Charlotte's Web Medical Marijuana Bill Isn't Enough for Many Parents of Epileptics

Paula Crews, a suburban mom with short black hair, dumps a stick of butter into a double boiler and stirs in her secret ingredient. Her 24-year-old son, John, waits expectantly at the white Formica counter in their West Broward kitchen, watching while his mom mixes the butter into a pot of melted chocolate. Finally, she pours the candy into a rectangular mold and puts it in the fridge to cool.

A few minutes later, John pops a piece of his mother's creation into his scruffy face. In about a half-hour, the frat-boy archetype in a Guy Harvey T-shirt will be comfortably numb from the marijuana baked inside the homemade candy bar.

"And that's how you make chocolate with canna-butter," Crews concludes proudly. "That's my son's medicine."

Like parents of other epileptics, Crews was hopeful last month when Gov. Rick Scott signed the Compassionate Medical Cannabis Act of 2014, a bill that makes a mild strain of weed available to medically suitable patients like John. But many of the Republicans who supported the measure now admit they hope the law helps stall a full medical pot reform initiative on this November's ballot.

"Our mission was to provide just enough to let the sick people in Florida have access to a noneuphoric brand of medicine," says Sen. Aaron Bean, one of the bill's coauthors. "I absolutely do not support full legalization because it can widely be subject to abuse. We passed a bill that's tightly written — a baby step."

Crews, who asked New Times to change her family members' names because of the legal risk, believes the low-THC strain allowed by the bill won't be potent enough to make a difference for her son, who has subclinical seizure disorder. She's far from alone. An estimated 125,000 children in Florida suffer from severe epilepsy, and according to Crews and some experts, many kids might have conditions too serious to treat with the "Charlotte's Web" strain that's now legal in Florida.

The story of the Crewses, who have set up a veritable weed bakery in their kitchen, opens a window into how some parents must evade the law to keep their children healthy. "I realize I'm already risking my home and everything I've worked my entire life for," the IT specialist says. "But we have literally no other options."

Marijuana entered the doctor's office in 1992, when California activists successfully pushed for reform. Since then, 23 other states have followed suit, many experimenting with different models. In the Golden State, for instance, just about anyone with back pain can walk into a head shop and walk out with weed. In New Mexico, there are only three approved dispensaries, so medical pot is nearly impossible to get. Most recently, New York passed a reform law with one caveat: The medicine can't be smoked.

But a unique debate is taking place in Florida: A middle ground has been forged between all-out medical legalization and prohibition. It's centered on "Charlotte's Web," which has become a catch-all term for low-THC weed.

Six brothers in Colorado kicked off the idea in 2011 when they crossbred marijuana and hemp. The strain wouldn't get people high but would deliver some of the medical benefits of pot. In 2013, a Coloradoan named Paige Figi enlisted the Stanley brothers to help her daughter Charlotte. The 7-year-old was experiencing 300 grand mal seizures a month, and doctors recommended placing her in a medically induced coma. Instead, Figi used a low-THC oil created by the brothers.

In Weed, a CNN documentary that aired in January, Figi touted how the drug helped her daughter become active and vivacious. Her seizures dropped dramatically. And after the two-part series hosted by Dr. Sanjay Gupta aired, Charlotte Figi became the first poster child for low-THC medical pot.

Her story caught fire in South Florida this February when parents like Jacel Degadillo from South Miami and Seth Hyman from Weston lobbied to allow a similar strain in Florida. Three Republican lawmakers introduced a bill allowing pot modeled after the Stanley brothers' formula, with more than 10 percent cannabidiol, which can reduce seizures, but with only 0.8 percent of the THC that gets people stoned. The bill passed the Senate 30-9, with Gov. Scott signing it into law June 6. Beginning next January, five dispensaries will be allowed to sell oil made from the medicinal hemp.

If anyone should have been celebrating the law, it was the Crewses, whose story closely mirrors that of the Figis.

Born and raised in Davie to an IT specialist mom and a dad who owns a pest control business, John didn't speak until he was 5 or read until he was 9. He was sent to an autistic school. "He didn't do anything well," Paula Crews recalls. "He wasn't there and could barely communicate. He would just scream."

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Allie Conti was a fellow at Miami New Times and a staff writer for New Times Broward-Palm Beach, where her writing won awards from the Florida Press Club and the Society of Professional Journalists. She's now the senior staff writer at Vice and a contributor to the New York Times, New York Magazine, and the Atlantic.