in December, is also set to expire on January 19. That amendment prevents the Justice Department from using its funding to keep states from implementing medical marijuana laws.
That amendment is likely to be renewed, Hiller said. Senator Elizabeth Warren has also announced plans to introduce legislation that could have the same effect as the Cole memo. But that’s little comfort to the Bortells—a family that just wants to help their child use the one thing that's worked for her epilepsy.
“No one else is living memo to memo or administration to administration,” Bortell said. “I don't think asking for my daughter to have that long-term plan for her life—I don't think that's asking too much."
This article has been updated to clarify the medical treatment Alexis received after her first seizure.